Growing so fast

This little boy is growing so fast. I still haven't gotten his haircut, I know he could use a trim but I'm just not ready yet. I also still haven't scheduled his 18 month well-baby visit, he'll be 18 months old on May 11th. I don't want to go to the appointment, that will make it more real.

He doesn't even look like a baby anymore when he's sleeping, he looks like a big kid.
I took these pictures when I went in to wake him from his nap. When he heard the camera he peeked out of one eye, saw me and then covered his head with the blanket. I can almost hear him saying "leave me alone ma".

Wonderful Wednesday, Day +279

Today marks the 9 month anniversary of Olivia's transplant. The 9 month post-transplant studies were scheduled for today so I arranged to have a babysitter watch Peter while Olivia and I drove to Duke. They drew tons of blood for Olivia's labs today, they're checking for all sorts of things from her immune function to her chimerism (which tells us if she's donor cells or original cells). We should get the results at our next appointment. Our first stop of the day was pulmonary function testing. Olivia did fantastic, she didn't blow into the mask as we were hoping but she did scream into it so that's close enough. Her results were 20% better than they were at the 6 month mark. Our second stop was radiology for an echo cardiogram. Olivia's heart function looks good, we'll review the full report at our next appointment. We headed back up to clinic where Dr. Paul and Andre were both impressed with how well Olivia is doing. I was so excited to share with them that Olivia's poop is normal. She's never hasn't had normal poop in years, from about 18 months on Olivia always had really soft stools (as is common for kids with Samilippo syndrome) so normal poop is really exciting to us! Olivia's regular labs look great. Her skin looks good. She does have mild eczema but that's unrelated to the transplant. Olivia's liver has shrunk and it's now well within normal range. The last stop on our schedule was an EEG. I was a little concerned about what sort of information they were looking to get from the EEG. Olivia had an EEG as part of the 6 month studies just a few months ago. They said they were looking for any type of seizure activity (which is common in kids with Sanfilippo syndrome). Olivia has not ever had a seizure and the likelihood that she would start to develop seizures at this point post-transplant is slim. They decided to hold off on the EEG for a few more months and do one as part of the 12 month studies. I was thrilled! The plan at this point is for us to return to Duke on May 12th, if things are well at that point then we won't have to return to Duke until JUNE 12th!!!!

After Andre told Olivia he wouldn't see her as often she got sad and said she wanted to come back. I caught her mid-sentence.


To celebrate Olivia and I went to Chipolte for a late lunch. The restaurant is very near the hospital and it's normally packed for lunch by by 2pm it's completely empty. Olivia and I enjoyed the beautiful weather and sat outside (in the shade of course). My burrito bowl was delicious and Olivia enjoyed her chips and guacamole. It was really nice to be able to spend some time with her one-on-one.

J-U-M-P

The other day we went to Mike's Battalion Family BBQ. It was nice to get to know some of the people that Mike works with. It was a beautiful day and the food was great. They had 2 bouncy houses for different size kids and they were surprisingly not crowded. Actually the entire event didn't seem very crowded. There were lots of people there but it was outside and it was in the middle of the day on a Friday (school day and work day for all non-military people so I think I low of people were unable to come). We let Peter and Olivia jump for a bit. Peter loved it and I think that Olivia enjoyed it. We had to wait until all the other kids were out before I'd let Olivia go in so I don't think she really understood what to do. I think she just thought it was a giant bed and she laid down, it was nap time thought so maybe she was just tired.

Earth Day Hodgepodge

Happy Earth Day! I have to start off by saying that I feel a little guilty on earth day this year. Several times throughout the transplant process I've thought about how un-eco friendly the whole process is. We have to keep our house really clean for Olivia and in addition the the gallons of bad-for-the-environment chemicals that I use each month we also have to use papertowls in the kitchen and in the bathrooms to dry hands (regular towels can harbor bacteria and mold, Olivia gets a fresh one every single day), we also threw away bags of trash every day when we were in the apartment--syringes, medical supplies, everything was wrapped individually in plastic, plastic gloves, etc. We can't use sponges (hello bacteria) so we go through lysol wipes like it's toilet paper. We threw away tons of food, Olivia would have half a bite and decide she didn't want it. Just one more thing to feel guilty about I guess.

Today began with physical therapy for Olivia. I wish I could get some better pictures but I'm generally very involved during Olivia's PT sessions. Olivia can now go up the stairs all by herself and if she's holding onto the rail with one hand and someone elses hand with the other she can go up alternating feet. Olivia can also go down the stairs all by herself now. Here Olivia is with her physical therapist, Miss Becky. I love Miss Becky because she's so willing to learn more about how to help Olivia, I really feel that she is a partner on this journey. Olivia loves Miss Becky because she has a fantastic voice and Olivia really loves songs lately. Peter loves Miss Becky because she doesn't completely ignore him and she always makes it a point to say hi to Peter.



After PT we headed out to plant our plants from Wednesday. I brought the camera and had planned on taking pictures. Olivia can't play with the dirt but she was happily swinging away on the swing. I thought Peter would love it, and he did but he also got a little messy. The boy was eating dirt, throwing dirt, picking up hand fulls of dirt and putting them down his onesie, trying to bury his foot in dirt. Peter then decided to pick almost all the petals off the flowers, he made them into a little pile and then brought the riped little shreds of flower over to me. I'll just pretend that he was bringing me his first bouquet. The whole thing was adorable and fun but very messy so I don't have any "during" pictures to share but here's some of the after.....