Sunday, August 21, 2011

State of the Collin Address


Here's an overview of what's going on with Collin right now:

1. Collin is sick
Last Monday, Collin started running a fever and by Tuesday morning he had started coughing. Chest congestion is a big deal for kiddos with low muscle tone because it is difficult for them to cough hard enough to get it all out, making them a high risk for pneumonia. We felt like he was doing a pretty good job and he hasn't seemed to be in any distress, but now we're a week out and he seems as congested as ever, so we will be heading in to the pediatrician tomorrow to make sure we're not dealing with something more serious. All of the coughing and congestion has led to an increase in retching, which also makes everything a little harder.

2. Collin is up to his full dose of growth hormone
We finally got Collin's preservative-free growth hormone and started titrating up to his full dose back at the beginning of July. The only side effects we've seen is some sleepiness with dose increases. He has been a rockstar with the shots and his growth curve is looking good. We go see the endocrinologist on Thursday, so we'll get his verdict as well. Jury is still out on whether it has had or will have any effect on Collin's muscle tone or strength.

3. Collin has BiPAP
The result of Collin's sleep study back in May showed that he would benefit from using BiPAP in his sleep. I'll give more details on this when we actually start using it. It took weeks to figure out that we were not getting approved for BiPAP because it is not technically FDA approved for kids under 40 pounds. We finally found a place in the Cincinnati area who would provide to us, got the machine, and then immediately lost our power for over three days (the machine does not have a battery backup yet). Right before the power came back on, Collin got sick and you can't use BiPAP with a stuffy nose. But we do have it and are interested to see whether it is a huge help or a complete disaster when we start it up.

4. Collin is using his vision
Collin's CVI has made a marked improvement over the summer. He can track things horizontally very consistently - and they don't even have to be light-up or shiny! He also fixes on people's faces when they are talking to him. We were excited enough about all of this, but then we also realized this week that the improvements go beyond even what we thought. I have been using a bulb syringe to suction Collin's mouth during this virus and sometimes it really tickles him. I was reaching toward his face with the bulb syringe Sunday and he started laughing! I thought maybe I had touched his mouth with it, so I tried again, with the same response! I had a great time trying to sneak up on him with the bulb syringe, only to have him spot it and break into chuckles. He has also started turning his head away when I approach with his saline squirter. This means that Collin is able to SEE objects, RECOGNIZE them, and KNOW what they do! That's amazing! Of course, it's inconsistent, as most things are with CVI, but it's a huge developmental step.

5. Collin's Michelle P helpers have started back after our summer break.
It was a long summer full of upheaval and lots and lots and LOTS of Collin and Mama time. It was such a sweet time for both of us, but Collin was very happy that his good friends Amy and Heather started back last week. He loves his time playing and doing therapy with them. We are so grateful to have two women who know Collin so well and who we can completely trust with him. And we are so, so thankful to have received a Medicaid waiver that allows us to pay them. It makes all the difference in our home.

More to come!

1 comment:

  1. If it weren't for #1 I would be demanding video of #4. As it is I will politely request video of #4.

    ReplyDelete