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.

Permalink | Comments (3) | Nov 6, 2009

3 Responses to “It’s Set”

  1. Bonnie Says:
    November 6th, 2009 at 10:26 pm

    Looks like Kyle is coming along pretty good. Must be very tiring on you, all the traveling and apts. Will be great when things start to fall into place at home.

    Keep up the good work. You are obviously a very strong woman!!!

  2. Cristina Says:
    November 7th, 2009 at 12:31 am

    This is all great news! You are beautifully handling the challenges facing your adorable boy. We just love your family and will continue to keep Kyle in our thoughts as he faces the portacath implantation surgery. Hugs! :)

    Cristina’s last blog post..HIV-based gene therapy effective for a lysosomal disorder

  3. eve Says:
    January 27th, 2010 at 10:50 am

    Nice to know that it is going okay for you. kyle seems like a strong, beautiful boy.

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