PEG-ADA to Start Soon

Parker had another visit from his occupational therapist yesterday. I am not sure if my son plans it this way but it seems as if everytime she comes to work with him he decides to take a nap 20 minutes before she gets there. We have decided to lay down the law, as he was forced out of bed when she arrived. He tried to play us for a while by just sleeping in his Bumbo, but after a few taps on the shoulder he began to look around. Of course, he looked over his left shoulder for a good few minutes as he stared at his saturation monitor. But eventually he decided to do his regular thing and scope out the rest of his room.

It was Nana's and Grand-dad's anniversary yesterday. I thought it would be a trea Grand-dad if we video taped Parker for a while so he could see his grandson since he went into isolationt for six weeks ago. Parker was such a good boy on video, smiling and playing. So far I have only placed images on this site but shortly I should have some short video of Parker for those that want to see the little guy in action. Parker, Daddy and Mommy all hope that Nanna and Grand-Dad had a wonderful anniversary yesterday.

Some good news has finally arrived. The PEG-ADA for Parker has been approved. Hopefully it should arrive at the hopsital in the next couple of days. Once it is here, Parker will receive the injection twice a week in a muscle. This will supply him with the enzyme that he is missing and as a result the toxins in his body will start to decrease. Remember the purpose of adenosine deaminase is to neutrolize the dATP in the body. The toxins kill off his T, B, and NK cells (immune system); with the toxin removed he should be able to at least have some normal T-cell production and function. I have mentioned previously that this is definately not a long term solution as the body finds a way to eliminate the T-cell function after a couple years. However, it will allow us to take Parker home in about six weeks until we do go to Italy. We are so happy that our little boy will get to come home. We will not have to wear the protective gear, and close family and friends will be allowed to visit as long as they are healthy.

So that we can control the traffic in his room, Parker has been assigned a core group of nurses (10) for the duration of his stay in isolation. This is important as we want to dramitically decrease the chance of Parker obtaining an infection while he receives his enzyme replacement therapy.

Remember to vote for Parker each day until the contest is over April 31st.