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

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

Good Morning Rainy Salt Lake

Good Morning everyone, I am in Salt Lake today at the CSL Behring Junior National Championship, I am excited to meet all these Moms and families
Bring your rain coat and I will see you there

Salt Lake JNC

I will be at the Salt lake JNC Aug 15th
hope to see you there

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

Hemophilia Moms Breakfast Welcome

Good Morning Ladies,
Welcome to our second annual Moms Breakfast
Look out the window it is snowing

Thanks for coming

NHF~ Moms Brunch

Just wanted to blog before I left for the airport to go to Denver for NHF. All the Hemophilia Moms are looking forward to seeing many of you at the meeting! I wanted to let you all know about the Hem Mom brunch we are having. It will be Friday morning at 8:00 in the CSL Hospitality Suite. Be sure to ask someone at the CSL Booth to find out the Suite number.

Safe travels to you all! See you in Denver!
Lori

Happy Halloween!

This is a day many look forward to. Some families enjoy decorating their house for others to enjoy. Others look forward to seeing all the children dressed up, ringing the doorbell and hearing trick or treat! For some families with children with a bleeding disorder it maybe a day of stress.

When my oldest was young and trick or treating it seemed like Halloween was a day he would always get a bleed. Either he would wake up with one or one would develope during the day or while trick or treating. We soon learned that Halloween was a day to infuse no matter what! It sure made the day easier!

I hope you all enjoy the day to whatever extent you desire! Infuse your little trick or treaters and enjoy!

Having more children after one is diagnoised with a bleeding disorder

I wanted to start this new blog after 2 Year Olds Mommy posted a comment. She will soon be having her second child and is wondering how others felt when they were in her shoes.

I have 3 sons all of who have severe hemophilia A. After our first son was born it did take a little bit for us to come to terms with everything that comes with a diagnoises of a bleeding disorder. We had no family history so I was lost! Each time I did go through some of the same feelings and fears. However I would have to say with each birth it was easier! I had a better understanding of hemophilia and how to handle it. I had found out before birth that my second and third sons had hemophilia. By the time I was waiting for the results of our third son I'd have to say I was more worried he did not have hemophilia. I did not want anything to be wrong with my child but hemophilia was now a norm in our family. I was worried I would not know how to parent a child that did not have hemophilia.

You have over a year under your belt with your sons diagnoises. Remember you have learned a lot! The biggest advise I can give you is to enjoy your new baby! Everything will fall into place for you and your family! We are always here for you ...to support you and to celebrate with you! Please keep us posted on your delivery!

Best of luck to you!
Lori

NHF...Are you ready?

Can you believe in less than 5 weeks NHF will be in full swing? If you are traveling to Denver for this wonderful meeting are you prepared? Remember to get your travel letter from your HTC so you will not have any problems bringing factor and supplies on board if you are flying. If you will be traveling by car it is a good idea to find out where the HTC's and hospitals are on your route.

Do any of you have some travel tips that have worked out for you? We would love to hear from you!!

Lori

Factor at School

Well school is well underway for the kids. Hopefully it has been a smooth start for you all!

My two youngest are in 7th and 8th grade this year. They both self infuse so we keep a dose of their factor at school should the need arise. This did take some time on my part to educate the school staff on what it was and why it was a good idea for the boys to have it at school. I am just wondering if any of you have had any problems getting your child's school to allow you to keep factor there. Maybe some of you would like to share your stories of how you have educated your child's school staff. There are so many ways to insure your child has a smooth year at school with his hemophilia not the main focus. Please share your ideas and experiences with us! We love to hear from you all!

Lori

Good Morning all you San Diego Baseball and Golfers

Welcome everyone
Katherine and Yolanda are visiting San Diego at the CSL JNC today
Please tell everyone good luck
Rhonda

New School New Nurse

My son is 14 and a freshman in High School
We have a new school nurse, which means we have to re-educate the educated
They had on his health plan to call 911 for a paper cut, this was a hard sell but I was able to convince them to allow us to pick him up in stead
No seriously they honestly felt that he was that much at risk , so spend the extra time to talk to them have your child show them how he infuses and so on
there are many sources out there for informtion or even in person inservice days with the school
your HTC, homecare and or yourself
remember knowlege is powerfull, share the wealth
others may want to share thier stories

Crazy Things

I have spent the week in and out of the ER and doctors office with my 14 year old. Cody has severe hemophilia A. Sunday he woke up with a very stiff neck that continued to get worse as the day went on. We did factor at home and contacted the hemotologist. We went into the ER to check for a neck bleed and to make sure all was ok with the airway. Things did not get better over the next few days so they ended up admitting him to the hospital. Cody's neck was causing him quite a bit of pain and his head was always off to his left side. Many tests and imaging were done. What we found shocked us all! He has a clot in his jugular vein. Yes, my son with severe hemophilia had all of this pain from a blood clot! And guess what the treatment is? Several weeks of blood thinners....but he has hemophilia and if there is one thing we have all been told over and over again is you do not give blood thinners. We are trying to give daily infusions of factor with his daily injection of blood thinner. I am wondering if any of you moms out there have experienced anything like this? I've been searching the internet for days without much luck so I thought I would reach out to all of you!

Looking forward to hearing from you all!
Lori

Broken bones

Hello to all. I was just curious to find out if any of you have experienced any broken bones with your child/children. Was there a bleed when it happened and how bad? I have not and hopefully won't experience this but, it's a question that I've wondered about and that's what blogging to eachother is all about.
Thank you,
DeAnn

Getting ready for School

Hi everyone,

School is just around the corner, for those of you with children in school, maybe you can share some of the things you do to get ready for the school year with the school staff

Hello Michigan

Lori and I are in Michigan today sharing the Hemophilia Moms's blog site. We would like to invite everyone to say hi to our new friends .

The Hemophilia Moms are made up of 8 Hemophilia moms across the United States. We have moms with grown children, college kids, High school students, Jr High as well as little ones.
We hope that you will join us in supporting each other and sharing experinces with other families.

Rhonda

who can be a hemophilia carrier?

Hemophilia is a genetic disorder and is usually carriers through the women
if you are a daughter of a man with hemophilia you will be a carrier
if you are a daughter of a women that is a carrier you have 50/50 chance of being a carrier

there also is mutation of the gene when it just shows up with no family history

would you like to share your experiences with others

How do you become a hemophilia carrier

Hemophilia is a genetic condition. This genetic condition is carried on the X chromosome in women. A women is a carrier when her father has hemophilia or when her mother is a carrier and she receives the X that has hemophilia. There are tests available to be tested if you think you may be a carrier, check with your doctor.

There also is mutation of the gene, that is when it shows up out of now where.

I know that some of you carriers out there may have many questions, and feelings that you might want to share.

Being in Charge

It comes a time that you need to allow your child to take control of the situation.
That is so hard. By the end of high school I want my children to be incharge of thier health
make doctor appointments, juggle scheudles, order thier factor and supplies. I want them to be confortable with making the decisions. So when the time comes and they are really incharage it will be old hat for them

Welcome

Good morning ladies, I am so pleased to see that we all could get together this morning and enjoy a Mom to Mom's event here in Portland, Oregon

Today the Hemophilia Moms is hosting a brunch on the river inviting moms to come and enjoy each others company and stories

I hope to see you blogging with us in the near future

Making infusion time less stressful

Hello to all you wonderful mothers. I have a 4 year old that has a port. I'm still having a very hard time infusing him. He's very scared of the needle for one thing and he won't lay still. My husband and I have to hold him down. He yells, "don't hurt me" with tears running down his face. Needless to say it's very stressful. He has a brother that's 6 and he watches him get his infusions with no problem. Does anyone have any good ideas to help make this less stressful for him and my husband and I.
Thank you,
DeAnn

Portland Moms

CSL is having a Mom to Mom event this Saturday July 12th , if you are interested please reply
Rhonda

Traveling Safe

We are thrilled to have so many of you join us in our chating and sharing information. That is the main reason we are here...to connect and share ideas, stories, and encouragement. Any time you have a new question or comment please feel free to add it so we can talk about it. Again welcome to all!

I just want to mention a few safe traveling tips in view of the upcomming Holiday. Many will be traveling for the 4th of July and celebrating. BBQ's, swimming, and summer fun are a part of many plans. First of all make sure you have your factor "to go" pack with you. (Factor and all the supplies that you need just in case an infusion is necessary. You may also want to include instant ice packs.) Nothing ruins the fun like an injury and being unprepared to deal with it. If you have your supplies...you can just infuse and continue to enjoy the festivities. Next make sure you apply and re-apply your sun block throughout the day. As well as keeping yourself and the children hydrated. Water is really good but you may want to consider some Gatorade or Powerade if you will be out in the heat the majority of the day. If hiking, biking, or other sports are on your agenda make sure the proper protective gear is used. This will help cut down the chances of injury.

I know many of these things are common sense things...but sometimes in the excitement and planning things can be forgotten. May you have a wonderful Holiday as you celebrate the Freedom of Our Great Country. Happy 4th of July!

Meet and Greet!

There are some moms that would like to introduce themselves. Please feel free to introduce yourself here! Also...let us know what subjects you would like to discuss. New blogs can then be started. This site is for all! We want it to be beneficial for you...Mom2Mom!

To PORT or not to PORT

I recently met a new mom who is trying to decide if a port is the right choice for her and her son. She will be checking in on this blog so please share your thoughts about ports. Also maybe you could share your story of how you decided to have a port or not.

I have three sons with severe hemophilia A. At the present time none of them have a port as they are 24, 13, and 11. They all have had a port at one time. My oldest did not have a port until he was about 11. My other two had their ports placed between 10 months and 11 months. I was not a believer in them at first.....but boy did I change my mind!

A port may not be right for everyone. I did find it easier and less stressful to infuse my sons who always presented a challenge to start an IV for infusion.

Thank you all for sharing!
Lori

Babies Babies

Contratulations to all you new moms, I have heard of 2 babies in the last week

We are all about You

Hi Moms,
Tell us what you would like to talk about, or need information about. This blog site is what ever we want it to be. Let us know what you would like to hear about.

Enjoy your April Fools Day.

Camp is right around the corner, do we want to talk about camp?
Signing up for Kindergarten for next year ?
The first family vacation away from home?
I am a carrier and looking at having a child?
How do we treat our children the same when one has hemophilia with an inhibitor?
What is an inhibitor?

These are a few ideas to think about it, let us know what you would like to talk about?

The ER - again.

Hi Moms,

Just a note to add to the information already provided on ER visits.

• Be prepared to have to explain just "how long he has had hemophilia".
Do this without anger or frustration - right or wrong you may vey well find there are medical folks out there that know "NOTHING" about bleeding disorders, including the inheritance aspect!

• If asked to leave the room so an iv can be started - don't be afraid to refuse. This is your child and it is your right to be there.

• Share w/ the med staff what you know:
- the best site to try for a vein
- your 3 stick policy (if someone on staff can't setup your child in 2 tries, someone else has to be called in. We often would request the IV team on call)
- that you are going to pull out the bubbles as this quiets your child

• Point out the "Treat a person w/ Hemophilia First" poster in the waiting area if you are sitting for more than 15 minutes before you are triaged. If there isn't a sign in the ER let us know, there will be one the next time you have to "visit".

• Present an "in charge and in control" demenor to the ER staff. They listen when you speak with a sense of knowledge and authority. Never be afraid to tell them you are taking your child to another facility if the care is not up to your standards. Call your insur. co. from the waiting room or outside on your cell phone and let them know what is happening. They want your child treated quickly to avoid costly complicaitons as much as you do!

I know many moms can add to this list - so come on ladies - let our new moms know what to expect and what to do!

Kris

Emergency Room Visits

My son has Hemophilia ..he is factor VIII severe less than 1%
I have his factor and doctor orders with me
We need to be seen right away
This is my opening line at the Emergency Room

I have not had to visit the Emergency Room for some time and I do not miss that
Being prepared for the visit makes everyones life less stress full
Make sure you inform them as you walk in the door that your child has hemophilia
Discuss with your treatment center the best procedure for you at the emergency room
Ask lots of questions so you can focus on your child at this time and not on learning the hospitals procedures-- such as bringing your own factor.

Does anyone out there has some suggestions or emergency room stories they would like to share?

Ports & Fevers

I am hoping you all are aware of the following information. If your child has a central line (port-a-cath, hickman, PICC) and they are running a fever...some lab work should be done. My son has had a port now for over 7 years and this still is something I deal with. He was running a 103 fever yesterday afternoon, and just because his sister had one too, I questioned wether or not I should have the blood culture and CBC done. After contacting the HTC they assured me that the tests should be done. Better safe than sorry was their encouragement. So I went ahead and got the lab work completed. And as I had hoped his white blood cell count was normal.

But there was a time when I did not know to have a culture done when he had a fever. When his port was first placed at 8 months of age, I was very uneducated about how to care for it. All I knew was that it needed to be flushed once per month if we did not use it. I did not know about much else. A couple of months later he did get a 104 fever, but the next day it was gone so I didn't think much of it. It happened again a couple weeks later. But again left so quickly that I thought he was fine. About a week after the third time he had a high fever one day and gone the next, I happened to be chatting with the HTC nurse. It was regarding another matter but I mentioned the mysterious fever and that it was the third time it had happened. She asked me what the cultures said...And I said "cultures? I didn't know anything about that." She was very insistant that I take him immediately in for blood cultures and a CBC. Sure enough it was an infection in his port. He was hospitized until the daily cultures turned negative.

Infection in a central line is definately something you don't want to mess around with. So any sign of a fever it is a good idea to notify your HTC so you can receive instruction as to what your doctor would like to have done. Even if you think it is nothing, a cold or ear infection it is always better to be safe than sorry!

Have a blessed day!

Strength in Unity

Good Evening!

I have just been reading the blogs posted in the last weeks - and I am thrilled that Mom's across the US and beyond are posting on the site!

Each comment I have read brings back memories of what my family experienced - and my sons were babies over 25 years ago! Yet, one thing remains constant - our need to share. And as all of you contributing to this blog have found - with sharing comes a true sense of support across the miles.

Kudos to the Moms' who have been so faithful in their oversight of Hemophilia Mom's Forum - you are great!

I can share this with you all and that is there are days I feel just as I did almost 30 years ago - a small feeling of panic wells up inside when Peter is going to do something: travel - race motocross - without me. He is an adult, and he is my child. He is mature, and he is my child. He is knowledgeable, and he is my child. He could be 60 and he will still be my child.

The needles, the helmets, the fear of discrimination, learning to walk, going to school - you will get through it and when you look back the tough times fade and the memories you recall are happy ones and even if it has been 27 years, he is "still your child".

Being Brave

Some times being brave is really hard.

Leaving your child for the first time.

Infusing your self for the first time.

Leting your child go to the birthday party with out family alone for the first time.

Some times we mix up regular fears with hemophilia fears, remember we all at one point had to do these things, and for me they have all worked out ok.

How where you Brave?

A Little About Needles

Needles are scarey for all of us and really scarey for our small children who don't understand why they have to get "stuck" to feel better. It doesn't make much sense to them. Here they are bleeding and hurt and the one they trust the most (mommy or daddy) is holding them down while some stranger (the nurse or lab tech) is trying to inflict even more pain on them. And sometimes when they aren't successful they try and try again. Tension is high! Then, when the child looks to find comfort in their parents eyes; all they find is stress and more fear. What a teriffying experience for them. And what a heart wrentching experience for us too. We are made to protect our children. But what is a parent to do? Our child needs this medication in order to stop the bleeding and in some cases to save their life.

I am sure many of you can tell us story after horrifying story (I have numerous ones myself). But I want to encourage you with a few things. First of all: You are NOT a bad parent, you are trying to do what is best for your child. Do not listen to the uninformed, judgemental chatter of others who don't have a clue what hemophilia is. I know it is often hard to do, but it is a must if you are truly going to benefit your child. Second: Get informed, get educated, read, ask questions, you need to become your child's best advocate. Because no one knows your child like you do! And I also want to mention a wonderful, helpful product that you can use to help cut down on the stress and pain of needle sticks for your child. Actually there are two; one is called LMX and the other is EMLA. They are topical numbing creams. They help numb the skin above where you are going to stick a vein so the child does not initially feel the stick. You can talk to your HTC doctor about getting some or your Home Care company. The cream is not a cure all, but it sure does help with the pain involved.

Needles unfortantely are going to be a part of their lives...but whatever we can do to "make it better" will definately help.

Just learning to crawl

Hi, all you moms out there, we have a new mom that is worried about her baby learning to crawl, walk, run and so on. Lets give her some words of encouragement. How many of our children made it.
With my son I padded the inside of his pants for some extra cushion for his knees, now they make pants and socks like that
I also padded the fire place and traded my square glass top coffee table for a round wood one.
That is the only thing that I did, but I am sure some of you other moms have some good ideas for her. I will check back tomorrow. Have a good night ohh I made sure that his shoes fit well, so he would not stumble good night everyone

Leting your boys grow up

Today is going to be a long day

My son who is 13 years old, he will be 14 on the 27th of this month, went snowmobiling

His best friend has snowmobiles, he has gone before, but this time is different
they left yesterday at noon and camped out in a heating hut and are coming back today before dark

He infused to 100% of course before he left and will infuse today to 100% before he goes out today. He has factor, emergency releases, he is educated, he can self infuse as long as he is not to injured. His Friend and dad are 5 minute educated. head injury or internal injury call mom and head out of the mountains. Just in case you are wondering he has all the safely gear available not just a good helmet

He is going to be fine and so am I. I will let you know when he gets home

Some days are for memories

Today is my mom's 70th birthday, and we had a party.

Remember that we are people, moms, dads, sisters, brothers, sons, daughters, and friends first
second we have hemophilia.

Enjoy life

Success - A Normal Fun Day

Thanks, Rhonda for reminding us that we need to look at our daily lives and extract the successful moments. Too many times people and circumstances shout the negatives and failures at us. I want to take the time to look at the successes, and the positives no matter how small.

One such success came the other day when our family drove up to the mountains to the "snow." (Around here you actually have to drive 2 hours to find snow.) Busy packing snow gear, snacks and 6 kids into the van was hectic and I had forgotten to infuse my son that morning. We spent the day sledding and playing in the snow. Much to the delight of my children...as this was their first time sledding. A couple hours into it as I watched my son flying through the air after going over a jump...and realized I forgot the factor!!! My mind began to race: "What am I going to do if he has a bleed?" But after my panic...nothing happened. Nothing "bad" that is. We enjoyed the rest of the day sledding and drinking hot chocolate. And upon arriving home, a quick check revealed a couple of bruises but no bleeding. I call that a wonderful blessing and a success. My absentmindedness could have turned our day of fun into a real mess. But instead it was just a "normal" fun day!

2008 success stories

It is another year, it is the beginning of another success story
My son has his first day of Junior High Basketball if we make it through today, that will be my first success story of the year (not mentioning that his sister took him to get a Mom approved haircut and he came back with one)

What are you stories of success for 2007 or just the little ones that make the days normal in 2008

Happy New Year

Happy New Year

I would like to say Happy New Year to all the Hemophilia Moms and their families.

My family had a great 2007. We had limited medical problems and only a few of the normal kid sick days.

My son (Alex) and I traveled to the Annual meeting in Orlando and had a great time while making new friends and see old ones. With out trying we learned a lot while enjoying ourselves.
Alex and I also visited a private ranch in Virginia and had the most awesome time (to quote my son). We met other families with hemophilia as well as just having a wonderful time.

My daughter Kristin could not join us this year she is attending her sophomore year in college.
It is so hard to let go sometimes, but I am very proud of her. She is trying so hard to be a positive contribution to our community and she is being very successfull. She enjoyes being a camp counsler at hemophilia camps and also attending them as a camper. She is a carrier that also is diagnosed with mild hemophilia, so if any of you women have any questions for her I will pass them on.

looking forward to meeting some of you in Denver, Co at the next NHF meeting.

Have a safe evening and I hope to talk to you soon.

Happy Holiday's

Merry Christmas, and Happy Holidays to all

Reflection

As I sit here this morning and watch the snow falling ever so quietly, I remember the blizzard we had in December of 1978, the weekend my 3 month old son was diagnosed with severe hemophilia. Sitting in the intensive care unit, trying to absorb what we were being told, Todd's Dad and I struggled to acknowledge, accept and move forward - we were able to acknowledge, but the acceptance and moving forward came much later.

Thinking back I realize that was a pattern we followed throughout our lives. Each time we were confronted with something new there was the need to acknowledge, accept and move forward. For each, the time frame for that acknowledgment and acceptance in order that one could move forward,was different. For each, our coping mechanisms were different. But the basis for all remained consistent: we loved our sons and from that love grew a thirst for knowledge; with our knowledge we gained control; with that sense of control we lived normal lives in a not so normal world.

What is Important to You?

Had a chat with some of the other mom contributors to this site today. We all agreed that we want to make this blog the most beneficial to you. In order to do that we want to know “What is important to you?” We invite you to tell us what is on your mind, share a story, ask a question, voice a concern, or simply bounce an idea off of another mom. If you need information, encouragement, or support we want to be here for you. The moms on our team monitor this site daily. Although we will not be able to give you a real-time answer we will be able to respond within a day or so.

Everyone is invited and encouraged to post a comment on this blog. It is a very simple thing to do. If you would like to make a comment, ask a question or tell us anything on your mind, all you have to do is click on the word “comments” at the bottom of this post (or any post). That will bring up a screen with any previous comments on the left side. The right side of the screen will be a place for you to leave a comment. Just type in what you would like to say and click “publish your comment.” If you have a google account you can sign in so that your screen name will appear on the bottom of your comment or you can remain anonymous. (If you don’t have an account you can create a google account if you like.)

Your participation, input, questions, stories, concerns and needs are what this site is all about. It is why we are here! We want to help you, encourage you, and relate to you Mom to Mom.

Looking forward to chatting with all of you!

Happy Thanksgiving

I hope everyone had as great of a day that my family and I had. We enjoyed great food, good friends, many family members plus the new puppy we now have. I am not leaving town again any time soon. I was in Phoenix last week and when I came home our family had grown by one puppy.



We watched the Dallas football game, and I was able to inform everyone that the kids and I have played on that field as well. My first year at the NHF was in Dallas and we had an outing to the Dallas Foodball Stadium, it was a blast, we met players and cheerleaders as well as have a great nite of fun and freindship.



Enjoy everyday.

Family Time

Tomorrow is Thanksgiving, a time to be with our families. During these times is when i realize the most that my children are kids first. That with today's technology, and choices if you are outside looking in on my family, you would see just that a family. Do not let Hemophilia lead the way, you lead the way and have a great Holiday

The Gift of Being Thankful

During this week I have had an opportunity to be busy, frustrated, frazzled, late, and stressed. You would think I might be upset about it but believe it or not I am thankful. Thankful to be so busy with my children that at times I don't even have time to fix my hair (pony tails are in aren't they?). Thankful that I have an opportunity to be frustrated with fighting sibblings, who forget where they put their shoes. Thankful that I am frazzled because we have to get to music class, tennis lessons, get our science experiment done, then get home and cook dinner before rushing off to a meeting for work. Thankful that I have the opportunity to be late for a lunch appointment because a child had taken off with the van keys and we spent 15 minutes scouring the house before they were located upstairs in the bedroom. Thankful that even though the stress of "getting everything done" somedays is more than I can stand. Thankful! Yes, I am thankful.

When I think of the alternative...lots of free time, relaxation, always looking my best, never late, and always calm. This sounds really good but at a price that I am not willing to pay. If this were my life it would be terribly empty. Think about it. Being single was fun and we did what we wanted, when we wanted to. But what did we all desire? We all desired to be married and have a family. And it is those precious children that have pressed in on our time, but I wouldn't trade it for the world. My first born son introduced me into the world of hemophilia with quite a jolt. There was no family history. So we were completely surprized and well as terrified at the diagnosis. But looking back now I would not change a thing. Though I do not like to see my son suffer with his bleeds and infusions I would not give up the wonderful character development that having Hemophilia has provided. Nor would I give up the wonderful friends and families that I have met through this tough disorder. The Hemophilia community has allowed me to meet such great, committed and commpassionate people (like all of you) who have inspired me and uplifted me in times of dispair. We can choose to look at Hemophilia as a blessing or a curse. But before you call it a curse, evaluate all of what you have been given (friends, personal growth, support, education and experiences). I choose to look at living with Hemophilia as a blessing. and I hope you do too!

Have a great day and take time to be thankful!

Exect the Unexpected

While I was at NHF in Orlando meeting and chatting with all you wonderful moms, little did I know what was going on back home. My husband and children were home on the West Coast. Friday morning was Factor morning... however, you guessed it, my husband forgot or maybe was just hoping nothing would happen. My son has a port and dad has tried to access it but has never been successful in doing so. So fear or forgetfulness, whatever the case, brought a frightening evening for our family. Something that all of us sub-consciously fear. "What if I am not there when my son needs me?" I was about to live out this very fear.

After retiring for the night...about 11:45pm (8:45 pacific time) the phone call came. "Honey I am in a delima, Brock fell on his head and cannot get up, he is disoriented and screaming. I am not sure what to do." In sheer panic I sat up in my bed, now wide awake and tried to calmly ask "Did you give him his factor this morning?" When the dreaded "no" answer came so did the tears and near panic. I was 3000 miles from home and could do nothing...nothing that is but pray. I instructed my husband get out the supplies and start on the factor, and that I was going to make a call. You see we have 3 younger daughters who were home, scared and screaming as well which were only adding to my husband's stress and anxiety. I called a dear friend who was so kind as to drop everything and drive to my home. While on the phone with me she arrived at my house and asked what to do. I said, "knock on the door and if it is open go in, then gather the girls and get them out of the room." She guided them upstairs, put jammies on and began to read stories to them to distract and calm them down. What an angel. My next phone call was to the Associate Pastor and his wife who immediately prayed then also came to the house.

At this point my husband was not having success in accessing the port so he called me back and put me on speaker phone. He was stressed, frustrated, and just wanting to just take Brock to the emergency room. "You need to get his factor into him before you go." I said, "You really don't want them doing it if at all possible. He needs to be treated now." He agreed and tried again, and again with no success. With much anxiety and a not so nice tone of voice he was beginning to "lose it." With every bit of calmness I could muster I said "Babe, just take a deep breath and try again, just reposition the needle." Of course my heart was racing, and I was praying desperately in my mind for the Lord to guide his hands.......then....finally....success! He was able to get the factor flushed into the port! (This was the first time ever that he was successful!!!!) I cannot tell you what a relief that was! Then they were off to the emergency room for a CAT Scan to check if there was a fracture or any bleeding into the brain. Pastor accompanied them, for which I was truly thankful that my husband would not be "alone."

Brad, my husband, then said, "Just go to sleep and I will call you with the results." Sleep! Are you crazy? Crying and praying was all I could for the next 4 hours until the call back from my husband saying, "We are on our way home, the CAT Scan was normal, no bleeding or fracture." This was an absolute miracle! It was like an elephant finally got up off my chest and I was able to breathe...and yes finally fall asleep. Of course it was now 5am for me and I had to work at the convention. So after peeling my eyes open at 8am, and buying the largest cup of coffee I could find I set off to the exhibit hall. For those of you who saw me, my sincere apologies. I was a mess!

But I do believe that all things work together for the good. I have been telling my husband for a couple of years now that we needed a back up plan, just in case Brock needed treatment and I was not there....So unfortunately he got on the job training! Brad actually did it under stress and pressure only to see that he could actually give a factor dose. I do not recommend this method however do think about an alternate plan for those unexpected times when you hope nothing will happen and it does. Practice without the stress is probably the better way to go.

Have a great day!

GOOD MORNING

IT HAS BEEN GREAT VISITING WITH ALL YOU MOMS OUT THERE.

It is Saturday, the last day of the NHF meeting here in Orlando, Florida.

As we move on to our final day, new friends will be made, old friends reunite, all with one thing in common... to be part of a caring community.

Hemophilia moms will always be here for each other.

Have a safe trip home and stay intouch. We are looking forward to blogging days with you all.

Rhonda and Jenny

thanks for coming to brunch

About 40 ladies attended our brunch, this morning a good time was had by all. Many moms had a chance to meet, chat and enchange stories, hopes and dreams. We were all encouraged and are looking forward to connecting and networking with new moms as well as experienced moms! Grandmoms were welcomed and encouraged to participate as well as pass their expertise, knowledge and their loving touch! Again thank you so much!

We are looking forward to seeing you at Sea World tonite as we "Dine with the Penguins"

It's almost time, meet us for our Mom's Brunch at 11:00 am this morning.

Meet us in the East Tower, Floor 11, Room 90.

Meet the Hemophilia Mom's, and Mom's from across the country -

share in what we believe is, and will become, one the greatest venues in which Mom's can talk to Mom's anywhere in the world, sharing thoughts and feelings, seeking advice, and just plain being connected to others who walk your path in life.

Later!

HemoMom2

Greetings From NHF Orlando, Florida

Ahoy from Orlando. The Hemophilia Moms team has arrived at the National Hemophilia Foundation's National Convention! We were greeted first with a rain shower then it cleared to beautiful Florida sunshine.

We are here to serve you, help you, inform you and support you in any way that we can. Please come by and see us at the CLS Behring booth #201! We are having a Mom's Brunch tomorrow morning in our hospitality suite from 11:00am to 12:30pm. Come join us as you "Navigate Your Journey."

Greetings from New York

Sending my best to all Mom's within the bleeding disorders community. I hope that this blog site provides you with a sense of unity as you communicate with Mom's from across the country. Helping others, helping yourself.

I would like to say hi to all you moms out there, Hi.
I am looking forward to visiting with all of you.