Friday, September 22, 2006

Lack of Control

Every once in a while I feel like I have to vent and today is one of those days. Every few days I have someone ask me when we are going to Italy for Parker's treatment and for the most part I have told them it would be near the end of November. You see, on November 2nd Parker will have been on ADAGEN for six months. One of the requirements for taking part in the Italian study is that you must be on enzyme replacement therapy for six months. That said, we really do not know the exact date we are leaving for Italy. See, being part of a research project leaves much of the control outside of our scope. So, although we would like to be in Italy as soon as possible, an actual date has yet to be set.

Are we going? Of course. When? No one wishes they knew the answer to that question more than my wife and I. Don't get me wrong, I am not upset that people ask me when we are going. I would expect people to. It is the lack of control and not knowing when we are leaving is what I have difficulty with. That said, we will be patient and continue to do what we have been doing. That being making sure Parker is healthy and developing at least at age.

On a much lighter note, Parker had his ADAGEN injection today at Sick Kid's. The amount of PEG-ADA had to be increased to 1.2 mL since he has continued to gain weight at a steady pace. Parker weighed 9.70 kg or 21 lbs 4.5 ounces today. It should not be too long before he reaches the 10 kg mark which is equivalent to 22 pounds.

For those of you who have noticed that I have changed Parker's weekly poll great. For those of you who haven't check it out now. I am going to use the poll the next few weeks to get some information about the demographics of the people populating this site.

Tomorrow my wife and I are heading down to Brampton for a fundraiser that some friends are putting on through their church. Riding for Parker, a 100 km bicycle race is happening tomorrow morning. So, check back tomorrow to check out how it went.

2 comments:

Natalie said...

Good Morning Little One,

I hope that the bike ride in your honour goes well today Parker...what a special event for you.

Tell your Daddy that we all understand how difficult it must be to be dealing with so many unknowns. You are all doing your best to take each day as it comes and we admire you for your strength. I hope you know that you have many prayers said each day for all of you.

We love you Parker.
Auntie Natalie & Uncle David xoxo

Uncle Mikey said...

Dear Parky,
I love your onesie! Your uncle Mikey would love that! Don't worry sweetie, you will be in Italy before you know it, getting stronger and better. It has to be so frustrating and tiresome not to know exactly when, but you all have been so patient and strong. Just remember, you are ALWAYS in our thoughts and we love you very much.
Way to go for gaining more weight big guy!
Miss you tons.
Love Auntie Christini and Uncle Mikey xo