Wow, I stumbled on this site today. I had sort of forgotten about it. It really sort of put things n perspective. My last post was the day before we received Owen's diagnosis.
It took me back, interesting to see what I was thinking at that time. Right before our lives changed forever. They broke the news; I was right, it was more then being born premature. However, I had no idea what was waiting for us. The Peanut had a microdeletion on the long arm of one of his 9th chromosomes. It was known as 9q34.3 (ummm what? My child has a number? It doesn't even have a name?). We were told he was the 124th diagnosis (not at this hospital, not in Ontario or even Canada. Ready for this?) in the WORLD. Little is known about it. He will not have children, he will be non-verbal, he will continue to have low tone, have global delays and life expectancy is similar to those diagnosed with Downs Syndrome. That's it, that's the information we got about our child's future. We could "Google it" for more information. We went from "don't worry he was premature and taking a while to catch up" to a life changing syndrome the doctors had never heard of.
It was clear we were not gong to get anymore information from the hospital. Google in its vast knowledge told us it was now known as Kleefstra Syndrome (since April 2010). There is a spectrum. A lot of scary medical concerns. Various specialists offices started calling. We had blood tests, ultrasounds, scans, EKG's, EEG's. We started Speech, Occupational and Physiotherapy therapy. We got a family support worker, a vision support worker, and an early interventionist. My head started to spin and in a moment of insanity I decided to go back to school to learn everything could to help my Peanut. In Jan 2011 I was a mom of 2, working full time, recovering from eye surgery, taking 2 college courses and attending a minimum of 4 appointments a week (some weeks more like 5-6).
By May I had finished my classes with a perfect 4.0 average. Matt had run in the election, we had gone on an amazing family vacation to Disney. Everythign was cruising along. Then Matt went back to working in the city (benefits are GOOD!). My support system at home was gone. He was out of the house by 7AM and gone until 6PM or later. The Princess' school drop offs and pick ups, and all the appointments were all my responsibility now. Something had to give. I took a leave of absence from school. Thankfully, I work for an amazing employer that understood and allowed me to cut my hours back to facilitate all this. I hit bottom and sought help from my doctor. It wasn't the first time I had suffered from depression. I knew the symptoms and it scared me.
It's been a struggle. Owen learned to crawl in July 2011 at nearly 2 years old. It was on my birthday, the best gift ever! He continues to amaze us with all he has accomplished. All these things they said he couldn't do. He speaks. Perhaps not as much as you would expect from a nearly 3 year old. But those of us who spend time with him understand. He has an amazing ability to parrot things we say. Mama and Dada have evolved to Mammy (thank you Dora) and Daddy and it makes me smile just to hear it. Non-verbal my ass!!
He was fitted for a wheelchair 2 weeks ago. It was really tough for me to admit he might need one. However, I understand that for a child with low tone, even when he learns to walk, it will be very taxing and a wheelchair is a good way to ensure he can still go where he wants to go when he wants to go there. He loves Elmo, Dora and Thomas. He is a great dancer and gives the best cuddles of anyone I know.
He has the most amazing big sister on the planet. The Princess has endless patience when it comes to the Peanut (but nothing else it seems!). She learned to read so she could read him stories and he loves to ask her to read to him "Ia, Gorie?" (Mia, Story?) She always knows what he wants or needs. She s so in tune with him. His face lights up when he sees her and she can calm him down in any situation. She can get him to do his therapy activities with much less coaxing then even his therapists can.
We currently have 7 doctors, 2 Speech Pathologists, 1 Communication Disorders Assistant, 1 Occupational Therapist, 2 Physiotherapists, a vision consultant, a behaviour management consultant, an early interventionist, a music therapist and a family support worker on our team. We are wait listed for 2 more programs. Most mornings we have to check the agenda to see where we are going. It's hard to remember everybody's name. There were more people at the Peanut's annual family support planning meeting then at our family Thanksgivng dinner!
What's next? Wheelchair training, a new walker, alternative communication training, sign language classes, swimming lessons and hopefully horseback riding. Where will we be in a year? Who knows, but we'll be doing it together and that's all that really matters!