Hope Springs Family

Learning to Live with Tuberous Sclerosis

3 months ago…

… LB (henceforth called G) was starting to sit up on his own.  He has since learned to crawl, walk, and is starting to push/pull himself up into standing.  We finally called ECI  to come out and evaluate, not if, but how much help he qualified for.  Turns out, he qualified for a lot.  So now we have an occupational therapist, speech therapist, and an early intervention specialist each coming to the house twice a month.  This is in addition to the physical therapy he gets at a clinic every week.  Everyday he is getting steadier on his feet.  His therapists are all very pleased at the progress they see when they visit.  So far, he has exceeded their expectations each time!

I won an iPad2 in a sweepstakes after Christmas (HUGE answer to prayer!!), so I’ve been finding apps to help him use his hands (working!), communicate (not yet), and help his cognitive development (again, not yet).  I’ve also found apps for BB (henceforth called J) to play with to use as a supplement to school, as well as general games to play.  As we use the iPad more, I’m hoping that Gabriel will improve his motor skills enough to tap more precisely and then we can get him to use the communication apps better.

Now that G is mobile, we really can’t leave him alone for a minute.  He can move all over the house, and yet can have a seizure at any time.  There have been times that he had a seizure while on the move and would have really smacked into the ground hard if we hadn’t been there to break his fall.  On the other hand, he also can’t fall properly.  He stiffens up so much to maintain his balance that when he loses it, he just falls over like a felled tree.  So, we can’t just let him practice his walking by himself.  One of us always has to be in arms reach to catch him if he starts to tip over.  It’s only been in the last couple of weeks that he has started to bend at the waist and fall on his bottom.  At first, he would scream and cry when he landed on his bottom, but after a while it changed into just a cry.  We’ve about determined that it scared him at first, but now it just hurts his pride.  He really wants to walk, and gets upset if he can’t.

I’ve got to go sing to a little guy now.  I’ll try to do better about writing posts.

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