Tuesday, July 22, 2014

Better days.

Thought I had updated since my last post. Maybe my phone never published them?

Things have even out back in early February.  

Mariska finished Kindergarten and misses school already. It was such a blessing having a very understanding school and an AMAZING teacher. We miss seeing Mrs. Bradshaw, but look forward to seeing her passing in the halls.

Kamiah is such a ham who likes to pretend to fart... yeah I have to thank all the guys in our life for that one! ;)    She is a little to adventurous and seems to have nose bleeds once a month. Its something we're watching but not doing anything about. HA whats life with out a little trouble.

Mariska's tummy hasnt been "normal" since last fall. After we increased cellcept. The pain seems to be less often and intense.

We love watching our two girls grow up. Even the bad days there are so many things that having them makes so worth being a stay at home momma.     Last night they fell asleep in the same bed. Be still my heart.  I love seeing the bond they have made, and watching it become deeper.

We have enjoyed having my family all around for the past week. We forget the drama and joy we bring each other, making our reunions more fun! Its hard seeing everyone leaving knowing it might be another year before I see them face to face again.   This time the kids had a harder time saying goodbye.  Good thing for letters, computers and phone calls. 

We have spent the summer swimming, and running to Lagoon. July is a busy month. We're camping or traveling just about every weekend. Phew. Looking forward to days with better routines again soon.

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.