Thursday, March 26, 2015

Clinic visit #2 of the year. (Pictures)

Mariska had another clinic visit today. We always start with labs..

She's having some nice lab pulls lately.  Makes us super duper excited!  No IV team in months! This is kind of a huge deal. :D  normally beg for finger pokes to avoid "someone in training" digging around. Yuck I kindly tell them mom doesn't do well with needles... lol.

After labs we sneak out for breakfast in the "old" building. Donuts, blueberry pancakes with buttermilk syrup.  Yes please.  I settle for a stolen bite. ;)  after we waste to much time we race back for echo and the check up.

Mariska is gaining weight... waaaat?  After a year of heading down to the redline.. like nutritionist asking for a food log to see if she really eats... arg. She normally had a bathroom trip in an hour after eating. Her body just wouldn't work right. All her tests looked normal.    Guess having a colonoscopy did the trick and reset her system? a long with ton of prayers :)   she's around 48lbs. Kind of blows my mind. 30 percentile for her age.  They want her to keep gaining saying transplant people are never over weight.... yeah.. just plan to keep doing what I've never changed doing. Ha!

Her echo looked great. The new doc is happy with how she sounds and everything looked. she doesn't have to go back until July for her cath.

Cold sores are lame. She had her first real outbreak this month. They gave her some meds for it... if I remember right it's the same anti viral she has while on the grocery sack of rejection meds... last time it was liquid. I forgot it's name since we called it liquid gold. 45 days worth was around 4,000 a bottle... yikes! 

Side note she's being dropped from her NoQuestionsAskedMedicaid  at the end of the month. I've stressed over it for the last few months. It's been a huge blessing and stress relief to have. Sam got a few raises and a nice bonus last year tipping her out of the range by a few thousand.   Bitter sweet feeling.  I know our Father in heaven is there for us and I know there are other options for help. 

If I can figure this out from my phone I'll post a few photos. The girls are growing up so fast!

Mariska is reading a head of her grade. Her favorite thing about school is recess. Favorite movie is frozen. Loves the color blue. Likes to sit in the heater vents in the morning. Only likes cold blankets at night. Likes watching play duh or toy videos on youtube. she is also learning to play the violin.

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.

Friday, December 27, 2013


What a busy fun week!

The girls had a good Christmas. Kamiah loves her new baby gear, and Mariska is in heaven playing with her doll house.

Merry Christmas! a little late, but with love all the same.

On to an update.   Mariska's white blood count, her Neupogen level especially dropped down to dangerous levels on Mondays labs.   Because of this she now gets Neupogen shots at night. :) I'm glad they are TINY needles. I've still made Sam give them. Before her transplant she needed shots twice a day to thin her blood. So you would think this would be a walk in the park.. not so much. Still dislike needles. HA!

Because it was her neupogen level. (They are the fighters to help keep you healthy) means if she got sick she has nothing to fight off the sickness, sicking to think something simple could kill her.    We stayed home from all the fun family events happening on Christmas eve and day. Wont lie it was so nice not having to run around and just enjoy being together.

Tonight she will have shot #5. The hope was the injections would boost her numbers up back to normal... This hasnt happened.   She was at 200 (lower then this we wont talk about what happens, super low and high brings out the weird nastys)   Her level today was 400.    Improving but still low.    under 500 she needs shots to boost it.

She'll get another 5 day treatment then labs to see what's happening.   Everyone we run into at PCMC are shocked when we keep coming back twice sometimes 3times a week! we are too... we love all the staff but would rather miss them. =D

Keep her in your prayers. She feels healthy and acts pretty normal, its been hard to tell her she's in a scary places and cant do ANYTHING because of the risk of getting sick.

We're doing lots of infinity playing and puzzle making. Wont forget about eating nothing but junk from our loving friends.

Friday, December 20, 2013

Biopsy results

Zero rejection!

She will finally get to come off her bag of meds. Slowly to make sure she stays stable but its in the plans. So happy.  Here's to a new year and healthly year!

12 long hours. Waiting to pick up meds and we'll be on the road.


Cath quick results

Her culinary look beautifully normal!! Im so happy I am about to cry witg this news.   

her pressures are a little high for her but completely normal range.  

later today we will find out if her heart shows rejection.  Crossing fingers its clean.

Her White blood count is a little low, something to be watched.   Her meds being a little to high can do that to her also.  What does it mean if they are low? If she gets sick it will take her longer and more work to get over a sickness.

Waiting to go back into the pacu to see her