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.
7 comments:
That's so sad to have to go do that. When I first found out I had MS I had to get IV steroid treatments everyday for 5 days at my doctors office. Thank goodness it only took like an hour and a half and not half the day like your kids, but it really sucked bad. I can't imagine having to go in and do that every month. It's horrible. But on the flip side, it's a huge blessing that they know what's wrong and that there is a treatment available to them so they can have a normal life.
Thanks for your email Cherstin. More than ever with immune system problems you need to have these kids off milk. They won't like your changes, but they will change! They will get hungry enough. Try the smoothies, they are delicious and you can get all their calcium into one glass that they need. They will do so much better. Hang in there, it is so overwhelming but you can do this.
I love you sis. You sure are strong. Hang in there.... maybe they will find new treatments by the time they are older and they won't have to go through this every month. I love your boys. Poor Brig. You need to live here so we can help you on days like this!
That does NOT look fun at all. It's so good that they will be healthy though. Not easy for the mom. I am sure by the time the kids are adults they will have some new science for that or even a cure. It's amazing how smart those doctors are. Good luck.
Hi Sweetie, ok, Mandy, i agree, they need to move closer to one of us. Ok, back to reality, WOW, at least now we all know WHAT it is. I know that all of you are strong, and can handle anything, but as the Nana, not fair.....wish I could take it away from all of them, and you!! XOXO Patsi/Mom/Nana
Hello Cherstin, Patsi told me about your new
message on the blog.
Grandpa and I a very sad with all the new developments
and admire you for all you do.
Do remember to somehow take care of yourself, so
you can be strong for them.
We think of all of you often & keep you in our prayers.
Hopefully there will be a better way of treating this in the future.
Best to all 6 of you - take care,
Oma & Opa
Wow, i finally just read the link you posted. Very interesting. I'm hoping Alex got the good 50 and not the bad 50 of my 50/50 chance to pass it cuz he just got all his shots!! Interesting what Shari said about milk...think your boys could handle that? :) It would be interesting to try that experiment and see how they do. xoxo
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