Monday, August 15, 2011

Monday, August 15, 2011

Collin had his clinic visit today, and it went very well! He weighed in at 14.5 k (31.9 lbs), and this is the second time he stood on the scale himself (instead of the nurse weighing me alone, then me holding Collin, and taking the difference)! Then he was able to stand for his height to be measured; we did it twice because I was surprised at the number; he was just a hair under 35" which means he has grown almost half an inch in a month!

Today we saw one of the other pediatric oncologists who hasn't seen Collin since he was in the hospital last year. He was pleased to see how well Collin is doing. We talked about how Collin has handled the Accutane, and I mentioned how it seems to me that Collin's skin becomes more dry on the right side of his face than it does on his left when he is on it. He explained that the damaged nerves that cause the right-sided facial paralysis are also part of the autonomic nervous system, and it's possible that that contributes to the skin drying out more on the right side. He said he wouldn't be surprised if Collin sweats more on one side of his body too; I've never looked for it, so I'll have to see if I notice it now. It was just nice to know that there's an explanation for the pattern of dry skin from the Accutane and that I wasn't imagining it. We picked up the last round of Accutane from the pharmacy today, and tonight Collin had the first of his final 28 doses. In two weeks he will be finished with his maintenance chemo!

Today's labwork showed Collin's ANC was 2420; normal would be around 3000, so it would seem that his immune system is pretty good. Sometime in the future his IGG (immunoglobin) level will be checked which will give us more information about how Collin's immune system is. Once his mediport is removed sometime in the fall, I won't have to rush him to the ER for blood cultures every time he gets a fever. Hopefully it will make flu season a little less worrisome!

Collin continues to make progress walking on his own at home, although balance is still an issue. He still falls multiple times a day, and many times he will fall right on his face. Every time he falls it breaks my heart, but every time he just picks himself up and keeps going. He never gives up. His physical therapist gave him a few weeks break, and then re-evaluated him on Aug. 5. She feels the balance issues are largely due to muscle weakness, and she will now be seeing him every other week to continue working on his muscle strength and balance. She also gives us activities to work on at home with him to help.

Since we are now only going to therapy two to three days a week, I signed Collin up for a Kindermusic class that starts the end of this month. He loves music, and his speech therapist said that Kindermusic will reinforce some of the things she works on with him. I am also going to register him for the next session of toddler story time at the library in September. I am ridiculously excited to expose him to some new experiences, get him around other children in a more "normal" setting, and do some of the things with him that I used to do with Neya when she was his age!

Collin has come so far in a little over a year. He is a happy, joyful little boy with a sense of humor, and he makes me laugh on a daily basis. One day last week, he and Neya were playing. Neya was laying on the floor setting something up that she didn't want him to touch, so she kept telling him to leave it alone. This of course made him angry. I called him over to me to try to distract him. But a minute later he walked over to Neya, leaned down and yanked her headband off her head, and walked towards me as fast as he could without falling...with a big grin on his face! I just laughed hysterically; it was such a normal brother thing to do! Another day, Collin's student speech therapist was working on his word cards with him. She showed him the picture of an eye, which we knew he can say very well. She asked him what the picture was. He got a smile on his face, and said "nose." She said, "That's not a nose. Where is your nose?" Collin then pointed to his nose. She asked him again what was in the picture. He grinned again and said "nose!" He certainly has a sense of humor!

This evening I learned that another little Medullo warrior earned his angel wings today. Little Bo was diagnosed in 2009, and relapsed this past February. His CaringBridge page can be found at Please keep him and his family in your prayers.