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Help is on the way.

July 15, 2014

After 2 years of waiting, Haven heard today that medical help is finally on the way!

This morning, we found ourselves at Riley Hospital (yet again) for THE appointment that we’ve been waiting for.  (This is the appointment that was originally scheduled for September 8th, but we are able to get moved up thanks to the help of that “angel” we met in China.)

We had a really productive visit with the pediatric endocrinologist.  We were able to get some of our questions answered and we began discussing a possible treatment plan.

We learned that infusions are definitely in Haven’s future (just as we expected).  They will probably begin mid-August.  That’s wonderful news!  These infusions should help increase bone density, decrease pain, decrease fractures, and increase muscle strength. From what the doctor saw today, she seems to think that Haven has a severe case of OI Type 1 (which is the mildest form). Confusing, I know. Clear as mud at this point. But, genetic testing should soon determine exactly what type he has.

We will be heading back to Riley very soon for a meeting with a surgeon who will most likely recommend that a port be put in for his upcoming infusions. We also need to have a bone density scan done and meet with a geneticist….and head back in for follow-ups with the orthopedic surgeon who set his femur last month.  (All of this in addition to another minor medical issue that he is dealing with that will require a couple of outpatient visits as well.)  

It’s looking as if Riley may become our second home during these next few months. But, it’s all good. We’re just relieved that progress is now being made, and that hope for our little guy seems to be just around the corner.

Bryan and I can’t thank you all enough for the prayers!  And if Haven could thank you, we’re sure that he would, too!

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2 Comments leave one →
  1. Carole Ann Lentz permalink
    July 16, 2014 1:53 am

    Carly, You don’t know me (you can ask your mom who I am) but I’ve enjoyed your posts for quite some time. I’ve never commented but when I read your post above I wanted to tell you something. I have a port because I was on chemo in 2012. I had 1 infusion treatment without the port and the difference was amazing. The port will definitely make the infusions easier for Haven. They will probably give you a prescription for a numbing cream that you will put over his port an hour or so before his infusion. The port will make his infusions easier and quicker. Best wishes. Carole Ann Lentz

  2. July 17, 2014 3:57 am

    Thanks so much for sharing that! It sounds like putting in a port is the way to go. We are supposed to be meeting with a surgeon soon to discuss that option. I’m really not familiar with them at all, but the doctor seemed to believe that it would probably be best if we looked into that. Thanks again for the advice! Hope you’re feeling well : )

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