Day 25 #HAWMC: WoRd ClOuD!

Wordless Wednesday! #HAWMC Day 1 of 30

                That photo bomber, Captain Jackson, is the reason I advocate for Hemophilia! #HAWMC

Surviving the first lost tooth!

I've been bad about blogging lately. It's all good. Busy living life! However, this summer we can check off a milestone for Jackson. It's the same milestone that I've worried about as a Hemo Mom...the dreaded lost tooth. I've known it was coming. His dentist kept telling me for the past year that he has a wiggly tooth at every cleaning we went to. But I still worried.

How would he lose it?

Would it be the kind that hangs on for dear life?

Would it be wiggly for months?

Would it bleed?

So I get a call while at work. My kids know not to call me unless someone is dead, dying, bleeding or broken. Texting is fine for other things but calls are left for the serious issues. I answer my phone and it's Jackson on his sister's phone. "Mommy? I lost my tooth!!! I can't find it!"

I calmly reply "congratulations!! And what do mean you can't find it? Put your sister on the phone."

His sister then tells me they were looking at themselves in the mirror. Being all silly and practicing various smiles when she notices he has an open space between his teeth. The good thing: he lost it and didn't even know it AND he didn't bleed one drop, not even a speck. Not that it would've been a big deal as we would have administered Amicar and factored up. But that he was able to have a non-bloody lose tooth event was great! I realize that they won't all be this way. But I'll be happy with this little victory!

The photo his sister took and text me just after losing his tooth!

Since we never did recover the tooth we wrote a letter to the Tooth Fairy to let her know! 

Day 28: #HAWMC Must Follow

Today I'm going to share with you the top must follow facebook/blogs/pages in the Hemophilia community.

This is great too because I'm sitting here in Texas at the Hemophilia Foundation of America's Symposium where I have spent the past several days meeting some really great people.

1. Stop the Bleeding! A comedic web series. You can find it here. Patrick James Lynch is the man behind this web series and he just so happens to be a hemo himself. What he is doing for the hemophilia community, teens specifically, is truly inspiring. I can't sing enough praises about this man. I stand in awe of his humble, comedic persona and hope that my son will one day do the same great things for his bleeding community.

2. Save One Life, Inc. is a wonderful international nonprofit that provides sponsorship for people with bleeding disorders in developing countries. You can read more about them here. Not having factor available to you when you have a bleed is unacceptable but sadly this happens in developing countries. No one should ever have to go without their life saving medicine.

3. Hemophilia Federation of America or http://www.hemophiliafed.org/. This is a great resource for ALL bleeding disorders.

4. National Hemophilia Foundation or http://www.hemophilia.org/.  This is another great resource for ALL bleeding disorders. Both the HFA and NHF have annual conferences to hear the latest on research, parent, caregiver, bleeder break out sessions and a great way to network but more importantly to meet other families going through the same things.

5. Barry Harrde is an inspiring man who lives with hemophilia  He is behind the Wheels-for-the-World-with-Barry-Haarde in which he rides a bike for 30 days 3,456 miles and raises $35,000 for the Save One Life, Inc. He is an inspiration not only for riding his bike that long with hemophilia but he is also HIV and Hep C+. He is not letting anything stop him from reaching his goals. I am happy to cheer him on and hope to meet him as he cycles through town!

6. Vaughn Ripley is another inspiring man with hemophilia. He also is HIV and Hep C+. Vaughn and Barry are living life despite the odds of having the the tri-fecta (Hemo, HIV and Hep C). They are an inspiration to me and should be to you too! You can read about him here. He has a book entitled Survivor: One Man's Battle with HIV, Hemophlia and Hepatitis C.

I challenge you to check out one of these facebook pages/websites. I enjoy finding people that inspire me to be a better person and a better advocate for my son, Jackson.

Day 4 #HAWMC: Care Page

Your child, or you, have been diagnosed with Hemophilia or another bleeding disorder, so where do you go on line to find help? I have found a few places that have helped our family through the past 5 years.

1. National Hemophilia Foundation

2. Hemophilia Federation of America

Both of these are great websites to learn about your child's, or your bleeding disorder, product safety, research updates, educational conferences, news and advocacy.

3. Find your local chapter. I feel this is key in finding local support and finding other members of the bleeding community.The bleeding disorders may be considered a rare disease but there are still others out there...you are not alone. As a caregiver it's great to meet other mom/dads that are going through the same things we are. It also helps my son be able to meet other kids around his age that have a bleeding disorder.

I feel the more you know and can educate yourself on the bleeding disorder the better equipped you'll be in advocating for your child in daycare, school, sports and life. Advocate can be a scary word. But it doesn't have to be. Advocate could mean going to Washington, DC and talking with lawmakers. Or it could mean finding your voice to advocate for your child at school in gym class or the classroom. You define what advocate means to you and your situation.

Hopefully I've given you a place to start and find a home in the bleeding community.