I Feel So Hopeful & Blessed
Posted by Melissa | Filed under Gaucher Disease, Thoughts From Mom, Updates
When I hear of the heart-breaking things that other parents of children with Gaucher disease are dealing with, I have to count my blessings.
Kyle has never had, and still doesn’t have any major issues. He is improving in both his gross and fine motor skills. Things he couldn’t do in one therapy session, he is doing the next.
Things Kyle CAN Do at 18-months Old: (off the top of my head)
> Crawl, well a commando crawl, but he is pulling himself up onto pretty much all fours and moving a little ways, and he is doing it more and more everyday
> Sit by himself (though I sit with him because I don’t want him to throw himself), or I put him in his sitter seat we got from his therapists. We’re getting one custom made so it has a higher back which will prevent him from tipping his head back, so he is kinda forced to keep it straight which makes his whole body more relaxed.
This is a picture of him in his current seat, playing school with his big sister 
> He plays with a wide variety of toys: putting things in, taking things out, banging toys together, even starting to colour, picking up tiny objects, pushing buttons to make things go and play music, pushing cars/trucks on the floor.
He’ll open the doorway on this tent and go in, play in there, and then come back through the doorway:
> He is beginning to understand more things we say, like: “Make it go” when we’re playing with his musical toy, he’ll push the button to make it go. Like on this toy:
I’m amazed by how much he is starting to learn, and I believe it’s because I let him figure a lot of things out for himself. He gets a lot of free play time on the floor with toys, he goes from one thing to the next, playing, and learning how to do things on his own.
> He will give you five if you ask him to
> He is becoming more and more verbal, and it sounds as though he is trying to say words. So hopefully his speech therapist can help him make progress there.
I’m not going to focus on the things he can’t do, because that’s pointless. He’s his own little person, and the things he can do are the things that matter. So I’m focusing on how well he is doing, how much progress he is making every day, and I thank God that he is doing so well and we’re continuing to see improvement.
I am hopeful that Kyle will be walking by the time he is 2. In fact, our therapist is ordering a mini pacer for the centre, so we’re going to try it out with Kyle. If he likes it, she can order one for him, and hopefully we can get some funding for it. He is motivated to walk, he knows what to do, but he lacks the strength right now to do it. So I think the way this is made will really help him progress to walking a lot faster.
Here’s what it looks like:
10 Responses to “I Feel So Hopeful & Blessed”
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December 11th, 2009 at 5:49 pm
Awww, the pictures are so cute…playing school
hehehe. Good to hear that Kyle is make such good progress in everything. Hopefully the mini pacer will help out alot and Kyle will be running all over the house getting into things.
December 13th, 2009 at 9:35 pm
My goodness, this post made my day!
Kyle is quite the little champ! And, still as cute as a button! 
I wish I could reach through the computer and give a big hug to you both! Keep up the great work!!! 
Cristina’s last blog post..More 2nd Birthday Party Goodness
December 13th, 2009 at 10:09 pm
Look at him Melissa! He’s gotten so much bigger from the last picture I saw of him.
Nell
Nell’s last blog post..I Accept Your Snowball Fight & Raise You One Giant Snowball.
December 13th, 2009 at 10:34 pm
Yes, he looks great Lis. And glad to hear that he is progressing so well. Still hoping for the best for all of you.
December 14th, 2009 at 9:12 am
Cristina: Thank-you so much for your kindness and support, it means a lot to me!
Nell: I know, he is growing and putting on weight. He’s over 21 lbs now, but he still has his little chicken arms, lol! But he sure is making up for lost time now. Thanks for your continued support Nell!
Bonnie: Thanks for checking in with Kyle and supporting us too
December 14th, 2009 at 9:13 am
Michell, I would love to see him walking by the time he’s 2. And we’re working on getting him stronger so he can do that
February 3rd, 2010 at 6:53 am
Melissa, the new photos are lovely! He looks like a happy little guy, and you are so right to focus on what he can do, and all the positives.
I really hope funding for the walker comes to be – that sounds like a great idea!
March 12th, 2010 at 11:15 am
You are right in only comparing him to himself. Two of my three daughters are brain damaged and there is no therapy to heal them. But they can learn new skills and improve the ones they already have. To not forget the little blessings, I keep a diary with every time I notice a change in their behavior or a new skill. It is surprising how fast you forget these baby-steps as time continues.
March 12th, 2010 at 2:24 pm
Hi Melissa, I received your email today asking me to vote on http://www.change.org to support the increase of awareness for rare diseases. Well, I was very happy to do that! And, as I’ve been sitting here looking at the pictures of Kyle, I am struck by the love and joy emanating from them and through your writing. Kyle is truly an angel and you are a remarkable mother! Wishing you and your loved ones the very best health always and in all ways, Deborah
April 24th, 2010 at 10:35 pm
Hi Deborah,
Sorry for the late response. Thank you so very, very much for supporting our cause and for sharing your thoughts {HUGS}!!
Melissa