Tuesday, May 01, 2007

No More ADAGEN! Finito!

I guess I have quite a bit I can write about this morning as it has been a while since my last entry. The biggest and most important thing that has happened just recently is that Parker had his last ADAGEN injection yesterday. We waited at the hospital for over two hours but it is something we are accustomed to doing. Normally we go a little later, anticipating a long wait before seeing a nurse but yesterday we didn't. So, as long as everything goes well with the gene therapy (we know it will) Parker will not have to get the injection of ADA injected into his leg twice a week. For those of you who are unsure what the injection is for, it is the enzyme that Parker is unable to produce himself. Unfortunately its immunological effects are not long-term. Parker's t-cells would have eventually come down after a couple years of using it.

Yesterday, our friends from California flew into Italy with their son for gene therapy treatment. They are well; however, they did have quite the difficult day and although they are living at a different residence then us, we did get to meet them last night. I am sure she will share her experience on her blog eventually as I do not want to write too much without their experience. I will say that it is extremely nice to have an English speaking family that is going through the same obstacles that we are here in Italy. They are extremely nice and we look forward to spending much more time with them. That brings the total SCID-ADA families currently here at the hospital to five (that we have met). Two have already been treated and three including Parker are awaiting treatment. Our new friends will soon be going through the same tests that Parker went through during our first six weeks here.

Today is another holiday here. It is Labour Day in Europe, so apparently, everything is closed. We were also under the impression that everything was closed on Sunday's as well. That said, Gaga and I took a trip to the City Center on Sunday to do a little sight seeing together. When we got there, we quickly realised that the shops near the Duomo are open for tourists. We did not go to Duomo for shopping so we began walking in search of the castle and church that the Bishop Saint Ambrose's crypt lay. Bruna had taken Tracy and I there a week a go so I did my best to find both with only having been there once.

Roy was quite impressed but I had found the castle in no time. The Saint Ambrose was a little more difficult to find but we weaved through the small streets of Milan in the direction I remember the church being and to my surprise we found it. There was a mass going on so we did stay for that for a little while. Then we paid a euro to purchase a candle that we could light and say a prayer for Parker. By now, we were quite hungry so it was off to McDonald's for a couple McMenus (combos). It was nice spending the day with Roy without the ladies. Yes, we are very lucky to have such nice spouses but it is nice to have a guys day out once in awhile. Besides, Nana had treated mama to a pedicure the day before!

Lastly, we have decided to be much more liberal in our method for giving Parker his dinner. Now, we just throw a towel below him, give him his food on his plate and let him go at it. Most goes on the floor in the end but some does eventually make it to his mouth. No more forcing food on the little monkey at dinner time.

For last year's article, click here.

Ciao for now!

5 comments:

nonna said...

Hey Parker,

Yeah no more Peg! We are so happy that you don't have to have needles in your leg twice a week.
Wow you must be a real big boy you have the freedom of feeding yourself like a little man now. Thats ok if you get some on the ground it can be cleaned up in no time.
What a treat for Gaga and Daddy to do some exploring.

Stay strong big guy.

love you tons
miss you more

Nonno & Nonna

Auntiekate said...

Hiya Parkerbear!!!

Yaaaaaaaaaaaaaaay!!!! One step toward coming home! No more Peg!!! We're very excited to hear that. I'm lovin' the way you eat your dinner! Too funny. I think I'm going to eat like that tonight........just to see the look on Uncle Michael's face. (he's such a neat freak, he'll probably have me committed). Anyway, we miss you sooooooooooo much. It's a rainy day here in Toronto. Jett sends big kisses your way. He told me that one day when he's bigger, he'll eat is dinner exactly how Parker does!!!

Love ya lots and lots,
Auntie Kate, Uncle Michael, and Jett xoxoxox

Auntie Natalie said...

Parker Pants,

Look at your delicious dinner! What a big boy you are feeding yourself!

I love the pictures of you and Mommy and Daddy...it is such a treat to see you all looking so happy together!

Have a wonderful night tonight and a super duper day tomorrow!!!

Lots of love,
Auntie Natalie xoxox

Uncle Mikey said...

Hey Parker,

Great news about the Peg! It's so exciting that with every step you take forward you'll soon be back home with all your cousins, family and friends! You look like your having a lot of fun feeding yourself...ahhh freedom...meal time should be fun! Stay strong big guy.

Love you tons and tons.

Uncle Mikey, Auntie Christini and Jacob

Franni said...

Hiya Parker!
Boy, you are really enjoying that dinner! Good for you! I can recall seeing quite a few pictures of your daddy eating pasta at nonna's house when he was your age, maybe even OLDER, but he was even messier than you! You are your daddy's son! Enjoy your Yummy Yums!
That is so wonderful about your PEG, not having to take it anymore... what a relief that is for you, I bet. This is definitely one step closer to you becoming healthy. I am so excited!
Hope u are having a beautiful sleep... maybe we will meet up in dreamland!
Hugs and Kisses,
Auntie Franni and Uncle Pete and The BOYS!