JNC Dallas

Today is the day!!! I am in Dallas with 95 kids with a bleeding disorder who will compete today in Baseball and Golf!! Let me know if you or your child is here!! Lori

Junior National Championship ~ Dallas

I am getting so excited to see all the families at the 2012 Junior National Championship in Dallas the weekend of September 21! These events warm my heart. I love seeing all the kids and parents interact. They are finally in a situation where having a bleeding disorder is the norm! Let me know if you and your family will be attending the JNC in Dallas! Lori

Back To School

It is hard to believe it is that time of year again. Time to get the kids ready for back to school. When you have kids with a bleeding disorder there are a few more things that need to be done. Here a just a few ideas of what you may need to do to prepare for the new school year: *Create or update a 504 plan at the school. *Get the medication forms signed my your doctor to have Factor at school. *Set up a time to go in and talk to your childs teacher and the supporting staff. *Meet with your childs Guidance Counselor to see what information they may need. *Put together a kit for the health office with everything needed for a couple infusions. These are just a few ideas. There are many many more. Please share your tips for back to school. Lori

Moms

I hope you all had avery nice Mother's Day! I came across something that I wanted to share with you. Let me know what you think. Lori SPECIAL NEEDS MOMS A LOOK INSIDE You may think us “special moms” have it pretty rough. We have no choice. We just manage life when things get really tough. We’ve made it through the days We thought we’d never make it through. We’ve even impressed our own selves with all that we can do. We’ve gained patience beyond measure, Love we never dreamed of giving. We worry about the future But know this “special” life’s worth living. We have bad days and hurt sometimes, But we hold our heads up high. We feel joy and pride and thankfulness more often than we cry. For our kids, we aren’t just supermoms. No, we do so much more. We are cheerleaders, nurses and therapists Who don’t walk out the door. We handle rude remarks and unkind stares With dignity and grace. Even though the pain they bring cannot be erased. Therapies and treatment routes are a lot for us to digest. We don’t know what the future holds but give our kids our best. None of us can be replaced, So we don’t get many breaks. It wears us out, but to help our kids, We’ll do whatever it takes. We are selfless, not by choice, you see. Our kids just have more needs. We’re not out to change the world, But want to plant some seeds. We want our kids accepted. That really is our aim. When we look at them we just see kids. We hope you’ll do the same. April Vernon

Hemophilia of Iowa

I am in West Des Moines today for Iowa's Education Weekend. I enjoy seeing so many familiar faces and meeting new families. Stop by the CSL booth and say "Hi" and get your Mom2Mom pin!

Lori

Back to School - Ugh or Yippee!

Well, it is that time of year again when most of us send our precious babies back to school...or should I say back to the great unknown! I have chatted with a few friends recently and they are so happy to "get them out of the house". Many parents find summers very hectic and fun but also frustrating sometimes. With the kids home they simply do not get a lot of things done that maybe they were planning to do. Sometimes the unscheduled chaos can send even the most calm and collected mom into "orbit." If you have more than one child you can probably identify with that. They all want to do something different and they all want you to do it with them! Either that or they are bickering with each other, picking on each other, whining, or making a complete mess of your freshly cleaned house. Ahhh the joys of motherhood!

Are you looking forward to school starting again? Just waiting for those free mornings to sip coffee on the patio, catch up with friends, read that book you have been meaning to, or take a leisurely shopping trip? Or are you in the other camp of dread and worry because school has started? Do you jump every time the phone rings thinking it is the school nurse calling to summon you because your child is bleeding? Does fear grip you until your child arrives home and you know everything is alright? Do you worry that your child will not understand what is being taught, get bad grades, be rejected by friends, be teased, harassed, or worst of all injured by some bully? These are very real things that we face as moms. Even moms of children without bleeding disorders have many worries. But we have the added stress of the "what if they are bleeding", "what if I can't get there right away", "who will help my child", and the list of "what ifs" goes on and on.

Many parents of children with bleeding disorders have a "school plan" in place to help aleviate some of these worries. The principal, the teacher, classroom aids, the school nurse (if there is one), and the playground aids need to be made aware of your child's situation. Emergency numbers need to be provided so they can contact you, your doctor, or your Hemotologist should the need arise. Your Hemotologist would be a great resource for you to employ in putting together a plan that is right for you and for your child's school. You definately want the plan to be simple and something that the school will actually be able to carry out at the moment the need arises.

Maybe you have a plan or a protocol in place that is working well for you. If you don't mind sharing, I would love to hear about it! There may be others that can benefit from your well thought out school plan. Or, maybe you have some great ideas or thoughts to share about how you deal with the stress of sending your child back to school...I know I can always use advise on how to lower my stress level! Thanks for sharing!

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