I can't begin to describe my love for this place. I have mentioned it a million times but yet again it doesn't cease to amaze me. I am so thankful for Shriner's and the people that donate their time and money and give donations to serve children.
Today was our orthotic fitting and our speech evaluation. I was SOO proud of Tyler for being SO good. we talked about it before we got there and he was pretty good. The orthotic guy is NOT Brett but he took the time with us and did what he thought was best. Because we couldn't see any markings he was pretty sure that the kiddie gaits ( the 3K braces) are the cause of his sores on his ankles and not the SMO part of the shoe.
No adjustments were needed but he was impressed with his OTHER orthotic guy and the quality of the brace. Seriously I can't tell you enough how much we appreciate Brett, his time and Shriners for their amazing employees.
We then went upstairs for Ty's evaluation. We were early since they didn't have to do much for the braces. The upstairs of the "hospital" is a huge play room with luv sacs, TV's, a basketball hoops, balls, climb on toys and a few ride on toys. Ty was pretty OK with the wagon.
As we are going around the top floor of the play room we keep getting interrupted by the worker in the school. She was determined to get Tyler into the school room ( the room they have set up for the kids who are in for a long time.) and to give him a coloring book. Come to find out an anonymous donor donated 3000 boxes of crayons and a few thousand coloring books. She was so excited to give them to Tyler.
We then went over to the PT, OT room and waited for our speech lady. Ty loved playing all over the equipment and had a great time walking up and down the treadmill. He thought the was pretty cool walking to the mirror and waving at the other Tyler.
The speech lady rocked. I really liked her. Ty had a mini meltdown when we started and wouldn't let me talk to her. He wanted books and all of them. He was pretty good. But after awhile we found it would probably be better if I left for awhile. He didn't cry when I left but kept Blankie over his head for a while.
They have an observation room so I was able to watch him and was pretty proud of how well he did. The consensus is YES we need speech . We need it badly and Shriners will provide it free of charge. ( seriously there is waiting lists EVERYWHERE else and our insurance will only pay for 12 visits)
A few more things that she threw out there was a motor planning issue. Meaning the part of his brain that was damaged makes it so he understands everything he is being told but when it comes to expressing it and when he is looking for the right words or combination of words the slate is blank.
Another theory is that his muscles in his mouth are not right. A lot of kids with Cerebral Palsy have a speech issues because of this. They are gonna start working with some of his muscle issues and see how and what comes of it.
And another part of the puzzle is apraxia. Though true apraxia you cannot have any other medical issues ( meaning that if you have anything else wrong with you... even asthma or a medical condition or developmentally delayed) it cannot be considered TRUE apraxia be part of the problem. Apraxia kids can't seem to get the words to connect. So they may say "ba" but can't put the "nana" with it. Or they will omit certain sounds. For the last month we have really worked on getting ANY sound out of Tyler. We have tried just the sound of the letter. Our house and our play is getting kinda funny. It seem to be working and sounds are coming. But apparently not the right ones. We need Vowel sounds. If we can get the top 5 vowel sounds we are looking at a promising but LONG LONG road to get words.
They will be helping us with a communication device to see if we can't get the brain holding more vocabulary on the hopes that at some point he will make it come out.
We will be getting speech once a week there and 2 times a week at school. Then we have homework from private speech to get more sounds out. We are really hoping that we can get some more communication out of Tyler. At this point I am not sure how fully frustrated he is with his communication as much as I ( and his dad) are. there are so many things we want to hear that i think we took for granted '"thinking" we would hear as he got older.
We are happy with Tyler and how well he is doing. We knew it would be a long haul and I wish we knew earlier just what that little hole ( OK... its not really little) was going to do for his growth and development. How I wish I could take away the hard.