Thursday, July 25, 2013

Thursday, July 25, 2013

Well once again, I can't believe how much time has gone by since my last update. We've had a busy but good three months.

Collin came down with a virus in April that ended up going through all four of us. It lingered with him though, and he was admitted to the hospital for one night for observation. His doctor ordered a few emergency doses of hydrocortisone, which helped his body handle the stress of being sick, and was what he needed to get over the bug. At his next appointment with his endocrinologist a few weeks later, I told her about him needing the hydrocortisone when he was sick, and we talked about how he wasn't eating much and hadn't gained any weight in a while. She decided to put him on a two-week trial of a low dose of cortef. During those two weeks, he was also on accutane, and I noticed that the cortef seemed to be a huge help in preventing his skin from getting so dry. It also increased his appetite. So she decided to keep him on it, and told me to let her know if he gained too much weight. Well, this Monday in clinic, he was at an all time high of 18k (39.6lbs). I checked with the dietician, and she said he is below 3% for height, and around 50% for weight on the growth chart. This means he's not overweight, he's undertall (hey wait, that's my excuse!) Ideally for his height, his weight should be around 15.7k. I let the endocrinologist know about his weight, and asked if he could just take the cortef for the two weeks of each month that he is on accutane, and she said yes. Hopefully this will work well for him.
Collin's one night stay in the new Penn State Hershey Children's Hospital

At the end of May, Collin got his hearing aid. He has adjusted well to it, and says it does help him hear better. Here is a picture of him after he got it:
Collin's new hearing aid came with a matching friend

He also had a dental check up in June, and we found out he had his first cavity. It was very tiny, and the dentist was able to fill it quickly. The cavity was so small he didn't have to drill enough that Collin would even feel it, so he didn't even numb Collin before filling it (the needle would have hurt more then the drill). We were in and out in about five minutes, and Collin didn't even flinch! He was just proud that "the dentist fixed my tooth!"
Collin having his teeth cleaned

We've been enjoying our summer, and have finally gotten to do some of the "normal" family activities that we haven't been able to do in a long time. Collin loves music, and has enjoyed going back to Kindermusik classes. We took him to his first movie in a movie theater recently (to see Despicable Me 2), and he loved the movie and the experience (not to mention the minions!) And, we finally got to get away for out first family "just for fun" vacation since before Collin was born! We spent a week at the beach. Collin wasn't too fond of the sand (he definitely doesn't like getting dirty) but he did walk in it a little and sit on a towel on the beach. When he decided he was ready, he stood at the edge of the water and let the water wash over his feet and legs. He was content to stand in the surf for a while a few times, and he really enjoyed it. He had a little run in with a ghost crab who pinched his finger, but Collin wasn't bothered by it until I put a bandaid on him. That's when he got me, because he didn't want a bandaid! Silly Mom! It was wonderful to get away, go somewhere new, finally relax a bit, and not have to go to appointments every day. By the end of the week, he was telling me he didn't want to come home! (Neither did the rest of us!)
Very reluctantly playing in the sand
Letting the waves come over his legs
Hi Mom!

On August 7, Collin has his next MRI. Then two days later he, Neya, and I will return to Houston for two weeks. Collin will have his one year post treatment follow-up with his radiation oncologist at MD Anderson. He will also have another follow-up with the pediatric neuro-ophthalmologist who did his eye surgery in December. As long as everything looks fine, he will have what I hope will be the last eye surgery, during which the oculoplastic surgeon we met last summer will put the tiny weight in his right eyelid that will help his eye close more. Then two days after we come home, Neya will start fourth grade!