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

Spam - on comments

I am trying to get this blocked, sorry about the inconvience of the spam. Thanks for participating on our blog site. I hope that everyone enjoyes each other and shares for everyone to have a better life

happy holidays

Happy Thanksgiving

I hope everyone enjoyed your families during this feastive day
Rhonda

Dreams and Set Backs

My two teenage sons bowl on their High School bowling team. On Sunday we were traveling about an hour and a half away for a big State Tournament. Needless to say they were both very excited! When Cody my 15 year old woke up Sunday morning he was not able to straighten his right arm. He has had some issues with this elbow more than likely from past bleeds. He was certain it was not a bleed but he did give himself factor. I'm sure you can imagine how difficult it is to bowl when you can not straighten your arm. Cody put forth his best effort and really bowled quiet well. His team was supportive of him and his efforts! I watch for just about 5 hours as my son struggled to bowl. I was filled with mixed emotions! Part of me was so proud of him that he continued with his passion yet another part of me wanted to run down and get him and take him home.

We all have times when we have to have faith in our kids and let them make the best choices for themselves. It has always been important to me to make sure my kids understand their hemophilia and their limitations. To understand when to take a break and when to push forward. Sometimes that line is not so clear.

I will leave you with a line I always say to my kids when they leave the house. It applies to so much more than their hemophilia!

Make good choices!

Mysteries

Last week we discovered that my 15 year old had a very low hemoglobin and the size of his red blood cells was very small as well. Our hemotologist said that since he has not had any prolonged bleeds that we are aware of we need to investigate. He has had a CT scan of his abdomen which was normal. Today we are seeing a GI doctor to dig a bit deeper. The thought is that he has some slow bleeding .... maybe in his GI....that is just not enough to give any signs but enough that over time has lowered his hemoglobin.

The "battle of the hemoglobin" is one I'm sure we have all dealt with. If you feel comfortable, please share your stories. Maybe something someone else has been through will give us ideas of what to look for in my son.

Have a fantastic day!

Lori

Annual NHF Meeting Sanfranciso, Ca October 2009

Hi everyone,

I am so excited that this month is NHF, we meet so many people, make freinds for life and learn about hemophilia. I hope to see some of you there, have a safe trip

National Hemophilia Foundation Annual Meeting

San Francisco California October 2009
For those of you that are attending NFH make sure you stop by and visit the CSL Booth 100
See all of you in San Francisco
Rhonda

good morning golfers and baseball players

it is beautifull here in Roseville California today at the JNC
Good Luck everyone one

JNC SACRAMENTO CALIFORNIA

Welcome everyone that is attending the JNC in Sacramento, Ca on Sunday
It is going to be a gorgeous day with lots of fun, friends and excitement

broken Ankle in 4 places

Good Morning everyone, today is a big day at our house, we are going to the doctor and get the official word that my son can walk on his ankle again He broke it July 22nd, had surgery and spend the summer in a boot, wheelchair and crutches. I am just so thankful that we are able to suffer these minor problems in life as they are Minor. With modern technology one being factor he only spend one day in the hospital and they feel that there will not be any permanent damage
thanks for all your prayers

Nose bleeds

Hello, I'm just curious to see how many other moms out there deal with alot of nose bleeds with their children that have hemophilia. My children have been in school 5 weeks already because they're in year round school. The first week of school I was called three times for a nose bleed. My son has had them since he was a baby. It seems they don't bleed real heavy all the time. Which is good, but it seems his nose is like a faucet. It's like you turn it on and then off. It bleeds for no reason. You all know that we go through so many things with our children, so this isn't really a big deal, but I feel bad for him in school when this happens. I'ts always good to hear what other mothers experience. Have a blessed day, because everyday is a blessing.

Hemophilia of Iowa

Tomorrow morning I will be headed to Des Moines, Iowa for their annual meeting. I am looking forward to seeing old friends and meeting new ones! If you are attending this meeting, please stop by the CSL Behring booth and say HI!

Annual meetings are such a great way to interact with other families that deal with the same thing as you....bleeding disorders. There is always a wealth of information there! I do hope you all take advatage of your local annual meeting. Don't for get the NHF annual meeting in San Fransico the end of October!

Safe travels to all!
Lori