Christmas miracles!

Several months ago, one of G’s therapists suggested we look into a specialized trike that would allow him to ride a bike with his friends and sister. While we do have a regular tricycle for him, he can’t keep his feet on the pedals and isn’t much use for him. We looked into it, had G measured, and put our name on the wait list. It is completely customizable, so G’s version allows him to power it with both his legs and hands, and in addition to foot straps, comes with gloves to strap his hands on.  I was sure it would be a year or so before we received a bike, so imagine my shock when I received a call on December 21st that G’s bike had arrived and they were building it that night for pick up tomorrow! I couldn’t believe it and was so thrilled to give G his very own bike that we hope(d) he can power on his own!

The organization that provides these bikes is called Ambucs and here is a blurb about what they do:

Capital City Ambucs promotes abilities, not disabilities. Our goal is to provide children with disabilities with the opportunity to ride bikes. Our primary focus is on organizing fundraisers in order to raise money to purchase amtrykes which we then donate on a first come first serve basis to applicants on the wait list at no cost to the family.

Amtrykes help children improve motor skills, provide strength training, are fun to ride and offer the opportunity for inclusive play. They also provide a new form of mobility, exercise, and freedom to explore the community.

On Tuesday, sister C and I picked up the new amtryke from the hospital and headed home to wait for Christmas day! What a day it was! Gifts were piled high
(see G opening gifts in his awesome new cube chair here), there was much food to be eaten, and naps to be taken, so it was 3 in the afternoon before we were able to present G with his new bike. A bit to our surprise, he LOVES IT!!!!!!!!!  Here are a few videos – do note that we need some help from his PT and OT to get him set up correctly, so we were just giving it our best shot – I am sure he will look better on it once we get him set up the right way! While in the video we are mostly pushing him, he is already making progress and figuring out how to push his legs to make it go on his own. This will be ongoing great therapy for him, hopefully in disguise!

and heading home…..

We are so grateful to kind people in this world to donate to these trikes, both with their time and money. We look forward to getting further involved and supporting Ambucs so others can experience the miracle of watching children achieve things never thought possible! I understand there are Ambucs organizations nationally, should you be looking for an amazing organization to support!

Merry Christmas to all – I do hope everyone experiences their own Christmas miracle in some form or fashion, or feel free to rejoice in ours!

December update, finally!

I know, I know, it has been WAY too long since updating G’s biggest fans, so, without further ado….
  • G visited the ophthalmologist again – as you may recall, we are patching his right eye daily for an hour to improve strength in his left eye. This was the first visit where there was not noticeable improvement, but hopefully there will be next time. The goal is to avoid surgery for his strabismus (cross-eye), so we will keep at it and see what happens.
  • G got to go to the dentist which was quite the adventure! He wouldn’t let anyone do much of anything, but the dentist was able to ensure all if his teeth are there (!), and they look great. He has gaps between his teeth which I was originally concerned about, however I have a new found appreciation! There is plenty of space for his adult teeth to come in (and hopefully avoid braces!), and because of the gaps we don’t need to be TOO concerned about flossing because everything can flow through without getting stuck. Brushing is hard enough, forget flossing! We continue to use “training” toothpaste since he can’t spit, which is weird to me, but I guess he isn’t missing out on too much fluoride.
  •  AND, the dreaded ARD! It happened! It was quite overwhelming with 12 people in the room and without going into the nitty gritty details, we achieved as best we could hope for, for now. He “qualifies” for an hour of speech a week, and they (finally) agreed to evaluate G for OT and PT (which I couldn’t believe is an entire separate ordeal!). That was a bit of a struggle, but thanks to G’s teacher and Daddy P, we walked away with agreement for him to be evaluated (which I am sure will lead to him qualifying for services!). The open item is the timing of that eval, because as of now he qualifies for a 4 hour day, but when he turns 4 (August) he will qualify for a longer school day and therefore more services.
  • So now that we have the ARD recommendation, we start phase II which is to get funding for the proportionate share so that AISD will pay for his private therapy at The Rise School. We couldn’t do anything until we got through that meeting – I called the next day to find out there is no money left for this school year, so we start the process to get him on the list for next year.  Ah, the waiting game….I had a feeling we might end up in this boat, but with at least 2 more years at Rise, we will take what we can get!
  • In other awesome news, Daddy P’s employer increased their PT/OT/ST visits from 60 to 120 annually, which doubles the services G was getting!!!!! This is HUGE for us and we are so thrilled they were able to accommodate our request.  We do have to change from Aetna to BCBS however, which means more paperwork, and probably no services in January until everything gets approved 🙁 I am sure G won’t mind the break 😉
  • G had his last week of school, FILLED with festivities – pajama and movie day, a holiday ball, pizza party, book exchange, and more! Needless to say he has had a blast!
 Now Mama C and G are recovering from a cold, no thanks to all the fun I am sure. 🙂  G wishes you all a very merry Christmas!! As his gift to you, a few pictures from the past few weeks 🙂
 2015-12-06 19.55.59 2015-12-06 20.03.59 2015-12-12 19.24.13 g_fireplace G_mom christmas party
And look at this guy STANDING at the Holiday Ball!!! I am quite sure it wasn’t for more than a few seconds, but he is so tall and straight!! Thankful to his teacher and big sis for getting him up like that!
Holiday ball_GC&G at holiday ball