It’s been a while…

Sorry we have been a bit behind on updates….so here goes….

  • G saw his geneticist a few weeks ago. After all of our concern about the guy gaining weight, now there is a concern he is gaining too MUCH weight! Seriously?! So, now we get to see an endocrinologist to make sure nothing else is going on….
  • His stander has been approved, so now we just a wait a few more weeks to get here…
  • His SMOs (Supra Malleolar Orthotics) are ready next week! He will wear these when we put him in the stander to give him more support and help his feet align with his ankles. When he went to get measured, the doc walked in and said…”This is exactly what I thought I’d be dealing with!” when I asked what she was talking about, G’s feet turn outwards, which I hadn’t even noticed beforehand! Apparently again, something pretty common for guys like him… 🙂
  • ENT visit – his tubes are in place and doing great, and as expected, no updates on what he can hear…they tried to perform some more tests in the office. With one, they put us in a sound proof box and waited to see if G would react to noises at different pitch and volume. The thing is, they were the most boring noises (white noise, a little beep)…if you want his attention, be more exciting! Needless to say, not alot of response except when they called his name. Duh! So, we landed at another ABR in a few months, when we get his MRI. We will schedule all of this once we get through his one year visits with all his specialists to ensure he doesn’t need any other procedures under sedation. And then we get to begin the fun game of trying to coordinate scheduling all of this again! (not. it’s terrible)
  • Stoller Wheelchair! G’s Physical therapist and Occupational Therapist both recommended we look into the Zippie Voyage. They don’t like his seating options when he eats (and apparently it has to cost $2,500 for them to find one they like!) 😉 We also struggle with restaurants since he can’t sit in a highchair, so this will be another solution. The medical device company brought it over for us to check out…it’s serious business, but for being a medical device, is fairly easy to use and according to the experts, the most light weight device we will ever find! So, that is in process and they are aiming for him to have it in 60 days…as previously noted, G is a BIG boy, so I think we will find this more necessary as he get’s to a point where he is too big to carry…which isn’t far for little Mama C!  I also like that it does appear more like a stroller than a wheelchair…at least from afar…the seat is pretty intense, but hopefully as G get’s stronger, we won’t need all the pieces to keep him in place and it will be more stroller-like… 🙂

So, that’s it! Big G has his one year birthday next week!! I can hardly believe it! Along with his pediatrician visit we will see the developmental pediatrician again so they can tell us all the things he’s not doing that a one year old should be. 🙁 We got the paperwork today where they want us to fill out what he is doing..it’s always a downer because he isn’t doing any of it (putting words together, waving hi and goodbye, pulling himself up). I keep asking them to give us the survey from the prior visit so we can show them what accomplishments he HAS made, instead of being reminded all he can’t do. He has made amazing strides in this year, and we are so very proud of him!

Until next time, here are a few pictures of the lil man from our summer adventures!2013-08-10 12.15.50 2013-07-27 15.48.58

 

 

 

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