It's kind of scary putting yourself out there. What if no one reads what you write? Worse yet, what if people DO read it, and you make a fool of yourself? Many of my friends have started blogs recently, and other friends have been blogging for years. I wondered, what I could possibly have to share. Then we had a medical issue with one of our children over Christmas vacation. After that I felt like starting a blog was something I needed to do.
As to not reinvent the wheel here is part of a facebook note I wrote about what was going on with our 18 month old.
Over the next couple weeks we (Jody and I) will probably be posting a lot of medical posts about Corbin, so I thought it might be best to explain a little. Below is an excerpt from the National Hemophilia Foundation website.
"Hemophilia A is the most common type of hemophilia. It is also known as factor VIII deficiency or classic hemophilia. It is largely an inherited disorder in which one of the proteins needed to form blood clots is missing or reduced.
When a person with hemophilia is injured, he does not bleed harder or faster than a person without hemophilia, he bleeds longer. Small cuts or surface bruises are usually not a problem, but more traumatic injuries may result in serious problems and potential disability."
To treat hemophilia you give doses of the factor they are missing via IV, sometimes multiple treatments are needed for the injury to heal. Teatments can be done on demand to treat an injury or on a schedule to prevent injuries (prophylaxis)
The boys have severe hemophilia we do preventative treatments to keep injuries to a minimum Kolbe does treatments 3 times a week and we had started Corbin on preventative treatments once a week. If there is an injury such as a fall more factor can be given to further help the body heal. Thanks to a to a small cut on his tongue before Chirstmas it was discovered Corbin had developed an inhibitor to the factor we give him. This means his body sees it as something that doesn't belong and fights it causing it not to work. We managed to get his tongue to stop bleeding using a different medication.
There are times when this is all totally overwhelming, like when I'm putting away all our supplies only to realize I forgot to order more tubing for the pump. Or last night when we were finishing up our 45 min factor drip I looked at where is port incision is and couldn't help but be sad he has to go through all this. Granted, the port was coming with or without the inhibitor and will make everything much easier for him but it still made this mama tear up a little.
Never in a million years would I have thought I could do the things I do for my boys. After all, I am not a nurse. But I start IV's (we use butterfly needles), taught my 11 year old to do his own IV, I mix thousands of dollars of medications every day, I've dealt with a PICC line for Emily, I know how to work an IV pump, I've learned sterile procedure and have accessed Corbin's port with the help of our awesome home health nurse. We still have a lot to learn about Corbin's inhibitor, but we have a fantastic support team.
I've been part of the First Steps program for years, we provide support for parents with a newly diagnosed bleeding disorder, now more than ever I see the value having someone who's "been there" can be.
