Tuesday, April 10, 2012

State of the Collin

My blogging has been miserable lately, which nearly always results in an enumerated list.

1. Iron - We're up to full dose right now and other than one suppository at the beginning, we've been managing things well in the poop department with diet and a strategic dose of Miralax. He does seem to be a little nauseous in the morning, but it's not severe and there's nothing I can do about it anyway. We have at least another month before we will recheck his blood levels and see whether we can come off of this wretched stuff.

2. TAOS - It's been a longer-than-I-expected process (which is what I expected), but Collin's custom-built TAOS should be completed in the next day or so and sent to Paducah, where we will go sometime in the next few weeks for the final fitting (HERE WE COME, HOLLANDS!).

3. Easter - We went to the farm late last week for early-Easter-slash-Grandad's-birthday. It looks quite different than we first visited after the tornado. Most of the demolition and hauling-away is done and the rebuilding process is just starting. We mostly relaxed and took walks and had good food. Collin went on his first Easter egg hunt (with Ila, of course). I won't lie, it's hard doing things like that. Collin can't see the eggs, he can't walk to the eggs, he can't pick up the eggs, and he can't put the eggs in his basket. So there is a part of me that is sad to hunt Easter eggs because of everything it means. But then there is another part of me that is thankful and happy that Collin takes joy in so many small things and that we are able to help him participate in the things he can't do himself. So that part of me patted the other part of me on the back and said, "Come on, it's okay," and we pushed Collin around the yard in his stroller and stopped at the eggs, picked them up for him, put them in his hands, talked about the feel and the color, and helped him put them in his basket. He loved it. I have no idea how much he got out of what we were doing, but he did love it.  We continued the egg-hunting fun when our dear friends the Jacksons came over to our house on Easter Day to celebrate with us. Here are some pictures to prove how much fun we had all weekend.

4. Big Boy - Since our last calorie increase, Collin has gained two pounds and another inch. I have consequently started a functional workout routine and chiropractic treatment. Take a gander at how huge he looks in this new chair we're borrowing from Ms. Melody.

5. Upcoming: Next week, we have two nerve-wracking meetings in a row - reevaluation for the Michelle P waiver and an appeal hearing with Medicaid over denial of coverage for Collin's growth hormone. Collin's spring NACD evaluation is also coming up, and then our next appointment with Dr. Awesome. Never a dull moment!



  2. I am just now reading this. My internet time is few and far between right now. Glad to hear what is going on with Collin. Miss seeing you guys.

  3. okay. I love that he has Kyle's crazy hair. It's awesome when it shows up so well in a photo. :)