Tuesday Cade had a great day at OT. He was very verbal...and that was encouraging considering many of his therapy sessions now are spent making noises and being quiet instead of talking. Those of you who know Cade know that he is a very verbal child, so it has been a bit distressing to me to see him seem to shut down a bit. Julianna has explained several times, though, that his body is trying to get regulated during OT, so his speaking seems to turn off because his brain cannot handle conversation during the intense time of trying to regulate. I know this all seems baffling...I have been hearing it and living it for a while and I am still baffled! But it makes a lot of sense...Cade's brain is being so inundated with information coming in through his sensory systems that his "mis-wired" brain cannot handle taking on more tasks.
This problem also greatly affects Cade's ideation and motor planning - his ability to generate ideas for play and figure out how his body will carry them out. Julianna has been working on this a lot. This is a struggle for Cade...he will generally come in to therapy each day and begin by repeating the last task they worked on the day before. This is because his brain does not have to work to generate a new idea...he can simply pick up where he left off.
Tuesday Cade somehow decided that we could pretend that we were at Chuck E. Cheese. Now he LOVES this place...but I must tell you it's not a place we frequent. Besides the obvious fact that it's full of kids and loud and not extremely appetizing because of the atmosphere -- mostly it sends Cade's sensory system over the edge!! There is so much going on there that he struggles. But a Chuck E. Cheese in the therapy room at the STAR Center...that one he handled well! I was so proud of him for the work he did to generate ideas and make them happen.
This video shows some little balls that he found and decided he would put them in his "ticket booth" so we could buy them as prizes:
Cade was also able to develop a conversation with some little "fuzzy creatures" (basically stuffed animals!). He has been fixated on being a garbage man over the last few days of therapy...he finds bins of things in the room and dumps them all in the large ball pit. Poor Julianna has to fish them all out at the end of our session (please continue to pray for her patience and understanding to continue...we love her and she is so good with Cade!). Tuesday, though, he was able to expand on his ideation...it was awesome to see!
Today was an ok day at therapy...he reverted back a bit to his running around the room and being quiet. This is a struggle for me...it is hard to see the back and forth progress in therapy. I know this will be a long process...rewiring Cade's brain is not something that will or even can happen overnight. But I wish it was moving faster.
This video shows Cade on a therapy swing...you will notice the lack of conversation here
Julianna and the social worker we have been seeing here both recommended that we make an appointment with the STAR Center's developmental ped. Eric and I hesitated...we are blessed with a fabulous developmental ped. at home and completely trust all that she has done for Cade. But we finally decided that, since an opening came available, we would go ahead and take Cade for an appointment. Since the STAR Center works as a multidisciplinary team to help Cade we felt that the medical side was important. We also wanted to discuss Cade's sleeping patterns and behaviors with him. We were able to see Dr. Frank on Tuesday, and although we haven't received official feedback from him yet, he did tell me that there were some things he would like to try before we left on this trip. We were also encouraged to know that he would be contacting our developmental ped. at home and discussing his plans with her...it is important to us that they work together. We are very hopeful that we receive some good feedback from Dr. Frank.
Please pray for the STAR Center team tomorrow (Thursday)...Dr. Miller, Julianna, Dr. Frank, and the rest of the team will be specifically discussing Cade and his needs and treatment. We are desperate for answers and help, and we are counting on some feedback on what steps we need to take next.
Satan is on the move and has caused several problems to come up at home. Since we aren't there to be able to take care of them we are counting on dear friends of ours that have been taking care of our animals and our house. It is a burden for them and a huge worry for us....please pray that things settle down a bit and we can refocus our efforts on our task here in Denver. Also, we have still not resolved the plane ticket issue with Delta. We have requested a letter from the STAR Center discussing our need to stay. Eric contacted the corporate office today, but we were only able to get some info stating that, although we might be able to get the change fee waived (and this is by no means a guarantee) that we would still be responsible for paying the difference in fare. Just the fare difference could total around $400. Although this is a ton this may be our best bet. We are going to the Denver airport on Friday morning to plead our case. Please pray that the supervisor we are able to talk to is sensitive to our case and is able to do something more for us.
Whew...it's hard to sit back and take a deep breath here these days (and it's not just because of the elevation!). But tonight I thank God for the fuzzy creatures and Chuck E. Cheese that have been able to bring Cade out of his shell this week. And I pray for more of God's blessings to rain down on my little boy to help him dig out of this super struggle he is in.
PS: I have uploaded these videos using You Tube in hopes that they will be easier for you to see. Please give me some feedback on whether they were easier or if there was any difference. Thanks!
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