Monday, January 13, 2014

Pull my hair out please?

 Mariska had a half clinic today (labs and doctor check but no echo, Means they are not worried about her heart... just her. =)  

 We had a good amount of labs today. She had a good amount taken I should say. 6 vials normally we do maybe half of one.

Good news from this check up. She gets to STOP taking steroids! We have already taken her off all the "just to be safe" meds that come along with steroids. Wondering if they we're the reason her WBC dropped. 

Since last post Mariska was just starting to take the shots. She has had to do them 3 times so far. 5, then 2, then 3.  Her Neupogen levels have bounced around. 800, 300, 1200, 600, now 200!!!   She's pretty much just got put into a HUGE bubble at home. Its scary... I wont lie. Knowing the risks that come from having nothing to fight off any germs of infections shakes me to my core. 

  Mariska got sick last week, I half freaked out. After being told, if she starts getting a fever get her into the ER fast, will kind of do it for ya. She just has a cold with a small cough, nothing they were to worried about. Good thing for flu shots. 

Since her levels are so low we will have homehealth come by and drop off shots again. No school for her today. She's happy about that, since we started our morning early she is pretty tired. 

Last week I let her sneak to see a movie with Grandma and Grandpa. They saw FROZEN she was pretty excited to have a date, popcorn and everything. I felt she needed something to cheer her up a bit. I think it did. 

Her tummy has been hurting off and on since she got super sick back in September.   Today I asked if we can do another test for crypto.. none of us feel its the issue but I'll sleep better knowing for sure. yay for getting poo tests. 

Today her transplant doctors decided it was time to get out side help for this. We get to talk/meet with hematology doctor soon... I'm nerves...   The labs we had taken this morning they are happy are pending when they asked about her. Step in the right direction.    I feel blessed to know so many people have a hand in keeping Mariska safe and healthy. Its pretty humbling.   I'm waiting for them to call and set up a date to go see them. 

Mariska is such a good understanding kid. She might frown when she finds out sad things that has to happen to her, but she's always quick to look at the bright side and helps me put my smile back on and worries to the side.

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