Trip to the San Raffaele

It has been a few days now that we have been home and everything has been so much better as a result. Parker has continued to run around the room from toy to toy as he works on his new skill. He still likes to use his puzzle but instead of putting all of the shapes back into the correct spots as we had been accustomed to seeing he now takes the pieces and places them in different spots of the room. Two go on a chair, a couple more go on the base of the high chair, and then a few go on the window sill. He has it all organised.

The past couple of days have been very difficult for my wife, as her parents (Nana and Gaga) left early yesterday morning for home. They helped quite a bit when they were here and we are going to miss them a lot now that they are gone. Parker really enjoyed the time he got to spend with his Nana and Gaga the past two and a half months. He loves them very much!

This morning we made our first trip back to the hospital. I had mentioned in my last post that we would be going back to the hospital today so that Parker could give a blood sample. We should hear the results of the sample later this evening. Once a week, Parker will go to the San Rafaelle for his examination and give blood. Some visits will be more involved then others but for the most part they should be straight forward.

We noticed today that our Peg Perego stroller is broken in a few places. It is a great Italian made stroller that my parents had gotten for us before Parker was born. I will look on the Internet later to see if I can locate where the Peg Perego building is in Milan (if there is one) so that we can get Parker's stroller repaired. For now, it works but we will only use it for trips to the hospital and will use his push-tricycle for his walks around Milano Due.

Parker has continued to enjoy the food he is getting with mommy and daddy. Tonight we are having salmon and risotto. Parker has never had either before but we are pretty sure he will enjoy them both. We already know that Parker loves fish and salmon having so much flavour I am pretty sure that we will devour it in no time.

I have recently purchased and read a paper on SCID ADA written by a number of European and American doctors who specialize on the treatment of SCID ADA. Dr. Aiuti was one of the members of the group so it was nice to be able to read more information on the subject. The paper summarized the treatment of SCID ADA via gene therapy, bone marrow transplant and PEG-ADA. If anyone is interested on the subject I would suggest that you take a look. It was published this year and I know that I would have found it extremely valuable a year ago when we were deciding on Parker's option. That said, being able to speak with Parker's doctors have always been the best way to obtain valuable information about the disease.

Sadly, we have some news to share. One of Parker's best friends passed away a couple days ago. He was one of the only children that Parker saw regularly while he was at home. Three year old Evan had a different form of SCID than Parker but also spent time in isolation at Sick Kids with Parker. Parker saw him regularly at the immunology clinic. Evan was full of energy and always seemed so happy when we saw him. Evan and his family are in our thoughts and prayers and we hope they are in yours as well.