Sweet Baby
Posted by Melissa | Filed under Pictures
I just had to post this picture again because it’s so adorable. Boy do I miss him 
My Sweet Baby is with God…
Posted by Melissa | Filed under Gaucher Disease
Kyle passed away in his sleep on June 19, 2010.
Kyle Got His Hair Cut
Posted by Melissa | Filed under Pictures
Any Day Now
Posted by Melissa | Filed under Appointments, Home Life, Treatment
I finally met with our soon-to-be home nurse and her manager at the hospital during Kyle’s last treatment. The nurse is super nice, and I know she is going to work out great for us.
It turned out to be a busy day. The home nurse, her manager, the co-ordinator at the hospital, the genetic counsellor, Kyle’s genetics doctor, and a regular hospital nurse, were in and out our room all day, but things are finally coming together.
Apparently, we are waiting on the paperwork to be completed through Genzyme (the company that makes the Cerezyme treatment) because they are paying for Kyle’s home nursing. I had no idea that they would be covering the costs, I just assumed that our government (here in Canada) was paying for it.
So now we’re just waiting on paperwork, and for everyone to get all the plans in place. The Cerezyme will have to be shipped to our local hospital for pick-up, and then I will keep it in our fridge here at home.
We’re scheduled to go back to the hospital next Tuesday, and I really hope that it will be our last trip there for awhile. We do have to make the long drive every 3 months for blood work (that can’t be done at our local hospital) and a check-up with Kyle’s genetics doctor. But really, that’s only 4 trips to the hospital per year, a lot better than the current 2 per month.
I’m also working to arrange his therapy so that it amounts to one day a week. So we’ll go once a week and for 30 minutes of speech therapy, and then go from there to either Physio Therapy or Occupational Therapy for 45 minutes to an hour. PT and OT alternate weeks, so we see one or the other each week (though we frequently see them both together). It all seems much more manageable now. Therapy once a week and treatment at home every other week.
My goal is to ensure that Kyle is happy and comfortable, and I’ve always been adamant about not letting his disease take over his life. He’s a sweet little boy who deserves the best quality of life I can give him; and to me that means factoring in his disease around his life, not the other way around.
Finally, Home Nursing on the Horizon
Posted by Melissa | Filed under Treatment
Ever since Kyle was diagnosed and the idea of home nursing was presented to us as an option, I have been pushing for it. His bi-weekly treatments are something he has to have for the rest of his life, and the older he gets, the more disruptive the long drives and days at the hospital are going to be to his life.
One of the requirements for home nursing was to have a port surgically implanted, something I wasn’t too keen on. Kyle has awesome veins in his hands, so never once, did the nurses at the hospital have a problem getting his IV going. But…because there would only be one nurse coming to the house, another wouldn’t be able to step in to get the IV going if there was ever a problem, and Kyle would miss his treatment. We can’t have that.
So in November we went through all the appointments necessary to proceed with the surgery – the consults, x-rays, etc., and he had his surgery on the 18th. It was one long day. He had his infusion done in the morning, and while he was getting his flush, we went down to get checked in for surgery, and wound up sitting there for 3 hours because they were behind schedule. We didn’t leave the hospital until 8:30 that night, but everything went smoothly with the actual surgery.
The incision healed perfectly, and we haven’t had any trouble with it at all. Here it is on his chest:
It’s really not the big deal I thought it was going to be. They said he can use that port for up to 10 years before it has to be replaced, but I guess only time will tell. The nurses gave me some freezing cream and covers to put on his port, so that when they access it with the IV he won’t feel anything. And I’ve found that I really like it because it frees up both his hands for our time at the hopsital, where before, he couldn’t do anything with his one hand because they had to wrap it all up so he wouldn’t play with it. Now the IV line is out of the way.
Last week, I met with a lady named Donna who informed me that she is the one coordinating the whole process. She said there is a lot of red tape and paperwork to make it happen, but she said she hopes to have the nurse who will care for Kyle at the hospital next Tuesday. That means she will be there to observe everything, from how the Cerezyme is prepared, to using his port, and throughout the entire process. Then hopefully after that, it will be a matter of a couple of weeks.
I just received a fax with the paperwork that needed signing to enroll Kyle in the Cereyzme Home Infusion Program, so it’s been signed and faxed back. So I really hope from here on out things will move pretty quickly.
It’ll be so nice for Kyle to be at home, and comfortable for his treatments, so his life doesn’t have to be more disruptive than it already is.
New Picture
Posted by Melissa | Filed under Pictures
A Much Needed Update
Posted by Melissa | Filed under Home Life, Pictures, Updates
I’ve haven’t been posting much. I guess it’s because we’ve reached a point where we know what we’re dealing with, and I suppose, now we’re just dealing. But I know that my posts here are a way to keep friends and family who care about Kyle updated on how he’s doing, so I’m going to try to post at least once a week.
Kyle is doing really great. He goes to therapy once a week, where he sees his OT or PT, or sometimes both of them together. He also had his speech therapy assessment in early January, and she really believes that because Kyle seems to learn things quickly, doing speech therapy will be beneficial for him.
In fact, I found out that other than talking like he should be at his age, he is communicating in so many other ways and is pretty much on target for his age. He understands when I point and tell him to do something, he can also repeat things back. Such as when daddy growls at him, he’ll growl back (don’t ask me about the whole growling thing, lol, it’s just something they do). He also understands when you hold out your hand and ask him to give you 5, he will. He also knows how to turn his head back and forth to say no, and then up and down to say yes. So he really is more advanced in language than I tend to give him credit for.
He is getting stronger all the time, and is really getting around. Holding onto a toy he can walk all around the room on his knees, and if I put him on his knees in front of the couch he will pull himself up. The biggest issue here with Kyle, is that he is in the habit of throwing his head back because that’s what he did for so long to give him the momentum to move, and as a way to not use his muscles because he didn’t have the strength.
So I came up with the idea of creating a seat for him that would be high enough at the back, to prevent him from doing that. It would help him to relax his entire body while he is sitting, build his strength, and hopefully rid him of the tendency to throw his head back. The Pathways Centre where he has his therapy, has a man there that builds custom seats and other things. So he took my idea and made a brand new seat for him. It costs us $100 to have it made, but it is so worth it.
Old chair (you can see how he has his head tipped back):
New chair: I don’t have a picture of him in it yet, but he cannot tip his head back like in the old one. It’s also adjustable so I can raise the part with the head rest on it up quite a bit higher, so it’s a seat that can be used for quite some time.
He sat in that chair for like 2 hours last night. He’s just so comfortable, it makes me happy knowing he is comfortable and building up his strength at the same time. His tummy has decreased in size by a lot. It is really noticable, so I think that is contributing to his growing strength and mobility too.
I also ordered his mini pacer (gait trainer). Apparently our government will pay for 75% of the costs, and we take care of the rest. It’s still going to be pricy…about $600 that we have to pay. But after putting him in the one at the Pathways Centre where he goes for therapy, and seeing him move all over the place in that thing, I just can’t not get one for him. So Kyle’s PT is sending in the paperwork, which will then go to vendor, who will send it to the government for approval and then we’ll get it. I ordered the blue colour like the one in this picture.
Because it’s adjustable, he can use it for about 2 years. But it changes with his needs. So if he doesn’t need to be in it with the little seat under him, that can be removed. It can eventually be used as just a front or back walker. So as he continues to grow and progress to full out walking, this changes with his needs. It also has a handle that attaches on for a parent to push with. It’s not included, and the government won’t cover that, but I ordered it anyway. I’d like to be able to take him out in the nice weather to walk in it while the kids ride their bikes.
As for eating…well, it’s pretty much the same. Kyle is a picky eater, which is normal in my house. Both my husband and 5 year old son are really picky and tend to eat the same few things. Kyle is the same…thanks daddy, lol!
He eats 2 gerber toddler meals a day. I dump the whole thing, including the vegetables, into a baby food blender and blend it until it’s just a little bit chunky. Then he’ll eat the whole thing, followed by a 7.5 oz jar of strawberries, and 8 oz bottle of soy milk (he can’t tolerate cow milk). I have to spoon feed him all his meals, because he can’t do it himself. Though he will hold a spoon, and a couple of times put a spoonful in his mouth. For breakfast he has an 8 oz bottle of milk, a jar of strawberries and his corn twists. Not exactly an ideal breakfast, but there’s nothing else he will, or can, eat that I can give him.
I’ve also bought so many different types of sippy cups in the hopes that I would find one he likes. He’s not having it. I even bought the one that is a cup with a bottle nipple, and then you can change the nipple two more times until it’s a sippy cup spout. He refuses to drink from a cup.
His snack food is Chester’s corn twists. Probably not the best thing to be giving him, but I’ve tried many healthier options and he just won’t eat it. He either chokes or he doesn’t like it. And I just can’t deny him something he loves to eat because it may not be very healthy. They’re easy for him to eat, he does chew them somewhat, but they also disolve pretty quickly. It also gives him the chance to feed himself.
Right now I am more concerned about getting the food into him, then in how and what he eats. He has a mouth full of teeth, but I find that he doesn’t really chew what’s in there, he just swallows. So I think he’s gotten into a mind-set where to eat, you swallow instead of chew then swallow. But for now, I’m content to leave him be at this point. Once he turns 2, I’ll assess where he’s at and work at making some changes.
Overall, Kyle is doing amazing. He is a happy, sweet little boy and I am so blessed to have him.
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:
New Pics :-)
Posted by Melissa | Filed under Pictures
Kyle at the end of summer on an outing to feed the ducks, and play on the shore of the beach.
Kyle playing this evening.
It’s Set
Posted by Melissa | Filed under Quick Update
Kyle will be getting surgery for his portacath in a couple of weeks. He is scheduled for an ultra sound, a consult, and pre-admit clinic. Along with his regular bi-weekly treatments, OT and PT appointments, it’s turning out to be a busy month. But his surgery is putting us one step closer to getting in home nursing so Kyle can have his treatments at home.
We also found out that Kyle’s OT and PT want to see him more often because he is making such great progress. So one week he will have a PT appointment, the next week OT, then back to PT, and so on. We are also going to be starting speech therapy in about a month. I met the therapist at his last PT appointment, and she is super nice. I told her I wasn’t sure if she could do anything, because Kyle doesn’t understand things the way a normal 16-month old would. She said, don’t worry, my job is to help him understand. But I’m not sure she understands what I mean, but I really do hope that she can help him.
With therapy every week, it will be so nice to have a home nurse taking care of his infusions so I don’t have to make the long trip for that every other week on top of all his other appointments. It’s not cheap either. Gas to get there and back, $9 for parking, and money for food and drinks for me.
Thankfully that will be a thing of the past soon, and all his other appointments are close to home. Now that we have a second vehicle, finally, I’m also thinking about getting Kyle into the swimming program they have at the center where he gets therapy. I’m going to ask the PT next time I see her to see what she thinks about getting Kyle into the pool, because he really loves water.
So I guess it’s wait and see for the home nursing. Until then I’ll keep making the drive, and hope that the weather doesn’t get too bad before then.
Link To Kyle
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