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.

Permalink | Comments (3) | Mar 12, 2010

3 Responses to “Any Day Now”

  1. Corline Says:
    March 12th, 2010 at 12:16 pm

    Hi , I got the e-mail about passing on the information …which I did to Face Book; however, I did not see a place to actually vote – did I miss something.
    I wish you the very best with your precious son.

  2. Melissa Says:
    March 12th, 2010 at 12:26 pm

    Hi Corline, thank you so much for sharing! You can vote by going here:

    http://su.pr/2siEe6

    We need just 13 more votes to get into the top 10!

    Thanks!

    Melissa

  3. Cristina Says:
    March 16th, 2010 at 12:26 am

    That is such great news! It’s amazing how after a time things seem “normal”. Kyle is clearly having the best quality of life he could possibly get. He’s such a beautiful and sweet-looking little guy! I keep him in my thoughts and heart. Love and hugs to you all.

    Cristina’s last blog post..Utah Keto Get Together on March 27th!

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