PEG-ADA Starts Today

Today is a very special day. Parker is scheduled to have his first injection of PEG-ADA. We do know that there may be some autoimmune problems we may have to deal with as a result of starting the PEG-ADA; however, they should dissipate as his body becomes used to the drug.

I had mentioned yesterday that we were worried that Parker may have to have a bone marrow aspiration done to see why he is neutropenic. I did speak with a woman from California yesterday who informed me that her son who was also ADA deficient prior to starting enzyme replacement therapy is no longer neutropenic after having started the injections. The doctors nor I have read any literature linking the two together but I am definantly pleased to have now found one case of it. Regardless, the haemologists have decided that they would watch his counts over the next week and a half to see if the PEG-ADA does increase his neutrophil counts.

Yes, it was Parker's daddy's birthday yesterday. I had hoped that it would not leak out, as I did not want a big deal made of it. That said, I did have a good birthday. Parker sent his daddy some balloons and a card yesterday. That made me a little teary-eyed to say the least.

Although I do feel much better than I had a few days ago, I am definately not feeling well enough that I can go into the room with my baby boy and hold him. It was definately hard not being able to give him a hug on my birthday; however, he did smile at me through the glass. It was enough to make me smile.

The occupational therapist came by for another visit yesterday. She was pleased with everything he is doing; however, we now must work on his rolling over from his back to his front. I will post a video later today showing my wife and him working on just that.

I know that I have bene a little slow with the pictures on the web site lately. I do apologise for that. I promise that you will be able to see some new pictures for yesterday and today if you check back later this evening.

I have to say that I am completely overwhelmed with all the support my wife and I have received through this whole ordeal. With every kind word and every act of kindness we gain another ounce of strength. I have said it before and I will say it again. I know deep within my heart that Parker has been chosen to have this disease because he can beat it. And in beating this disease he will make people all around the world aware that it exists. We are very proud of our little boy.