Chloe’s Updates

How about a quick nutshell version of a Chloe update?  You game?  Oh, good.  I was hoping you would be.  🙂

We are still waiting to receive Chloe’s special needs car seat.  Medicaid has finally approved payment, and the doctor finally sent in the prescription, and someone finally drafted the letter of medical necessity.  The seat has been ordered, and we are just waiting for it to come.  Yippee!  We will be glad to have it after waiting for 4 months!  While the seat that Safe Kids gave us is a much better fit than her old seat, the fact is that it, too, is too small for Chloe.  Soon I will be posting a photo of Chloe in a seat that is actually safe for her to be in.

In the next week or so Chloe is going to be fitted for a new wheelchair.  Her old chair is so small that it keeps trying to tip backwards when she’s in it, and she drags her feet on the ground behind the foot plate.  She doesn’t use the wheelchair much, but she still needs it for riding the bus to and from school and for trips to the mall or to downtown, etc. that require a lot of walking.  Hopefully the process will move quickly, but I’m sure we’re looking at early April before she receives a new one.  It will also possibly be difficult to get Medicaid to cover the chair since they just paid for “seating” in her car seat.  Apparently Medicaid thinks a child only needs one or the other every 5 years, and we’ve only had this chair since ’08, and Medicaid just paid for a car seat.  Hmmmm.  Wish us luck on that battle.

Chloe will also start physical therapy at the clinic again next week.  She had taken a break, but the muscles in her neck are quite tight again, and her neurologist put her back in therapy.  He also scheduled more botox in her neck — the earliest they can do it is March.  Following the botox injections, she will be in intensive physical therapy to strengthen and lengthen her neck muscles.  There is a tiny tight strand of fiber in her neck that has not responded to botox, and the tightness is starting to pull her face — alter her face a bit by pulling down on her eye, nose, and mouth in that direction.  The neurologist is hoping (but not expecting) the rope of fiber to respond to botox this time, but if it doesn’t, then the plan is for the strand in her neck to be surgically lengthened.  The neuro doesn’t have a clue how it will be done or who would end up doing it (ortho?  ENT?  plastics?  general surgeon?), but he promised me he’d be talking to some docs and coming up with a plan.  Of course the easiest answer would be for the botox to be more effective this time and negate the need for surgery.  I will update you in a couple of months.

And believe it or not, that’s all I can think to update you on!

We’re just plugging away and chugging along!  🙂

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