Tuesday, June 22, 2010

Hello

Hello Everyone! My name is Suzanne and I am the new Hemophilia Mom. I am very excited to connect with everyone. I wanted to take a minute to introduce myself. I am a Mother of 2 great children and as you guessed one is my 9 year old son with Hemophilia. He is Factor 8 severe and a spontaneous mutation. So, every day is a new day for us. We found out at birth thru his circumcision. He had his first port put in at 18 months and has prophylacticly treated since then.

We have encountered an inhibitor. We were very fortunate to have only been affected less than 6 months and burned it out. Our new venture this year was going from 3 days a week of prophy to 2 days. We have been doing this for about 4 months now and it is working well so far. We infuse on Wed. and Sat. It sure did help us out with the chaos of school day mornings to only infuse once during the week instead of M-W-F. I was very hesitant to try it, but it seems to be working for him at the moment. We are in full swing of baseball season and had one minor incident where he and the ball met and the ball won! He must have had enough hanging on in his system cause all he came away with was a big bruise.

I am looking forward to connecting with Moms and sharing our experiences! My Mother always told me "It takes a village to raise a child" and add hemophilia to the mix and it might take a city!

6 comments:

Lori said...

We are so happy to have you Suzanne! Weolcome!

Lori said...
This comment has been removed by the author.
tham1010 said...

It is great how you accept it. I am 35 years old man with Hemophilia. I live in Egypt where there is no dried factor. We take blood and cryo to stop our bleed. I tested factor for the first time 8 years ago through a donation. Now I can tell you that, As long as you have this factor you will never feel like you have a child with Hemophilia. I wish I had been an American to get these 1000.000 IUs to stop my bleed for years. I would not bleed much and I would saved most of my joints which are totally stiff now.

Cheryl said...

Congratulations on your new blog outlet, Suzanne! I can tell all of you moms out there that Suzanne will not only be an inspiration to Hemophilia parents but she is also an inspiration to all parents. I look forward to reading your posts!

Mom of 4 said...

Hi Suzanne, and welcome! That is such great news about the "short lived" inhibitor! What a scarey time that must have been for you and your family. I know for us when my son was diagnosed with an inhibitor it nearly took his life...but so thankful that we still have him these nearly 10 years later. (He just turned 10 this spring...the inhibitor was found at 7 months of age)

We werent so lucky...his immune tolerance therapy took a little more than 5 years! After 2 we just started to see small improvement so my HTC doctor decided to press on. And I am so glad we did. It was an exhausting therapy but finally it paid off. My son is still on 3 times per week but that is like heaven compared to where we were.

That would be oh so wonderful to get to 2 days. Blessings to you and your family!

DeAnn said...

Hi Suzanne! It's so great to hear about your son and how he's doing. I look forward to hearing more from you.
DeAnn