A Single Word Made Me Cry

A fw weeks ago the boys and I headed to Rochester and the Mayo Clinic for another check-up with James' cochlear implant. The Friday before we went I was able to have a meeting with his current teachers and therapists and the deaf and hard of hearing teacher from the West Fargo School District. We had decided when we moved that we wanted to keep James in his current school and class until the end of the year. We figured that moving him to a new preschool and then again to a new school in the fall for Kindergarten that it would be too much disruption and learning for both James and teachers to get much productivity. It's worked well and we're now working on getting his new teachers and therapists ready for him. Anyway, this meeting was to talk with the new teacher and let her know James abilities and needs.

While we were having this meeting his speech therapist from his current school gave me the most AMAZING news in the world. That week during school while they were working with James on Yes and No-after the therapist modeled the word "yes" for him he SAID THE WORD "YEA" ..... TWICE...ON PURPOSE! I absolutely couldn't believe it! I've cried several times over. Of course we haven't been able to get him to do it again yet-but how awesome that he was able to do it that one time! I've honestly never even really thought what James' life would be like if he could speak. I can't even imagine the possibilities that would open up for him. I've been pretty cautious with myself and don't try to think about stuff like that too much. We just take one day at a time and go from there.

So in Rochester not much has changed. They were happy with James' progress and re-programmed his mapping. He's had about 8 months of "hearing" growth in about 6 months time-so we're on track and the implant has helped! He's been a little cranky lately when we put it on in the mornings. I'm hoping it isn't beacuse of the sound being too loud. We'll have to watch him closely and hopefully he'll get used to it. In the meantime I'm not going to mess around too much with his growing programs. His growing programs are where I can slowly increase the amount of sound and the loudness of the sound. Each time we go to Rochester they program his implant with 3 growing programs and we slowly work our way through them. I usually don't push him too hard with this because I don't want him to be afraid of the implant or dislike it. We take it really slow and wait to move up until we know that he's completely comfortable where he's at currently. We'll go back to Rochester again in August before school starts and after that appointment we can start only going every 6 months or so! I'll be excited to not be traveling so much with the boys.

ABR-Advanced Bio Mechanical Rehabilitation

I'm not sure what's taken me so long to write this post. I'm really excited about ABR (Advanced Bio Mechanical Rehabilitation) and I can't wait to see our hours of work on James and how it will improve his quality of life.

So, in August James, my parents, my little sister and brother and myself headed for Montreal. Long car ride! James did surprisingly well considering he hates long car rides. We watched a lot of movies (or just a few movies a lot of times) and even got a new one on the way.

We spent 3 days in Montreal. We arrived the Sunday evening before ABR training began. Monday morning my mom, Abbey, James and I headed to ABR. The morning session was more of an introduction. They spoke to us/taught us different things about Cerebral Palsy in general in addition to teaching us about the basic principles of ABR. My mom really learned a lot about Cerebral Palsy in general she said. One of the big things is that James doesn't bear weight. If you think about it, we can all just sit and be bearing weight and we don't have to consciously think about it-our body just does it. Even in a young baby-if you sit the baby on a table and give it support to keep it's head up and torso-it sits on it butt and bears weight. In kids with CP, like James that doesn't happen. If you try to sit James down-he doesn't sit on his butt and he doesn't bear weight. He falls over and leans this way and that. He almost kinda sits on his tailbone. Another concept is compressional strength and weakness. James obviously has weakness. The easiest way for us to see this was they took a picture of a healthy child-pretty young (a 2 or 3 month old maybe) and hold the child by the chest. The child keeps it's "figure" but if you do that to James his whole body collapses. His ribs collapse in and his head is bent over and his shoulders slump. Hopefully one day I'll have some pictures to show-that's easier to explain it.
In the afternoon all we had was an assessment. It was pretty thorough and they took thousands of pictures. They'll use these pictures to help assign/prescribe exercises and also to gauge improvements.
The next day, just James and I went back and we began our training. We learned 5 different exercises-1 for his chest, 1 for his upper back, 1 for his neck and 2 for his abdomen. The staff were amazing and I have such hope for this to improve James' quality of living.

On our way home we took a day to spend at Niagara Falls! How beautiful. James doesn't normally like sightseeing or hot weather but he did like Niagara Falls. I think it helped that the water/mist from the falls kept his cool. He didn't particulary like the boat ride because of the poncho's but he did pretty good the rest of the time.