tag:blogger.com,1999:blog-41332640553448081612024-02-07T12:10:37.809-08:00Your Curse is My MiracleMelindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.comBlogger42125tag:blogger.com,1999:blog-4133264055344808161.post-59840949661069829572018-07-13T09:52:00.001-07:002018-07-13T10:33:20.413-07:00ChangeI've never been very good with change. I like my world to be in order with routine being very comforting. Once I had kids, I realized that this was impossible. Once I had Noah, I realized that my nice, comfortable world had become like a tornado. I learned how to be flexible. I learned to "go with the flow". I learned things constantly change. I don't necessarily like it but that's life. <br />
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We have gone through many changes over the years. This year, our big change is Noah going to a new school. (I will post more on this later). In the past few years, the biggest medical changes were a new vent, a new pediatrician, and a new DME company. A few years ago, one of the doctors who diagnosed him left for Seattle. We were not happy but we still had our other two doctors and things were fine. Last year, the head of Pulmonary, the doctor who helped diagnose Noah, the doctor who comforted me while giving the diagnosis, the doctor who assured me Noah would be fine, the doctor who got him home before Christmas, the doctor I trusted to keep anesthesia in line and do his bronchs, LEFT. Now, we only have one doctor who I completely trust. Fortunately, we now only do the bronchs every other year so Noah will not have one this year. This will give us a year to figure out what to do, as I do not trust anesthesia at all. <br />
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Another big change is that the trusted RT, who is very good at his job, left the hospital. He still continues to work with our children's hospital but he's not there every day. At the last clinic, I was also told that there had been big changes to the DME company. The two people who ordered Noah's supplies and made sure we had what we needed, left the company. So now we have all new people at the DME, all new RTs at the hospital and we are left with only one doctor with CCHS knowledge. My anxiety is high. <br />
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This week, Noah had his annual sleep study, where they check his ventilator settings. Usually, we would do the study, stay in the morning until the doctor (the doctor who left!) came around and made ventilator changes if needed. Now, a doctor doesn't come around. We leave, wait for the study to be read and they call us with any changes. <br />
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I got the call yesterday. An unknown (to us) pulmonary doctor read the results and wants to change Noah's settings from 20 to 14. (a 6 point jump). Is this doctor familiar with CCHS? I have no idea. Most of the doctors I have found try to lump him in with normal ventilator patients like kids with CF or SMA. Regardless, I'm questioning such a large change. <br />
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The other issue is that I question the validity of our CO2 monitor. These monitors are very rare with home use. Most DMEs have not had any experience with them. We were fortunate to get ours upon Noah's discharge, although there was an issue where the doctors were thinking about not releasing him from the hospital until we got the machine. Thank goodness they let him go because it took several months after discharge to get the machine. We used it for a year. Then, Noah became sick. We kept checking his co2 and the machine kept saying it was high but not dangerously so. Using my instincts, I took him to the hospital. They checked his co2 and it was so high they admitted him. Our co2 machine had failed. That was the first time I realized we cant fully trust these machines. I made a call to the DME and they had to scramble around to get us another machine. We came home, used the machine and all was well. About a year and a half later, the machine started acting up and I called the DME. They informed me it should be calibrated but they couldn't do it because they were only suppose to supply the machine, not work on them. They had no idea what to do. Eventually, over the course of a year they got someone from the company who makes the machine to come to the house. He recalibrated it and said it was reading 20 points lower than it was suppose to be reading. So for over a year, when his co2 said it was at 30, it was really at 50. (When it hits 50, he is suppose to be on the vent 24/7 until his numbers come down. See how important this machine is??? Its the second most important piece, with the ventilator being first. We use the numbers from this machine to adjust his breath rate and pressure rate on the ventilator. When co2 is high, we bump him up and give him extra ventilation). After I found this out, I was livid. I informed them this was his life on the line and they needed to step it up. <br />
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Not much really changed. We continued to use the machine, although I didn't fully trust the readings. I used Noah as a gauge. I knew if he had a headache, acted more tired than usual and more lethargic, that his co@ could be up. The manager of the DME was able to get a calibration machine from the manufacturer and he came to the house once more to calibrate it. <br />
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Over the course of the next few years, the manager left the DME. The one person who knew anything about the co2 machine was gone. We have very few options for DMEs. Most do not do ventilators. Some do not take our insurance. We were stuck. <br />
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Flash forward to two years ago. Shortly after our move to the new house, we received a call from the DME that they were discontinuing our service. They were no longer going to have ventilators and they were no longer doing pediatric patients. In fact, they were bought out by another company altogether and were becoming a new company. They gave us a month to find a new provider and said they were going to come pick the vent up.<br />
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Our favorite RT, (the one who left) gave us the contact of our current DME. I called them, they came out with our new ventilator and setup. Miraculously, they were much better than our old DME. We were able to get a second ventilator, a better pulse ox and supplies were always on time. Most times, the supplies were correct but if they weren't, they sent what we needed the next day. Things were not backordered anymore and we were able to get saline bullets for the first time in years. <br />
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As for the co2 monitor, they informed us that we owned the one we had so we should just keep it and use it. I mentioned it at vent clinic every time we went but nothing was ever done. <br />
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Flash forward to present day. With the breath rate being so low, I need to be able to make sure his co2 doesn't climb too high. Our favorite RT now works for our DME company. This part is good. The bad part is that when he called me yesterday about the monitor he informed me that he had moved to Gulf Shores. So now, two of our 3 doctors and our RT who knows about CCHS are gone.<br />
As for the co2 monitor, he ordered new ones. He informed me that the downside is that even he does not know how to use them. They are suppose to be mailing us one and we will have to figure out how to use it. He informed me that the supplies that go with this machine (tubing, water traps, etc) should be sent every month with supplies. This does not give me much comfort in the fact that they don't know how to use the machine and now he's 5 hours away and can't come help us. He did tell me to call if I needed, which I most definitely will. <br />
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So, I am left with a doctor I don't know making changes to Noah's settings and a new machine that nobody knows how to work. I am strong and I will figure this out. It's so frustrating though. Just once I would like for everything fall into place and have no complications. It's beyond exhausting to deal with these machines, keep Noah alive, try to live as normal a life as possible, deal with a medical community that doesn't understand and watch trusted doctors and RTs leave. <br />
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Such is the life of a rare disease. I will update about the co2 machine once we receive it.<br />
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To be continued.....<br />
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Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com1tag:blogger.com,1999:blog-4133264055344808161.post-52153600953659848752015-08-13T07:14:00.002-07:002015-08-13T07:14:20.273-07:00A Better WayThe CCHS community is in mourning now. A young mother with two small children had CCHS. She somehow went to sleep without hooking herself up to her ventilator and passed away. I did not know her and had no interactions with her but somehow it has hit me hard. I can't imagine the pain her family is going through. <br />
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We work so hard when our kids are young. We fight for services, go through endless hours of lack of sleep, become nurses when we have no formal training, work tirelessly to keep our kids healthy and alive, even to the point of neglecting ourselves. Then they begin to grow up. We start letting go a little at a time. We send them to school. We allow them to go places without us. They grow up. Giving a vent dependent child their independence is extremely difficult. I know that one day I will have to let Noah go. He will leave our home and have his own home. This is the most terrifying thing. When our CCHS kids live with us, we control when they hook themselves up, we can hear the alarms and respond while they are sleeping, we drive them around in our cars. What happens when they grow up? They leave the house and are responsible for hooking themselves up at night, they are responsible for hearing (or not hearing) their alarms and responding, they are responsible for driving themselves alone. What happens if they fall asleep watching tv? or studying? What happens if they get in their car, have an accident and are knocked unconscious? All of us, at one time or another, have fallen asleep, whether it was during a movie, studying, or even when we weren't feeling 100%. Our kids do not have this luxury. One small mistake of not hooking themselves up. One small car accident. This could cause them to lose their lives. <br />
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As a fellow CCHS mom said, there has got to be a better way. Relying on these machines to live is terrifying. Machines fail. People make mistakes and neglect to hook themselves up. Our kids pay for it with their lives. This is what scares us CCHS parents. We need a cure. We need a better solution. We need to find a way to make our kids lives better. <br />
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RIP Lauren. May your family and friends find comfort in this difficult time. May your parents know that they did everything they could do for you. They are the heroes in that they let you live your life the way you wanted to live. They let you grow up. God bless you and your family. <br />
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As for the rest of the CCHS family, we continue to fight. We continue to look for answers. We continue to look for a better way. <br />
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(Special thanks to CCHS mom S. Yang for the inspiration for this blog and the blog title)Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com2tag:blogger.com,1999:blog-4133264055344808161.post-28181085492941948272015-08-07T06:43:00.001-07:002015-08-07T06:43:33.636-07:00The Ventilator ChangeDuring the month of June, Noah was admitted to the hospital to change over from the LTV 950 ventilator to the trilogy ventilator. This is our experience with the changeover.<br />
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On June 29, 2015 Noah was admitted to the hospital to receive a new ventilator. During this time, he also received his annual sleep study, his annual holtor monitoring and his annual neuroblastoma check. This was a very interesting hospitalization because he was not sick. During the day, he was allowed to roam the hospital and the nurses only checked in with us a few times since this was not the usual hospitalization. Ventilator training was extremely easy since we already knew how to work a ventilator (a more complicated ventilator). Going from the LTV to the Trilogy was an extremely easy transition. I realized very quickly that the Trilogy is an easier machine to work and also easier to transport places. <br />
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Here is a picture for comparison. The Trilogy is on the left and the LTV 950 is on the right. The Trilogy is much lighter. It has a handle at the top for easy transport. It is all digital. There are 4 buttons on the front. One is the power button, one is the silence alarm button and the other 3 are used to access the menu. There is the menu button in the middle and an up and down button on either side that is used to scroll through the menu. The LTV has many more buttons and menus that are hidden and hard to find. With the Trilogy, you just scroll through the options, hit select, make whatever changes are needed and then hit the ok button to accept the changes. It's extremely easy to work and change the settings. </div>
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Here is a comparison of the power cords. The Trilogy is on the left and the LTV is on the right. The LTV power cord was very heavy and bulky. The Trilogy cord is just the same as a laptop computer cord and it can be bought at any computer store. <br />
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Here is the battery comparison. Trilogy is on the left and LTV is on the right. The Trilogy battery stays in the back of the ventilator so it is always charged. The LTV battery is a lot bigger and heavier and needs its own power cord to charge. </div>
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The circuits are different as well. Trilogy is on the left and LTV is on the right. The Trilogy has one tube in the circuit while the LTV has 2, one of which is the PEEP valve. The PEEP is built in on the Trilogy. When setting up the circuits on the LTV, we always had to do a leak test. There is no leak test with the Trilogy. </div>
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As you can plainly see, the Trilogy is lighter, easier to use, and more easily portable. We were able to eliminate a huge power cord, a ventilator stand (the Trilogy is flat and doesn't need a stand), extra batteries, cords for the extra batteries and a long bulky circuit. Another huge plus is that there are no unnecessary disc sense alarms. Before with the LTV, the circuit had to be placed a certain way. If it were turned upside down, then it would collect water and alarm. This does not happen with the Trilogy. There is also no autocycling. Over the course of the night, water would collect in the LTV circuit, causing Noah to breathe very fast and pulselike. We would have to get up several times a night and drain the water. This does not happen with the Trilogy. We have less vent alarms overall. The only major issue was that Noah had a pretty big leak around his trach. We compensated for this with the LTV by turning off the low min volume alarm. However, we can't do that with the Trilogy because this is the main alarm. Instead, we upsized his trach from a 3.5 to a 4 and we lowered the alarm rate. This helped tremendously. He is still able to talk well with the larger trach. </div>
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The sleep study at the hospital was very awkward. This was done in his room. The sleep technician sat beside his bed the whole night. Neither I nor Noah got much sleep. She sat there with her little light and her computer. We heard her typing, shuffling papers, moving around in her chair, and her cell phone vibrating. In addition to this, there were people in and out of the room all night. The next day, the RT informed us that the sleep study wasn't "great". I told him of course it wasn't because we did not get any sleep. Noah is not use to having someone sit beside his bed all night. I'm so glad we never had nursing because this would have driven us nuts night after night. Regardless, they were able to get some numbers. We increased his breath rate a little but he basically has the same settings that he did with the LTV.</div>
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After one night in the hospital, Noah was released. The first night at home was interesting. I was so accustomed to the louder noise of the LTV. The Trilogy is much quieter. It took a few nights to adjust to the quiet. He alarmed quite a bit so I adjusted the alarms. The next night was much better. </div>
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Overall, the changeover from the Trilogy to the LTV was one of the best changes we have made. The only negatives that I see are that the Trilogy goes through a lot more water. We would go 3 days using one water bag with the LTV. Now, we pretty much go through a bag of water a day. Also, the Trilogy has a whisper valve that the LTV does not have. The valve is near his chest. I find that he covers it up with blankets or his bear, causing it to alarm. I think it would work better if the valve was located towards the bottom of the circuit, similar to where the PEEP valve was on the LTV. As I stated above, the quietness of the Trilogy was also a small negative but we have adjusted to it now. </div>
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I highly recommend the Trilogy over the LTV. It is more portable, easier to use and much quieter. Our next step is to transition from the trach to a mask. This transition will probably take a lot longer or even not at all. Noah hates masks on his face. I firmly believe it's because of the "smelly masks" they use for the bronchoscopies. He doesn't even like Halloween masks on his face. We are not going to push the issue. As long as he is happy with his trach then that's what he will use. We definitely want him to have some control over his care. Maybe one day, there will even be a smaller, better ventilator than the Trilogy. </div>
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Bye Bye LTV. Thanks for keeping him alive for 5 years. </div>
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Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-32978252106202160962015-04-30T09:17:00.001-07:002015-04-30T09:23:23.756-07:00We are the Weeds I will never forget the news I received in June 2009. I was hugely pregnant with Noah. We had just completed our annual one week vacation at the beach and were returning home when my phone indicated that I had an email. Being bored while Chris drove home, I opened my email and my heart sank. The email was from our good friend Kevin. He explained that he had gotten the news from the doctor that he had been diagnosed with cancer. He went on to explain the events leading up to his diagnosis and explained the prognosis, which was good. We were shocked and saddened. The Weeds (see my explanation below) rallied around him and began sending messages of love and encouragement. <br />
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Shortly after his diagnosis, Noah was born. Unfortunately, we found ourselves dealing with our own family health crisis. The Weeds rallied around us this time and brought meals, love and encouragement. One day at church, we were presented with a special gift for Noah. Kevin and his family had a shirt made. On the front, were the words The Mighty Noah and on the back were the words Trach This. Kevin had given Noah his special nickname and his first trach this t shirt. Throughout the whole 4 months Noah was in the hospital, Kevin constantly asked about him. He was always concerned with his progress and when most people's interest was only polite, Kevin's was genuine. When finding out about CCHS he asked us so many questions. Later, when Noah was released from the hospital and we began all of his therapies and had all of his swallow studies, Kevin wanted to know all about it and seemed genuinely interested. He didn't just listen. He asked questions and seemed eager to learn about CCHS. <br />
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Noah's first outing after being released from the hospital was our annual Weeds Christmas party. Kevin was so excited to see Noah in person for the first time. He held him and talked to him. Throughout Noah's life, Kevin was there, commenting, showing interest and loving Noah. <br />
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Flash forward 6 years later and we are attending the church for Kevin's memorial. There was much sadness but in the midst, much happiness for the fact that we had been his friend. He will always be remembered as a fighter, like the Mighty Noah. His love for his family was deep. His love for his friends was evident. He will always be one of my favorite people. One of my most favorite memories of him was shortly after Noah was born. I was in the midst of travelling to the hospital twice a week for Noah's therapy and had many endless sleepless nights. Our friends were still there but they didn't really ask us to help with anything for fear of intruding. I was removed from a committee at church, which was fine and I know it was meant as a kind gesture to help us. But, it made me feel somewhat isolated and not as useful as I had previously been. During this time, Kevin asked me to make dinner for his family. His wife was having some kind of procedure and he wanted dinner for his girls. I was so excited. Yes, it was a pain to take Noah as an infant to the store and get the stuff, come home, and make it. But it was the best feeling ever. Someone needed me to do something and it made me feel "normal" again. Kevin did not let Noah's condition stop him from including us. I will forever be grateful to him for that. <br />
<br />
Kevin was always there with a ready hug and his big smile. Sure he could have a potty mouth and he was very strong in his opinions but he was one of the good guys. He leaves behind a whole community of mourners. His wife and his 3 young daughters will certainly feel his loss more than anyone. But looking around the church at all the people paying their respects shows the type of man he was and how much he was loved. I saw a whole row of his coworkers, I saw former college class kids that were now grown up adults (Kevin taught a college age Sunday School class), I saw youth that were now grown (he was also the Youth Minister for several years), I saw older church members, I saw rows full of the girl's soccer team who had come to pay their respects. People of all ages were there, remembering him and celebrating him. <br />
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I sincerely hope he realized how much he was loved. I deeply regret that we didn't spend more time together. I think my husband said it best:<br />
<br />
Father, Husband, Son, Musician, Follower of God, Bozo the Clown, Jesus Impersonator, Blogger, Advocate, Athlete, Fighter, Runner, Fantasy Football god, Manager, Youth Director, Leader, Football Fan, McRib Lover, Teacher... The list goes on but I am most glad that to me he was always a Friend<br />
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. <br />
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Kevin and The Mighty Noah<br />
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<img alt="" aria-busy="false" aria-describedby="fbPhotosSnowliftCaption" class="spotlight" src="https://scontent.xx.fbcdn.net/hphotos-xft1/v/t1.0-9/11151011_10204396851584659_6600676046414654744_n.jpg?oh=a43579b52e48fee4ff3a6d7e77ac992a&oe=55CFAF77" style="height: 501px; width: 501px;" /><br />
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<img alt="" class="fbPhotoImage img" id="fbPhotoImage" src="https://scontent.xx.fbcdn.net/hphotos-xaf1/v/t1.0-9/26511_1258223618994_4285109_n.jpg?oh=4f4fffb56f0901d70d0ac2a960537d1c&oe=55CDF096" /><br />
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<br />
Kevin had a blog. Below is my all time favorite blog that he wrote. The whole blog can be found at <br />
<br />
<a href="http://kevinmichaelokelley.blogspot.com/2009/12/color-of-urine-2009-year-in-review.html">http://kevinmichaelokelley.blogspot.com/2009/12/color-of-urine-2009-year-in-review.html</a><br />
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My favorite passage that he wrote is this:<br />
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i am not very well versed on being the victim of a curse. perhaps, you don't know that you are, in fact, cursed until you come out the other side. let's take a look at certain proverbial stones that struck the heads of the weeds class in 2009.<br />
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cancer.<br />
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the death of a husband/father/friend.<br />
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the celebration of a newborn child tempered by the realization that something is amiss.<br />
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the passing of the mother of one of our emeritus members.<br />
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why did all of this happen to us? was it because we didn't get along very well with the previous pastor and he has used his black magic, upon leaving, to ruin our lives? well, that's my theory, but i am rarely (and by "rarely" i mean usually) right about anything.<br />
<br />
were we just unlucky? maybe in some terms. in others, though...<br />
<br />
i lost a kidney, but not my life.<br />
<br />
our class was blessed with healthy twins and a fighter in the mighty <span class="blsp-spelling-error" id="SPELLING_ERROR_56">noah</span> that will make all of us, most especially his incredible parents, better human beings.<br />
<br />
one of us was a serviceable lay leader.<br />
<br />
one of us rejoined our church's staff.<br />
<br />
one of us will manage our facility with a strong, yet humble, hand.<br />
<br />
one of us (with the help of the rest of us) will always make <span class="blsp-spelling-error" id="SPELLING_ERROR_57">vbs</span> rock even if she says this year is her last year.<br />
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one of us is now a city councilperson and can get me free stuff (oh yeah, and change her church AND her city for the better)<br />
<br />
one of us continues to make our daycare a place worthy of a waiting list.<br />
<br />
one of us championed our children, challenged our council and then led the way by shepherding our many faces of our future, herself.<br />
<br />
one of us will bring our worship technology into the current <span class="blsp-spelling-error" id="SPELLING_ERROR_58">millenia</span>.<br />
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one of us will set an example for all our of church's mothers through the trials she has and will continue to overcome at home.<br />
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one of us, with his "questions", got this ball rolling.<br />
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were we cursed after <span class="blsp-spelling-error" id="SPELLING_ERROR_59">june</span>? as far as this blog was concerned, um, yes. absolutely.<br />
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in reality, crappy things happened, but lessons in perspective through the victories that we enjoyed together will forge, for us, a brighter tomorrow. that's a promise.<br />
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good riddance, 2009. don't let <span class="blsp-spelling-error" id="SPELLING_ERROR_60">propaghandi</span> hit you on the way out. because they <em>will</em> hit you. hit you in the face with my best record of the year.<br />
<br />
2009...<br />
<br />
the end of my world as i knew it.<br />
<br />
<br />
<br />
Our Sunday School class is called the Weeds. Weeds are strong and thrive even in harsh conditions. Weeds are scattered everywhere. Weeds are beautiful in their own way. I think this is a wonderful way to describe Kevin. Even though he was facing a terminal illness, he handled it with bravery. His wife, Sarah, is so strong and stood by him through it all. Rest in peace my dear friend. Know that your girls will always have someone to go to if they need it. <br />
<br />
To Tanya and Donald, Brad and Kathy, Deborah, Kim, Kevin and Sarah, and Chris and myself, Donna, (and even Katie and Chris later on). We will always be the Weeds. May we honor Kevin's memory, love and support his family and live our life to the fullest until we meet him again. #ftcs. <br />
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<br />Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-45777508303096782292015-01-08T07:08:00.000-08:002015-01-08T07:08:23.125-08:00This Gets Easier---Or Does It?When Noah was first diagnosed with CCHS I spoke with several CCHS parents and they all told me one thing--it gets easier. I really doubted them but now I understand why they told me that. <br />
<br />
Noah's first year was filled with appointments. Twice a week I loaded him and his equipment (no nurse available to help) by myself and went to his therapy at the hospital. In addition to this, I also had to take him to all of the normal first year well check ups. We also had to coordinate his speech therapist, occupational therapist and his physical therapist to come twice a month to our house for home visits. Looking back, I wonder how I did all that alone. It was definitely not easy. <br />
<br />
Travelling was also an issue. We could not go anywhere without the vent. As an infant, he would fall asleep at any time so we had to make sure his vent was with us, even if it was just a short trip to the store. Definitely not easy. <br />
<br />
I can see now, that the older he gets the easier it can be. We no longer pack the vent up to go places around town. He no longer has the home therapies and we do not frequent the hospital as often. In this respect, it has gotten easier. But, now we are facing other issues. <br />
<br />
School is a big issue. Do we keep him in private preschool where I will have to go with him everyday or put him in public where there is a chance that they have no idea how to care for him in an emergency. I realize that these school nurses are suppose to know what to do but it's hard for me to believe that they can care for him when his condition is so rare. Even the nurses at Children's Hospital have never heard of CCHS. They refer to me and ask a lot of questions. So how can a school nurse really know what to do? Plus, the children in his pre K class accept him. There is no bullying or making fun of him. I'm sure at some point in the future this will not be the case. He is going to have to deal with being "different" and I can only hope that he has surrounded himself with good friends and not care what anyone else thinks. In this respect, I think its harder. <br />
<br />
I know that there are going to be many more issues that arise as he ages. At some point, he will want to be self sufficient. How can he do that if he doesn't even hear the alarms going off when he's asleep? What happens if he's driving and is in an accident where he is knocked out? What about college? He's not going to want his mommy there to hook him up every night.<br />
<br />
All of these (plus some I probably haven't even thought of) makes me think that it's not necessarily easier as he grows. I think it gets harder. I suppose we just take it one day at a time and figure it out as we go along. <br />
<br />Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-20937240436371729252014-09-05T20:31:00.000-07:002014-09-05T20:31:24.205-07:00For the NICU Mom<div style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px;">
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To the NICU mom. I see you. I get it. 5 years ago I was in your shoes.<br />
<br />
The day of your child's birth. It's suppose to be a magical day but instead turns into a nightmare. One minute you're holding your baby in your arms and the next minute they are wheeling him to the NICU. Some of you don't even get the chance to hold your baby before he is carried off in an incubator. Instead of holding, feeding and loving your child your days are reduced to short visits by his bedside. Nobody visits you and you don't want any visitors. Nurses basically leave you alone and when they come to your room they have a sadness in their eyes and speak to you in hushed tones. Your eyes are perpetually red from crying. There is a dark cloud hanging over you. You can't eat. You can't sleep. You go through the daily motions of life but you are numb.<br />
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You walk in to the nicu. You would expect that a room full of babies would be loud. You'd expect to hear baby cries, coos, hear the babies moving around. But there is none of that. All you hear is the soft sounds of machines. Hear the occasional beeps of a monitor. It's completely silent.<br />
<br />
As you look at your baby, you see him covered in wires. He lies completely still and looks like an alien. You wonder what happened. Was it something you ate. Something you did or didn't do. Your husband is there too. When you look at him you feel his sadness but he is trying to be strong. Men aren't suppose to show emotions but you see how much this is tearing him up inside. He's doing his best to comfort you. But you can't be comforted.<br />
<br />
The nurses are respectful. They explain everything that they are doing. They give you updates. But it's not the same. YOU are suppose to be feeding your baby, changing his diaper, rocking him to sleep. Instead a stranger is watching him. They know his needs. They are his caregiver. You feel like a failure and a bad mom.<br />
<br />
As you spend your days there, you watch other babies come and go. You see the happy parents as they put their baby in the car seat to leave. They look at you with pity and sorrow. Then they turn around and walk out of the room with their baby. They are going home. You are not. You feel a lot of envy. Then guilt because really do wish them well.<br />
<br />
You worry so much about bonding with your baby. You hear the experts say how important it is to bond. How can you bond with a baby that is covered in tubes and wires? How can you bond with a baby that has to live in the hospital while you live at home? How can you bond with a baby who is always asleep every time you visit? How can you bond with a baby when they won't even let you hold him?<br />
<br />
You have other children who need you so you leave your baby in the hands of strangers and head home to your other children. You put on a brave face and try to act like everything is normal. You go through the routine of cooking, eating, homework, hanging out at home all the while knowing someone is missing. Your body is at home but your heart is at the hospital. You don't show your other children your tears because it will scare them. You put them to bed at might and allow yourself time to grieve. You're grieving for the baby who does not have a diagnosis. You're grieving for the happy time that families have in the hospital after a baby's birth. But you have no good memories. No first pictures. No happy visitors to your home. No chance to dress your baby in the cute little clothes that still sit at home. The baby needs no clothes only a diaper. By the time your baby comes home he will have outgrown those cute clothes.<br />
<br />
Every time the phone rings you jump. You race to see if it is the nicu calling. You really begin to hate that place. You know you need to be there but you really hate to go. You wonder why you even bother because all you do is sit by your baby's bed while he sleeps. How is he going to know if you are there or not? But you go. You make yourself go because some small part of you hopes that he hears your voice and feels your touch. You pray that he knows you're his mom and that he know you love him. Most of all you hope he knows how sorry you are that he has to stay there.<br />
<br />
You wait for a diagnosis. The doctors tell you the tests they have done. Everything comes back normal. You are relieved but your patience is wearing thin. Why can't they figure out what's wrong? With all of his technology why is it taking so long? Then the day arrives. As you visit your baby all of the doctors and nurses gather around. Their faces are somber. Nobody is smiling. Your heart clinches in fear. The doctor says what you have been waiting for but dreading to hear. You have a diagnosis. You hear the diagnosis and your heart breaks into a million pieces. You crumble and your husband reaches out to support you. You cling together as the doctor keeps talking. But you don't really hear him at first. There's this roaring in your ears. You feel like you are outside of your body. Then you start to calm down and focus on what they are saying. You hear the words "home" and "he's going to be fine" and you begin to feel a little hopeful. You begin to realize that the other doctors were wrong. Your son will not live in an institution. He will come home. It will take a long time and you will have to have a lot of machines to keep him alive but he tells you the magic words "YOU" will care for him at "HOME". The diagnosis is terrifying. You're so very sad that this will be your child's life from now on but there is a great relief in knowing what's wrong. Now you have a plan. Now you can work towards getting him home. There's a light at the end of the tunnel.<br />
<br />
I am here to tell you that you can do it. You're stronger than you think. Life will never be "normal" but you find your own new "normal". You will come out of this a stronger more compassionate person. You've been changed forever. Not many people have been through what you have.<br />
<br />
As you sit at home and hold your baby you realize how precious life is. You see how much of a fighter your baby is and he becomes your hero. He's so strong and you know that he can handle whatever life throws at him because he's been through the darkness. Occasionally you will be brought back to those dark days. You will smell hand sanitizer and be reminded of the hospital. You will see a mom somewhere in public holding her newborn baby and have some regrets that it wasn't the same for you. Your baby didn't get to wear the cute clothes. Your baby didn't get to have a first photo. Your baby didn't make a sound for a very long time. But you realize that none of that matters now. All that matters is that your baby is home where he belongs. You have finally bonded and your bond is unbreakable. You and your baby have come through hell and your love is fierce for one another. Now the little baby begins to grow and only wants you. Nobody else will do. You never tire of the baby clinging to you. You never complain about the sweet little boy who has grown up to make lots of noise. You embrace every hug, every kiss, every I love you. You even embrace the messes, the noise, the times you have to send him to the corner. You secretly love it when he's disobedient because that means he's alive and living his "normal" life. You embrace all of it because you know how precious it is. You enjoy every little moment.<br />
<br />
Hang in there NICU mom. One day you will look back on this experience as a bad dream. There is hope. You're not alone. You will get through this. </blockquote>
Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com4tag:blogger.com,1999:blog-4133264055344808161.post-12163899258226157102014-08-25T22:41:00.001-07:002014-08-25T22:41:07.502-07:00A Year in Review--The Fourth Year<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKQ1VkQb1hdwR-Ojw7ei7YDC4OsT_ev4VPEKTM9uk57nG5sziwCnkzk67Rwx08MWciKp9wS1v9Io9Ug_EbuoGV_utSV-Cpd8FV-tcL3wzoOXpEJEdFetkTkXjVclzsdivb-fSYp0Ole3T8/s1600/IMG_2962%5B1%5D.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKQ1VkQb1hdwR-Ojw7ei7YDC4OsT_ev4VPEKTM9uk57nG5sziwCnkzk67Rwx08MWciKp9wS1v9Io9Ug_EbuoGV_utSV-Cpd8FV-tcL3wzoOXpEJEdFetkTkXjVclzsdivb-fSYp0Ole3T8/s1600/IMG_2962%5B1%5D.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Noah enjoying his birthday cake </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh85mGcgbQlMMfsd3LcsnNMS0VU5920QK6GY4gdjbShkX5_uLsQSCuSP4QkmFtofgkYPx7H5RfHZ8N8WV-kctKyemWY5_6Cmsfxob8VeI0fDKcFv01pT4Y6FCS_XTDKNA0_RVAbYryJZVQK/s1600/IMG_2942%5B1%5D.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh85mGcgbQlMMfsd3LcsnNMS0VU5920QK6GY4gdjbShkX5_uLsQSCuSP4QkmFtofgkYPx7H5RfHZ8N8WV-kctKyemWY5_6Cmsfxob8VeI0fDKcFv01pT4Y6FCS_XTDKNA0_RVAbYryJZVQK/s1600/IMG_2942%5B1%5D.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Noah at Chuck E. Cheese</td></tr>
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Today is Noah's 5th birthday. I cannot believe that another year has passed so quickly. It seems like just yesterday we were learning about CCHS and ventilation and now we are moving onto kindergarten and investigating other ventilation options as he grows up. This past year was a really good year. He has really done a lot of growing up this year. Noah is very bright and constantly asking about everything he sees and hears. He loves to tell everyone what he knows about his surroundings including all of the colors and numbers. The best part from a medical standpoint is that he had no real medical issues this past year and has been very healthy and stable. <br />
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We began the year by attending speech therapy at the elementary school twice a week. He made such good progress that we were able to drop a therapy and only attend once a week. His vent clinics went very well. Noah's annual bronchoscopy was uneventful, which was a tremendous blessing given all of the turmoil that we had after the previous one. No granulomas were found and there were no other issues. His annual sleep study went well. Everything was in the proper range and no ventilator settings were required. He also had his holtor monitor (heart monitor) and neuroblastoma screening, which were both normal. <br />
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This year was the year of travel. With both his sisters playing travel volleyball, we were on the road most every weekend during the season. We went to Tennessee, Georgia and several places here in Alabama for tournaments. Noah became the unofficial assistant coach of the team and loved having 12 girls and their coach making him a part of the team. During the summer, we spent a lot of time at Gulf Shores because his oldest sister played sand volleyball. We had so much fun spending time at the beach. Noah loved playing in the sand and the water. We purchased a pop up canopy that was large enough to cover all of our beach chairs. We filled a large cooler with water, snacks and drinks and spent the days on the beach. Fortunately, the summer was fairly mild and it never got too hot during the tournaments. As an extra precaution, I took a squirt bottle filled with water to squirt around the trach in case he got sand there but with the flextend trach, I really didn't need it. I just put him in a swim shirt and tucked the trach under the shirt. It worked very well. I had to be very cautious with the heat and make sure he didn't get too hot. He got very tired of me telling him to take a drink every so often, he just wanted to play in the sand. <br />
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Noah had a really great time this summer at Vacation Bible School. He really began interacting with the other children and actually participated in the activities. He was very reserved last year so it was very encouraging to see him branching out socially. It's so funny watching him. He is very decisive and will tell them if he doesn't want to do something. His personality is adorable. He made several new friends at VBS and invited them to his birthday party. <br />
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Another fun thing Noah did was to ride on Thomas the Train. He loves trains and every year Thomas comes to visit our local train station. They have a lot of fun activities related to trains. He was very excited to be able to see Thomas. <br />
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Noah was also able to spend the night with his Nana and Poppa. They have kept him a couple of times this past year and have done fantastic with the vent and trach care. It was a huge step for them and for us. It has been fantastic for him to do the things that "normal" kids do and spend the night with his grandparents. He loves staying there. The spoil him terribly and he loves every minute of it. Every time we go over there he asks when he is going to get to spend the night with them again. <br />
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We recently had his birthday party at Chuck E. Cheese. He invited several of his friends and a lot of family. We spent the day playing games, eating pizza and cake and visiting with friends and family. The noise level was little overwhelming for him at first but he quickly recovered and had a great time. <br />
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Noah has also began 4K this year. Currently, he attends twice a week from 9-1 at a local church based private kindergarten. Because it is a private school, they do not have a nurse so I attend with him. I stay in a room upstairs in case I am needed for a medical issue. His starting school has not bothered me as much as I thought it would. I guess its because I don't actually leave him. I am on the premises. Next year will be a whole different story. He will be attending every day all day. The teachers and staff there have been fantastic and do a great job of watching him and making sure that he is ok. They brought him to me once to check his trach because he had some nystatin powder around his neck. We use the powder every night when we clean the trach. They noticed some clumped up around the stoma and wasn't sure if it was a concern or not. Now our other big decision is whether to leave him at his current preschool (which he loves) or put him in the public schools 5K program. When we move him to public school, we will have to go through all of the negotiations with the school on nursing and Noah's care and what will have to be provided as a result of his condition. I would prefer to leave him where he is now but if he went public, they would be required to have him a nurse and I could actually leave the school, which would be nice. I think that it will be a fight to get what we need with the public school. I'm not looking forward to that part of it. <br />
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Watching him grow and change has been such a blessing. It is amazing to see how far he has come. 5 years ago I saw him being wheeled out of my room in an incubator going to the NICU. I observed him with tubes and wires poking out of his body. He never made a sound. Now I see him talking constantly, playing in the sand, swimming in the pool, aggravating his sisters and I marvel at how strong he is, how much of a fighter he can be. He is an amazing mighty little man and I am so blessed to be his mother. They told me he would be in an institution the rest of his life. He continues to show them just how wrong they were. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi58Hum_MWQiy1Lbk9WEQX_iFyrBG8d1kZhYeJzWSpBO1qxxdYo6sKkpUEiIQ2Po0wEeyFumyqddECK8LfSNeo2m_kXGrIkWJpyDnSlTkSSLnq1docCBygf2KlKxSUv-QMc2TdLjp9Hsgne/s1600/IMG_2968%5B1%5D.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi58Hum_MWQiy1Lbk9WEQX_iFyrBG8d1kZhYeJzWSpBO1qxxdYo6sKkpUEiIQ2Po0wEeyFumyqddECK8LfSNeo2m_kXGrIkWJpyDnSlTkSSLnq1docCBygf2KlKxSUv-QMc2TdLjp9Hsgne/s1600/IMG_2968%5B1%5D.JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Noah after his trach surgery</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Noah's first birthday</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Noah's first birthday</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Coach Noah and the volleyball team</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Noah and Thomas the Train</td></tr>
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Happy 5th Birthday my Mighty Noah. Mommy (and Daddy) are so proud of you. </div>
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<strong></strong><br />Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-64196337618823683662014-08-21T09:08:00.001-07:002014-08-21T09:08:40.330-07:00Do You Really Need a Nurse?I belong to several trach/vent support groups on Facebook. One of the most talked about issues is nursing care. Some of these women have hit my last nerve. So here goes. <br />
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Noah has never had nursing. Our insurance doesn't cover it and there no way we could afford to pay for nurses out of pocket so nursing has never really been an option for us. That being said, I know that some people need nurses. Maybe their child is extremely vent dependent., maybe they work outside the home, maybe they are a single parent. For whatever reason, nursing is necessary for them. I get that. But what I don't get is these moms who don't seem to know how to care for their child. The moms who won't step foot outside their house during the winter, ones who are scared of using candles or perfume or having pets, ones who do not take their trached children to the beach or the pool. I understand it's necessary to be careful but these kids need to experience LIFE. They need the sand on their toes and the sun on their face. They need to go to parks, zoos, movies, restaurants and experience all that life has to give. I will be the first to admit how hard it is when you have to carry a ventilator, pulse ox, go bag and your baby. It took me several trips to the car just to get stuff loaded. It's a hassle for sure but one that is worth it. I feel so sad for these kids who are stuck at home and don't get to do anything. <br />
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I've heard all the reasons for having nurses. <br />
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"It's safer to have someone watch your little one 24/7". <br />
"Having a nurse at home is a must"<br />
"You are a mom". (Not a nurse)<br />
"There are no second chances for mistakes"<br />
"You need sleep"<br />
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Yes I am a mom but I am also a chef, chauffeur, teacher, laundress, secretary, and nurse. Every mom is these things. Special needs mommies just have more of the mommy nurse role. No, there are no second chances but there's no second chances for anyone. Yes, I do need sleep but so do all the mommies of newborns and daddies who work night shifts. No, having a nurse at home is not a must. We have done just fine for the last 5 years without one. As for 24/7 watch, how would you like if someone sat beside you every day all day watching your every move. There's no privacy. <br />
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I really do get that 24/7 nursing is important for some people. I'm afraid, though. that these moms are becoming too dependent on other people to care for their child. They don't know how to do trach care, they don't bathe their own children, they rely on these nurses to handle all of the medical issues (trach care, suctioning, trach changes, vent alarms, etc.) This is dangerous! A few months ago a little boy died because his nurse did not know his trach was out!!! These parents lost their child because a NURSE was not properly trained. Just because someone has a nurse's license doesn't mean they know how to care for our child. Not to mention, all of the schedulelng conflicts, nurses sleeping on the job, messing up the house and the lack of privacy. <br />
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If you have nursing and love them then I'm glad. All I'm saying is that you need to be sure, completely 100% sure, that you can take care of your child's medical needs yourself. Don't be afraid to do this. It's your child and nobody knows that child better than you. Don't be afraid to ask questions. Build up a list if resources you can contact if you're not sure of something. Don't listen to the people who say it can't be done. It can. It's just takes a lot of effort, planning and learning. I just don't want trach/vent moms to be scared of their own kids. They are just kids, they just need a little extra help. Do not be afraid to rely on yourself. Trust your instincts. Please, whatever you do,<br />
don't condemn those of us who don't have nurses. Our children are not in any more danger than yours.<br />
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I am so blessed that our hospital trained me so well. It took several months but by the time I left the hospital with Noah, I knew how to care for him completely. No, I am not a licensed nurse but I do know the nursing skills needed to care for my own child. Our pulmonary team made sure we had the right training and the confidence to handle things ourselves and for that I will be forever grateful. <br />
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<br />Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com2tag:blogger.com,1999:blog-4133264055344808161.post-64359897294986739582014-08-10T21:49:00.001-07:002014-08-10T21:49:47.235-07:00When Our Best Isn't Good EnoughThe CCHS community has suffered yet another loss. A little girl named Sloane lost her battle with CCHS. Her parents did all the right things, took great care of her but yet it still wasn't enough. <br />
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We take such careful care of Noah. We go to all of his checkups, get all of his vaccinations, do all of the yearly tests, read as much as we can on his disorder and do everything we can to make his life as normal as possible. But there is always that fear. The fear that our best isn't good enough. Noah has a mild mutation of 20/25, which means he doesn't have as many problems as some of the higher mutations. But that doesn't matter to me. The risk is still there. <br />
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My greatest fear is that Noah will have a heart pause. We have lost several CCHS kids to heart issues. Noah has yearly holtor monitors to test for this. However, as his doctor has told us, CCHS is a brain issue, not a heart issue. He could have a holtor monitor for 3 months and the next day after he has had it removed, he could have a pause. Because its a brain issue, it can happen any time. There is no rhyme or reason. <br />
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My other concern is the development of neuroblastomas (cancer). One sweet CCHS boy was tested every 6 months but he still developed neuroblastoma and lost his battle also. Noah gets tested once a year for this. Is this enough? I don't know. <br />
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The CCHS community is small. However, we are close. When one family cries, we all cry. Our children have so much in common and even though they are fierce warriors, they are still fragile. Sometimes we forget that. We try to go about our daily lives as normal as possible, not dwelling on the possibilities of this crazy disorder. We live our lives doing the best that we can, doing all of the right things, but still sometimes that is not good enough and we have to live with that. <br />
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<u><strong>In memory of our brave CCHS warriors</strong></u><br />
<strong>Sloane</strong><br />
<strong>Landon</strong><br />
<strong>Tim</strong><br />
<strong>Brielle</strong><br />
<strong>Lucy</strong><br />
<strong>Allison</strong><br />
Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-77712611874788752792014-06-03T09:58:00.000-07:002014-06-03T09:58:14.031-07:00Decisions<br />
One of the first decisions we had to make was whether to trach or use a mask. For us, it really wasn't much of a decision. We felt that a trach would ventilate Noah better and be more comfortable for him. Now that he is older, we have to decide if we want to decannulate and go with a mask for ventilation. There is a lot of things to consider before doing this transition. First, we would have to completely change ventilators, going from an LTV 950 to a Trilogy. This would involve at least a 3 day stay in the hospital where we would have to learn how to use a whole new vent and make sure that Noah could get adequate ventilation from this new system. Then, we would have to get him use to wearing a mask. This would involve getting him one to use while watching tv, playing, and wearing it at various times during the day to acclimate him to the feeling of a mask. During this time, we would have to make sure his CO2 stays within the correct limits. Once he has acclimated to a mask, we would then find the right one for him. After finding the right mask, we would then let him use it while sleeping and schedule a sleep study to make sure his numbers are good while using the new setup. Then, decannulation would occur.<br />
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We have mixed feelings about decannulating. I would love for him to be rid of the trach. No more trach care and swimming while going under the water are two huge advantages. The disadvantages would be the long process of switching over to a new vent and getting him to wear the mask. Plus, the trach is a visual reminder that something is different about his health. Once the trach is gone, there is no way for people to see that he has any health issues, which could possibly make them less careful around him. We would also have to change the way we check his CO2. We would more than likely lose our Medicaid help. We would not have all of the trach supplies, but would still have to have the equipment (the ventilator, CO2 machine, Oxygen and the pulse ox). Insurance does not cover all of this completely and we would have to spend more out of pocket to keep all of these machines. It is going to be a very long process.<br />
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Another decision we have made is whether to do the diaphragm pacer surgery. This was not that difficult for us to decide. This is not our decision to make, it is Noah's. A diaphragm pacer would be implanted on his diaphragm. This device would be used in place of a ventilator. At first, it sounds like a perfect idea. So what are we waiting for? I have read that there is a small chance that his diaphragm could be damaged during the surgery, causing him to require 24 hour ventilation. I realize that the surgery has greatly improved over the years and the chance is small, however how in the world would we be able to live with ourselves if our decision caused our child who is only ventilated about 8-10 hours a day during sleep to be required to be ventilated 24 hours a day 7 days a week for the rest of his life. At this point, we are not comfortable making that decision for him. This is an invasive surgery and I have mixed feelings about doing this. We are not willing to take the risk. As he gets older, I am sure he will have questions and have his own ideas on how to take care of himself. My job is to present him with the information and help him make an informed decision. <br />
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One of the big decisions we face now is school. Noah is extremely bright and loves to learn. I know he would do well in school. The problem is having experienced people there who know what to do in case of an emergency. I really do not like the idea of me going with him and sitting there all day, every day. My goal is to make him more independent and realize that there are other people who can take care of him. I am having so much trouble trusting people with his care. It terrifies me that even the most experienced hospital personnel have never heard of CCHS and really do not understand the seriousness of the disease so how is the school system suppose to be able to handle this? I can train them and explain things to them but ultimately I know that something is going to happen at school that could possibly endanger him. A simple headache can mean his CO2 is high. He has trouble regulating his body temperature sometimes so during recess a simple complaint of being too hot or too cold could be ignored. During standardized tests the students are allowed to rest when they are finished with their tests. Both Beth and Hannah have told me that they have fallen asleep waiting on test time to be finished. This can absolutely NOT happen with Noah. Those are just a few things I have thought of when thinking of school. Unfortunately, there are not many cases like his so we really have no model to follow. I guess we will have to figure this out as we go along. <br />
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Once we pass the school hurdle, we then have to decide how to allow him to care for himself as a teenager and then an adult. How can he have his privacy as a teenager when he wont even wake up when his ventilator alarms? I'm sure he wont want his mommy or daddy watching over him while he sleeps as he gets older. What about college? How is he going to be able to go off alone and live in a dorm? One of the huge dangers of CCHS teenagers and adults is drinking. There have been instances where people with CCHS have drank too much, passed out and died. Drinking is always serious but for people with CCHS it can be deadly. <br />
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These are just a few of the decisions we face now and later. I try so hard to be prepared for anything but I know that inevitably something will happen for which I am not prepared. This thought terrifies me. The fact that the decisions we make for him can impact the rest of his life is a huge responsibility. I always use to think that CCHS was so much harder when he was younger and that things should get much easier the older he got. I'm not so sure about that now. Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-67736682416503865272014-01-10T09:36:00.002-08:002014-01-10T09:36:35.151-08:00A Few Things I Have Learned from CCHS1. Don't compare--Don't compare your special needs child with your other children. It's so hard not to compare, especially when looking at those baby milestones. Instead of focusing on what your special needs child is not doing focus on what they CAN do. Embrace every milestone and celebrate their accomplishments. <br />
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2. Be flexible--This one is so hard for me sometimes. I have learned over the years to take things in stride. Don't be afraid to improvise. I have learned to stop stressing over the small things that I cannot change. <br />
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3. Rest whenever possible--I always took sleep for granted. I've always been one who has to get their 8 hours. Then Noah came along and I haven't slept the same since. We have no nursing so I am the one who gets up for every alarm. Some nights are worse than others. Some mornings it's all I can do to get up and get the girls off to school. I crave sleep like a junky craves drugs. I have learned the hard way to sleep whenever possible. When Noah naps, so do I. There are so many other things I should be doing than napping during the day (laundry, cleaning, etc) but in order to function I have to sleep so a lot of things do not get done. My house is a wreck most days but I honestly have no choice if I want to be functional. Don't be ashamed of napping when possible.<br />
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4. Make some time for yourself--I am so guilty of not doing this. It is so hard with 2 girls, a husband and a boy with a ventilator. I have been guilty of staying up late just to have some time by myself but this isn't the best thing because I pay for it the next day. Inevetibly Noah will beep a lot that night and the next day I feel like the Walking Dead. I have learned to take time when I can. I go by myself on Tuesdays to pick Hannah up after school. Beth watches Noah and I get 30 minutes to myself. Sometimes I hide in the bathroom for about 30 minutes. Take the time when and where you can get it.<br />
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5. Make some time for your spouse--This one is hard too. What do you do when nobody wants to keep your special needs child and your and your husband want to go out? Take them with you. We have done this many a time. I must say that it is difficult. I can't tell you the number of times that the kids were in bed and Chris and I sat down to watch something on tv together. It's sometimes taken us a whole week to watch a 30 minute episode together because either one or the both of us end up falling asleep. Do your best to find some time. Take 5 extra minutes and have coffee together. Make an impromptu phone call during the day. Send a sweet text or email. I read somewhere that the divorce rate for parents of special needs children was over 50%. I can definitely understand why. <br />
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5. Don't be afraid to show your feelings--It's ok to be sad. It's ok to be mad. The life of a special needs parent is demanding and difficult. I can't tell you how many times I have cried with frustration, how many times I have been so mad at doctors, the equipment company and the medicaid people that refuse to show up to my house on time.<br />
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6. Do the research--Living with a rare disease means that doctors do not know much about CCHS unless we tell them. I have done countless hours of reading about CCHS, talking with other parents, searching the internet, all with the intent of becoming more knowledgable about CCHS. I made myself a CCHS binder. It is now full of articles and resources.<br />
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7. Your home is your sanctuary--Make sure everyone honors this. As a special needs parent, you will have so many people coming into your home. Nurses (we never had nurses but I've heard from a lot of parents who do), therapists, the equipment company, the medicaid agency. All of these people come in on a monthly basis. That doesn't seem so bad but when you have 6 people who all want to come at the end of the month, all on different days, it gets so frustrating. These people have learned to call me the Monday of the week they want to visit. They do not just show up. That's not to say that sometimes things don't work exactly as I planned but I do not allow them to take advantage of me. If they are suppose to be here at a specific time and are 30 minutes late without calling then I leave if I have somewhere else to go. I do not wait on them. Do not let them take advantage of you.<br />
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8. Don't be afraid to fight the system--We had an issue last year with anethesia. Since then, I do not trust them at all. I made this known to the hospital. It has taken over a year but there is now a CCHS policy regarding anethesia in place. We have decided to allow them to do the yearly tests but have made several requests. If these are not met, then they are not touching Noah.<br />
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9. Make time for your other children--We were determined to allow the girls to still do things even though it was more difficult with Noah. Many a time I have packed up all of his equipment and gone to the dance studio to wait for Hannah. We have sat in the car waiting on both girls to get out of piano. And this past year, we packed everything up multiple times to go out of town for Beth's volleyball games. Yes it was a hardship and not the easiest thing to do but we did not want them to begin to resent Noah. We wanted them to see that we realized they are just as important as he is, even though he requires a little more care.<br />
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10. <u><b>LIVE</b></u>--To me, this is the most important one. I have seen so many
trach/vent parents who are scared to go out during flu season, who got
rid of their pets, who will not burn candles or spray perfume, who do
not go to the beach or let their kids swim, who keep their child in the
home at all times unless they have a doctor's appointment. The way I
see it, having a special needs child does not mean you should isolate
yourself. It may be harder, it may take a lot of planning and a lot of
work but it is so important to treat the special needs child as "normal"
as possible. So go out, have birthdays, go to the zoo, visit the beach
and swim, go to the park. LIVE YOUR LIFE without being scared.<br />
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<br />Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-42998592549612608802014-01-01T17:31:00.000-08:002014-01-01T17:31:48.178-08:00A guest blog by another CCHS mom, Sarah Y. <span class="userContent"> When Noah was first diagnosed with CCHS, it was so overwhelming. There was literally nobody here to talk to that could understand everything we were going through. Then one day I received an email from another CCHS mom. Turns out she lives in the same city! I was so excited. We met in the lobby of Children's hospital. Immediately I felt a kinship with her that I had not experienced with anyone else. I realized she was going through everything we had experienced the year before. Even though I wish CCHS on nobody, I am so glad we walk this road together. </span><br />
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<span class="userContent">We are now trying to raise awareness of this rare disease. For the first time, UAB is hosting a rare disease day event. We have been interviewed for a local parenting magazine and NORD has allowed Sarah to write about our journey as rare disease parents. I have included the link to her article. </span><br />
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<span class="userContent">Thanks Sarah for sharing Madi with us and for being there for me. </span><br />
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<span class="userContent"><a href="http://blog.rarediseases.org/rare-kiddo/" rel="nofollow nofollow" target="_blank">http://blog.rarediseases.org/rare-kiddo/</a></span>Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-72747707575018070552013-09-30T09:02:00.000-07:002013-09-30T09:02:41.273-07:00The NICU<div class="separator" style="clear: both; text-align: center;">
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I have always been a planner. I like everything to be in order and am not very spontaneous. This was true with the planning of Noah's birth. I had everything ready. His room was painted, crib was ready with new sheets and his mobile hung, little boy baby clothes were hanging in the closet, the car seat was installed and ready for him to come home. Little did I know that none of that mattered. He would not sleep in his room (it is too small and will not hold all the equipment), he would not sleep in his crib for 4 months, he would outgrow those little baby clothes in the closet because he spent the first 4 months of his life in a diaper with tubes and wires poking out) and the car seat sat unused in the car for 4 months. My plans did not include a NICU stay.<br />
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I had never given the NICU much thought before I had Noah. The NICU was just that place in the hospital where they took sick babies. (Other people's sick babies, but not my baby). I remember my first visit to the NICU. Chris wheeled me in a wheel chair. We had to be buzzed in the locked door. Upon entering, we stopped at the sink and washed our hands. There were 2 big rooms divided by a nurses station. Noah was on the right. Chris wheeled me into a huge room. There were incubators spaced all along the walls. Monitors were everywhere. The antiseptic smell was strong. Surprisingly the NICU was very quiet. The only sounds were the various beeping of machines. Being a nursery, I thought it would be loud with the sounds of babies crying but there were no cries. I realized that these babies were using all of their energy trying to stay alive. The room was dimly lit, except for one bright spot where a baby was under several huge biliruben lights. The blue lights gave the NICU a very eerie glow. All of the babies, mine included, looked like little aliens undergoing some weird science experiment. You could barely see the babies because they were covered in wires, tapes and tubing. <br />
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As Chris wheeled me to Noah's incubator I was terrified but elated to see him. He was sound asleep. Wearing only a diaper, wires were on his chest and he had a nasal cannula. Other than that, he looked perfect. I was allowed to hold and snuggle him while he slept. Several times, his oxygen levels dropped to the upper 80s but then came right back up to the 90s. Before the nurse could even come over to check, the machine had stopped beeping. After visiting for awhile, Chris wheeled me back to my room. I was very sad to leave Noah but I thought that this would only be for a short time. Unbeknowest to me, this was the beginning of our long 4 month nightmare. <br />
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We continued visiting Noah at all hours of the day and night. The day finally arrived when the doctors informed me that I was being discharged but my baby would not be coming home with me. I was devastated. This was not in my plans. All of the "normal" things you do in a hospital with a newborn didn't happen. We didn't get to have the first baby picture, see him in the nursery, or even listen to the speech on breast feeding from the lactation consultant. We were suppose to be putting him in his coming home outfit and bringing him home to see his sisters and grandparents. Instead, I was given my discharge papers and we began the long walk to the NICU to visit. The nurses there were so kind. They knew that I did not want to leave my baby. I was assured that they would call if they needed me and they gave me a number to call 24/7 so that I could check on Noah. We gave him one last kiss and walked out of the hospital without him. It was the hardest thing I have ever had to do. We returned home to an empty house. The girls were at school and there was no need for the grandparents to be there. The silence was overwhelming. Instead of being home holding my son, rocking him, feeding him, changing him and taking care of him, I was sitting at home with just my husband and I in a silent house. My parents came over later that morning for a visit and to check on me. They arrived with sad eyes and hushed voices. The girls returned home from school glad to see me but missing Noah. They had only been able to see him for 5 short minutes before he was rushed to the NICU. Instead of cuddling him, they had to be content with looking at pictures we had taken of him in his incubator. The silence of the house was deafening. Instead of a baby crying, phone ringing, doorbell ringing and visitors we were left with nothing. <br />
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We began a routine that would continue for 4 long months. We would wake up in the morning and I would get the girls off to school while Chris would go to work. I would then get ready and go to the hospital (before the doctors released me to drive, I would have to rely on my daddy to come pick me up and take me to the hospital. We did this for about a week until I was cleared to drive. He would pick me up, drive me to the hospital and sit in the lobby while I visited with Noah). Chris would leave work on his lunch break and we would spend an hour together with Noah. He would leave to go back to work and I would stay until it was time to go meet the girls who rode the bus to school. Once home, I would begin dinner while the girls did homework. Chris would come home, we would have dinner and then begin the nighttime routine of baths and getting ready for bed. Chris would then kiss the girls goodnight and go to the hospital while I tucked the girls in bed. The next day would begin the routine all over again. Every weekend, we would either drop the girls at my parent's house or my parents would come to ours while Chris and I went to the hospital. It was exhausting.<br />
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Many sights and sounds of the NICU are emblazoned on my brain forever. The smell of hand sanitizer will forever remind me of Noah's hospital stay. The silence of a room full of babies was deafening. Constant beeps and soft whispers of the nurses were all sounds of the NICU. I saw things I never wish to see again. Small, sweet babies with tubes and wires coming out of their bodies, mommies and daddies crying by their baby's bedside, the pity and sympathy in the nurses eyes, all made a huge impact on me. I will never forget the sight of Noah, lying in the NICU, newly intubated, blood on the sheets and him not moving. The sight of the IV in his head was unnerving. Seeing him lying there with tubes, wires and IVs was frightening. I wondered what I had done to cause this. I wondered if he would ever come home. I wondered if he did come home, how on earth was I suppose to care for him and what kind of quality of life would he have with a trach and vent. Honestly, at one point I even wondered if we should let him go. Eventually, we were allowed to hold him. Sitting in the chair with him in my arms, feeling the hard vent tubing, carefully moving around the wires so as not to pull them out I realized that I would do anything in my power to keep him with us. I instinctively knew that he had so much to teach us and his life was just as precious as any other. <br />
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The NICU nurses were wonderful. When Noah was three weeks old he was transferred by ambulance to the local Children's Hospital NICU. I was very nervous about the transition. One of his nurses assured me that she would ride with him to the new NICU. I could not be there because my youngest daughter had the flu. The transfer went well and as soon as Noah was settled the new NICU nurse called me. I had to content myself with phone calls for the first week he was in the NICU because I became sick with the flu. Once I was finally able to visit him, I was impressed with Children's NICU. Every time we came to visit, a nurse would come over to us and explain everything they had done and what tests they were going to do that day. Once we knew Noah was going to get a trach, they made him a special personalized trach box to hold his trach supplies. One day I came in and found him dressed in a cute Halloween onesie. A nurse had bought him several Halloween onesies and dressed him. They brought us a rocking chair so we could sit and rock. I spent many a day just sitting in the NICU surrounded by beeping machines and quiet babies. One by one I watched babies come and go. Some had a short stay, some had longer. I saw parents crying, nurses talking in hushed tones and babies who didn't move. Once, the NICU was closed for hours. I sat in the lobby waiting to go in to see Noah but they never opened it back up until that night. I felt sad and frustrated because I couldn't see my baby but I felt extreme sadness for the parents of the baby who had shut down the NICU. Another time I encountered a mom crying in the hallway. She was on the phone with someone explaining that they were having to make the decision to whether to turn off the machines or not. It was heartbreaking and in the back of my mind I wondered if one day I would have to make that same decision. <br />
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The day we were released from the NICU was both scary and exhilarating at the same time. The NICU nurses had become our lifeline and they were so supportive and caring. I wanted to take all of them downstairs to the 5th floor with us. I will never forget them packing up his stuff in a small box, unhooking the equipment to put on a battery and then wheeling him to the elevator. A new chapter of our life had begun.<br />
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The NICU experience is something I hope to never have again. We learned a lot during our 1 1/2 month stay there. We learned that the human spirit is strong; we learned that there are kind people everywhere; we learned that our girls are extremely compassionate; we learned that adversity makes us stronger; we learned many life lessons. The NICU didn't break us, it made us stronger. <br />
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<br />Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-14643399887000598702013-08-26T05:21:00.000-07:002013-08-26T05:21:02.966-07:00A Year in Review: The Third YearToday is another milestone for Noah. His fourth birthday is today so I thought I would give a short recap of his third year.<br />
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When Noah turned 3, he aged out of our Early Intervention program and began to receive speech services at our local school. We went from having 6 home visits a month (2 speech, 2 occupational and 2 physical therapies) plus 2 hospital visits a week for vital stim down to only 2 speech therapies a week. Looking back, I have no idea how I juggled all of those therapies but I am glad he was able to receive all the help. He loves his speech teacher and loves going to "big" school. His speech has improved dramatically.<br />
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This was the big year of potty training. I had heard that CCHS kids have some trouble with the training but he did great. My secret weapon was m and m candy, which is Noah's favorite. He hasn't quite mastered the nighttime training. This is a little more difficult because in order to go to the bathroom at night, we have to disconnect his vent and pulse ox. He can't just get up and go. Last week during nap time, he stayed dry all during nap so I'm hoping the nighttime training goes well also.<br />
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He had a few colds during the year and we had to adjust some vent settings but only had one really big sickness. He got walking pneumonia and had to be on his vent 24/7 for a few days.<br />
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We went on several vacations this summer. Washington DC was a great learning experience for him. He loved riding on the Metro and was fascinated by the Lincoln Memorial. We bought him some Lincoln logs at the Ford Theater and now Noah tells us that Abraham Lincoln gave him some logs. We had an interesting time figuring out how to carry his equipment all over DC without using our car and came up with the idea of using a luggage cart. This worked very well. Our annual family beach trip was also this summer. We spent the week with grandparents and cousins. Our challenge this year was to figure out how to keep him safe in the water since he has outgrown his baby boat. We ended up using a life vest and a swim ring. I also found a small kid float that folds out flat. He liked to sit on that while wearing his swim vest. He absolutely loved the sand and the ocean. He built sandcastles and I let him sit at the edge of the water by himself. His favorite thing to do there was to catch the crabs at night.<br />
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Noah attended his first Vacation Bible School. His first year he was sick. His second year I got his grandmother to keep him because he wasn't old enough to attend. He was very reserved at first but by the end of the week, with encouragement from the great VBS workers, he was singing, dancing and participating.<br />
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Noah had his first sleepover alone at his Nana and Poppa's house. (See my blog post The First Sleepover). This was a huge deal for all of us. Sending a vent dependent child to his grandparents is not easy. There's a lot of packing involved and a sleepless night for his grandparents. But Noah had the best time and that's all that matters. <br />
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My oldest daughter, Beth, did travel volleyball this year. She was on the regional team and we traveled out of town a lot for games. We became a pro at overnight vent setup at different hotels. I just kept a suitcase of supplies packed for the season and replenished as needed. Noah loved traveling and staying in the hotels.<br />
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We celebrated his birthday this year by renting a pavilion at a splash pad. He loved playing in the water. We spent the afternoon with family and friends, including Noah's CCHS sister. It was so amazing seeing the two of them sit together and know that they are two of only about 800 people in the world with CCHS. <br />
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I have heard many CCHS parents say that it gets easier. This is true. I'm not sure, though, if it really gets easier or if we have learned to manage everything better. Noah has a wonderful ability to keep himself awake, which is good for traveling but bad for nap/bed time. We now travel around town without the ventilator. I use to pack up everything just to go to the store but now we travel lightly. I take the suction machine and the go bag. As he gets older, the doctor visits and the therapies have decreased. His resistance has built up so he doesn't get sick as often, however I am sure this will change when he starts school. Our next big hurdle is preschool and beginning our transition from trach to mask ventilation. <br />
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Noah has come such a long way from that tiny baby in the NICU to a happy, healthy 4 year old. CCHS does not slow him down. Happy Birthday sweet boy. Mommy loves you. <br />
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<tr><td class="tr-caption" style="text-align: center;">Noah when he was about 3 weeks old. </td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Hannah's first time to see Noah. He was 2 months old</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Beth's first time to see Noah</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Noah age 3</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Noah age 3</td></tr>
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<br />Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-1464181414294271372013-07-22T07:53:00.000-07:002013-07-22T07:53:29.521-07:00The First SleepoverWell it finally happened. Chris and I knew it was going to happen sooner or later. Noah asked to spend the night at his grandparent's house. My girls have always loved going over to my parent's house (Nana and Poppa). Even at age 10, Hannah still loves to spend the night. We knew that it would just be a matter of time before Noah wanted to spend the night too. <br />
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Awhile back, Noah and I packed everything up and went to spend the night at Nana's house. I stayed too, just in case. He did great, although I don't think my poor mom slept at all that night. Last night, I did not stay. <br />
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Packing for an overnight stay is a little exhausting. The back of the van looked like we were going for a week. I had his vent, suction machine, co2 monitor, sat monitor, the vent heater, a bag full of machine cords, the go bag, an overnight bag and one bag just to hold all of Noah's favorite blankets and babies. I carried everything over there and helped mom set it all up. <br />
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Noah had already been talking about spending the night. The only thing he was worried about was that Nana would close the door or turn the light off. I kept reassuring him that wouldn't happen and so did Nana. He was so excited and ready to stay. Then it was time for us to leave. He looked at me and said he wanted to go with me. My heart sank. We had already discussed that if he was really scared and wanted to leave that I was not taking all the equipment apart and packing it back up. I decided that if he did this, that I would just spend the night also. I reassured him that it would be fine and reminded him that his Honey (his sister, Hannah) was spending the night also. He thought about this for a minute and then agreed. We kissed him and left. I had no worries leaving him in my mom and dad's care. It was a sad but great feeling at the same time. I was happy to let him stay but realized that my little boy is growing up. <br />
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It was so weird going to sleep without the sound of the ventilator. I slept all night, the first time in almost 4 years, with no alarms, no wooshes of air, no beeps. It was amazing. It was time. I knew he was ready and so was I. <br />
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I can't imagine how scary that probably was for my parents. I've always tried to put myself in other people's shoes to see how they would feel. It is a huge responsibility. But, my mom was trained at the hospital with me and I knew she could take care of him all night without me. Noah is very stable and the only alarms that occur are false; there is water in the circuit, the sat probe is loose, he is laying on the circuit, etc. We live about 20 minutes away so I told my mom that if she got scared, just wake him up and call me. I'm so proud of them for taking this big step and letting him realize that just because he has a trach and a vent that he can do the same things as his sisters. I am determined that his diagnosis will not hold him back and that he will never feel penalized for having CCHS. Yes we have to take some precautions and it sometimes takes a lot of planning but it is so worth it in the end. <br />
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Thanks mom and dad for helping Noah be "normal". I know how scary that was and I'm proud of you. <br />
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<tr><td class="tr-caption" style="text-align: center;">Noah sleeping peacefully at Nana's and Poppa's house</td></tr>
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<br />Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-15717396129754677992013-07-08T08:02:00.002-07:002013-07-08T08:02:34.579-07:00The Wrong WayGrowing up in the deep south, we were taught manners at an early age. I have always tried to be mindful of other people's feelings and consider myself to be a tactful person. Unfortunately, I have found that this is not true with all people. Maybe I have become more sensitive to Noah's diagnosis or maybe I just notice it more but I have found that a lot of people need to use more restraint and better manners when discussing special needs. <br />
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When Noah was in the hospital before getting a diagnosis, we saw so many doctors and professionals. One of these was a geneticist who was suppose to be an expert in his field. I will never forget the day we got a call from the hospital telling us the geneticist would be there to meet with us. The call came only an hour beforehand so there was not much time to plan. Chris rushed home from work, we had no time for a sitter so we loaded the girls in the car and headed to the NICU. Because of the swine flu epidemic, the girls were not allowed in the NICU so we had to make them wait in the waiting room. Chris and I were sent to a small conference room to wait. After about 15 minutes, the NICU doctor and the geneticist entered the room. They proceeded to ramble on about the tests they had performed and informed us that all of them were normal. The geneticist looked us straight in the eyes and said "Can I tell you I feel good about Noah? No, I cannot." Now how in the world were we suppose to process this information? We took it to mean he was at death's door. As they looked at us with pity, we were devastated. After he told us this, they ended the meeting by telling us that "we could always hope for the outcome that we wanted as long as we had no answers". What??? Basically, they gave us no hope whatsoever. <br />
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Not long after, we were visiting Noah in the NICU when the other doctor came over to us. She explained that they were testing for a rare disorder of CCHS. She then informed us that he would be in an institution the rest of his life, handed us a short, uninformative page from a medical journal, told us she would allow us to "process this information" and then walked off. <br />
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We were left with the thought that Noah was close to dying and if he did survive, he would never live with us and wold be in an institution the rest of his life. There was no more hope. The despair was overwhelming.<br />
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Looking back, I realize that these so called doctors had no tact. There is a right and wrong way to give information like this. In retrospect, they should have started by telling us the good news. For instance, they could have told us things he did not have and explain that other than the unexplained desats that he was healthy. Apparently, they saw being on the vent as a death sentence. <br />
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Not only do the doctors/specialists have no tact when dealing with CCHS but other special needs parents can also. There was a mother recently who I met on one of the special needs facebook pages. Her daughter was undiagnosed but had many of the same symptoms of CCHS. Several of us CCHS parents had tried to help her. She constantly asked questions and when we answered them, she would ignore the answers. One day, she posted on our CCHS page that she had gotten the CCHS test results back. To paraphrase her post, she basically said "thank God my kid doesn't have what your kid has". Then she proceeded to ask us why we thought her child had apnea. Seriously, who gets on a page where people have done their best to help you and then act so thankful that your child doesn't have the same diagnosis. Plus, have the nerve to ask us what we thought was wrong. Thankfully, she was removed from the page. Another mother in the same situation was also asking questions. We kept telling her that it was important for her daughter to be on the vent until the diagnosis was made and she kept making excuses like "we don't have a battery so we aren't taking the vent on vacation". We kept urging her to get second opinions and all we heard were excuses and things like "I'm planning on" or "I'm going to" ask such and such doctor when we go back. Eventually, we stopped answering her altogether. It is beyond my understanding how people can act this way. <br />
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When dealing with a diagnosis like CCHS, it is important to be positive and encouraging. Parents are dealing with enough worries and do not need to hear negative comments. One can be supportive without being tactless. Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-20316310738270944732013-07-03T11:43:00.001-07:002013-07-03T11:43:34.114-07:00Traveling with a special needs childTraveling is stressful but even more so with a special needs child. There are so many pieces of equipment and so many supplies that have to be taken, not including all of the regular things that have to be packed when traveling. Plus, it is always a challenge to set the room up like a mini ICU. We have always been of the mindset that we would treat Noah just as we treat our girls, including letting him travel.<br />
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I remember the first trip we took after he was discharged from the hospital. We went to the beach during spring break. I packed enough for a whole month but I wanted to be sure we had everything we needed. After all, there was no running to Wal Mart to get HMEs or circuits. We also had to figure out where he would sleep and room arrangement. That trip was a learning experience for us. We had so much fun and it helped to know that traveling with him would be possible. <br />
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I have put together a few helpful tips for traveling with a trached/ventilated child. I will also explain how we set the room up for Noah to sleep.<br />
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<u><b>Supplies</b></u>--When we first went to the beach for a week, I packed a suitcase for the trach supplies, one for vent supplies and one for clothing. Noah had 3 suitcases! After that trip, I realized it was a bit excessive so now I've condensed everything into 2 suitcases. One for supplies and one for clothes. We change circuits and the trach weekly. I start the packing process by packing the vent things first. (You could make a list of everything you need for circuit changes but I just go through the process in my head without using a list). For a week, I usually take 3 of everything. I pack 3 water bags (we usually use 2 in a week), 3 circuits, 3 water chambers, 3 omniflex, 3 swivels. For trach supplies, I pack a lot of trach ties because I never know when we will be swimming. I usually plan for 2 a day, which is 14 for a week. I pack the cleansing soap, nystatin powder, 4 trachs, scissors, a trach kit for every day plus some extra gauze, about 4 bags of suction catheters and a baggie full of saline bullets. I also take an extra suction canister and tubing. I pack about 4 caps since he wears them all the time and they tend to get lost sometimes. Plus, they are small and fit in the suitcase easily.<br />
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<u><b>Equipment</b></u>--We are very careful when packing the equipment. We take our time to make sure we have everything. The vent gets packed in its travel bag. I am extremely careful with the CO2 monitor. I wrap it in bubble wrap. The sat monitor goes on top of the CO2 monitor and they have their own bag. The suction machine has its own bag.<br />
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<u><b>Electrical Cords</b></u>--Every piece of equipment has a cord. We have a ton of cords so we have a designated "cord bag". Its a duffle bag that came with our set of luggage. The first thing in the cord bag is the vent stand. It's flat so it goes on bottom. Then as I pack each piece of equipment, I put its cord in the cord bag. I pack up the CO2 monitor and then take the cord and put it in the cord bag. Same thing with the sat monitor. We also put the vent heater in this bag. The vent battery goes on the vent and the cord goes in the bag. We also put our bungee cords in here too. We make sure to take our surge protector. We purchased an octopus like protector that has a lot of room for the cords to plug into. We always take a long extension cord just in case. <br />
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<u><b>Vent batteries</b></u>--We have 2 vent batteries. The night before we leave, I plug everything up and let it all charge if needed. I keep one vent battery in the back pocket of the car and the other is on the vent. We went to Disney a couple of years ago when Noah was almost 2 and we carried 3 vent batteries. On Noah's typical vent settings a vent battery will last 3-4 hours. We took 3 because we wanted to be sure we had enough battery to last all day if necessary. We have found that the higher the settings, the less time the battery lasts. <br />
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<u><b>Sleeping</b></u>--We have found it easier to let Noah sleep on a blow up bed. We bought a twin blow up mattress and I take a twin sheet with lots of blankets. Upon arriving at our destination, we move the furniture around if needed. All places are different but we usually have the same setup. We put the blow up bed by our bed and use a nightstand for the vent. The heater goes on the floor, as well as the sat monitor. If the nightstand is too tall for the circuits to reach, we use a small upside down trash can or a small stool.<br />
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<u><b>Taking equipment to attractions</b></u>-- One of the biggest challenges is trying to figure out how to carry all the equipment to different attractions. When we went to Disney, we took our large pack and play stroller. When we went to the beach, we took a wagon. The wagon was too hard to pull in the sand so I ended up getting a large beach bag in which to put the suction machine. We have recently returned from a trip to Washington DC. We really didn't want to take the large stroller, especially on the Metro so we had to come up with an alternative. We ended up using a collapsible luggage cart and purchased a lot of bungee cords to secure the equipment to the cart. Instead of taking our large stroller, we purchased a small, cheap umbrella stroller for Noah to ride in when he got tired. When he wasnt using it, we strapped it to the luggage cart. This worked extremely well. The only downside was when we had to undo everything to get through security. <br />
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<u><b>A few extra tips</b></u>--I always keep a spare circuit in the car for emergencies. I use a laundry basket in front of Noah's seat in the car that holds the vent in place. I keep his nebulizer equipment in a ziplock bag that I can just grab and put in the suitcase without unpacking it. I always have Chris double check the supplies/equipment to make sure I packed everything. <br />
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As you can see, traveling takes a little extra planning but with careful packing we have never had an issue with not having anything we needed. <br />
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Here is an example of how we set the vent up when we went to the mountains during spring break. We try to hang the water bag but if there's no doorknob or hook then we just prop the water bag in front of the vent. Here, the table was just the right height but if it is too tall, we place the heater on a small overturned trash can or a small stool. The sat monitor is not shown but we put that on the floor by the heater. I always take his current size trach and one smaller to put next to the ventilator. <br />
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<tr><td class="tr-caption" style="text-align: center;">Here is the luggage cart with the equipment. This worked very well when we went to Washington since we did a lot of walking and riding the Metro. </td></tr>
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This was taken a few years ago at a beach house when Noah still slept in a crib. There was a handy hook on the wall that I used to hang the water bag. We used a stool because the circuit wouldn't reach from the table to the crib. (Please note that we did not take a crib with us. There was already one at this beach house). The extra trachs are behind the ventilator. <br />
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This is the setup we used when we went to Disney. We cut a hole in the pack and play to accommodate the vent circuits. The vent is not shown in this picture but it is on a table on the right side. (<u>Please note</u>: We cut the mesh horizontally but realized that cutting it vertically would have made it easier to drain the circuits of water. I had to pull unhook Noah from the circuit and pull it back through the mesh to drain the water. This was a huge pain. If we had cut the mesh vertically I could have just raised the circuit up to drain, rather than having to unhook him).<br />
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This is our very first beach trip after Noah was released from the hospital. He was still small enough to sleep in the pumpkin seat. As you can see, the vent is on its stand on the nightstand. The heater is below on an overturned trash can and the water bag is propped up in front of the vent. This is the same setup we use now except instead of the pumpkin seat, Noah is on a blow up mattress (as shown in the picture above).<br />
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The setup remains pretty much the same wherever we go. We usually have to move a lamp off of the table or sometimes move the bed over to accommodate the blowup mattress. There is usually a nightstand but once we went to a volleyball tournament and stayed in a motel that did not have one so we used a sturdy chair on which to put the ventilator.<br />
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We have learned to become very inventive. It does take a little time to set everything up but with patience and imagination, it can be done. <br />
Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-19688507516449694012013-06-03T09:59:00.000-07:002013-06-03T09:59:09.619-07:00Noah's Story<!--[if gte mso 9]><xml>
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 5"/>
<w:LsdException Locked="false" Priority="10" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Closing"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Signature"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="true"
UnhideWhenUsed="true" Name="Default Paragraph Font"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Message Header"/>
<w:LsdException Locked="false" Priority="11" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Salutation"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Date"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text First Indent"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text First Indent 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Heading"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Block Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Hyperlink"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="FollowedHyperlink"/>
<w:LsdException Locked="false" Priority="22" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Document Map"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Plain Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="E-mail Signature"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Top of Form"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Bottom of Form"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Normal (Web)"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Acronym"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Address"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Cite"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Code"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Definition"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Keyboard"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Preformatted"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Sample"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Typewriter"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Variable"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Normal Table"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="annotation subject"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="No List"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Contemporary"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Elegant"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Professional"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Subtle 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Subtle 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Balloon Text"/>
<w:LsdException Locked="false" Priority="39" Name="Table Grid"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Theme"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" QFormat="true"
Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" QFormat="true"
Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" QFormat="true"
Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" QFormat="true"
Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" QFormat="true"
Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" QFormat="true"
Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" SemiHidden="true"
UnhideWhenUsed="true" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="TOC Heading"/>
<w:LsdException Locked="false" Priority="41" Name="Plain Table 1"/>
<w:LsdException Locked="false" Priority="42" Name="Plain Table 2"/>
<w:LsdException Locked="false" Priority="43" Name="Plain Table 3"/>
<w:LsdException Locked="false" Priority="44" Name="Plain Table 4"/>
<w:LsdException Locked="false" Priority="45" Name="Plain Table 5"/>
<w:LsdException Locked="false" Priority="40" Name="Grid Table Light"/>
<w:LsdException Locked="false" Priority="46" Name="Grid Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="Grid Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="Grid Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 1"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 1"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 2"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 2"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 2"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 2"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 3"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 3"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 3"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 3"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 4"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 4"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 4"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 4"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 5"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 5"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 5"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 5"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 5"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 6"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 6"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 6"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 6"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 6"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="46" Name="List Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="List Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="List Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 1"/>
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<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 1"/>
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<br />
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<br /></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">Early morning, August 26, 2009 I was awakened and knew it was time
to go</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">to the hospital.<span style="mso-spacerun: yes;"> </span>We made
arrangements to get the girls off to school and</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">we packed and headed off to St. Vincents Hospital to meet our son,
Noah.</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">He was originally due September 22 but I knew he was at a decent
weight because I had been to the doctor the previous day.<span style="mso-spacerun: yes;"> </span>I was a little worried, but not overly
concerned.</span></div>
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<br /></div>
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<br /></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">Noah arrived in the world the morning of August 26, 2009. He did
not make one</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">sound whatsoever when he was delivered, which worried me.<span style="mso-spacerun: yes;"> </span>I continually</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">asked the doctor if he was ok and she assured me that he was
fine.<span style="mso-spacerun: yes;"> </span>There</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">was a small nagging doubt that kept telling me something was
wrong.<span style="mso-spacerun: yes;"> </span>After awhile, Chris left to check
the girls out of school and I settled in to hold</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">Noah and rest.<span style="mso-spacerun: yes;"> </span>The nurse
brought him to me fresh from his bath.<span style="mso-spacerun: yes;">
</span>As I</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">was holding him, I noticed a small blue tinge around his
lips.<span style="mso-spacerun: yes;"> </span>The</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">nurse came to check on us and I showed her.<span style="mso-spacerun: yes;"> </span>She immediately took him</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">and checked his vitals, reporting that his oxygen was a little
low.<span style="mso-spacerun: yes;"> </span>She</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">gave him some o2 and worked with him for awhile.<span style="mso-spacerun: yes;"> </span>After about 15</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">minutes, she took him to the nurse’s station so she could keep an
eye on</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">him.<span style="mso-spacerun: yes;"> </span>It wasn't long before
she returned (without Noah) and informed me</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">that he had to go to the NICU because his oxygen kept dropping and
there</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">was no way for him to be monitored in my room.<span style="mso-spacerun: yes;"> </span>She asked if the girls</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">were close to coming and stated that if they were 5 minutes out
they</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">would wait for them, otherwise he was going on to the NICU.<span style="mso-spacerun: yes;"> </span>In a panic,</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">I called Chris to find out that they were in the parking
deck.<span style="mso-spacerun: yes;"> </span>So the</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">nurses wheeled Noah in the room in an incubator.<span style="mso-spacerun: yes;"> </span>I held him while the</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">girls talked to him, touched him and kissed him.<span style="mso-spacerun: yes;"> </span>They only let them see</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">him for 5 minutes then he was wheeled to the NICU.<span style="mso-spacerun: yes;"> </span>It all happened so</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">fast, we had no time to process it.<span style="mso-spacerun: yes;"> </span>The girls kept asking where he went</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">and why couldn't they see him.<span style="mso-spacerun: yes;">
</span>I was extremely upset and it was so hard</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">to keep composed in front of them.<span style="mso-spacerun: yes;">
</span></span></div>
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<br /></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">There were no first family pictures, no pictures of Noah with his
grandparents, nothing but tears and fear. This was the year of the swine flu
and the NICU did not allow anyone except parents to visit.<span style="mso-spacerun: yes;"> </span>Because of this, nobody except Chris and me got
to see Noah until he was 4 months old. </span></div>
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<br /></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">We were first told that he would be able to go home with me.<span style="mso-spacerun: yes;"> </span>But the day came and they said, he would stay
another week so I packed up and walked out of the hospital without my
baby.<span style="mso-spacerun: yes;"> </span>It was the hardest thing I have
ever had to do.<span style="mso-spacerun: yes;"> </span>We visited daily.<span style="mso-spacerun: yes;"> </span>It was extremely difficult having a child in
the NICU and 2 children at home.<span style="mso-spacerun: yes;"> </span>After
the girls left for school, I would drive</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">to the hospital and stay with Noah until it was time to leave to
meet</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">the girls at the bus stop.<span style="mso-spacerun: yes;">
</span>We would do the regular after school things</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">of homework and dinner.<span style="mso-spacerun: yes;">
</span>When the girls had gone to bed, Chris would go</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">to the hospital to see Noah.<span style="mso-spacerun: yes;">
</span>On the weekends, we would get a sitter and</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">stay with him a few hours on Saturday and Sunday.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">Noah had many different tests (MRIs, Blood Tests, Genetic Tests,
etc).<span style="mso-spacerun: yes;"> </span>Everything came back normal.<span style="mso-spacerun: yes;"> </span>He would desat down to the 80s and then
before the nurses could even come check on him, he was back up to the upper
90s.<span style="mso-spacerun: yes;"> </span>This was constant.<span style="mso-spacerun: yes;"> </span>He would do this all day and all night and
they couldn't figure out why.<span style="mso-spacerun: yes;"> </span>He was
eating fairly well. He was fine other than the many desats.</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">Then, a week after he was born he hit rock bottom.<span style="mso-spacerun: yes;"> </span>Chris had</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">gone to see him that evening and he called me when he got to the</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">hospital.<span style="mso-spacerun: yes;"> </span>His voice was
shaking and he said they had closed the NICU.</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">I asked if it was Noah and he said he didn't know because they
weren't</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">letting anyone back there.<span style="mso-spacerun: yes;">
</span>I hung up the phone with him promising to</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">call me soon.<span style="mso-spacerun: yes;"> </span>I immediately
knew it was Noah.<span style="mso-spacerun: yes;"> </span>I just had this
horrible</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">feeling and a deep blackness overcame me.<span style="mso-spacerun: yes;"> </span>I began crying hysterically,</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">trying to keep quiet so as not to frighten the girls.<span style="mso-spacerun: yes;"> </span>Not too much</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">later, Chris called me and I have never heard his voice sound so
sad and</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">scared.<span style="mso-spacerun: yes;"> </span>He informed me that
Noah had a seizure and they had to intubate</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">him.<span style="mso-spacerun: yes;"> </span>We were
terrified.<span style="mso-spacerun: yes;"> </span>They said his CO2 was too
high and they were</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">giving him phenobarbital to prevent more seizures (in retrospect
this</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">was not good because it was depressing his breathing even more but
at</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">the time we didn't know his diagnosis).<span style="mso-spacerun: yes;"> </span>The next day, they asked</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">permission to give him a blood transfusion.<span style="mso-spacerun: yes;"> </span>They had taken so much</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">blood from him for tests that he needed more.<span style="mso-spacerun: yes;"> </span>Seeing him laying there</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">with a tube down his throat, tape all over his face, iv in his
head,</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">wires all over and blood on the bed was the most terrifying thing
I had</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">ever seen.<span style="mso-spacerun: yes;"> </span>The depression
hit full force and I feared for his life.</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">This was our life for another week.<span style="mso-spacerun: yes;"> </span>The doctors would come talk to us</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">in hushed tones.<span style="mso-spacerun: yes;"> </span>The nurses
would give us sympathetic looks and pat our</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">backs.<span style="mso-spacerun: yes;"> </span>We watched many
babies come and go from the NICU but there we</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">sat with no end in site.<span style="mso-spacerun: yes;"> </span>I
began to dread going to the hospital but I</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">felt so guilty when I wasn't there.<span style="mso-spacerun: yes;"> </span>It was killing me to see him like</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">that.<span style="mso-spacerun: yes;"> </span>He was never awake
and we did not get to hold him.<span style="mso-spacerun: yes;"> </span>They
stopped</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">feeding him by mouth and gave him an IV.<span style="mso-spacerun: yes;"> </span>The lowest day was when the</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">doctor told us they could not care for him anymore.<span style="mso-spacerun: yes;"> </span>She informed us</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">that he was being transferred to our local children's hospital,
which in</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">retrospect was the best thing that could have happened.<span style="mso-spacerun: yes;"> </span>With deep pity</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">in her eyes, she informed us that they suspected that Noah had
Ondine's</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">Curse or Congenital Central Hypoventilation Syndrome, a very rare
disease.<span style="mso-spacerun: yes;"> </span>She said that he would be on a
ventilator the rest of his life and would most</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">likely have to be institutionalized.<span style="mso-spacerun: yes;"> </span>She said that she had only seen</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">this extremely rare disease in a child one other time.<span style="mso-spacerun: yes;"> </span>She handed us a</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">short 5 paragraph medical paper and told us she would let us
"process the information" and then she walked off.<span style="mso-spacerun: yes;"> </span>We were devastated.<span style="mso-spacerun: yes;"> </span>How is a parent suppose to process that
information?<span style="mso-spacerun: yes;"> </span>They gave us no hope, no
information and it seemed as if they had just washed their hands of him.<span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">Shortly thereafter, Noah was transported by ambulance to
children's hospital.<span style="mso-spacerun: yes;"> </span>I did not get to go
because I was at the doctor with Hannah, who had the flu.<span style="mso-spacerun: yes;"> </span>Chris made sure he got settled in and took
some pictures for me.<span style="mso-spacerun: yes;"> </span>Unfortunately, I got
the flu also and could not visit Noah for 2 weeks.<span style="mso-spacerun: yes;"> </span>It was truly the worst nightmare.<span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">Once I finally got to visit, the whole atmosphere was different.<span style="mso-spacerun: yes;"> </span>The nurses were encouraging.<span style="mso-spacerun: yes;"> </span>Noah was awake and the nurse asked if we
wanted to hold him.<span style="mso-spacerun: yes;"> </span>In shock, we asked
if we really could and were told that they encouraged it.<span style="mso-spacerun: yes;"> </span>I finally got to hold him after 2 weeks.<span style="mso-spacerun: yes;"> </span>The pulmonologist did a sleep study, which
Noah failed miserably.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">I remember the day we finally got a diagnosis.<span style="mso-spacerun: yes;"> </span>We were visiting Noah together (Chris was on
his lunch break) and all of the doctors and nurses gathered around Noah's
bed.<span style="mso-spacerun: yes;"> </span>I immediately became nervous.<span style="mso-spacerun: yes;"> </span>The pulmonologist informed us that the test
had came back positive for Congenital Central Hypoventilation Syndrome
(CCHS).<span style="mso-spacerun: yes;"> </span>I immediately broke down.<span style="mso-spacerun: yes;"> </span>The doctor kept talking but for a minute
there all I heard was a roaring in my ears.<span style="mso-spacerun: yes;">
</span>The fear was overwhelming.<span style="mso-spacerun: yes;"> </span>I had visions
of having to send him out of state to some institution and never being able to
see or care for him myself.<span style="mso-spacerun: yes;"> </span>I slowly
began listening to the doctor.<span style="mso-spacerun: yes;"> </span>He told
us that the diagnosis was scary but that Noah would be up in no time running
around like every other child.<span style="mso-spacerun: yes;"> </span>He told
us that he would be able to go to school, play ball and do everything else (except
maybe scuba dive).<span style="mso-spacerun: yes;"> </span>We were told that we
would have to have extensive training before bringing him home and it was still
going to be awhile before he was released from the hospital, months not
days.<span style="mso-spacerun: yes;"> </span>I was horrified and elated at the same time.<span style="mso-spacerun: yes;"> </span>We went from being told that he</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">would live in an institution to being told that he would not only
be going home but that he would live life like any other child.<span style="mso-spacerun: yes;"> </span>It was an extraordinary amount of information
to process.<span style="mso-spacerun: yes;"> </span>We went home and got on the
computer, which was a mistake.<span style="mso-spacerun: yes;"> </span>There
wasn't a lot of information out there and we really felt so alone and
scared.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">That evening, we got a call telling us that they wanted to do
trach surgery the next day.<span style="mso-spacerun: yes;"> </span>We consented
and went to the hospital after getting the girls off to school.<span style="mso-spacerun: yes;"> </span>The surgery<span style="mso-spacerun: yes;">
</span>did not last long and we were able to see him soon after.<span style="mso-spacerun: yes;"> </span>That first glimpse of him was amazing.<span style="mso-spacerun: yes;"> </span>For the first time since he had been born, we
saw his little face.<span style="mso-spacerun: yes;"> </span>It was a little red
from the tape, but he was sleeping so peacefully.<span style="mso-spacerun: yes;"> </span>The trach looked scary but he looked so</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">much more comfortable.<span style="mso-spacerun: yes;"> </span>The
thing that scared us was that his breath</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">rate on the vent was up to 55 bpm and he was not taking any
breaths on</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">his own.<span style="mso-spacerun: yes;"> </span>The ventilator was
taking every breath for him.<span style="mso-spacerun: yes;"> </span>They
informed</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">us this was because of the sedation.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">The next day, he was awake and alert.<span style="mso-spacerun: yes;"> </span>His breath rate was down.<span style="mso-spacerun: yes;"> </span>After about a week, they told us that he
would be moved to a floor as soon as they had a bed for him.<span style="mso-spacerun: yes;"> </span>We were so excited.<span style="mso-spacerun: yes;"> </span>This was one more step closer to coming home
and the girls could finally come visit him.<span style="mso-spacerun: yes;">
</span>The day finally arrived and he went to the pulmonary floor.<span style="mso-spacerun: yes;"> </span>What an amazing day.<span style="mso-spacerun: yes;"> </span>The girls got to hold and snuggle with him
and we finally got some pictures of them together.<span style="mso-spacerun: yes;"> </span>He</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">was 2 1/2 months old.<span style="mso-spacerun: yes;"> </span>We
still could not stay there with him because the room he was in had no bed for
us but at least we could let the girls visit whenever we wanted and stay as
long as we wanted.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">The nurses slowly began showing us how to suction and we began
asking a lot of questions.<span style="mso-spacerun: yes;"> </span>The home
ventilator team met with us and explained exactly what would happen. We decided
to allow him to have a g-tube so that we would get to take him home
quicker.<span style="mso-spacerun: yes;"> </span>He was eating, but not enough
to sustain him.<span style="mso-spacerun: yes;"> </span>They felt that this was
because he had been IV fed for so long.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">After the g-tube and trach site had healed some, we would begin
our training and train for 3 days a week for a few hours.<span style="mso-spacerun: yes;"> </span>Our training included doing</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">everything 3 times each (bathing, cleaning the trach, changing the</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">trach, suctioning, changing the circuits, doing a bolus feed,
etc).<span style="mso-spacerun: yes;"> </span>We</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">decided that I would train while Chris worked, since he was our
only</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">source of income.<span style="mso-spacerun: yes;"> </span>My mother
and mother in law agreed to be trained as</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">well.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">We began our training on my birthday, which was the best present</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">ever.<span style="mso-spacerun: yes;"> </span>For the next month,
we learned as much as we could.<span style="mso-spacerun: yes;"> </span>We had
an</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">excellent home vent nurse who made sure were were thoroughly
trained.</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">We learned in one month what it took professionals years to
learn.<span style="mso-spacerun: yes;"> </span>We</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">took lots of notes and knew that we were not eligible for nursing
care</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">at home so we paid close attention.<span style="mso-spacerun: yes;"> </span>We learned quickly and they told</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">us they would try their best to have us home before
Christmas.<span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">December 15, 2009 was Noah's homecoming.<span style="mso-spacerun: yes;"> </span>It was a day we never thought we would see.<span style="mso-spacerun: yes;"> </span>The homecoming was a little crazy because
Hannah had a stomach</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">virus and the DME had to meet us ASAP because Beth had her first
band</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">concert.<span style="mso-spacerun: yes;"> </span>My mother in law
stayed with Noah while we went to the</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">concert.<span style="mso-spacerun: yes;"> </span>The first night
home, I didn't sleep at all.<span style="mso-spacerun: yes;"> </span>Our dining
room</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">looked like a mini ICU.<span style="mso-spacerun: yes;"> </span>We
had him hooked to the vent, pulse ox, apnea</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">monitor, and feeding pump.<span style="mso-spacerun: yes;">
</span>He looked like a little science experiment</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">laying there but we didn't care.<span style="mso-spacerun: yes;">
</span>He was finally home.<span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">Slowly, we began to get in to a routine.<span style="mso-spacerun: yes;"> </span>I was able to wean him off the vent.<span style="mso-spacerun: yes;"> </span>I realized that I could do this.<span style="mso-spacerun: yes;"> </span>Then, he got sick.<span style="mso-spacerun: yes;"> </span>Never had he had</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">oxygen in the hospital but now he needed oxygen.<span style="mso-spacerun: yes;"> </span>I was so extremely</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">stressed for the week he was sick.<span style="mso-spacerun: yes;">
</span>He was ventilated 24/7 and I was</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">constantly suctioning and dealing with alarms.<span style="mso-spacerun: yes;"> </span>Christmas day, he slept</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">a lot.<span style="mso-spacerun: yes;"> </span>We really didn't
care because we were all together.<span style="mso-spacerun: yes;">
</span>Eventually,</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">he got better and our routine returned to normal.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">3 months after coming home, we took our first trip to the
beach.<span style="mso-spacerun: yes;"> </span>It was the most amazing trip we
have ever had.<span style="mso-spacerun: yes;"> </span>He loved it and we were
elated to</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">realize that we could do this and live a relatively normal
life.<span style="mso-spacerun: yes;"> </span>The</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">darkness was over.</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">Noah is now a happy, healthy 3 year old.<span style="mso-spacerun: yes;"> </span>He is off the vent during the</span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">day and we trach his cap.<span style="mso-spacerun: yes;">
</span>His speech has improved greatly after 3 years of speech therapy and he
has proven to be so smart with a great sense of humor.<span style="mso-spacerun: yes;"> </span>He is our miracle and our blessing.<span style="mso-spacerun: yes;"> </span>We have learned so much from him.<span style="mso-spacerun: yes;"> </span>I never tire of hearing him run around the
house aggravating his sisters and being a real boy. I never thought we would
get this far.<span style="mso-spacerun: yes;"> </span>We do not know what the
future holds.<span style="mso-spacerun: yes;"> </span>Hopefully we will be able
to have him decannulated and just use a bipap.<span style="mso-spacerun: yes;">
</span>We may even do the diaphragm pacer surgery.<span style="mso-spacerun: yes;"> </span>Attending school is our next big hurdle. </span></div>
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<span style="color: black; font-family: "Courier New"; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">Life is never boring with our little miracle man.<span style="mso-spacerun: yes;"> </span>We are always doing research on CCHS, constantly
having struggles with the equipment company, insurance, and doctors.<span style="mso-spacerun: yes;"> </span>Slowly, we have learned how to live with a
special needs child.<span style="mso-spacerun: yes;"> </span>It has been rough
at times but worth every minute.<span style="mso-spacerun: yes;"> </span></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD3Caze9eQBSrOoBocURvuoSFi4_rKZDBZFCu0Ye2IfrZEZoKRa8ISIrFeCGIZAFVqtYzNtjxQjjavIon_uLxSszOLbehtIHSe3kgFEYu77WxQYlC9q0g6GCIOLLLWl2KJswwZnmz_7Sei/s1600/8-29-09b.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD3Caze9eQBSrOoBocURvuoSFi4_rKZDBZFCu0Ye2IfrZEZoKRa8ISIrFeCGIZAFVqtYzNtjxQjjavIon_uLxSszOLbehtIHSe3kgFEYu77WxQYlC9q0g6GCIOLLLWl2KJswwZnmz_7Sei/s200/8-29-09b.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Before the CCHS diagnosis</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5mpP3Dg4lnzd96PP-rzSmV-WOiv_C2NviIBRvH_skAHaNbZgoaM0yG_bimh1GfF8syQh2TvskBvT3ky1r5p09II_yffGWHA9gMw3CUfc0bvadLH3l4ZCcTzt_0ZAMiKVvAF1iexuOr0dW/s1600/P1120964.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5mpP3Dg4lnzd96PP-rzSmV-WOiv_C2NviIBRvH_skAHaNbZgoaM0yG_bimh1GfF8syQh2TvskBvT3ky1r5p09II_yffGWHA9gMw3CUfc0bvadLH3l4ZCcTzt_0ZAMiKVvAF1iexuOr0dW/s200/P1120964.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our first pictures together</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjep8jhD7jVUz_GoTkDmXFO2Mh5fMtl1GBt9G95GQyagtr7zjGmSivTwdWGz3awPh15SgIjvX90whtrUdo0USGMTJxFov6SLlrWALYfh4Voe2HNQ7szOD07CoZxbc8m_HdqhVt-yFVRFGMH/s1600/10-11-09b.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjep8jhD7jVUz_GoTkDmXFO2Mh5fMtl1GBt9G95GQyagtr7zjGmSivTwdWGz3awPh15SgIjvX90whtrUdo0USGMTJxFov6SLlrWALYfh4Voe2HNQ7szOD07CoZxbc8m_HdqhVt-yFVRFGMH/s200/10-11-09b.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">After trach surgery</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg96M-lDRodfuQXuxy3A0hD6vNSwMy7bbBlhiAS8f7POMhMnm6NGASvUyWpGvmfQwMtGEfI3R5T8nB7fWIgTSKb7Tw57nXD-eXxFCQnLuDhqi04-dZHTsJe9sM4kk28lXOsehrZ2FeN_kll/s1600/9-6-09a.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg96M-lDRodfuQXuxy3A0hD6vNSwMy7bbBlhiAS8f7POMhMnm6NGASvUyWpGvmfQwMtGEfI3R5T8nB7fWIgTSKb7Tw57nXD-eXxFCQnLuDhqi04-dZHTsJe9sM4kk28lXOsehrZ2FeN_kll/s200/9-6-09a.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Before trach surgery</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDcERY9Q4c_5Gg5JmQ7FGOh8usoah6jUpgdYfuqfYVNglcTsJPBh1bZSGdLYzwvQfszAkV53E17VYlaQcoUIbHMlikqttLukGeTC2bKxHgE-YCuEjcfesTV4N-SMgq2VDTYYMBX-zPzYOS/s1600/IMG_8132%255B1%255D.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDcERY9Q4c_5Gg5JmQ7FGOh8usoah6jUpgdYfuqfYVNglcTsJPBh1bZSGdLYzwvQfszAkV53E17VYlaQcoUIbHMlikqttLukGeTC2bKxHgE-YCuEjcfesTV4N-SMgq2VDTYYMBX-zPzYOS/s320/IMG_8132%255B1%255D.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Noah age 3</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXCZexrgINcnn2qkfQnw9vzmTsgZeE0G_AdiJnhRm9juRc0J3bn1JCG3pa0WzX4NE1Ku4RdzuO8jnK_S1itI8HzQ-SvvLBxMIPlAIboZHUtIUtZAmMynB8v0koNe2saRAV812nD90gPiKI/s1600/IMG_8133%255B1%255D.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXCZexrgINcnn2qkfQnw9vzmTsgZeE0G_AdiJnhRm9juRc0J3bn1JCG3pa0WzX4NE1Ku4RdzuO8jnK_S1itI8HzQ-SvvLBxMIPlAIboZHUtIUtZAmMynB8v0koNe2saRAV812nD90gPiKI/s200/IMG_8133%255B1%255D.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At the beach</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC2PKRp5QZllqCkeMJuaggCIFCuYQXaN_PjG-f1Tus4EO-fRze8ymB9GTKJbywx4WN6aS8nxcAtFoU4sbFfcMlNh-NAPO68omKdZuAiJVihko7hjWJgwdVNThZfAc6UnZVxg4MKh3A55Tx/s1600/IMG_8134%255B1%255D.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC2PKRp5QZllqCkeMJuaggCIFCuYQXaN_PjG-f1Tus4EO-fRze8ymB9GTKJbywx4WN6aS8nxcAtFoU4sbFfcMlNh-NAPO68omKdZuAiJVihko7hjWJgwdVNThZfAc6UnZVxg4MKh3A55Tx/s200/IMG_8134%255B1%255D.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At the park</td></tr>
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Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-60122933041227770772013-05-23T05:47:00.000-07:002013-05-23T05:47:08.569-07:00Pet Peeves of a CCHS Mom (According to Webster's Dictionary a pet peeve is a "frequent subject of complaint"). Sorry for the negativity, but here are a few of the aggravating things that happen in the special needs community.<br />
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1. <u><b>Refusal of services</b></u>--When Noah was an infant he received the RSV shot. This shot helps prevent the spread of the breathing virus RSV. Imagine a ventilated, trached child getting RSV. Not pretty. When he turned one, I called about getting the shot again. We were denied. They said he was too old. Regardless of the doctors orders, or the fact that he has a trach and ventilator plus was one month premature, we were still denied. I still can't figure out how that was logical. Another refusal of a service was for nursing in the home. Our insurance did not cover this even though Noah was coming home with a trach and a vent. <br />
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2. <u><b>Back ordered supplies</b></u>--It is rare that we receive all of our supplies every month at the same time. Something is always back ordered. Usually, its the trachs but this month it was water bags and bacteria filters. I can't understand how the DME does not have extras of this stuff. Our supplies do not change.<br />
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3. <u><b>Number of supplies we receive</b></u>--We are allowed 2 trachs a month yet we change the trach once a week. That means we are suppose to sterilize the trach as best we can and reuse. I do not like doing this but we really have no choice. Everything we receive says "for single use only". Noah gets one (yes one) trach cap a month. He wears them every day all day (except for sleeping). How can it be single use? I realize that we are in better shape than a lot of SN moms. I have heard that someone only got one trach every 6 months! Another mom only gets 15 suction catheters a month. These are also suppose to be single use. It really doesn't make much sense. Noah wears his pulse ox probe every time he sleeps. We are allowed 2 a month. These small probes secure to the finger or toe using a sticky cloth tape. The tape is useless after two uses so we have to use medical tape to adhere the probe to the skin. We use these until they are literally falling apart. <br />
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4. <u><b>Appointments</b></u>--As a SN mom, we have a lot of appointments. For some reason, they want to make them all at 8 in the morning. I have two other children who do not leave until 7:15. I have a ventilator, suction machine, and go bag to pack up and load in the car. Not to mention doing all of this after being up 4 times for ventilator alarms. They always have vent clinic at 1 or 2 in the afternoon because we have to have clinic in the sleep lab since the home vent team doesn't have their own area in the hospital. This is better than 8 am, however it is right in the middle of nap.<br />
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5. <u><b>Missed appointments</b></u>--Probably my biggest pet peeve is the missed appointments. We have 3 people coming to the house every month (previously we had 6). At first, they would call at the last minute and say that they HAD to come to the house in order to get the paper work done. The DME even came one time unannounced. Luckily, I had just pulled in to the driveway. They quickly learned that this was not going to work with us. Unlike many of their other patients, we do get out and go places and some weeks we are rarely home. I have to make appointments to see people so why shouldn't they? I can't tell you how many times I have been sitting at home waiting for someone to show and it doesn't happen. I get all kinds of excuses, mostly that they got tied up doing paperwork. Sometimes they call to cancel (usually an hour or two after they were suppose to be here) but mostly they do not. I have learned to not change my schedule. If they are not here in their allotted time and I have to leave, then I do. Recently, I was sitting in the auditorium watching my daughter's award ceremony at school when I got a call from my mother in law. I sent it to voicemail. She then texts me and says the caseworker is on her way to my house. When they couldn't reach me on the phone, they called her. I had spoken with them earlier and told them it would have to be after 3:00 when they made their visit. I looked at the time and it was 1:30. I'm not sure why they think they can just show up whenever they want. It's so frustrating. <br />
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6. <u><b>The phrase: "He looks so normal</b></u>"--Maybe that's because he IS NORMAL!! He's just like everyone else, only he has a trach and a vent. <br />
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7. <u><b>The phrase: "I'm so sorry</b></u>" when someone learns that he has a trach and a vent. I'm not sorry. He's alive and well. To me, that's a blessing.<br />
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8. <u><b>Know it all doctors</b></u>--There has only been one time that I have had a doctor say that they are the experts. Noah's team of specialists have always treated me with respect and we work as a team. To these doctors I say " I don't care how long you went to school or how much education you have, you do not have to deal with CCHS every day (in fact, you can probably count on one hand the number of CCHS patients you have seen). I am sure you have not spent nearly the amount of time that I have spent researching and talking to other parents of CCHS children. You may be the expert in your field, but you are NOT an expert in CCHS. " The refusal of these doctors to listen to us parents is ridiculous. We live this every day and know our child better than anyone. <br />
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9. <u><b> Caseworkers</b></u>--This goes along with number 5 above. The very first caseworker that we had came out to the house, looked at Noah and informed me that he might be cold with the ceiling fan blowing. I knew then that I was in for a long, frustrating time with these people. <br />
Our 3rd caseworker was nice but had no clue. She missed several appointments. The first time I met her she asked me if Noah could go outside!! I was seriously speechless for a moment. Did she think we kept him in the house, never to leave? Another time, she was getting the paperwork together for him to be reviewed for another year of services. She asked all kinds of questions, which was fine but then made the comment that the nurses reviewing the information would know all about CCHS. I informed her that the doctors didn't even know about CCHS and I was absolutely certain that the medicaid nurses would have no clue since it is so rare. She seemed surprised at my answer, then proceeded to call me 5 times in one day because those nurses had questions. We are now on our 4th caseworker in 3 years. <br />
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10. <u><b>Lack of information</b><b>/research</b></u>-- Having a rare disease means there is not a lot of research out there. Doctors want case studies and journal articles to back up our reasons for doing things but there are very few or even none out there. It makes it even more difficult because there are different mutation levels and different modes of ventilation that have to be researched. <br />
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<br />Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-8426359489594976222013-04-30T05:24:00.000-07:002013-04-30T06:57:04.673-07:00So Your Child Has a Trach--Now What? (our experiences with a trach and some trach tips)The thought of your child having a trach is terrifying. When we were first told Noah was going to have a trach, we were
horrified and scared. The trach looked like some crazy torture device. We had so many questions about trachs and trach care. Once he had the surgery and we saw his little face for the first time
not covered with tape, we knew we had made the best decision for him.
He was so much more comfortable. Upon
learning that your child will have one, many thoughts run through your
head. Will my child be able to talk, eat, swim, bathe, yell, etc. You
will also wonder how on earth you raise a child with a trach. The
answer is that you will raise your child just like any other child
without a trach.<br />
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I have found over the years that
trach care varies from person to person, state to state and country to
country. So, for this blog entry I will be speaking from our experience
and from our care as we were taught at our local Children's Hospital of
Alabama. Fortunately, we had an excellent home vent nurse who made sure we were thoroughly trained in trachs and trach care. Depending on where you live, your trach care routine may be
different. So I have decided to share our experiences with trachs and try to give
some tips for new trach moms. This is in no way expected to take the
place of your doctor's/nurse's orders that they give you for your own
child.<br />
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<u><b>Trach Surgery</b></u>--Trach surgery is a relatively simple
procedure that does not take long (about 30 minutes). Noah received his
trach when he was a little over a month old. His recovery was remarkably quick and about a week after getting his trach, we began our trach training. <br />
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<u><b>Trach brands</b></u>--There are several different kinds of trachs. Noah started out with a neonatal Shiley. He had some issues with his HME popping off and having redness around the trach site. So, we switched to a Bivona flex, which we have been using ever since then. We love it! The flex hangs down some so it is easier to clean his neck. He has no issues with redness (except for when he is sick) and the HME/cap stays on without popping off. He also seems to like the fact that it is not bunched up under his neck like the Shiley was previously.<br />
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<u><b>Trach Ties</b></u>--There are also many different kinds of trach ties. We have tried many brands but our preferred brand is the Marpac. We cut to fit and it comes in two pieces that velcro together. For daily cleaning, we use gauze, a soap free cleanser (Cetaphyl or Physoderm), water and Nystatin powder. First we use the soap free cleanser and wipe around his neck and under the flanges. Then we wipe with a wet gauze to get the soap off. We then wipe with a dry gauze and apply the nystatin powder all around the trach site and under the flanges, being careful not to get the powder in the stoma. We then loop the new ties through the trach holes and fasten. Its a very simple procedure that takes less than 5 minutes. The ties are changed daily. <br />
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<u><b>Suctioning the trach</b></u>--Now that he is wearing a cap on the trach, we do not have to suction as much. When we do suction, I use sterile gloves and a new sterile catheter every time. We use it once and throw away. The size of the suction catheter depends on the size of the trach. We use an 8 French and suction to the number 10 line. <br />
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<u><b>Changing the trach</b></u>--When we change the trach, we make sure to clean the area like normal. I suction him. Then I use a lubricating jelly that I place on the trach. We then take the old trach out and insert the new. He coughs a little when we insert the new trach. The trach is changed once a week. <br />
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<u><b>Sterilizing trachs</b></u>--We only receive 2 trachs a month so I have to sterilize and reuse, which I am not fond of but insurance will only allow 2. So to sterilize, I wash the trach and oberator with soap and water. I then use a pyrex measuring cup and boil water in the microwave. After removing the measuring cup from the microwave, I drop the trachs and oberators in the boiled water. I cover it with a paper towel and let the water cool. Once cool, I remove the trachs and place on a towel to dry. I cover the trachs while they are drying. After being thoroughly dried, I place each trach in its own sealed lunch baggie. So far, he has had no infections and I have been using this method for 3 years now.<br />
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<u><b>Special clothing for trach kids</b></u>--Noah does not wear any special clothing because of his trach. I do not usually put him in turtlenecks because he's not fond of them but if I do, I make sure the trach is not covered by the neck. We even figured out a way for him to wear a tie. I just make sure I can easily get to the ties and that the trach itself is not covered. <br />
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<u><b>Covering the trach</b></u>--We always make sure to keep the trach either capped or use an HME. <br />
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<u><b>Trach Devices</b></u>-- We always keep the trach covered. At first, we used the HME's. This device does the same thing that a nose does. It heats, moisturizes and filters the air. When wearing this, Noah needs suctioning several times. The PMV (passey muir valve) is used for speaking. Air enters the PMV but cannot escape, making the wearer breathe out of their nose. Noah hated his PMV. It took him 2 years to tolerate it! We did several bronchs to make sure there was no physical reason why he wouldn't tolerate the PMV. When he finally began to wear it, he was 2 years old. The only problem I had with the PMV was that it dried him out very badly. I had to remove it for awhile each day because he was in danger of getting a plugged trach. Once he tolerated the PMV, we switched to a cap. We love the cap! It looks like a larger version of a toothpaste cap and works wonderfully well. The cap completely closes the trach off and he breathes normally through his nose. Once he began wearing his cap, his speech improved greatly. <br />
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<u><b>Eating with a trach</b></u>--Noah eats normally with his trach. He did have some aspiration issues, causing us to have to thicken his liquids with rice cereal for several years. I would highly recommend getting swallow studies done periodically to check for aspiration. When he was a baby, I used a cloth bib to cover the trach while he ate. Now, I just make sure he has his cap on the end and he eats without a bib. <br />
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<u><b>Water play with a trach</b></u>--We are very careful with him around water. Noah bathes with no special equipment. I just make sure he is capped or wearing his HME. He does swim also. I keep his head above water and make sure the suction machine is close by in case I have to suction him quickly. We go to the beach every year and I always make sure to take the suction machine. <br />
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<u><b>Trachs on the go</b></u>--We always have an emergency go bag with us at all times when leaving the house. The go bag contains extra trachs (his size and one size below), trach ties, gauze, scissors, saline bullets, trach lubricant, sterile gloves, an ambu bag, stethescope, saline bullets and hand sanitizer. I also have a few extra suction catheters in there. Currenly we use a large backpack to hold everything but I am looking for a somewhat smaller backpack that's easier to carry.<br />
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<u><b>Travelling with the trach</b></u>-- Noah has 3 suitcases when we travel-one for clothes, one for ventilator supplies and one for trach supplies. There are a few ways to keep track of the supplies. One is that you can just go ahead and create little trach bags. Use a baggie and put all of the stuff needed for one day of trach care in there. If you are gone for more than one day, have a bag for each day. Then, all you have to do when doing trach care is grab the bag. Another thing you could do is to create a master list of all the supplies needed and keep it in the suitcase. Check off each item as you place it in the suitcase. During volleyball season, we went out of town several times. I had extra supplies so I just packed those and left the suitcase packed all season, making sure to replenish the supplies I used during the trip. It saved me a lot of work. Once the season was over, I unpacked the suitcase. I always take more supplies than we need, just to be safe. <br />
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These are just a few tips and ideas that work for us. Having a trach is just a little more work but really no big deal. <br />
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<br />Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-72109088299233832752013-04-22T08:39:00.001-07:002013-04-30T05:29:32.898-07:00More than a Mom<br />
From the moment our babies are born, we go in to "mommy mode". Instincts kick in and we somehow know how to care for these tiny creatures who come into the world with no instruction manuals. We learn how to feed them, dress them, bathe them, hold them, and nurture them. For most women, this is something they do easily from instinct. But what happens when you are required to be more than a mom?<br />
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Special needs moms begin their journey like every other mom but then something happens. We are required to become more than a mom. We have no college degrees, yet we are required to know how to work a ventilator. We have no medical training but are required to know how to use the ambu bag on our child and perform life saving CPR. We are not nurses but are required to know how to do trach care and change a trach. We are required, with little or no training to perform the following tasks:<br />
<br />
1. work a ventilator, even though we are not respiratory therapists.<br />
2. clean the trach site and change trachs, even though we are not nurses.<br />
3. monitor sats, co2, heart rates<br />
4. order medical supplies<br />
5. become therapists--feeding therapists, speech therapists, occupational therapists<br />
6. become a secretary--we have to make numerous phone calls to the doctors, equipment companies and insurance companies. Our daily life includes juggling many appointments, sometimes several in one day.<br />
7. become a medical researcher--we scour the internet looking for information and then try to understand the medical jargon in the medical journals that we read.<br />
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I am sure I probably left a few things out, but you get the general idea. We are required to do so many more things than just being a mom. We have no formal training in these areas and get no pay. All of this is in addition to our "normal" mom duties like cooking, cleaning, laundry, grocery shopping, chauffeuring everyone around to different activities, etc. There is really too much to do in just one day. So, inevitably, something suffers. Our social life becomes almost non existent, our houses are not clean, we do not schedule doctors appointments for ourselves because we are so busy and exhausted. There is no humanly way to do all of this without letting some things go. <br />
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We sometimes forget about the normal mommy things. The other night Noah got sick. I immediately went to nurse/doctor/medical mode and began checking his sats, CO2, vitals, monitoring heart rate, checking breaths. I was very concerned because he was shaking, which he had never done before. Immediately I worried that he was having a seizure, which can be common in CCHS kids. Finally it occurred to me to do the "normal" mommy thing and check his temperature. He did, indeed, have a fever, which is not as common with CCHS. Once I gave him medicine, his fever began to recede and he stopped shaking. Most moms would have grabbed the thermometer first. Not me. I grabbed the sat machine, then the CO2 machine and began checking vitals. <br />
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Because our children have such complex medical issues, we often overlook the normal childhood illnesses. We expect the worst and have prepared ourselves to do whatever it takes to keep our children alive. We become doctors, nurses and specialists with no formal training. Many times we learn from trial and error. This is our life. Being a mom is not enough for our children. We have to be so much more. The responsibility is overwhelming at times. The choices we make can impact our children's lives forever. We are so much more than a "mom". <br />
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<br />Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-911147152697306342013-04-16T06:27:00.000-07:002013-04-30T05:28:39.535-07:00Guest blog<!--[if gte mso 9]><xml>
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<span style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Arial","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman";">Several weeks ago I was approached by a man named Cameron </span></span><span style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Arial","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman";">Von St. James. He had read my blog and wanted to share his story. His wife has a rare form of cancer called mesothelioma and he wanted to share his experiences as a caregiver. Even though this is not related to CCHS, I still feel that it is important to share. Rare diseases have a huge impact on families. Many of us with a rare diagnosis have the same experiences and feelings. I think that it is important for us to share our stories. </span></span></div>
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<span style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Arial","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman";">Here is Cameron's story.</span></span><b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Arial","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman";"><br /></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Arial","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman";"> </span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Arial","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman";">Learning to Cope with a Cancer Diagnosis</span></b><span style="color: black; font-family: "Times","serif"; font-size: 13.5pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><br />
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</span><span style="color: black; font-family: "Arial","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman";">I know that my wife,
Heather, has often wondered how her <a href="http://www.mesothelioma.com/">mesothelioma
diagnosis</a> affected me as I cared for her. I hope that this will give her
more clarity and provide some level of help for those currently struggling
through similar situations.</span><span style="color: black; font-family: "Times","serif"; font-size: 13.5pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><br />
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</span><span style="color: black; font-family: "Arial","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman";">Our only child, Lily was
born about three months before my wife was diagnosed with mesothelioma. While
this should have been a joyful time in our lives, our joy was tempered with
grief and deep concern as we heard the doctors’ diagnosis of mesothelioma. At
that point, I had no idea how we would get through this seemingly impossible
dilemma.</span><span style="color: black; font-family: "Times","serif"; font-size: 13.5pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><br />
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</span><span style="color: black; font-family: "Arial","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman";">Immediately, I was asked
to help make healthcare decisions with my wife. Although I felt completely
inadequate for this task, I knew that I had to face reality because it was
vital for me to be there for my wife and help make these decisions.</span><span style="color: black; font-family: "Times","serif"; font-size: 13.5pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><br />
<br />
</span><span style="color: black; font-family: "Arial","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman";">Initially, I could only
feel angry and scared, and I did not know how to deal with these emotions. Many
times, I found myself lashing out with profanities because I did not know how
else to respond. However, for my wife’s sake, I gradually overcame these
feelings since I knew she needed me to be there for her. I learned to mask many
fears so that she would feel cared for and protected.</span><span style="color: black; font-family: "Times","serif"; font-size: 13.5pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><br />
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</span><span style="color: black; font-family: "Arial","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman";">After Heather’s
mesothelioma diagnosis, I found myself incredibly busy caring for her as well
as taking care of daily tasks including childcare, work and travel. In the
beginning, I had trouble finding the time for all these tasks, but I soon
learned a system of dealing with the most important tasks first, and taking the
list on one thing at a time. In addition, our family was blessed with many
offers of help from family and friends. Without these people, I am not sure how
we would have managed throughout these days.</span><span style="color: black; font-family: "Times","serif"; font-size: 13.5pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><br />
<br />
</span><span style="color: black; font-family: "Arial","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman";">One of the hardest
periods was shortly after Heather’s surgery. For about two months following
this, both Heather and Lily stayed at her parents’ home in South Dakota.
Heather used this period to recuperate from her surgery and to prepare for her
next round of <a href="http://www.mesothelioma.com/treatment/">mesothelioma
treatment</a>. However, during these two months, I only saw my wife and
daughter once.</span><span style="color: black; font-family: "Times","serif"; font-size: 13.5pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><br />
<br />
</span><span style="color: black; font-family: "Arial","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman";">To make this visit, I
had to travel 11 hours on a Friday night in a snowstorm. Upon my arrival, I was
exceptionally tired, and only got to spend a little time with them. On Sunday
afternoon, I had to turn around and repeat the 11 hour drive back home. It was
exhausting and short lived, but seeing my family was worth every second of
travel.</span><span style="color: black; font-family: "Times","serif"; font-size: 13.5pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><br />
<br />
</span><span style="color: black; font-family: "Arial","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman";">These two months were
quite difficult, but I realize that they were necessary. Making the decision to
be apart was the best decision for our circumstances because it allowed me to
work while knowing that my wife and daughter were receiving necessary care.
This was just one of the hard choices that I found myself making during this
time.</span><span style="color: black; font-family: "Times","serif"; font-size: 13.5pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><br />
<br />
</span><span style="color: black; font-family: "Arial","sans-serif"; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman";">Even though these were
difficult times, I learned several things. First, I learned to accept help from
others. Second, I found that the ability to make difficult decisions is actually
a blessing because it gave us a sense of control over this difficult situation.
Through all of our struggles, Heather is still here and still healthy over six
years later.<span style="mso-spacerun: yes;"> </span>I hope that our story can
be a source of hope and help to those currently battling cancer.</span></div>
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Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-15515584669078233352013-04-01T08:29:00.001-07:002013-04-30T05:30:15.793-07:00The Sweetest SoundFrom the moment they enter the world, we eagerly anticipate the first sounds of our baby. We expect them to arrive crying. My girls both entered the world crying. Then came Noah. Complete silence, not even a peep of sound. I remember asking the doctor many times if he was ok and she assured me that he was fine. His Apgar score was good and the nurses assured me he was healthy, but deep down in my mommy gut I knew all was not well. There was a nagging doubt that something was wrong. I was correct and our long 4 month stay in the hospital began.<br />
<br />
It took a long time for the CCHS diagnosis but once we discovered it, the doctors moved quickly. He had his trach the day after the diagnosis. I had done some research on trachs and knew that it would impact his life in certain ways but I was not prepared for the reality. <br />
<br />
Recovery from trach surgery was relatively easy. We were so happy to get Noah extubated and we finally got to see his sweet little face without all of the tape and tubes. Then he cried. I was shocked. There was no sound whatsoever. My sweet little boy was pitching a fit and there was no sound. His little face was red and tears poured down his face and all was silent. The only sound was the beeping of the ventilator. My heart broke. I realized that having the trach was going to be harder than I thought.<br />
<br />
Once I got over the initial shock, it occurred to me that even though he was silent, I would still be able to hear him. If he cried while on the vent, I would hear the vent beep. If he cried while off the vent, I would hear the small breathless sound of air being pushed through the HME. I learned to distinguish his little sounds and realized that I could care for him properly even without him making any noise. In fact, when people would ask me if I knew when he was crying, I got annoyed. Of course I knew when he cried. <br />
<br />
As Noah grew, he learned to make noise around the trach. We taught him some sign language but I always made sure he verbalized as well as signed because I was determined that he not rely on sign language alone. When he made that first small sound while wearing his HME, we rejoiced and praised him. We made a huge deal out of each small sound that he made. As he grew, he began to make more sounds and began speaking. That first word was music to our ears. I knew that he was not talking as much as my girls had at that age but I was so proud of how far he had come.<br />
<br />
Eventually he started speech therapy and between that and his normal development, he began to talk. He has now completed almost 8 months of twice weekly speech therapy at the local school. His vocabulary has exploded and now that he wears the cap all day, he is loud and constantly being vocal. It took such a long time to get to this point but he has arrived. <br />
<br />
Last week we went to the mountains for spring break. We went to a local pottery shop. It was not very crowded so the cashier was taking her time with us. While I was paying for our purchases, she engaged in conversation with Noah. She began asking him questions like what is your name, how old are you, are you having fun on your vacation, what is your stuffed bears name, etc. As usual, I got ready to translate for her but then listened closely. I realized that he was carrying on this conversation perfectly well and he did not need my help. After conversing with him for awhile, the cashier statesz that he speaks so well for a three year old. She said that she had not heard very many three year olds speak so clearly and understandably. She had no idea what that meant to me. We had tried so hard over the years to work with him and help him overcome the speech problems associated with the trach. That sweet lady gave us such a special gift when she said that he was speaking so well. I couldn't have been prouder of him. All of the speech therapies, the trials of getting him to tolerate the PMV and then the cap had finally paid off. Now I realized that everyone could finally understand him and he could communicate his thoughts and needs.<br />
<br />
I realized early on to never take any small sound for granted. I cherish every cry, scream, and word. The other day we were shopping and Noah told me "I being loud mommy". Instead of telling him to be quieter I simply said "yes you are" and kept shopping. Every little sound means so much. Noise does not bother me in the least, in fact it does my heart good to hear him being loud. I love nothing more than to hear his little voice raised loud and proud. Never take your children's voice for granted. Every sound and word should be cherished. The words shut up are never used in our house. <br />
<br />
Yes, trachs can impede speech development but there are tools that can be used to overcome this. It may take awhile, years in fact, but eventually the words will come and the trach voice can be heard. <br />
<br />
The saying Silence is Golden does not apply in our house. Enjoy every little sound and word. Embrace the noise. Your children's voice is the sweetest sound you will ever hear. Never take it for granted and always listen to them. There is no sweeter sound than the sound of Noah saying "I love you Mommy". Our home is filled with the laughter, screams, words, and sounds of Beth, Hannah and Noah. I would not have it any other way. <br />
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<br />Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0tag:blogger.com,1999:blog-4133264055344808161.post-28333976396434220992013-03-13T06:20:00.001-07:002013-04-30T05:30:47.703-07:00The FearFear. Such a simple word but one that is very powerful. All of us have felt fear at one time or another. It's a basic human emotion that one feels from time to time.<br />
<br />
CCHS parents feel fear every day. We can hide it and not express it but it is there. We have a special kind of fear, the kind that most parents of children with special needs feel. There are the fears of our child's general well being--are they eating enough, is that little cough going to grow into a big sickness, are they going to be bullied in school. These are just simple little fears that even the parents of "normal" children feel.<br />
<br />
Then we have the fears that occur with a rare disease--are they ventilated adequately, will our power stay on during storms, are we seeing enough specialists, should we send our kids to school during the flu season or keep them home to try to prevent them from getting sick, do we have enough supplies for the month and what do we do when things are backordered. These are small fears that we handle on a day to day basis.<br />
<br />
Then we come to the greatest fear of all. The fear that our child will not wake up. This is a deep, paralyzing fear that we live with every single day. Most days we can bury it and go about our day to day activities. Then something will happen and the greatest fear will return with a vengeance.<br />
<br />
Yesterday was one of those days. Our greatest fear was realized. The CCHS community found out that a little five year old girl named Lucy had passed away. She had a trach, like many of our CCHS kids and her day started normally. Then, as her mom stated, she "crashed like a rock". We are all devastated. Many of us (me included) did not know her or her family. This doesn't really matter. She is one of us. Her parents are in the fight with us, and we feel the loss also. A picture was posted showing her beautiful, smiling face and brought us to our knees. We saw a beautiful, vibrant life cut short and in her face we saw our own child. <br />
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This is our deepest fear. We try so hard to keep our children healthy. We fight the medical community, insurance, equipment companies, and schools to make sure our children get the best possible care. We hook them up every night to electronic equipment, checking and double checking everything to make sure it works properly. We sleep lightly (if we sleep at all) waking for each little beep and exhalation of air. We do everything that is humanly possible to keep our children alive. Deep down, we know that sometimes this may not be enough. CCHS is so unpredictable. One day your child is fine and feeling great, the next they are on the vent 24/7. This is our reality.<br />
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We cannot let the fear define us. We have to stay strong and provide our special children with a life like every other child. Most days this is not so difficult but every now and then it becomes almost unbearable. <br />
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Please remember Lucy and her family in your thoughts and prayers. Never take a moment for granted. Live your life to the fullest so that you have no regrets. Enjoy every moment.<br />
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Rest in peace precious Lucy. Your CCHS community mourns you deeply. Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com2tag:blogger.com,1999:blog-4133264055344808161.post-26295655383193355112013-02-28T11:18:00.001-08:002013-02-28T11:18:28.060-08:00Today is Rare Disease Day. Noah has the rare disease of Congenital Central Hypoventilation Syndrome (CCHS). A rare disease is defined as "any disease or condition that affects less than 200,000 persons in the US or about 1 in 1,500 people" (Rare Disease Act of 2002). Rare diseases can be difficult to diagnose and because so few people have the disease, research for a cure is not widely available. Approximately 50% of people affected by rare diseases are children. 30% of children with rare diseases will not live to see their 5th birthday. Rare diseases are responsible for 35% of deaths in the first year of life. According to the Kakkis EveryLife Foundation, 95% of rare diseases have not one single FDA approved drug treatment. Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease. (From globalgenes.org). <br />
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CCHS is NOT a lung disease. Noah's lungs are perfectly normal, even though he must use a ventilator while sleeping or sick. CCHS is a disease of the autonomic nervous system. In addition to problems with breathing, CCHS patients can also have problems with regulating heart rate and blood pressure, have abnormalities in the nerves that control the digestive tract (Hirshprungs Disease), have an increased risk of developing tumors of the nervous system (neuroblastomas), have eye abnormalities (decreased response of the pupils to light), decreased perception of pain, low body temperature and sometimes profuse sweating. They can also have learning difficulties and other neurological problems. Currently, there are only approximately 1,000 people worldwide with CCHS. More than 90% of cases occur from new mutations of the PHOX2B gene and there is no history of the disorder in the family. <br />
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In Noah's case, he has a mild mutation of 20/25. We have not noticed any issues with his heart rate and blood pressure as of yet. He gets an annual holtor monitor to check for heart pauses. He does have some eye issues and had to have his eye patched when he was younger. I have also seen his decreased perception to pain. We call him our tough guy because he rarely cries when he gets hurt. He does have issues with being hot most of the time, especially in the summer. We also have to be careful in the winter because he can get cold very quickly. As for learning difficulties, we have not noticed any as of yet except for his speech, which I think has to do with being in the hospital for 4 months and having a trach at an early age.<br />
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It is amazing to think how one small change in one gene can create such widespread issues throughout the whole body. This is a lifelong condition for Noah. He will never outgrow it and will never get worse, but also will never get better unless there is a cure. We have to be vigilant every day of his health and make sure he is well ventilated to prevent serious complications. <br />
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My hope for him is that there is a cure. My goal is to help raise awareness of CCHS in the hopes that it will become recognized by the medical community and that more research is done to help find a cure. I am so thankful for our small, but close knit CCHS family and our CCHS Network. We have never met face to face and some of us are in different countries but together we have our amazing children who fight a battle every day. We can learn so much from them and from each other. <br />
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Please take a moment to think of those of us who are faced with rare diseases every day. Help us spread the word and find a cure. <br />
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(Special thanks to Jo Cramer Isley, a special mommy to our CCHS friend Lacy) <br /><br />Melindahttp://www.blogger.com/profile/07490759249600548691noreply@blogger.com0