Thursday, May 31, 2012

a non-emergency medical update

I think I posted a few weeks ago that the interim neuro here in town called us with Bugaboo's MRI results - nothing out of the ordinary. Which is good for getting his cyst removed. It is slightly frustrating because we still don't have any answers for why Bugaboo is having developmental delays.

Our pediatrician wants us to see a different pediatric neuro (I read between the lines - different aka better), so we got into Kansas City's children's hospital faster than Columbia. They sent over G's MRIs, and we have an appointment with that neuro July 23. I have been told she is a doctor who is very into teaching her patients/families, so that will be a good thing I think.

Our pediatrician also wants Bugaboo to see a geneticist to try to figure out what is going on. Unfortunately, there is a nine month wait list for that.  Apparently a geneticist also visits here, and the wait list may be shorter (as in six monts perhaps), so they are putting us on that one, too.

Bugaboo already receives P.T. from FirstSteps (our early intervention program here in Missouri), and they are coming out in a couple of weeks to do a speech and OT eval.  I have been asking for both of these for a few months now, but everyone kept saying, "Just wait and see. He's a preemie. It will click."  Well, now that he is almost a year and a half all the "in the know" people seem to be freaking out just a bit that it hasn't clicked - that he isn't saying words (other than mamammama and daddadadada - and not even directly to us all the time).

His eye contact is still somewhat of a mystery - he watches Bubby a lot and engages when The Hubs plays with him in the "rough play" that daddies and sons do, but he doesn't respond a lot to me in the average day to day play/tasks, etc. He is happy most of the time, but he is getting more and more agitated with noises. He cries a lot with sudden sounds or actions (much of the time from big brother) that seem to upset him. Motion calms him. He loves to swing, be bounced, be "tossed" around. He is happiest when he is doing these movements or when he is in water.

I didn't mean to type that all out, but maybe I needed to see it all written out. My mysterious Bugaboo - he doesn't fit into any category it seems right now. And that is okay except that I do not know what else I can be doing to help him.  However, the mommy and the educator in me is having a really hard time with that.

5 comments:

  1. Praying for the bebe and you. :) I hope you get some answers soon.

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    1. Thank you, Danavee! I am becoming a pro at the waiting game. :)

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  2. Praying for you. I really think that book will help you. It made me feel more empowered when I spoke with doctors. :)

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  3. Prayers for Bugaboo and you all as you keep seeking help. Hopefully you can get some more answers soon! You're doing a great job advocating for his needs :)

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  4. Thinking of you guys! I hope you get answers soon. That is such a long wait!

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