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.

I think it’s so awesome that the centre is just a 10 minute drive, and that all of the services are completely free. If we were to find someone outside of the Pathways centre, I know that our insurance would only cover part of the cost. And depending on how often Kyle will need to see these ladies (Mary and Kelly), it could get pretty expensive if we had to pay.

When I spoke to one of Kyle’s specialists about physical therapy and the like for Kyle, he said we could look into that if we wanted to, but suggested we just wait and see how treatment does. Typically, he can and will catch up with treatment, but there’s no reason why I can’t help him along.

My sister-in-law works at our local health center, and she told me about a program called Pathways and suggested that I look into it after I mentioned my concerns to her.

Well this morning, I finally did, and I am surprised by how many programs they have available for children with special needs. So I sent an email off to the early years department explaining Kyle’s situation and asking how I go about getting Kyle started in their programs.

I really think he will benefit from Occupational Therapy, Physiotherapy, as well as some of the others. There’s only so much I can do with him, and because I really don’t know what I should be doing to help him make progress, it’s time to find the right people who can.

I will post an update once I hear back from someone

He had a bottle of formula after getting his blood work and IV line ready to go, then he fell asleep in his stroller. I left him with the nurse to go and get a coffee, and when I got back they had his cerezyme medication hooked up and going into him.

When I saw that, tears flooded my eyes. My baby was finally getting the medication he needed after dealing with the symptoms of Gaucher for the past 7 months. Finally, something was being done to help him.

Kyle slept all morning, even with the nurses disturbing him to check his blood pressure and heart-rate every 15 minutes. The good news is that he didn’t have a reaction, which I’m so thankful for!!

He woke around noon, I fed him lunch, and then put him in the baby carrier to walk around. We ended up spending the next hour walking the halls while I pushed his IV pole. He was as happy as could be

Once mom was tired of walking, we went back to the room and played with toys for awhile. Then he had another bottle, and eventually dozed off again for pretty much the remainder of his treatment time, lol! I was amazed by how well the day went considering we were there for so long.

We head back in for the second round of treatment on the 26th.

His appointment was originally set for tomorrow, but unfortunately, his Doctor was not able to be there to supervise his treatment, and then the doctor they had lined up to replace Kyle’s doctor is also away. So with no doctor available to supervise him tomorrow, his first treatment has been scheduled for May 13th.

They are starting him out at a very high dosage because they really want to get his liver and spleen back down to normal, so that means he’ll be hooked up to an IV for 6 hours. When I asked how long it would take to see a difference, she said it would happen really quickly – not overnight – but we’ll see an improvement pretty fast because he’s on such a high dosage. Once things start to go back to normal, his dosage level will go down and he won’t have to spend so much time tied up to an IV.

I’m so glad that he’s finally going to get the treatment he so badly needs. This will increase his comfort level, his breathing, improve his appetite (I think because his tummy will have room to expand and he won’t feel full after so little), he’ll grow (I’ve heard of kids having growth spurts after getting started on treatment), it will prevent bone pain and crisis…basically it will stop and reverse all the symptoms of Gaucher disease, except for the neurological effects associated with Type III.

When asked if I had any other questions, I asked her if the HLA typing results had come in yet for the bone marrow transplant match. Unfortunately, they haven’t, so we’ll have to hang tight and keep praying that Jason (Kyle’s 4-year old brother) is a match.

But I did forget to ask about the results for the hearing/brainwave test they did last Thursday. His hearing is perfect, they know that already, but what they want to know his how his brain is processing. So I’ll have to be sure to ask about it when they call to set up his first treatment appointment.