I can't believe it's our fourth one with Liam already! Each year it gets better and a bit easier to deal with things however the Christmas four years ago is never far from my mind each time the holiday season comes around.
I am forever grateful for how far we've come, but I'll never, ever forget where it started.
Because of Liam's issues we can't just run out and buy presents at the local Walmart. Things for him need to be thought out and planned in order for him to benefit from it, which sucks because I can't just see a cute toy for him and get it. I have to wonder if he can utilize it at all and if he can't can we adapt it so he can. Most things for him won't come from the local store.
So this year for Christmas I decided not to do much tradition at all for Liam. Oh, he will have presents under the tree, but they aren't just presents. They are learning tools/therapy tools that will benefit him better than a random toy from the dollar store.
I did get him an early present which I know is mundane but is vitally important for him and his future. It's a simple RAM mount for his ipad that mounts it to his wheelchair. Now the ipad is right where he needs it; at arm length and eye height. And he loves having it so handy.
The tray on his wheelchair was too low and although he could reach the ipad there it wasn't what was best for him physically.
This mount allows him to have it front and left (since he's a lefty) and is preparing him for using communication with either the ipad or a dynavox. We already use the ipad for communication but eventually he will need to go to a higher level than what he's at now. And consider that your mouth is always ready to talk for you. His "mouth" will be a device of some sort and it always needs to be at the ready if he is going to communicate through it.
I'm hoping this will get him started in the right direction.
That was the result of Liam's swallow study done yesterday afternoon. I'm so frustrated with this result. He actually had a 50/50 swallow where half the time he swallowed fine and the other half he failed because he gagged on it bringing the barium back up into his mouth and tried to reswallow it but opened up his epiglottis enough to allow a bit of the food to get stuck there and then slide done his esophagus.
I'm upset because Liam used to be an entirely oral eater. And now he can't eat much by mouth at all. How do we fix that? How do you get better at swallowing than by practicing swallowing? How do we keep him from gagging? Does he just need more therapy? And if so, where do we fit that in to our already loaded schedule where medicaid is maxed to it's allowable limits?
I put in a call to his therapist who used to work on feedings with him. I'm hoping she has some good ideas of where to go from here.
I have been so bad with blogging lately. Not that there isn't anything to blog about...that isn't the problem. Just finding the time in the holiday season has been so hard lately.
Liam turned FOUR on November 27th. We had some friends celebrating with us and they asked me some questions about that fateful day. It's hard for me to believe sometimes that 'it' really happened to me. It's hard to believe that the events of that day and the subsequent months really are our reality. Sometimes I feel like it happened to someone else....that it wasn't my real experience but one which I had in a dream. I just look back on all of those moments and can't believe they happened.
We celebrated this year with no cake since Liam won't eat it. I decided to do pie this year and had relative success with getting Liam to eat Key Lime pie. Relative success means I got in more than 4 bites and actually made it past the whipped cream to the actually pie. =)
Liam got a a Lightening McQueen remote control race car that he can actually operate himself. The controller is a big tire that operates the car just by pressing the button in the center. So if we hold the controller he can make it go by pressing the button himself.
Another year older...It's so hard to believe he's four!