Mark your calendars people...

I'm not totally sure what I'm supposed to do on World Hemophilia Day, but I think that I'd better figure it out...quickly, apparently.  I don't remember any mention of this when they handed me the "Hey, your kid's a bleeder" orientation packet.  I wonder if we've got our own color and ribbons and bumper stickers and stuff like all of the other cool diseases have these days.


Maybe I should make up some facebook thing like "become a fan of recombinant factor" or "what color medicalert bracelet are you quiz". Watch for it people.  Watch for it.

I knew someone with Hemophilia once...

I don't walk around telling people that Zander has Hemophilia but I do get asked more and more about his medical alert bracelet. So, when asked I tell people he has Hemophilia, usually that solicits a blank stare. But on occasion, I get someone who launches into a story about someone they knew with Hemophilia.
Let me just say, when someone is pregnant most people wouldn't feel (or shouldn't feel) the need to tell a horror story about pregnancy. But for whatever reason they do feel the need to share those stories about people they have known with Hemophilia. Most of the time the long drawn out stories don't even seem to relate to Hemophilia, further more they don't leave me with a warm fuzzy feeling.
For example, I went to the pharmacy to pick up Zander's factor and the pharmacist said, "That must have been a shocking diagnosis." I explained that it wasn't that I am a carrier, so the diagnosis wasn't out of the blue. Upon learning that she went on to tell me, she knew someone who had a child with Hemophilia, he wasn't diagnosed right away. But the mom touched her baby's eye and it started to bleed! I didn't really know how to respond...one, that doesn't happen to people with Hemophilia (I touch Zander and he rarely springs a bloody leak.) two, I don't think it happens to anyone and three, can you please just get me my son's medicine so I can go get his infusion...Thanks.
I often think, (as the stories are being told) maybe I should fake a bleed to get out of this conversation.

Strapped in...

You know that feeling that you get when you are strapped into a roller coaster and you sort of lurch forward and then you hear that click, click , click sound that means you are about to scream like that whiny Calliou and you think "wow, this seemed like a way better idea when I was standing in line watching other people do this"?  Yeah.  That's me...watching this.

Guilty

We went to our HTCs First Step conference a couple of weeks ago.  One of the activities was a round table discussion of our personal experiences with hemophilia including family histories, how we found out that our children were affected/effected (I can never remember that one) with this disease, treatment paths we might be choosing, etc.  What I learned from this is that I am a bad, bad person. A bad, bad, guilt free person.

Apparently, as the mother, I am supposed to feel some kind of remorse that I messed up my kids genes.  Sorry son, but I am too busy working on building a respectable list of  therapists to address the damage that I'm pretty sure I'm doing by allowing your brother to dress you up in a Yoda hat so that I can have a funny picture to put on the blog to feel bad about one more thing.

I'm not saying that the women out there that feel guilty about this x-linked disease (like a couple of my sisters) are wrong.  I don't get to tell anyone else how they should feel, but I figure, I don't blame myself for my daughter's complete inability to do multiplication (what the heck did they invent calculators for I say) or for my son's affinity for weaponry (just a heads up - don't sit in front of us in church unless you want your family to become a target for an imaginary flame shooter), and I'm not going to blame myself for something that (unlike those first two things) I can't do a thing about.

If there comes a day though when my son needs someone to blame, I'll look him right in the eye and tell him what I need to tell him... "you got that from your father."

First infusion down...many more to come!

I am happy to be the first to post on this new blog. I hope that it can help people who are just learning about Hemophilia come to understand that this disease is manageable. The reason we started this blog was to share our experiences and learn from other's going through this same journey.
I am the mother of a very active nine-month old baby boy. He was diagnosed with Type A Hemophilia (severe) right after he was born. My dad had Hemophilia, so I knew when I started having kids that this diagnosis was a possibility. When Zander was diagnosed, I was scared and I felt guilty (yes, guilty: they were my genes that gave him this disease.)
I am blessed to have the family I have, to help me understand this new role as Hemophilia expert. I have a nephew who is almost eight who was also diagnosed at birth. I call my sister all the time asking about bruises and every other hemophilia question under the sun.
Up until this point Zander has done very well. He has lots of bruises (I don't know how he gets most of them) but he had not needed any treatments.
With that being said, all things changed this month. Zander is starting to walk and he is in need of a little more stability. The first week of March he hit his head on a end table while I was at my sister's house. He got a pretty bad bruise but after talking it over with the Hematologist he said Zander would be fine, just keep ice on it. Over the next couple of days we seemed to have little episodes pop up, so I called our HTC again. They said based on the combination of things, it would be wise to bring him up for an infusion.
Those words hit me like a ton of bricks. I had been anticipating this first infusion since the second I found out he had Hemophilia. I was scared and anxious. I didn't know if they would be able to get a vein. I worried about the pain he would be in.
The actual infusion went well. The nurse hit a vein on the first try. I have heard as long as you are calm your child will be calm. I guess, I will use that advice the next go around. I held Zander down on the table, and I cried and he cried. He looked at me with his big eyes, all my guilt came rushing back. I was very happy to be done with his first infusion. It was a big milestone and we made it through.
Then, this week (one week after his first infusion) he hit his eye on a barstool (yep, the only chair that isn't up on our table) it bruised right away but didn't swell up that much. Over the next day the swelling increased quiet a bit and I called the HTC again. They said to bring him in right away, we were also told that for soft tissues (like around the eye) it is better to infuse than wait and see if it swells. You can imagine hearing that made me feel horrible. I have asked the question, "How do you know when your child is having a bleed?" I get the same answer all the time, "You will just know." My sisters all told me that they would have waited also, that made me feel a little better.
Our second infusion wasn't as good as the first. They had to try and get a vein in his hand because they wanted to leave the IV in so we could do and infusion the next day as well. The first poke went through his vein instead of in his vein. The second poke went in and we were able to give him a dose of factor. The nurses wrapped up his hand and arm, using about a roll of tape. We didn't want him to be able to pull out the IV.
Two times I had to flush the IV to avoid clotting and the next morning I mixed up factor for the first time. I did call my sister to walk me through it, I didn't want to ruin a bottle of factor (it is very expensive). Zander did great. When we were done flushing the IV for the last time, I pulled it out of his hand. It was a relief to have it done. I will say, the first time was a lot more stressful. The second go around took a little longer but I did stay calm. No tears from me.
Starting this next week we are going to try for once a week infusions (prophylaxis) this will give him a little protection against himself.
Zander seems to handle it all very well, I have a feeling I am going to learn a lot from my sweet little man.

Coming Soon... one family's journey dealing with a bloody interesting disease -  Hemophilia.