Thursday, May 04, 2006

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.

8 comments:

coolauntiekatie said...

Hiya Parkerbear!!

Can't wait to see the new video later! I strongly believe that everything happens for a reason, so I think your Daddy is absolutely right! You are such a warrior!! You've already overcome some massive obstacles in your young life, and I know in my heart that you were put on earth to accomplish great things. You've already touched so many people, many of which have yet to meet you in person!! ooooookay, no more serious stuff! Miss little you lots little Bear! Stay strong!!!

Love,
Auntie Kate xoxo

Natalie said...

Hi There Parker Poo,

I also believe that you will come through all of this stronger and having taught so many people about the importance of valuing each day and loving their friends and family with all their hearts each day - just like we all love you!

I can't wait to give you a hug in person little one!

You are special, special, special!

Love,
Auntie Natalie & Uncle David xoxo

nana said...

My Brave Little Man:

How we love you so deeply. You have indeed been put on this earth
to accomplish great things with your life and draw so much attention to this horrific disease which you will overcome.

I know the injections are painful but they will prove to be what gets you to Italy for your Gene Therapy and in the end - a good immune system.

So glad that Daddy had a good birthday.

Can't wait to see you on Tuesday.

Much love,
Nana and Grandad

nonna said...

Hey Parker,

Like your Auntie Kate,I too am a strong believer that everything happens for a reason and something positive will also come out of all this. You big guy are paving the road for many other little ones and only strong individuals are choosen for big jobs.I will be back on later tonight for the premier showing.
Stay Strong big guy.

love you tons

Nonna & Nonno

Stacia said...

Oh parker - Look how handsome you are!!!!

I hope you have a wonderful weekend and not too many side effects from your new treatment!!!

HUGS
xoxoxoxoxoxo

Uncle Mikey said...

Hi Parky,
I love your new outfits! You look like such a big boy now! A big Happy Belated to your Daddy. We hope he feels better soon so he can play lots with you.
We truly can't believe how strong you are. You are an amazing boy. We're happy you got to start your PEG-ADA...we know it'll work out great for you!
Love and missing you heaps and heaps,
Uncle Mikey and Auntie Christini

Allyson said...

You look awesome in your stripped shirt-I predict your cover to woo quite a few ladies in that outfit! Have a fun week-end and hope your dad can come in to see you! Feel better Kevin!

FrancineElizabeth said...

Hi Parker!

You look so so so cute in your clothes!

I know I mentioned last Friday that your daddy would get to spend time with you... and then he was sick. I am really hoping that tonight he gets to spend some quality time with you and tons this weekend!

Boy, you are cute!

Missing you tons and can't wait to see you in a few weeks!

Love,
Anutie Franni
XOXO