Monday at clinic they drew blood for Brooke's T cells and another viral panel. Today we got back that she has "some" (said loosely) immature T cells. That is a good thing, because Megan's cells are mature so Brooke is making "some" on her own. Her viral panel showed the metapneumovirus is gone (yeah one virus gone) BUT she has the rhino virus back, hence all her snot and coughing. Dr. Mageed asked me who she's been around, and said she should wear a mask. SHE'S ALMOST 1, SHE WON"T WEAR A MASK AND SHE HAS 4 SISTERS. I left feeling like a failure. I can't even keep 1 kid healthy!!! I grew up a farm girl and married a farm boy, to say the least we have never been total germ freaks. Until now!!! We hear every sneeze and believe bleach is the best invention ever. I'm not sure how much I have written about Brooke's diagnosis. She has SCIDS, what we don't know and will never know is what kind of SCIDS. I was telling someone in a nutshell what she had and he said "it sounds like Bubble boy." That is it!! Brooke is Bubble girl :) So if you want interesting reading google bubble boy syndrome. I also ordered the Bubble boy movie from the 1970's. It was only 0.43 cents. I guess no one wants to watch it :) With that said, the MD's have heard from a couple other MD's and it seems they would wait 5 months post transplant to see if her T cells are taking. So that takes us to at least August +. And we can't do anything right now with her cold. There are also further lab tests out there that we are waiting for.
With no sisters home Macy and Brooke started talking to each other. It's so funny. They seem to understand each other.The girls have been at the beach with my mom since Sunday pm. So it has just been the twins, Steve and I at home. I have been SO lonely. No one says, "MOM!!!" No one pulling at my legs, no kid hugs and the quiet is KILLING ME! I have the TV on just to make noise. Megs came home tonight and I LOVE IT!! I know why God gave me 5 beautiful children. I am lost and disorganized without them. Thank you Jesus!!!!
1 comment:
Maybe next time we need to go to your girls for a pedicure:) BTW... I saw that "tool" we were discussing at Walgreens today and I almost bought it for you... he he.. but thought you might have already!! Seriously though, you are an AWESOME mom and you are protecting Brooke the best you possibly can! Germs are just everywhere no matter how much we try to protect our kiddos. We will pray for some more good news at the next clinic visit and I pray you can camp with your family real soon!!!:) Love ya!
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