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Thursday, November 10, 2011

Vision Specialist, Therapy, Pediatrician, Equipment

Carter's life seems to go in and out of busy spurts of appointments and it is back.  Since his G Tube we have taken things slow and relaxed some- because of the long tube he hasn't been able to do tummy time, his stander or aggressive therapy.  He will be getting the button in the next week so things have been picking up again.  He saw a vision specialist from the school of the deaf and blind, to evaluate him and his vision.  He has checked out twice with a vision doctor at Primary's, but we were told he was still visually inattentive so we wanted to see what more we could find out.  She asked me a bunch of questions and worked with Carter for a little bit; we will start seeing her monthly to work on things.  This now brings Carter's appointments to being quite busy:

Monthly Appointments
Physical Therapist at home- twice a month
Physical Therapist at Rehab center- twice a month (Taylorsville)
Feeding Specialist- once a month (Taylorsville)
Vision Specialist at home- three times a month

Quite a busy schedule besides his regular pediatrician appointments, if he is sick, etc.  I admit I have been getting down about his therapy because I wasn't seeing much if any progress.  I haven't wanted to push myself too hard either with being pregnant.  Looks like things will be picking up again so hopefully I can keep up.  My other frustration with appointments is that it's hard to pinpoint a good time for Carter.  I try to avoid meal times and nap time to get him at his best, so he can work hard.  It's not always possible with his schedule and the therapist's.  Sometimes appointments don't go so well because it is nap time and he is not happy at being woken up.  You would think being a stay at home Mom would give me plenty of time- not really.

Right now besides all his therapy appointments, I am also closely monitoring his weight gain.  His growth has been quite rapid, and I have to work closely with a dietitian to keep Carter on a more even plain.  He shot up pretty fast and we are trying to slow down his feeds to get him more even.  It's trial and error.  I am also still waiting to hear back from the sleep study people on his results.  Carter saw a new pediatrician as well, because we heard she was great.  She gave me some more great information (I'm all about resources) and gave me a list of things to do.  Carter needs to see an orthopedic doctor here soon, because he isn't walking, to make sure his bones and hips are growing okay.  I also need to work with one of our therapists on ordering some more equipment.  We need to look at getting a good stroller for Carter with good support, that can also sit him as he grows bigger.  I might also look at a bath chair, a better car seat and more.  One thing I have been really struggling with is where to put Carter during the day.
I want to get him something like this, so he can sit up while being supported and have a tray so he can play with toys and/or look at books.  This will really help out when the new baby comes, so I have someplace safe to put Carter.  Right now, he sits in his swing (which he is way too big for) or he lies on the ground with some toys, or I prop him up in the corner of the couch which needs supervision.  It would be nice to have something to put him in without having to hold him or supervise him constantly.  He is still wobbly while sitting up.  I think this would help engage him more.  Insurance usually only covers one piece of equipment at a time, so I'll probably start with this.

Some Things I Learned
-at age 3 insurance will cover diapers, and Carter will start attending preschool and switch all services and therapy to the school district
-once our income no longer allows Carter to be covered on Disability Medicaid, there is a DSPD waiver that would allow him to still be on Medicaid because of his disabilities.  The problem is......the wait is 5-7 years in Utah.  I better get started on the application.

In the meantime, we are living life and trying to enjoy the moments that make us laugh instead of focusing on the trials and hardships.  Keep posted for Monday....we hope to take an early peek at our new baby to determine if it's a girl or boy.
P.S.  Anyone else's kids cry really hard and then have seizures?  Carter seems to be crying more often and really loud too.  I notice that seizures seem to happen either during or shortly after.

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