Day +95

Our clinic appointment today went well, it was quick and we were back home just in time for Olivia's 11am appointment with her Occupational therapist.

When we were checking in for our appointment today Olivia was breathing pretty fast. She tends to breathe quickly when she has her big, thick green mask on but this was even quicker than normal. They checked her oxygen level and it was good. By the time we got into an exam room it had slowed down and Olivia was happily eating a snack. They drew quite a bit of blood today for all of the 100 day labs. I cannot even begin to explain how much easier it was to do these post-transplant labs compared to the pre-transplant labs. Now that Olivia has her port they were able to draw all the blood in just a few minutes. Olivia didn't cry at all and the entire process was quick and painless. For the pre-transplant labs they had to split them up over a 2 day period, each day they had to stick Olivia several times, she was screaming, it was awful. They are doing another chimerism test to see what percentage of Olivia's cells are donor cells vs. her own cells. Of course we're hoping for a large percentage of donor cells! They will also test to see if Olivia is starting to produce the missing enzyme that is responsible for all of this mess! It will take about 2 weeks for the test to come back but we are hoping to see some presence of the enzyme. Then we would know that this entire process was worth wile.

At clinic today I also got my H1N1 vaccine (here's the background on my feelings about H1N1 here. I am relieved to have had my vaccine, unfortunately they didn't have enough for Peter to get it. They have plenty of the nasal vaccine but since it's a live vaccine that's not an option for us. Olivia can't be around anyone who has had a live vaccine (either regular seasonal flu or H1N1) until at least 30 days after they have had the vaccine.

Now all we can do is wait for the results. Wednesday will be a LONG day. Olivia has her echo cardiogram, EEG, a chest x-ray, and her pulmonary function test. They will compare these results with the results from her pre-transplant evaluation to see how much damage was done to Olivia's body during the transplant process. After our morning tests then we have our regular weekly appointment at clinic.

In Peter news he has decided he has a new favorite flavor combination, it comes from the floor of the pantry.....dryer lint and onion skins. Peter got into the the trash can that I keep in the pantry/laundry room he pulled out a giant hand full of dryer lint and shoved it in his mouth. His "ball 'o lint" was followed by the skin from an onion which he got from a sack of onions that was on the bottom shelf of the pantry. I'm sure this flavor combo will be featured soon on an episode of Top Chef :)