I have taken pictures of all of my boys getting their first treatments and
Brigham was no exception. He has been going to Day
Medicine at Childrens hospital with
Kelland and I since he was just a baby. So he knows all the nurses really well and knows the rooms and things. But what was
different this time (besides being poked for an IV) was that he couldn't get down and play like he was used to doing. It was very
confusing to him. It takes a good part of the morning and afternoon to complete the prosess. So we always have lunch from the cafeteria, which is pretty good food, and play with toys and watch movies. I try to get Brig down for a nap while we are there to help make the time go faster for him. It's actually pretty
stressful for me because
I'm trying to constantly entertain the both of them and keep them happy. We went yesterday and
Kelland really didn't want to go. He has been having a hard time with this lately and I don't blame him really. We had some test run on
kelland to help us determine where this came from or why my children have this. And the test came back as a genetic disorder called X-linked
Agammaglobulinemia. I know, it means nothing to me eather but a bunch of letters put together. They
abbreviate it to
XLA. What it means is it is a mutation or disorder
attached to a X
cheomosome. It is carried down through the mother and only effects boys. Girls can be carriers but wont be effected. It's actually pretty interesting. Here is a web page that
explains in more detail if your interested.
www.lpch.org/DiseaseHealthInfo/HealthLibrary/allergy/agamma.html When we first found out that my boys had this, one of our first
questions was how long will they have this and be going through treatments. The answer at the time was they didn't really know but most of the time kids seem to grow out of it. Or really their Immune systems were just slow to
develop and about teen years is when they start to see improvements. They did tell us there was a
possibility that this would be a life long thing and treatment would be
indefinite. Yesterday I found out the worst. Because it is genetic they will have this their whole life. It
depressed me. I was sad for my children to have to be a slave to this. Also I can't help but wonder what they will do
financially when they move out of the house. These procedures and treatments cost about $5000 a month for each child. We are so fortunate to be in the military and have great
insurance. We don't have to pay for any of it. I know it's a long time off to be worrying about such things but I'm a mother, that's what we do. Anyway, on the flip side I know that they will be healthy. And that's all we really want for them. To live a normal happy life....... And they will.
This is Arkansas is the spring. Very pretty. I love the spring. It's my favorite season. It also seems to be the shortest. However this year I can't say that I'm all that excited to see spring come. Because it just means it's closer to the time my husband leaves us again for Iraq. He leaves in 4 weeks. And it's hard to believe it's upon us once again. So we've made a tradition to go on a family vacation before he goes each time. And this year we are going to Florida. I've never been to Florida so I'm excited for this adventure. We leave tomorrow and will be gone the whole week. Spring break is a wonderful thing. So I hope you enjoy the new spring flowers and green buds. And hopefully some warm weather.
