A little update..

Monday we were at the opthamologist again with B for a followup..Since she has been diagnosed with oculomotor apraxia they want to follow up every two months..The Dr told us he expected her vision to improve some as she gets older and not get any worse..he is concerned that when she looks at something near her eyes turn out...so he wants to start patching one eye each day for 30 minutes and alternating eyes..he patched her eyes during the visit and she didn't seem to mind..but at home is a different story..30 minutes doesn't seem like a long time but when you cover your eye for that long and you don't see well with either eye I know it is scary for her..I am trying patch her while she is distracted with the older girls and that helps keep her mind off it so much..
We have finally started to get weekly visits from a vision therapist from Florida school of blind..They come to our home and work with B on all kinds of things and give me suggestions on ways to help her that had never crossed my mind..
We have taken a step in the right direction with a new occupational therapist..B will be treating with 2 different ones twice a week ..and while this is not ideal..we would rather have one so they know her better.. It is the best we can do for now and I think together they will be an awesome team..
B's physical therapy is going great..we have the best pt...she is working on upper body strength and pushing her self up up in a crawling position..this is really hard work for her but she is making progress..
next week B goes to see the neurologist again..
my #1 worry is she still is bearing no weight on her legs..
so please continue to pray..God give B to us..and we are counting our blessings..

1 comment:

Julie said...

Thank you for your blog and for sharing your journey!

We have a 7mo. old little girl that has been diagnosed with delayed visual maturation and hypotonia (although I'm still not convinced of the delayed vision diagnosis). Bella does not focus well or track objects well...and it's so scary and sad to see her falling more and more behind developmentally. We did recently have a brain MRI that was normal (praise God!).
We see the neurologist again tom and I think they will be recommending genetic/chromosome testing.
This is not a road I ever thought we would be traveling...it's discouraging, frustrating, overwhelming and scary...I could go on. :) We started PT/OT-but it's so hard to know that we are still working on head control while friends with kids the same age are working on crawling.

Sorry for the long comment! It's late and I should be sleeping-but I wanted to thank you for sharing your story. It's nice to know that we're not alone in this journey.