Continued Improvement, Day +137

We had a good visit in clinic today. It was a pretty short visit, we were in and out in about 2 hours. Olivia's port worked beautifully. The nurse practitioner went over the results of Olivia's CT scan from Friday. Since they did a complete CT in June (pre-transplant) they were able to compare the two. Basically it shows that her sinuses are completely blocked which is what we were expecting. Prior to transplant we knew that Olivia has some skeletal issues that prevent her sinuses from draining well. These skeletal issues are the result of her MPS and Dr. Paul believes that over time they will improve. It will take years though before we begin to see any skeletal changes. In the mean time we'll have to manage her sinus issues with a combination of antibiotics and, when it becomes necessary, sinus surgery. Overall Olivia is feeling much better, she's back to talking and playing more. I don't know if the oral IVIG is making a big difference. She's still having one bowel movement a day and while it's not diarrhea it's not regular poop either. We do have the right combination of antibiotics on board now, her white blood count is continuing to decrease although these antibiotics might also be causing some of her bowel issues.

Someone asked about Olivia's counts so her they are:

Hemoglobin: 11.2 (normal range is 10.5-13.5)
White Blood Count: 9.2 (normal range is 3.8-14.0)
Platelets: 272 (normal range is 150-4)

Wednesday will be our long day in clinic. We're looking forward to seeing Dr. Paul and finding out when we can leave Durham. Her speech, occupational and physical therapy were all scheduled to start in Fayettville this week so I had to push those back a week. I'm really hoping that I don't have to cancel next week as well but I guess we'll see.

My little Daredevil

Peter is a daredevil with a capital "D". I don't know if it's just his personality, or if it's because he's a boy, or because he's my second child. Who knows! The point is this boy can get into a mess faster than I can say "GO". He does seem to have a lot more control over his muscles than Olivia did at his age. Again I don't know if that's the difference between girls and boys or if it's because Olivia has Sanfilippo syndrome. Here are just a few of the predicaments I found him in over the weekend. The kids were eating breakfast. Olivia was at the breakfast bar and Peter was near her in his highchair. I turned around to start a pot of coffee and by the time I turned around again this is what I found..... I was right there and I didn't hear a thing. He must have stood up in his highchair and crawled on the tray but I can't figure out how he got from the tray to the bar. Peter also managed to unlock and open the dishwasher all by himself. But how could you be mad at this face? He's guilty and he knows it but he also knows that if he gives mom this smile she can't be mad. You can also see his 6 teeth, 4 on top and 2 on bottom. Such a big boy!

Finally Sunday, Day +136

I'm so relieved that today was finally Sunday, hopefully we're one day closer to going home. Peter slept in until 7am today. I know he would sleep longer but he starts to wake up which wakes me up and then he sees me moving and starts screaming. Among other things I'm really looking forward to everyone having their own room again when we go home. I got everyone bundled up and we headed to the hospital to pick up Olivia's medicine. It was so boring here today. It looked beautiful outside today, the sun was shinning but it was cold. It would have been really nice to go out for a walk but I didn't want to expose Olivia to the cold so we were stuck inside. We built an enormous fort and had fun playing inside of it. Then I pulled all the cushions off the couch and let the kids jump off the couch onto the floor. It was good exercise for Olivia and Peter enjoyed scrambling around. Peter and I did have a little moment earlier. He had an absolute meltdown when I wouldn't let him take the flashlight away from Olivia. My darling little boy has a bit of a temper and he's accustomed to getting his own way. Olivia had the flashlight and he took it from her. I gave it back to her and told Peter it wasn't his turn yet. He took one long look at me then he started huffing and puffing like a woman in labor. It was all I could do not to bust out laughing. When he realized he was not going to get his way he let out the loudest wail! I think this was the first time I haven't let Peter have his own way.

Mike finished another jump today, it was a foreign jump with the Canadian Armed Forces. I wish I could have been there to see him. We had been planning to go see him, the doctors had even given us the okay for Olivia to go since we'd be outside and there wouldn't be too many people around but with Olivia's complications this last week it wasn't an option. I'm glad he had fun and glad that it's over.

Basically we spent all day destroying the apartment, it's not dirty but it is a disaster. I have a lot of straightening to do before I can get to bed. I'm ready for the new week to begin. I can tell that Olivia is feeling better but I think she's just ready to be done with all of this as well. She keeps asking to go "bye bye".

I wish I'd taken a picture of our awesome fort from the outside but I did get a couple pictures of us playing inside the fort. Olivia was totally saying "cheese" and smiling but since it was dark inside the fort I had to have the flash on the camera on and she closed her eyes every time I tried to take a picture.
Peter's meltdown because it wasn't his turn.
He's all smiles when he gets his way!

Keeping Busy

Last night I spent some time trying to find activities we could do over the weekend since we won't be able to see Mike. He was scheduled to jump today but it was postponed because of the weather. I'm glad that he didn't have to jump out of a plane in the rain, I'm sure it's scary enough when the weather is beautiful. He still couldn't come in to Durham because the jump was rescheduled for tomorrow. I was looking for some fun, creative things to do this weekend and I decided we could make some Christmas gifts. We had a baking day today. Olivia had fun helping me and Peter had fun making a mess. As I was cleaning up from our baking activities I thought about how successful our day had been. I started to look forward to my Sunday evening shows and packing the diaper bag for our trip to clinic the following day, and then I realized that it wasn't Sunday and I was so depressed! We still have a whole day to get through tomorrow before we can start the next week. I'll have to think of something we can do tomorrow to keep us all occupied.