Friday, June 24, 2011

Something's Up

Well, kind of. It seems to be getting better, but anyway...

For the last two weeks, Bean couldn't get enough outside play. He mastered walking up and down the sidewalk and did it over. And over. And over. His walking has really taken off outside because he doesn't like his hands to touch the concrete or grass in our yard or the mulch at the playground. He has enjoyed being outside so much that he was actually throwing tantrums when we came inside. This is a new thing for him but we were actually excited to see because it's totally developmentally appropriate!


That came to a screeching halt this past Wednesday. Since then, when we go outside, he plops to the ground and refuses to walk or goes to the door and fusses to go inside.


At first, I thought it was because he was still tired from his doctor's appointment on Tuesday. Then, I realized that his feet must have grown overnight and his shoes were too small so I thought that was it. Nope. When we went inside, he walked just fine in his shoes. What I eventually realized was that it was windier than usual and there were guys working next door with power tools. So, I think I figured out that it's a sensory/hypersensitive hearing thing that is common for people with Williams syndrome. I'm noticing this more and more and am actually whisper/singing to him at meals because the noise seems to bother him then, too and he eats really well when I whisper to him. Thursday was bad, too but he did much better today when his occupational therapist this afternoon and his daddy this evening. 

Baby J, on the other hand, has been enjoying every second he can get outside. Other than the playground, his favorite activities are drawing with sidewalk chalk and bubbles.


In other news, Bean had his appointment with the developmental ped on Thursday. It went well - we didn't really learn anything new but it I really liked the doctor and she related well to Bean. She agreed with everyone else's assessment that he is functioning at about the age of 1 year old with the exception of speech which is more profoundly delayed. The appointment was long but he had fun playing with the various toys and showing off his party tricks. He did get a bit overstimulated and did some rocking and head banging. The doctor felt pretty confident that it was a sensory/regulation issue and I'm inclined to agree because he settles right down if I put the loaner compression vest on. Oh! And speaking of the compression vest, I got word today that the cost should be covered by insurance and medical assistance. I am so excited for him to get his own vest because it has made a HUGE difference at meals - Hooray!

I haven't heard back yet from Bean's endo yet on his labs from Tuesday but the developmental ped looked up the results in the hospital system. She told me that his calcium was in normal range (AWESOME!) but that she would leave the vitamin D level up to the endo to intrepret. I took that to mean that he is vitamin D deficient - which doesn't surprise me since he's been dairy free since birth. The developmental ped also voiced her concern about his blood pressure. I called the endo today to request the results but haven't heard back yet - I'm guessing that one of the results is still pending. As for the blood pressure, we're following up on that, too.

We don't have a whole lot of plans for the weekend except for buying new shoes for Bean. That and getting the kids outside so Baby J can get his wiggles out and Bean can be desensitized even more to whatever was bothering him earlier this week.

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In other news, I'm participating in a special needs blog hop this weekend and looking forward to learning more about the challenges and joys other families are facing. You should check it out, too! 


5 comments:

  1. So glad to hear that your insurance covers your needs.

    Always thinking of you. And glad to hear that you are figuring things out bit by bit...

    Rachel

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  2. My first thought about the tantrums at coming inside was that Mad did it at that age, too.

    Bean is very lucky to have a detective for a mama. Way to go figuring out his needs. I'm sure a lot of that will become second nature, but this journey is how that happens. Unless you have some sort of wand, in which case I'm totally jealous.

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  3. I think it says something for how well you know your Bean that you figured out his sensory issues affecting his outside time. Bobby has issues with that as well. Logan, on the other hand, thinks the wind is something just to entertain him, and him alone.

    I loved scrolling down and checking out some great pics of your J and Bean - adorable little guys! Great to have a chance to connect a bit more than 140 characters at a time, and I look forward to coming back to read more about your little guys soon!

    Kat

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  4. Kieran had texture issues with the grass et. al, but he's gotten over it and now loves running in it. Hang in there -- Bean will remember his love for the outdoors soon. :o)

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  5. I am new to your blog...part of the blog hop... (new to that too) Thank you for sharing your stories.

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