Friday, November 7, 2014

Week #14

The last couple of weeks have been pretty eventful unfortunately, and we actually spent three days at CMH last week. Thankfully all in all Brayden is doing quite well!! The weekend before our MRI Brayden fell and knocked a tooth loose, so we took him to the dentist last Monday. Unfortunately the xray showed a large abscess that they say has been growing for a while and the tooth had to be pulled. Thankfully they were able to pull it while Brayden was still sedated after the MRI so for that I am grateful! He has had no difficulty adapting to the loss of one of his front teeth, and I think it bothers the adults in his life a lot more than him. The MRI showed mixed results, but I think we should just be grateful that it didn't show all negative things. Basically it shows that some of the areas which looked worse on his last MRI (which prompted our chemo vacation to end) continue to look bigger and brighter, but some of the other areas are looking smaller and less bright. Vinblastine tends to build in the blood over time so 6 month scans can show more improvement than 3 month scans. Hopefully our next MRI will show all good things!

Brayden trick or treated as a dinosaur this year and he was awfully cute. To be honest though, I don't think he loved the trick or treating. He refused to carry his bucket but he did say "trick or treat" and "thank you" at nearly every house we went to. He was relieved to take his dinosaur costume off and carry on with his evening as usual.

This week I received the results from the school district regarding his eligibility testing. He qualified for services and will start formal special education preschool January 6th. He will go Monday through Thursday from 8-11. In my mind, I knew he had some delays and that he was not on track with his peers, but I was surprised at his lower scores.  Don't get me wrong, I am happy he qualified and we won't see a decrease of therapies, but how I felt when they gave me his scores surprised me. There is something about ranking his development that hurt my heart because I have always chosen not to do that. During our 3 years in first steps I have always said "I don't want to know where he is on the developmental scale, just tell me what to work on and what the emerging skills should be" and they respected that. I guess in my own way I just didn't want to know because it is so easy to focus on the negative instead of the positive.

In the summary portion of the report it says:
 "Evidence of a young child with a developmental delay does exist in the areas of cognitive, communication, and physical. Brayden's performance is below that of his same age peers. Brayden would benefit from appropriate special education services to address his significant delays".

Seeing that on paper hurt my heart, and I think it is probably because I know how far Brayden has come. At one point last year we were working on alternative forms of communication because he couldn't speak. Now he is speaking full sentences (sometimes appropriate and sometimes not) but he is making progress every day and that's what matters. I am very grateful that he has the opportunity to start formal preschool and hopefully with the right teaching approaches he will continue to make leaps and bounds developmentally. I go back in 2 weeks to fully determine which and how much of each therapy he will get in addition to his classroom time. I am sure he will love preschool and I am sure he will love riding the school bus even more. It is a bit scary though to think about putting your just turned 3 year old (with significant physical, communication, and cognitive delays) on a school bus with someone I have never met, but I guess it's part of it. I'm sure we will all adjust and all will be well. I think the toughest part will be that I won't be allowed to participate in his therapies any longer. For 3 years now, I have been in the floor with him and all of his therapists and they have been teaching me how to help Brayden. Now he will be at the school district where parents aren't even really allowed in the building. I know he will do awesome by himself but it will be hard for me to get a weekly progress report versus talking directly with everyone involved in his care.

I think this weekend mawmaw and pawpaw will be taking Brayden to see the dinosaurs with his bestie. I am sure they will have a great weekend as usual! As always, thank you so much for praying for my sweet boy and following his story!

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