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.
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.
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.
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.
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.
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.
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.
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.
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.
|Noah when he was about 3 weeks old.|
|Hannah's first time to see Noah. He was 2 months old|
|Beth's first time to see Noah|
|Noah age 3|
|Noah age 3|