Tuesday, May 16, 2006

What an Alert Little Boy!

I got to spend a portion of the morning with Parker today. We spent most of the time playing together. We again worked on strengthening his neck muscles by hanging out on his tummy. Parker can now spend a good three minutes on his tummy looking around before he gets cranky and wants to roll himself over on to his back. He does all of this without any support. We used to have to place pressure on his bum to reinforce that he needs to push his bum down to help his head up, but he no longer needs this.

We have now modified his gymni so that he can kick the wheel that spins around and plays music. Yesterday, he actually knocked his lobster right out of the socket on the gymni. No worries though. Daddy's quick reflexes was just quick enough as he caught the falling lobster before it plumetted to its death on the cold floor below.

Parker had his fourth injection of ADAGEN (PEG-ADA) today. Our tough little guy did very well. He was a little hungry afterwards but that is hardly surprising. I had mentioned that his formula was being "deconcentrated". He had his first full day of the new formula. Since five o'clock this morning he has already eaten over 800 mL of the new formula. Parker drinks it like water. Actually, compared to before it pretty much is water. Okay. Not really but he sure is hungry more often now.

My wife and I were a little worried that he would not gain weight on the new formula; however, he gained quite a bit today. Parker gained just shy of five ounces over the last day. I am guessing that alot of it has to do with the increased amount of liquid and will eventually correct itself.

What was also exciting was the Parker slept through the night for the first time last night. We put him down at 6:30 last night and he did not wake up until five this morning. He then ate and then went back to sleep.

My wife and I met with a wonderful reporter from The Toronto Star this morning. We are trying to get as many people familiar with Parker's disease as possible and I am sure The Star will do a wonderful story on him. I am unsure of the date it will appear in the paper but I expect it will be either Monday or Tuesday after the long weekend.

Now, I mentioned in the title that Parker is an alert little boy. In the past few days I have really noticed a difference in him. He is constantly wanting to play with his dad. Whenever I come to the sliding door of the anti-room he stops whatever he is doing (even eating) and smiles at me. Who would have thought that Parker would think all the hard work he does when he is with his dad was fun? Way to go little monkey!

3 comments:

Funny Face said...

Hey Parker!

Way to go! You are doing so well. We are so glad everything is working for you and you are getting stronger everyday.

You have great parents who are working so hard with you and for you. Keep it up guys!

Hope you have another great day Parker!

Love

Laura, Craig and Elizabeth

FrancineElizabeth said...

Dear parker,
I HAVE to tell you that you are adorable!
Patrick also wants to say something to you.
I love to kiss you. I want to hug you (as he hugs himself). Do you like dinosaurs?
We can't wait to see you when you get home!
Love Auntie Franni, Patrick Uncle Petee and Jonathan

coolauntiekatie said...

Hiya Parky-Sharks!!

Your Mom told me that all your counts are up!! Yeeeeeeeaaaaaaaaayyy!! I'm excited to see you in the Toronto Star this Saturday!!

Love ya lots and lots,
Auntie Kate xo