As I am struggling to write a post about Emily’s day at the Clearwater Marine Aquarium.
I’ve decided to introduce you to another fantastic family.
Let’s meet Megan and Wade.
1. Can you tell me about your family?
My husband Chris and I are both teachers, and reside in Illinois with our almost three year old son Wade. We are expecting our second child any day now.
2. Tell me about your loved one with cri du chat syndrome.
Wade (3 in May) was diagnosed with Cri du Chat at 4 months old. He was born full term on May 16th, 2012 and we brought him home a day later. We spent the first few months trying to figure out why he was constantly vomiting. We went to several doctors, and no one could give us answers. He was having a hard time putting on weight. At around 3.5 months we took him to a pediatric GI. We walked in his office, sat down, and started telling him Wade’s symptoms. As soon as Wade let out a cry, the GI stopped dead in his tracks and said “Has anyone ever said anything to you about his cry?” From that point on we were sent through a whirl wind of tests, and then received the official diagnosis at 4 months. Hearing all of the negative things that he would never do was the hardest. Today, Wade is the happiest kid around. He loves “ball” of any kind, music, water, and anything that spins. He has not had any major health problems and surprises us with something new he can do all the time. Wade loves to eat, especially popcorn and macaroni and cheese, and is a pretty good sleeper (which we are so thankful for).
3. Tell me about doctor appointment, therapies or school.
Wade started OT, PT, Speech, and Developmental therapy at 5 months old. He continues to receive each of those therapies for 1 hour a week. I truly believe that these therapies have helped him more than we ever thought possible. He also participates in aqua therapy and equine therapy. In March he started at a local preschool program, four mornings a week. He will start preschool full time in the fall, going five mornings a week. As for doctor appointments, the first year was full of them. It felt as though we lived at the hospital. However, once they had run every test imaginable to make sure nothing else was wrong with him, the appointments decreased dramatically. We now just go every 6 months for hearing and vision, and check-ups.
4. Tell me a success story.
There are so many success stories, that it is hard to pick just one. When you hear that your son may never walk, talk, or even live past 5, you celebrate the little things in life. Wade started “walking” independently about 4 months ago. He is still unstable, but is getting better with each passing day. Our latest success is that he is going potty on the toilet (both #1 and #2 ). He never tells us he needs to go, but whenever we put him on, he goes. I would definitely say that verbal expression is the hardest for him, but he does have some words (Dada, ball, hat, bye bye, etc)
5. What else would you like the world to know?
The first year was by far the hardest. Joining the 5P- group on Facebook has been a life saver for us. It has connected us to so many families. We have been able to meet several of them and feel like a normal family for a day or two. We look forward to attending our first conference this summer.
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I cannot believe doctors are still giving such horror stories as prognosis .
I am so glad you have found each other through Facebook and this blog !
Our Facebook group is something I wish was around in 1999… It would have been nice to be able to connect with so many others, so easily.