December 13 - Infusion #20

December 13 - Infusion #20

We got over to the hospital and got checked in. Levi had brought a popcorn bucket for Dr. V and the nurses too, and he was very excited to lug it in all by himself to give to them.

Once we gave them their Christmas present we got settled in to the jungle room. The animals were all dressed up for Christmas! Levi thought it was quite funny.

Next it was time to do some work. Nurse A found Levi and we headed over for vitals. He was his normal bugger of a self with vitals. He doesn't like to keep the oxygen sensor on his finger, it is way more fun to play with then to let it work!

 Since we were a little early they weren't quite ready for us with his bennadryl and plasma so we got to play in the playroom tube free. Levi loves to get to play tube free.

 It wasn't long of playing before we were back to the jungle to start the Bennadryl. Levi stopped at the drawer for snacks as usual! He loves the snack cupboard.
Dr. V is on vacation singing in Europe so we met with Dr. K. She gave us some information about a trial that is being done on a synthetic ADAMSTS13! It's gone through one adult trial which showed very good results. Dr. V and Dr. K have put Levi on the short list to be in the trial if and when it opens up to children his age. We are probably still a ways out, but its a great sign that anyone has even been able to make a synthetic version. It would very much change his life! Instead of getting a bag or bags as he gets older of plasma he would receive a small vial of ADAMTS13 which we would eventually be able to learn how to give at home! What a difference. We are probably still years out from this being on the market. But any hope for his future is a positive in our lives.

Levi likes to play with the "wheel" on his line. We have to be careful now though as he is almost getting strong enough to actually make it work and stop the plasma or bennadryl from going in. 

 The plasma was started and so was Planes! Our always movie. Levi was not wanting to really sit still much so Mommy pulled out the bag-o-fun and made a table for Levi in front of the chair and we did art projects. We colored, did stickers, and even painted! Levi loved it, and it was something different some kept him entertained for quite awhile. Turtle never went far away from the fun!

Planes was still on the TV so he was watching that off and on too!

 After Arts time Levi said that he was tired and we cuddled under a blanket while Daddy went to get lunch. He didn't fall asleep at all, but he did at least relax. Then he ate lunch and was a crazy man in the chair.

Finally the infusion was done. Levi got his tubie taken out and as per usual he wanted to go to the playroom to play for a few minutes.

 On the way out Levi got to pick a Christmas present! He was pretty excited about it, but the bag was big, so he half dragged it half lugged it out.

 We got in the car and Levi opened his present. He got a new book, a new stuffed animal, a solar Dory, a wrist rattle, and an Elmo bite toy.

 Levi stayed awake almost the whole drive home. Falling asleep with just a few minutes left in the drive. When we got home I transitioned him to the couch and he cuddled up on me and fell asleep for another 2 hours! Finally I was able to sneak out from underneath him, and he slept another 30 minutes on the couch by himself.

Levi's counts for the day were 215 so lower then we had seen for awhile but still great numbers. All in all the infusion went well and we are in the clear until our next infusion after the holidays!