Kids will be Kids

Good Morning everyone,
My son wanted to take a last dip in the river Wednesday Night before dinner and packing for Vacation. We live close to the river, he jumped in his normal spot that him and his cousins call thier own and something happened, he hit a big rock. Some one had pushed a big rock into the jumping spot and he hit it with his left foot. Breaking it in 4 places at the ankle, Well guess what that ment, a trip to the ER exrays and 5 hours of wait time. they said we could still go on Vacation, but we were going to fly in 4 hours for 6 hours plus to a Ranch of all fun outdoor things and he was in a boot, crutches and wheelchair not mention the Meds involved. the trip has been postponed and we are having surgery next week, in the mean time we are infusing twice a day and trying to keep a 15 year old some what at bay, he is still very active, he went to the National Motor Cross Races, went to the river, went shopping and out to dinner. I have to admire my Son he is taking this small set back with a great attitude, I will keep you posted on the out come

National Hemophilia Foundation Annual Meeting

We just signed up for NHF's annual meeting in October
It will be held in San Fransciso, Ca
If you are planning to go visit the website of NHF and there is information and registration info available

I hope to see you there

Camp

How many of you are sending your child to a bleeding disorder camp? We are packing up today to head to the northern woods of Minnesota. My boys will be attending hemophilia camp at Courage North in a week. We like to go up early with our RV and spend some time with the boys before hand.

I would love to hear from those of who have kids going to camp, already been to camp, or deciding about camp!

Hope you all are enjoying the summer!
Lori

We are Family

Hello to you all. It seems we all have busy schedules and all have something in common. Everyday we have a challenge, but we survive. We all need eachother and having this blog site is the perfect thing. This isn't for us to write stories, but for us to communicate and just ask questions. It's a good feeling to talk to someone that understands what you're going through. Let's all use this website to do this. I'm sure there's days we can use some encouragement. Remember, everyday is a new day and we will survive, we are family.
Hope to hear from you,
DeAnn

School is out for most

Yea School is out for the summer
This is the time of year your kids go with friends and family with out you, make sure they have thier medical alert current and take thier factor just in case

also, this is the time of year that you work out with the school all the details for Individual learning programs and or federal forms

enjoy

Happy Memorial Day!

I hope everyone is enjoying this day! I know many are participating in outdoor activities....games, cookouts, boating, camping...the list goes on. Remember to have fun....let your kids be kids....make sure they have been infused so all the fun does not come to a hault by a bleed! However, even with good planning bleeds do happen. Its ok! That is just one way we are all connected!

Here is to a hospital free day!

Hemophilia Factor 10 deficiant

I meet a family that has factor 10 deficiant Hemophilia bleeding disorder, does anyone have some advise for these young ladies both Teenagers, they are having quite the problems, so if there is someone out there that can help them please give them some words of encouragement and or share a story if you have Factor 10

have a great day

Hemophilia and Broken Bones

Well it finally happened...my soon to be 9 year old son with severe hemophilia broke a bone! Yikes!

While just playing around with some friends my son was going to catch a ball, tripped and fell, then a friend tripped over him and landed on his hand. I was peacefully watching two of my daughters play a T-Ball game when he reported to me that he hurt his thumb. It was pretty swollen and when we moved it he had the classic symptoms of a joint bleed. Upon arriving home we immediately infused him and iced the thumb. Since it was late I sent him to bed figuring I would call the HTC in the morning for a dosing schedule.

In the morning my son woke up crying and in pain...the thumb looking even worse. I was getting a really bad feeling about the whole thing so called the Pediatricians office to try to fit him in for an x-ray. I am sooooo thankful for a wonderful doctor. When I told them what had happened they said "How soon can you get here?" I packed up the kids and off we went. The doctor took one look at his thumb and sent us directly to an orthopedist. We were able to get an appointment within one hour. So off we were again to another office. After the x-rays were taken and read...the bad news was broken to us. "Yes, it is fractured," stated the doctor, "No baseball for you for about 4 to 6 weeks." My son burst into tears, he loves playing on his little league team. But the biggest disappointment was that only 4 days from then was his 9th birthday and he had been so excited all year because there was a game scheduled on his birthday! He had talked about it for two months. Now he could not play. Instead he was put in a splint and told to take it easy.

Upon arriving home I called the HTC for a dosing schedule. Since my son has a low half life we had to treat twice a day for a few days, then every day for several days after that. He was not really happy about it, but it had to be done. What a frustrating situation for a young active boy.

But not all of this is such a bad thing. What I do want to share with you is that a wonderful character building opportunity was given to my son. Yes, I was disappointed for him, and yes I missed seeing him play too. But the remarkable attitude he showed during this time brought me to tears. He wanted to go to his game that very evening. When we arrived home he got on his ball uniform and asked if he could sit with the team. I was so proud of him for having such a team spirit. But what I saw during the game was even more amazing. He did not sit on the bench feeling sorry for himself...instead he was jumping up and down cheering on his team and encouraging them every step of the way. I was encouraged to think that even when things don't turn out as we plan, there is usually a gold nugget just waiting to be found. So when things don't seem so good...just look around....look hard....you may just find a gold nugget.

Many Blessings!

National Hemophilia Foundation annual conference

October 29, 30 and 31st in San Francisco, Ca
visit NHF.org for scholarship information and registration

This is a great source of information and interaction with others with hemophilia

ohh and a whole lot of fun

hope to see you there

Happy Mothers Day

Mom to parents event Portand, Oregon

Saturday May 9th
Portland, Oregon
dinner on the willamette

everyone is welcome
RSPV 888-508-6978

Summer, time for bruises

I hope all of you are doing well. I'm sure like me you're excited the nice weather is here. My two boys stay bruised up during the summer and probably tend to have a few more bleeds. Lets all try to keep them infused on schedule and have a great summer.
DeAnn

Utica, Illinois

I will be traveling to Utica, Illinois on Friday to attend their Education Weekend. I am hoping to see many of you from that area! If you are attending this meeting be sure to stop and say Hi!

Lori

Ready for Baseball?

The nice weather has finnaly come to Minnesota! With it also comes baseball season for my younger two boys. Somedays I feel my kids have forgotten they have hemophilia! My kids know that they must do factor before being able to play baseball. Every year we seem to have to have the same talk about making sure this has been taken care of. They do understand why they need it......it is just teenagers really hate another "chore"!

So when Monday afternoon came around it was time to head off to the field. Baseball uniform...check, cleats.....check, bat, glove, batting helmet.....check, catchers gear....check, water....check, factor......oh, I forgot to do it....I'll just do it when we get home. To which I said, "No! You will do it before ball or you will not be going." Like I said this is not something new to them. So why is it every year we go through this same process?

I'd love to hear from all of you! Let me know how your spring is going. Are there any topics you would like to talk about?

Enjoy the warm weather!
Lori

Spring is Sprung

I do not know about you but the nice weather brings more outside activity, brings more bumps and bruises so plan ahead be prepared and do not forget to take your factor with you when you travel

Learning to drive--growing up

My son just turned 15 years old. He just enrolled in driver's ed and has her learners permit.
Did not think about it much until he drove off with the driver's ed teacher. What if he crashes during his lesson, do we notify the instructor of his hemophilia. He wears his medial alert bracelet. So I came to the conclusion. I have to let him grow up and hope that if something happens during drivers ed, they read his bracelet. It is hard to be the mom sometimes.
To all you Moms have a good day.

Tu Familia y La Hemofilia

Bienvenidos al primer “blog” de Hemophilia Moms en español. Mi esposo y yo tenemos una hija de 17 años y nuestro hijo recientemente cumplió 13 años de edad y tiene deficiencia de <1% en factor VIII - Hemofilia A severa.

La hemofilia nos llegó de manera inesperada ya que no existe un historial médico en nuestra familia. Eramos una familia estable y feliz con expectativas normales para nuestros hijos en los fundamentos de la vida como la educación, la interacción social y actividades extracurriculares como los deportes. Cuando nuestro hijo nació y fue diagnosticado con hemofilia, fuimos afectados tanto emocionalmente como económicamente al yo dejar de trabajar fuera de mi casa para cuidar mi bebé.

Como madre, pasé por varias etapas emocionales comenzando con la negación de que mi bebé pudiera tener esta condición. Luego me sentí culpable de haberle trasmitido la hemofilia a mi hijo porque pensé que yo era portadora. Resulta que me hicieron unas pruebas las cuales determinaron que no soy portadora y la hemofilia nos llegó como una mutación espontánea. Finalmente, llegó la aceptación la cual nos abrió un mundo de oportunidades.

Los primeros años con la hemofilia fueron retantes y de aprender cómo manejar la condición. La educación sobre la condición fue la herramienta principal para superar los contratiempos y tomar control sobre nuestras vidas al no permitir que la hemofilia nos controlara la vida familiar.

Mi hijo es un joven como cualquier otro – sociable y activo. Sorprendentemente, la hemofilia nos ha fortalecido como familia y ha contribuido a convertirnos en mejores seres humanos. Hemos sido motivados a ser proactivos al participar en programas que promueven una mejor calidad de vida para familias afectadas por la hemofilia.

Me encantaría leer sus comentarios y compartir nuestras experiencias. Hasta pronto …

Boys and Their Toys

I was sitting this afternoon enjoying the fact that we had successfully made it through not only Christmas but New Years without a trip to the ER. Those thoughts were interupted by the sound of my 12 year olds excited voice anouncing the fact that his oldest brother just pulled in the driveway with a new snowmobile in tow! Now don't get me wrong......I am all for my three sons with severe hemophilia to be boys first! However how much grey hair do they think their mother needs! I love to go and see my hairstylist but after finding out she and her husband were building a new house I began to wonder how much of that house my grey hair was financing!

It is hard sometimes to let your kids go and be boys. Trust me I know! After the family went outside and did the proper oohhhs and aahhhs he says he is going out snowmobiling with his friends. Now mind you he is 24 years old stands about 6 foot ~ 250 pounds and I find myself saying....."Did you do factor? Do you have factor with you? Are you sure this is a good idea?" With a smile and a laugh and a side hug to me he says...."Yes Mom! I'll be fine! Don't worry so much! I'll try to keep it under 100mph" Great! So I will spend the next several hours of daylight waiting for the phone to ring.....hopefully hearing how much fun he had! After all boys will be boys!

2009

The New Year is fast approaching. Do you and your family make new years resolutions? Maybe this would be a good time to commit to making life with a bleeding disorder a bit easier.

Perhaps 2009 will be the year your child or you learn home/self infusion. Maybe you have a older child that is about to venture out on his/her own. This would be a good time to start or continue teaching and guiding them about their insurance, making appointments, calling to request a factor order, the list is long! If you are a newly diagnosed person/family this may be a year of understanding and knowing that it is ok to add to your family!

I encourage you to take a few moments to reflect on the year coming to a close. I know for me having 3 sons with severe hemophilia we had our share of bumps! Some felt like mountains while we were going over them! We became stronger and closer. For the most part 2008 was a successful year! My sons all learned a litte bit more about themselves and their hemophilia as did my husband and I. We all rallied together when a severe bleed seamed more than we could take. As my eldest lay in a hospital bed post hip surgery in horrible pain I struggled to find possitive thoughts and feelings. It is easy to get caught up in how bad a situation is and have your thoughts be negative. I have found looking for the possitive makes a situation a bit more managable. Yes each of my boys spent time in the hospital this year.....some more than others....sometimes more than one in the hospital at a time. I made sure I reminded myself we are lucking to have a great medical facility to care for our boys and factor to help control bleeding. There are many in the world that do not have this luxury.

As 2008 nears an end and 2009 begins, sit down as a family and reflect on what you have learned what you have accomplished. Make a list of what you would like to do to make life with hemophilia just a bit easier in 2009. We can not always control a situation but we can always control how we handle it! So take a deep breath......you as parents are doing a great job! Be proud of yourselves!

May 2009 bring you much peace, happiness, and good health!
Cheers!
Lori

Ice and the Winter

Hello to you all. I hope you're all ready for the holidays. This is really a busy time for us all. I just thought I would share alittle story. If your son is anything like my 6 year old, he wants to play out in the snow. We had an ice storm last week and he thought it was cool to slide down the drive way to his bus. He made it all the way down without falling. Later that night we went to get into the car and he thought he would try it again. This time he fell and hit his face. Yes he had a knot and a cut on his forehead and check. He's ok now, but I believe he learned the hard way that ice is dangerous. His sister thought she could play on it because she doesn't have hemophilia, but we explained it's dangerous for anyone. I hope to hear from someone out there. Stay safe and Merry Christmas to all. Enjoy every day.
DeAnn