Friday, April 28, 2006

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.

5 comments:

Uncle Michael said...

Well wee man, here’s to being another day closer to going home! I know you must be fussing about some of the details regarding what to pack, but believe me, there are many tricks for making your journey home easier. Being on the road in a rock band has taught me a few lessons for organizing your belongings, so I thought I’d give you a few tips.
First, always keep shoes and toiletries at the bottom of the suitcase. They are heaviest and provide a great base for the clothes you put on top of them. When doing this, I would start with blue baby jumpers and bibs on the left and socks, underwear and off coloured jumpers on the right. This allows you faster “put away” time when you get home as all your clothes have a colour coding. Finally, put incidentals on the top. I don’t suggest whiskey bottles or gold albums, they get broken. No, instead try baby bottles, soothers and small stuffed toys. Other than that, just remember Canada Customs. They can make your life so very…..very…..difficult.
Anyhow, until then keep strong and healthy. I’m always here if you need to chat.
Lots of love,
Uncle Michael

Stacia said...

Oh Parker!!! I am so excited for you little man!!! You will get to go home very very soon!!! Your mommy and daddy will be so happy!!! Before you know it..it will be time to go to Italy...and again before you know it you will be travelling back to your home in Canada a super healthy little boy and all this comotion behind you!!! You seem to really amaze us every day...and i know we are just seeing the begining!!! Keep up all your hard work Parker!!!

LOTS AND LOTS OF LOVE,

Stacy
xoxox

Say hi to mommy and daddy for me!!!!

nonna said...

Hey Park

So you're in movies now, isn't that great. I am sure your Granddad was thrilled to see you, and please wish your Nana and Granddad a Happy Anniversary from us. Before you know it you will be home in that great room your Mommy and Daddy have ready for you.

Stay Strong!

love you tons.

Nonno & Nonna

FrancineElizabeth said...

Little Parker,
It's me, Auntie Franni! Patrick has been monopolizing the message time from me lately, but I am fighting back! Truthfully though, he really does love you, so I don't mind letting him tell you so.
Sounds like you are coming home soon! I can't wait! I bet you are so big and cuddly, certainly you're strong, but gorgeous and playful... can't wait to check out your little toes!
I know life can be exhausting, but don't ever miss an opportunity to show off your talents by sleeping... you NEVER know who is watching! But, again, you are so cute, who's really going to miss that?!
I haven't talked to your mommy in a long time it feels, so make sure she knows I am always thinking about her and sending her all the extra strength I have!
It is Friday today, which means your proud daddy will be with you for the next two days. Have fun!
Hugs and Kisses!
Auntie Franni and Uncle Petee xoxoxoxoxo

Natalie said...

Hi there again Parker!

I had to delete my last post because I made a few silly mistakes in my word spelling...you can't have a teacher spelling words wrong on your site right?!?!

I am so glad to hear that you will be coming home soon! What happy news for you and your Mommy and Daddy!

Please tell your Nana and GrandDad that I hope they had a wonderful anniversary! Uncle David and I can't wait to celebrate all of these special occasions with you in person!

Lots of love Parker Poo!

Auntie Natalie & Uncle David xoxo