I spoke too soon......

Well, after my initial "hello" blog, my son came to me complaining about one of his ankles thats been bothering him for awhile. About a month ago, in one of his little league baseball games, he twisted his ankle but finished the game and he said it just felt sore. He had his infusion the same day as the game so I didn't think much about it. About a week later during another game, he said it just started hurting. Didn't do anything inparticular to make it start hurting. He's been complaining on and off for about a month now. For the first time the ankle looks bruised but doesn't hurt constantly. He was at a baseball camp this week and it got progressivly more sore I guess from use. So....is this going to be a target joint? We are going to piggy back with and extra infusion this week to see if we can get it cleared up. But it is my first experience with a joint hurting him and I dont think it is a bleed. Or could it be? Guess the Mom in me wants an answer. Just thought I'd share my experience for the week. Suzanne

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!

Boys and Baseball

My husband and I have worked very hard at making sure hemophilia is just a part of who our boys are and not what defines them! Baseball is a big part of our youngest sons life. He had a game last night against a team that is their biggest compitition. Winning this game would mean his team would clinch the first place seat.

Brady had had a minor bleed going on over the weekend so we were not sure how he would be able to perform. He plays third base and catcher. He started the game out at third base, which is where he likes it the best. During the 4th inning our catcher took a hard tag in the abdomen for the last out. He was struggling catching so next thing I know Brady is suited up and replaced our catcher so he could rest. That inning was Brady's inning to rest. Makes my heart warm knowing he doesn't "use" his hemophilia!

It was the bottom of the 9th. The score was 9-7...we were ahead. The other team was up to bat. Two outs. Bases loaded. Brady is back playing third base. Crack of the bat...ball headed to third base area....Brady scoops it up and makes an amazing throw to first base for the final out! Amazing!

I just had to share! I am so proud of my boys! Who they are in part is because of their hemophilia. Brady knew what it was like to just need a break and was willing to forgo his resting time to allow his teammate to rest.

Lori

The Elbow

Last Friday four little words were spoken to me that made my heart stop...."Mom, my elbow hurts."

As many of you know my son, Cody, had elbow surgery the begining of March. His right elbow had been a target joint for him when he was younger. It had been giving him trouble so the doctors decided it was time to fix it surgicaly. The surgery went very well and Cody recovered very well.

As you have probaly guessed by now Cody had his first bleed in that elbow since his surgery. Even after all these years of dealing with hemophilia (26 years to be exact) it was hard for us to determine if this was a bleed or something realted to the surgery. We infused him every 12 hours for a few days and the elbow seems to be better.

Have any of you had to deal with something like this?

Lori

From all us Moms to All you Dads

Happy Fathers Day .....................
I hope you really enjoy your day today
Being a Dad is so special and important
My hats are off to all of you
Happy Fathers Day