Happy 4th of July!

I hope everyone has a very safe, fun and ER free 4th of July weekend! If your traveling....remember your factor and supplies.

Enjoy!
Lori

JNC (Junior National Championship)

It is that time of year when the JNC's (Junior National Championship) take place! This past Saturday the first JNC of the year was held in Minnesota. For those of you who are not familiar with them it is a compition in golf and baseball for kids 7-18 years of age with a bleeding disorder.

I attended the JNC with my family. Cody played golf and Brady played baseball. It was a beautiful day! I am proud to say that my son Brady took third place in baseball and both of my sons were awarded the Good Sportsmanship award!

Please check our Hemophilia Moms website (www.hemophiliamoms.com) for more information on future JNC's. There will be 4 more this year!

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

Expired Factor Products

One parent asked me what can they do with their expired factor products that they don't want to throw away. Also how far back of it, being expired, for it still be safe for use or be donated. I told them that there are organizations that takes them. I also advised them to talk to their Hemophilia Treatment Center or talk to their doctor for more information. I just wanted to bring up the topic for possible suggestions or discussion.

Spanish blogging First Sunday of everymonth

Hi everyone, our very own bi-lingual mom is going to blog the first Sunday of everymonth,
Let us know if you enjoy the spanish blog mark your calendars

Adulthood and Going to College

These past few months, I've been contemplating about my son being an adult now and him going off to college. I guess it's every parent's feelings. The fear of letting go is so much already, yet the intensity is even tripling due to the fact that he has severe hemophilia A. I have so much questions... Can he manage, now that he's separating and living on his own? Will he be alright? Will he infuse in time and as directed or not? What if he gets hurt and we're far away? Will he be OK with his future college peers? Can he survive? I wonder...

As parents, how do you cope? Thoughts?

504 plan or IEP * reminder*

The end of the school year is here, so those of you that have 504 plans or/and IEP need to review them for next year, those of you that do not have these plans in place and are thinking about them this is a good time to start getting them worked out for the next school year.

Junior National Championship St Paul Minnesota

June 26th
Minneapolis/st Paul Minnesota
Hosted by Hemophilia Foundation of Minnesota/Dakotas
Children with bleeding disorders and their families are invited to participate in regional golf and baseball competitions
to sign up visit WWW.giginc.com

Lori our Hemophilia Mom will be speaking at this event please come out and the kids can play and you moms can visit

We hope to see you all there

Rhonda

Welcome Suzanne

We have a new hemophilia Mom her name is Suzanne, all you bloggers welcome her to our group
she has a son with hemophilia

Hi everyone

Summer is all most here

Your Child Has Hemophlia!

I will never forget the day those words were spoken to me! All three times!

I have three sons with severe hemophilia A. With no family history this was quite A shock to us! Our HTC provided us with a wealth of information. We also found wonderful resources at our local hemophilia chapter as well as the National Hemophilia Foundation. One thing that helped me was being able to talk to other moms who had kids with hemophilia. However 26 years ago that was a bit of a challenge! I am thrilled to be part of Hemophilia Moms so I can share my experiences with all of you!

I was so frustrated all those years ago when no one could answer a question that I felt was pretty straight forwar. " How big is a bruise before it is a bleed?" I always got the same answer..."you will know!" Now how was I going to know? I had never seen a "bleed"! I barely knew what hemophilia was! However, when my son had his first bleed....I knew it! When he had his first spontanious bleed....I knew! As mothers we need to trust ourselves. Take advatage of all the resources that are available! Twenty six years ago I would have loved to be able to talk to other moms in my shoes with the click of a mouse!

How did you feel when your son was diagnoised? How did you know your child had a bleed?

Make it a great day!
Lori

Happy 16

My son turned 16 this week, I am so proud of him. He has severe hemophilia and we have worked so hard at not allowing the hemophilia to run our lives. He has had a few knocks through the years, broken ankle and arm , a hit to the head, a bleed that lasted 6 weeks behind the knee, hemorrhaging Adonises, an elbow here and there, not to forget the mussel bleeds now and then.

He is walking with out a limp, 95%+ range of motion on all joints, a mended arm and no target joints.

He is getting his drivers license this week, spending weekends with friends even out of state and once in a snow cave. He rides dirt bikes, quads, snowmobiles and plays a full menue of sports. He has taken full controll of his inconvience and is powering on to be the best he can be.

What more can you ask for a well rounded kid, ready to take on the world

You new moms out there remember hemophilia is a small inconvience not a handicap
enjoy your children

Happy Birthday to my Alex

Seeking a freind to visit with

I have a family that has an older son in his 30th that has sever hemophilia. He also has some mental challenges and is unable to be on his own and take care of his hemophilia. I would like to find someone that understands these ups and downs and hook you up so you can visit, on line or telephone . If you are interested in making contact with his family please contact me at hemophilamoms@aol.com
thanks, Rhonda

Oh The Elbow

My 15 year old son with severe hemophilia learned this week he needs to have elbow surgery. His elbow was a target joint many years ago. There has been quiet a bit of stress trying to plan it.

Last night Cody was filled with stress trying to figure out a time for the surgery that would least affect his busy life of activities. I sat down with him to prioritize his list. I could see he was becoming more and more frustrated. As I hugged him I said isn't it wonderful we are having such a problem finding time in your activity schedule! He thought for sure I had lost my mind! I started telling him that kids his age 30 or 40 years ago would not have a problem with this at all because they couldn't be in all the activities he was in.

Sometimes it is hard to look on the bright side when we are frustrated. It is important to sit back and take a breath. It was amazing how much of Cody's frustration was lifted by that one sentence I spoke to him.

I would love to hear how some of you have handled situations like this!

Make it a great day!
Lori

Thank you!

Thank you to you all for your patients while we worked through our SPAM issues. We think we have out smarted the spamer....is that a word? LOL

We appreciate your comments!

Merry Christmas to everyone