Friday, August 31, 2012

a medical update on Bugaboo

Well, I like our new neurologist better than the last two our system had. Here's the update:
  • He wants us to see the geneticist - which actually was scheduled months ago. We finally get in very soon.
  • He is glad to see Bugaboo has progressed, but he is concerned that he is still so far behind.
  • He observed the same hypotonia we have seen for months.
  • The MRI we were told was "normal," by the last neuro may not be in regards to white brain matter. The white brain matter isn't as developed as it should be.
  • Bugaboo's head has not grown in five months.  The neuro did not like that.
  • We go back to the neurologist in October - after we meet with genetics. Hopefully they will have something to tell us, and hopefully Bugaboo's head will grow and he will continue to make gains.
Things I liked about this neuro:
He did not utter the phrase, "Well, at least he's making progress."
Even better - he never once said, "Well, he was premature." 

Hallelujah - a doctor who realizes what we have been dealing with may have nothing to do with Bugaboo's prematurity.

How you can pray:
  • for head growth and brain matter growth
  • for a helpful genetics appointment in a couple of weeks and timely results
  • insight for this neurologist, our geneticist, and our pediatrician, as well as the therapists we work with weekly
  • for our orthotics appointment in Septemeber for G's feet/legs/walking issues
  • for continued growth in gross and fine motor skills (we've seen gains this summer in gross motor) as well as in speech/language development
  • for me - to balance all the mommy-ing stuff with both boys - and for insight for me as I observe and work with Bugaboo everyday
  • continued provision - We made the decision last spring for me to cease working even from home so I could focus on working with Bugaboo - every need continues to be met and we are thankful for that.
Thank you to those who send diapers or grocery money, those who buy shoes and clothes for our boys or bring me a cup of coffee. Thank you, friends, who pray for our boys, who pray over our boys. Thank you for those of you who laugh with us at the crazy things they do, and those of you who cry with me when I drop G off at the baby nursery while younger babies move up to toddlers. Thank you who read this blog orfacebook and who just listen when I need a friend. We have an amazing community of support near and far, and we couldn't do it without you. We love you.

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