Tuesday, December 28 - Day +76

I have been meaning to do an update for over a week, but by the time I've gotten Collin to sleep I am drowsy myself, and sleep has won out. We are having a great visit with my parents, and between Collin's appointments and the activity of day-to-day life, we have been keeping busy. So here are the highlights since my last update...

Thursday, December 16
Collin and Neya had been sick on Wednesday, and Collin and I had spent Wednesday afternoon in the clinic. On Thursday, both kids were feeling better, so we felt it pretty likely that they both had the same 24-hour bug. Even though Collin's blood cultures were still negative for an infection in the mediport, we had to return to the clinic for another antibiotic infusion just to be safe. Luckily we weren't there as long as we were the day before, and Collin spent the time watching Elmo and Thomas dvds. When it was time for us to leave, all of the nurses from the clinic came into the room we were in, sang Happy Birthday to Collin, and presented him with a birthday banner and a gift. It was so nice!

Friday, December 17
Collin had a speech therapy appointment in the afternoon. He participated more than he had been so far and had fun earning stickers when he completed a task. It's nice to see him warming up to his speech therapist and interacting more with her.

Saturday, December 18-Collin's 2nd birthday!
We had a little birthday open house for Collin Saturday afternoon. We had family and a few close friends over, and I invited his medical team over for cake because without them Collin wouldn't be here to celebrate any more birthdays. Some of his nurses came by, as well as one of his occupational therapists and his oncologist. It was a very happy day, and a wonderful celebration!

Tuesday, December 21
Collin had an appointment with the ophthalmologist Tuesday afternoon. He was pretty happy with how the corneal abrasion is healing, and has decided to do surgery on Collin's eyes in February. The surgery is called a Bilateral Medial Rectus Recession. The eyeball has muscles attached to it, on the top, bottom, and either side; they move the eye up, down, and side to side. The ophthalmologist will detach the outside muscle from each eye and reattach them farther forward on the eye, so that the muscle will then turn the eyeball farther outward. The surgery will take approximately an hour and a half, and the recovery time will be six weeks. The ophthalmologist will monitor the results of the surgery, and may need to perform another similar procedure farther down the road on the muscles that pull the eye inward.

Thursday, December 24
Poor Neya came down with a nasty cold and a fever of 102, and was very disappointed to miss her Christmas pageant and Christmas Eve Mass. Collin's oncologist said I could take him to mass on Christmas Eve, and he was an angel through the whole service.

Friday, December 25
We had a wonderful, happy day being together with family. I was so thankful that Collin is still here with us, and kept thinking of the many families who were having to spend the day in the hospital with their child, and the families who had to get through this season missing a child whose battle with cancer has been lost. My heart breaks for them, and they are always on my mind and in my prayers.

Monday, December 28
We had the honor of hosting a visit from some of the wonderful members of our THON organization, Altoona THON. We had a great time getting to know each other, and learning more about the fundraising efforts of these selfless Penn State students. We are so excited to attend THON weekend in February; I know it will be an amazing weekend!

Today we are having a relaxing day at home. Neya is still sick, so she has a doctor's appointment later this afternoon. Thankfully so far Collin hasn't caught whatever it is she has, and I hope it stays that way. I've always hated this time of year when kids are always bringing some bug home from school, and it is more stressful now hoping that Collin doesn't get sick. We have had a great visit with my parents, and are sad to see them leave tomorrow!