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