Step Out for Bleeding Disorders

Today was the first annual walk for the Hemophilia Foundation of Minnesota and Dakotas. There was a great turn out! It was so nice to see so many familiar faces and meet new families! A wonderful time was had by all as money was being raised for a great cause!

Have any of you attended a walk?
Lori

First Gene Therapy in Hemophilia Successful in a Mouse

This is the best news I've ever heard! Thank you, Lord. Just wanted to share.


http://www.pcworld.com/article/231326/living_mouse_receives_the_first_genome_therapy_cures_hemophilia.html

Wisconsin Bleeding Disorders Conference

Good Morning!

I am in Wisconsin for their annual meeting at the Kalahari resort. Looking forward to seeing many familiar faces as well as meeting new!

Make it a great day!
Lori

Baseball ....Hotdogs.....Summer

Nothing kicks off summer better than baseball, hotdogs and popcorn at the ball park. Looking forward to a River Dogs game June 23rd in Charleston, South Carolina! If your close or willing to drive we will have a group going with great Mom 2 Mom discussions and watching baseball with our families.

Hope to see some of you there or meet some new Moms to welcome to the Hemophilia family!

Hope to see you then!
Suzanne

The Illinois Family Education Weekend is this weekend! Wo is planning on attending? I will be there! I am looking forward to seeing many familiar faces as well as making new friends. See you Saturday!

Lori

Happy Mothers Day

Good Morning, We are getting ready for the tea in the Greater Portland, Oregon Hope to see everyone there

April - Volunteer Month

This is the month were we recognize all you volunteer out there, for all your hard work

Thanks everyone for taking a moment to share your self with others and making thier lives better

Rhonda

Up Coming Events - Mom to Moms Portland, Oregon

Hemophilia Moms- Special Mom2Mom event Saturday May 7, 2011 2:00 pm
Vancouver, Wa (greater Portland, Oregon)
The Grant House
In honor of you this mother's day enjoy this unique chance to take time for yourself, relax, enjoy meeting other parents, and relax.

Hope all you Moms, Grandmothers, and Wife's can come join up on this special day

I will be there talking about challenges and achievements as a parent of a Hemophilia Child

Appleton, Wisconsin Moms

I will be traveling to Appleton Wisconsin on Tuesday March 29 to speak at a Moms dinner. Looking forward to seeing all the moms!

Lori

Spring Break!

My son's home for the week, for spring break. Thank God!

Though Vohn's 18 and self-infusing, still, can't stop worrying about him. What we go through as parents daily. Sigh... Sometimes, I'm happy for his independence, yet fear it the same time. I guess getting over the fear is never an option for all of us, or is it just me? He's home, he's safe. I guess for me, that's all that matters.

Enjoy everyone, springs here.

To Port Again or Not

We have had such a hard time finding veins in my 16 year old. He had his port removed about 5 years ago. However, his veins lately have not been cooperating at all! Of course this has become very stressful! My son has now decided he would like to have another port placed. We stand behind whatever decission he makes.

I am wondering if there are other families out there that have made the decission to place another port years after having one removed.

I hope you all are enjoying the begining of spring!
Lori

IV Iron

My 16 year old has been horribly anemic the majority of his life. Taking oral iron makes him so sick to his stomach. We have now gotten to the point where his hemoglobin is 9.1 and his red cells are sooo very small. His doctor felt that at this point the only option would be to start him on IV iron. This is done over 10 infusions given 3 times a week. He has had 4 infusions now and is so sick! He is taking Zofran several times a day. This last infusion they even tried giving him the Zofran by IV before hand. That did not help. It is very hard to watch your child suffer no matter what the age is. In the end I know it is what is best for him. I feel so bad for him as he not only feels so crummy but is having to miss a lot of school.

I am wondering if anyone has had any experience with IV iron. Do you have any ideas?

Hope you all are enjoying the promise of spring!
Lori

Port vs Veins

Well, the big day in my 10 year old sons life has finally arrived! He has his surgery scheduled to have his port removed. For 10 years I have been telling him that when he was old enough and mature enough to learn to self infuse using his veins, we would have the port taken out. He has asked to go to different summer camps, to his cousins house out of state ALONE with out Mom, weekend trips with friends and family and Mom has to go because Mom knows how to infuse or he has to pass on the trip because he can't go by himself.

About a month ago he contracted a bacterial infection in his port which went into the bloodstream. He was a very sick little boy. Thru 4 days in the hospital, IV antibiotics for 2 weeks, no school, very limited and restricted physical activity and his doctors saying it was time to get the port OUT, he learned to self infuse. Motivation is a wonderful thing.....he got the vein the first try and we are on our 6th successful self infusion. Mom supervises now. It is very liberating for him.

My question to you Mom's, how did you deal with the surgery of getting the port taken out. I am nervous about that. I am nervous that my security blanket (the port) is being removed. Easy access in an emergency. I have met some great Mom's on the west coast and they have never used a port to access there child as they have always used the veins. I feel selfish but worry about the longevity of his veins for the rest of his life.

I would love for any insight you could give!
Suzanne

An Open Letter To A New Hemom... Tatyana

Hi Tatyana,

No need to thank us. We thank you for finding us and we are so grateful to have made a difference in your life. 

I guess, I'll start by saying, we all had the same fears when we first came about the news that our precious children are affected by the condition... Hemophilia. 

For years, I've tried to find answers too. Tried so hard to get understanding for it. It took me a while, nevertheless, worth every effort. Through the help of my son's medical team, treatment centers, other Hemoms, volunteers and the entire hemophilia community, our family was able to survive the nightmare. I always thank God for that! I always thank Him for guiding us in our way through our darkest moments.

My son now is in college. He was diagnosed with severe Hemophilia A at age seven. Currently a 3x National champion in golf, living a normal life through prophylaxis treatment of his meds, Helixate FS. Never better... We are so proud of him!!!

We Hemoms are here for you. We are here for each other. Feel free to ask questions and each one will be able to help guide you through your journey, as they have for mine. We have a website that you can always visit as well with our stories, at www.hemophiliamoms.com. I'm sure you'll find the site not just informative, but also full of resources. I guarantee you that it will give you, not only peace of mind and assurance, but also the greatest gift you can possibly imagine... Hope.

Take care,
Jenny

Helitrax

Finally, our much awaited mobile Helitrax (for users of Helixate FS) application is now available for my son and our family to use!!! Yayyyy!!!

I've been requesting this for the longest time, but since it wasn't available through my son's old treatment center, he never got one. I'm so glad to have it now available for us. His new doctor and treatment center is using it too. It worked out perfectly, I'm so excited!

Finished my training today too using the device and application. It's highly recommended if you don't have it. They made it so user-friendly. It is a very useful tool for the hemophilia community. And since my son now is in college, this is one way for us to keep track of his infusions without getting on his case all the time. You know how some teenagers are, they just doesn't wanna be asked.

I will definitely enjoy it with my son this weekend, by practicing on how to use it.

Good ways to find veins

I was wanting to find out as parents at home some way to find good veins to infuse in. I've tried many, but someone may have a way that may work better for me. I've tried a heating pad, water and cream. So far it's not helping alot.
Thanks,
DeAnn

Happy New Year!

I hope this finds you all healthy and bleed free!

The beginning of a new year can be stressful time when it comes to insurance. I encourage you to place a call to your insurance company and check to see if anything with your benifits has changed. That way hopefully you will avoid any surprises. Your Hemophilia Treatment Center is a great resource for you as well.

Enjoy 2011!
Lori

Holiday Travel

We are all busy running around making sure we are prepared for the Christmas season. For some of us that means traveling to others homes. When making your list of items to pack don't forget your factor needs! Make sure you back a little survival kit for bleeding. Here are a few ideas of items to include: bandaids, gauze, instant ice packs, coban, factor, factor supplies and whatever items make dealing with a bleeding issue easier in your family.

May you all have a safe and bleed free holiday!
Lori

Elbows and Surgery

We have a mom who is looking for families that have any experience with synovitis surgery in the elbow. Please share your experiences.

My son had elbow surgery in March do to arthritis and to remove a piece of matter in the joint. This elbow had been a target joint for him and became painful for him. He would experience times where the elbow would "lock up". I know he is happy that he had the surgery. The pain after surgery was so much less than the pain he had been dealing with every day. We were very pleased with his recovery.

I encourage you to talk to your HTC. They are a wonderful resource for you!

Lori

Proud Momma Moment!

Wow, Myrtle Beach, SC was beautiful on Friday Dec. 10th which was the opening of our SC Hemophilia Chapters annual Christmas Education Symposium. We had some fabulous speakers and break out sessions. My son looks forward to this event every year. He gets to spend a weekend with other children who have the same disorder and it gives him a chance to form life time relationships with those children. At this event, we were offered a chance to attend a new summer camp here in SC this year. The closest camp to us with a bleeding disorders week is 4 hours away. I think all the kids are getting very excited to have the opportunity to spend another week together. And I think my son finally got what I have been telling him since he was born......As I was hovering over him and his activities at the pool he told me "Mom, this is the way the Good Lord made me and I have to learn to deal with it. Let me be with my buddies and have some fun!" I had to back off....let go (which about killed me) and he had the time of his life, knew his limits and got to feel normal. It was a proud Momma moment.
Happy Holidays to Everyone! God bless. Suzanne