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Monday, January 17, 2011

What does the diagnosis mean for Camdyn?

What we know:

* we have an amazing team that is taking excellent care of her.
* we have access to Humate-P, have it at home, daycare, my parents and carry it with us when we travel, etc...
* we have given it to her once and it works and she does not have reactions to it.
* Other than bruising easily and having trouble clotting after shots, she has not had any problems.
* She sees her bleeding team every three months for check-ups.
* All immunizations (shots) are given at Santa Rosa, with her team and many precautions are taken.
* We will continue to advocate her care and seek any and all that we can in terms of advances, etc...
* For now, we only will give her Humate-P if she has a bleed that requires it. If she starts having bleeding issues in joints, etc... we will give it to her prophylactically.
* HEB is so amazingly ordering her Humate-P for us for less than $5 a dose. It costs thousands for one dose without insurance.
* She can have babies one day if she wants.
* She can do any activities that she wants, except contact sports...don't want her playing those anyways :)
* Advances are there to one day replace her missing gene and make this go away. One day that I believe will be in her lifetime!
* She has no idea that she has this and I am thankful that by the time she is old enough to understand it will already just be a way of life for her.
* I am glad that she is unable to understand our sadness and grief the last 6 months. We are finally accepting it and she will only remember it as such.
* We don't think about VWD everyday. We are trained, educated and prepared. Let's not dwell on the unknowns or what-ifs.
* She inherited it from both Michael and I. We had no family history of it beforehand.
* Caden might carry the gene (TBD) but does not have the symptoms.
* She has a social worker through Santa Rosa that will handle educating her schools, caregivers, etc... Camy will have more bruises than the average child. 30% of VW patients' parents are turned into CPS. For this reason, Megan will go in and talk to others about Camy's condition as well as train them in what to do if she has a bleed.
* I have attended a bleeding conference, met another TYPE III mother and in a mini support group with other moms.
* I got burned by the other Type III mom- she is also a drug rep for a company who sells Humate-P and I think she just befriended me to sell me Humate-P.
* I belong to the Hemophilia and Bleeding Disorder chapter of Texas. Through this organization, I will raise money and proudly walk/run for my daughter.
* She walks and falls and bumps into things and is just fine. It does not slow her done in the slightest.
* Michael and I vow to allow her to lead a normal life. We don't want to put her in a glass house and deprive her of experiences and activities.
* If she has a bleed we know First Aid to treat it...if that does not work, we grab the Humate-P and go to Santa Rosa.
* She does not bleed more or faster than someone else. She just does not clot. She also has no problem replacing the blood that she looses so far.
* I can smell her blood from a mile away. From the moment I first smelled her blood in the hospital after her PKU test, I can identify her blood immediately. It is a very strong smell to me that smells of iron. I have no doubt that it is by no accident I have this strong reaction to her smell. It has no smell to everyone else.
* Ironically, I have a strong aversion to seeing blood. I faint. I have worked very hard to overcome this for my baby.
* Michael and I will be trained to administer her Humate-P when she gets older. It is given through a small IV.
* Once she is given Humate-P, her blood is completely normal for the next 12-18 hours. It clears up her bruises too!
* Humate-P is a human blood product, not a manufactured med. There has never been a case of blood contamination from Humate-P and it has been on the market for almost 40 years.
* There is another Type III girl treated at Santa Rosa. She is in her second year of college. She occasionally takes Humate-P but has never had a major problem or set-back.

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