Along my life path I've learned that learning from others and sharing is the most powerful thing.  If one fails...learn how and avoid those mistakes if possible.  If one succeeds... learn how and do what you can to replicate it in your life.

To learn from others and to receive up-to-date information, I've signed up for several enewsletters and "to receive information".  Today, I got a a package from Red Chip Enterprises with many different books for me (as a parent) and for my son to help us live a better more informative life.
Here are the titles of the books that just arrived:
  • What to expect during the Primary School years
  • Teaching the Educators
  • Just a Boy
  • Dental Care
  • Alexis, The Prince Who Had Hemophilia
  • How Children Understand Hemophilia
  • A practical guide
  • Teach Your Child
Thank you Red Chip Enterprises for all this incredible material.  I am looking forward reading all the books to learn and to share with others how to make the lives of our children with Hemophilia as pain free and as free as possible.
Josh walk up today very clingy.  I thought he just missed his mommy since I was not able to spent time with him yesterday as I was sick and didn't want him to catch it.  But something inside of me felt unease.  Not that I mind extra hugs, quite contrary, I would spent the whole day cuddle up with my baby, but something seemed wrong. 
When I started to put his t-shirt on, it became evident.  He favor his left arm and he was showing me that his right arm was hurting him. There was no bruise, no swelling, nothing that would alarm me.  I've learned, when in doubt, call!  So I called Children's Hospital immediately. We are on our way.  Poor Baby is going to get pocked again. :-(
An Open Letter To A New Hemom... Tatyana Hi Tatyana,

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

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

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

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

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

Take care,
Jenny Posted by Jenny at 10:20 PM 1 comments: Suzanne said... Tatyana,

I hope you find comfort in knowing you are not on this course alone. Jenny gave you the best advice there is....get connected. My 10 year old son was a spontaneous mutuation and was diagnosed at birth. Finding and getting involved in our local Treatment Center, local Hemophilia Chapter, support groups and this web site saved me. I just said the other day that "It takes a village to raise a child" and no truer words have been spoken. I am blessed with a very supportive family but it just isn't enough sometimes! I needed support, encouragement and advice from those who have walked a mile in my shoes. Understand the fears and anxiety we are experiencing as Mom's and can encourage through experience. Thank you for sharing your story with us and we would love to hear from you. My son leads a normal life thanks to modern medicines like Helixate FS. He plays baseball, golf, basketball, swims and is active in almost every area in school. He's a boy. Welcome to our family of Hemophilia Moms.
Hemophilia is a bleeding disorder caused by the absence of an essential blood clotting protein. He will always have the same level of factor deficiency he is born with.  Check out Myths about Hemophilia.
Vitamin K-Rich Foods Foods rich in vitamin K can help platelets function properly. Vitamin K plays an essential role in platelet function and blood coagulation, helping to regulate the enzymes required for blood clot formation. The Linus Pauling Institute at Oregon State University explains that vitamin K helps activate seven proteins involved in the clotting cascade. Foods rich in vitamin K include leafy greens like lettuce and parsley, olive, soybean and canola oils as well as cruciferous vegetables like broccoli, kale and Swiss chard.

Read more:
Josh had his first nose bleed yesterday.  It is always scary when you see your child's face covered with blood, it's even worse when a child has Hemophilia.  Of course my first reaction is AHHHHHHHH!!!!  I AM FREAKING OUT! And those High School Drama classes really pay off when you freak out inside and have to show a calm and knowledgeable face  to your baby. 

My husband ran to call the doctor to check what to do.

Meanwhile, with my years of "mommy-doctor" training, I thought that bath can sooth his nose bleed.  Josh was thrilled with the idea of going to the bath, after all it's his favorite activity.  Who wouldn't love getting everything and their mommy completely soaking wet?

The bleeding seemed to subside.

My husband came to the room to share what the doctor told him.  If the bleeding will stop in 3 minutes or less, then it's common "vein-pop" bleed and we don't have to run to the hospital.

Saline helps as well to sooth the nose bleed.

Here is an article I found:

How to stop a nosebleed in someone with hemophilia A:
  • Pinch the nose firmly for 15 minutes without letting go. Make sure you are pinching the bulb of the nose so that it is completely closed.
  • Spray decongestant nasal spray in each nostril prior to the nose pinch. Do not use a decongestant if you have heart disease or high blood pressure.
  • Sit upright, do not lie down.
  • Breathe through your mouth.
  • Drink cold water to clear blood from your throat.
  • Seek medical care if the bleeding does not stop within 15 to 20 minutes.
Additional home care includes:
  • Stop smoking.
  • Avoid hot liquids.
  • Do not take aspirin for at least one week.
  • Do not pick blood from your nose once the bleeding has stopped.
  • Do not blow your nose for 2 days