Your Curse is My Miracle: A Year in Review--The Fourth Year

Noah enjoying his birthday cake

Noah at Chuck E. Cheese

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.

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.

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.

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.

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.

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.

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.

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.

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.