January 1, 2011 : New Years Goal- BRING THIS BABY HOME!

First, let me introduce you to "Kyle". Kyle is in an orphanage in China. This is his photo and description from the orphanage:


Photobucket

ChildID/Name, Birthdate: Kyle, 12/28/1007
Location, Gender: Asia, Male Agency: Wasatch Adoptions
Details: "This sweet little boy has Hemophilia (A Grade). His caretakers say "He is so lovely, likes to play with other kids, he likes to put on new clothes, likes to play with aunt, and its interested in the toy car which he can move. He is handsome, extroverted, and active. We all like him and hope there is someone familiar with this disease who could love and care for Kyle so he can lead a full life with his very own forever family."

As of April I know:
- That he was abandoned at 8 months old in a hospital in Shanghai with a brain bleed due to a fall from a bed, and intramuscular bleed due to IM injection, as well as respiratory infection and anemia.
- That he has had many bleeds so far including GI bleeds and shoulder bleeds.
-That every report I have read so far from the hospital shows him as malnourished and with respiratory infections.
- That he does not sing because "in the instution they do not sing or play music"
- That he likes to play with the other kids, and his aunties and caretakers, and seems behind in some areas only because he cannot attend preschool because of his Hemophilia.
-That he is not allowed to go outside to play because of his Hemophilia.
- MOST OF ALL I KNOW THAT I LOVE HIM AND NEED TO GET HIM HOME AS SOON AS POSSIBLE!

Max and Hemophilia


Thank you Max, for helping to give me the courage to save a life...your brother's life.

Because my brother had hemophilia and I knew it was possible to be a carrier, we had Max tested as soon as he was born using his umbilical cord blood. The diagnosis still came as a shock: Hemophilia A Severe. I flashed back to my brother's journey with the disease and completely panicked. Besides for the HIV fear that he lived with back then, his bleeds were treated "as needed." I saw him go through enormous amounts of pain. His ankles were pretty much shot by the time he was 10. He could barely run without an ankle bleed. Although he still lived a happy life, he was limited physically : and mentally , well, he was embarassed. He wanted no one to know. The disease back then was looked at a lot differently.

Flash forward to Max. After a lot of research and support from his treatment center at Johns Hopkins I was finally able to breathe and cope with the diagnosis about 2 weeks later. Although he has had no bleeds that have required transfusions yet, I have met so many families and children through Hemophilia Foundation of Maryland, that I am confident enough in treatment that I am able to even envision life with 2 boys with Hemophilia.

Max will be 2 years old on June 22nd. We've had a lot of bumps and bruises and a few mouth bleeds (controlled with Amicar- an oral medication), but have been lucky enough to avoid the first infusion at this point.

But, I wait. Almost anxiously wait, the first bleed, the first ER visit. Part of me just wants to "get there" so that I know what to expect. Its always lurking just around the corner and that almost makes it worse. What if he gets his first bleed and I am not right there? What if he hits his head at daycare and no one sees? Its a scarey life, but you move through it each day. I dread having to have my son in surgery for a Port, but I dread more the thought of attempting prophylaxis on a 2 year old 3X a week without it. I welcome though the thought of this constant fear of the inside of his body bleeding going away. It is always on my mind, and obviously due to my brother dying from a brain bleed, that is something I am in constant fear of. We have a "comfy cap", and he did wear it for a long period of time when he was crawling and sitting up and "clumsy". He will not tolerate it for long now.

So, that is where we are today with Hemophilia. Waiting. While my son in China does not wait for his hemophilia to strike- as it has many many times already. He waits for his mommy while he battles this disease alone. He has had at least 12 lengthy hospital stays and infusions for bleeds. And he has been alone. No one has been there to hold his hand and comfort him. I can barely even write that without such an overwhelming sense of grief that it makes me want to scream. He waits for his mommy, to keep him safe and to keep him comforted when he is hurt.