Echo looks good. Day 4.

Today has been a slower one. The transplant team has clinics on Thursdays so they are super busy.  Mariska's Progaph is still low!! Shes getting .6ml and came in at .44mls   That's a huge increase. Shes getting .7 tonight with labs on Sat and clinic on Tuesday and more labs. Her level was 6.4. Still below where they want us 8-10. Next year she'll have the target of 5-8 but thats two years post transplant. Sill kid. We are all waiting for her levels to jump sky high, but nothin. They keep asking if we filled her meds here, if we get her labs done here. Nothing has really changed other the she got sick a few weeks back.  With a double ear infection. But no big changes.

Shes so done and wants to go home. As do Sam and I. Its hard being in the hospital never being left alone, becomes bothersome. Plan is to be discharged here in a few hours, hoping her meds will be ready for us when its time.

We had her echo just after lunch, They came to say it looks better. Wahoo!!  When her body rejected her heart, which we think since her prograph level was so low, it attacks the heart valves. Her tricuspid went from mild to moderate.

We're looking at being on steroids for a month, with a fast taper off from them. That's what we're praying happens.  Mariska has fallen in love with the place called Lagoon. She calls it her adventure rides. Hoping she gets to go a few more times before the summer is over. Who would have thought the kid who is scared at the play ground loves theme park rides.  She is very excited about her little sister who is coming. Only 9 more weeks! We're super excited.

Thanks for all the prayers!

Post 200, Oy! And an update.

Just when I thought everyone wouldn't remember us, They are proving me wrong.   morning snack lady remembers us, The cleaning lady remembers. Cindy from parents resource remembers us. 3 nurses have stopped us to chat. Oh and cant forget our buddies with the IV team. Made a new friend. The garden lady, she let Mariska help water the flowers and borrow some sunscreen. =)


Mariska's Prograph is super low, STILL. They want her to be 8-10, Shes been around 6 for a few weeks. Last few times she was 4.5, 5.3, 5.6. Just slowly going up. Thursday we changed her dose from .45 to .5 Her level only went up .2!   Few months ago if we moved it more then .01 She would go super high. Now we cant get her with in range.   She'll be on .6 tonight. That's the highest. Shes also put on some weight. Over 31lbs now. The steroids have started to take effect, for the first two days she was a starving child who ate everything, was eating more then me. Last night shes starting to get the "round face" her meds make her a little chunky and makes her cheeks huge.

She tested positive for Herpies from the labs with her biopsy. *aka cold sores* Guess it showed as active and not something that has just been around in her body. So the test is to find out if it is an issue. At least that's what I think. Asked what the risks are, was told it can effect the liver and eyes, but if it was she would already be showing it. I'm praying it wont be a problem, more so since I think if it is she has to be on the vain eater meds to fight it. ugh.

Doctor E. just came in, Said we're still on target to go home tomorrow. She'll need an echo labs and her last dose of iv steriods.   I need to find a time that works better for her on meds. With out risking if she wants to sleep in it doesnt cause troubles. I havent been so good at getting her to take them or giving them right at 12 hours apart. Something we will fix.

Gave her a new IV today. Got it on the first poke. yay!! only its her right hand so she cant color or eat very well. Made us feed her half her breakfast. Hard to wash hands with in iv too.

Thanks for the prayers and support. <3

Rejection.. One year ago to the date Mariska was given the gift of her new heart

Dont want it to be true, would do anything for it not to be so.. Mariska little body is rejecting her heart. The good thing about rejection is its treatable. Shes back on steriods again a long with a handfull of meds that come with it. Good bye just two meds and hello 8?   

She is in Cellular rejection level 4. With level 5 being the highest. Scary thing, this could have gone unnoticed for a while. Her body hasnt shown any signs of being affected.  Counting our blessings we are able to get on top of this early and prevent any damage to her heart.

The Test they ran this time showed 130 rejection. For most people rejection happens at about 100. Last year when she rejected she was 2,500. Not fully sure what it means, just know its the way the body shows its being attacked.


Mariska did awesome today. Only in the Cath lab for an hour and half. Was scared in the recovery room but was calmed when she saw Sam or my self. Understood she had to lay flat for 4 hours! like I said shes amazing.  They had two failed ivs one in each hand in the cath lab *iv didnt hit a vain or wasnt able to find one* We pulled her iv in her foot before we knew we had to stay. Then another failed on in her hand Finally found a vain in her left hand for her new IV steriods.

The game plan is to give her 6 treatments of mycofentale sp * just to sleepy to care* her iv steriod. They are every 12 hours so we should beable to go home thursday afternoon. 

The effects are already showing. She is STARVING. I can understand now why parents of teens with transplants have to lock the fridge. Nothing is able to fill that hunger. Poor kid. Guess I'll make sure she gets lots and lots of vegies in, haha. 

Thanks for the prayers. We find out if this treatment works in 1-2 weeks with another cath. Praying it stops it and we can start to get off meds again.

Cath lab

I'll do a longer post later. Wanted to post Mariska goes to the Cath lab today for her first annual biopsy! Hard to believe last time last year what our lives looked like. Please keep her in your prayers that everything runs smoothly.

July 16th, First event with HopeKids

One year ago today!

Watching the door we'll use countless times the next year

Who doesnt love a good cut??... Yep it happened, She cut her own hair, atleast it worked out to be a bob. Other then the very very very short patch in the back. haha.    Could have been worst, at her age I gave my self a mullet.. yep inch high from the ears forward. I was So in style.   Feeling blessed Mariska didnt go that far.

What you cant see? the good 7 month baby bump. Mariska is gonna have a little sister in september!  All looks healthy but I'll believe it when shes a month old in my arms still. Oh thank heavens for little girls. <3

Time for a picture or two.

She wanted a picture of her silly potato head.

At the The Utah Renaissance Festival     Couldnt help but to get a picture with some fairies.

One of the fairies gave her a little fairy charm. She was pretty excited.

Ridin that "pony"

Finally an awesome update worthy of a post.

Mariska has had a little bit of a rocky few months. We played the game of will she gain weight or drop??!  Not a game I like playing with a child. Rather it be me on Thanksgiving.


*Edit* Mariska doesnt need a cath until July her year mark!! Her Echos have all looked awesome
Mariska got to come OFF of her steroids last month. Now about 6 weeks ago. HUGE for news. She was doing really well off of them. But Her white blood count has been really low. 1-2 *they want her at the normal 5* Pretty scary seeing its the yucky cold and flu season. She did end up getting sick a few weeks ago. Not super sick just diarrhea for 10 days... yeah just. It made for some long nights and a joke for the potty training. Every time we try something like this moves us way back. She will be one day soon. I have hope.  

She worked so hard to get to 27 lbs then to see her drop 2.2lbs in those 10 days was so heart breaking! She was still not really wanting to eat but just eating so she had enough energy to do what she wanted and nothing more.

After those 10 days She started eating I mean EATING again. eating like a teenage boy. haha Its awesome to hear the words I want more of *something* please. Or I"m still SOoooo hungry mommy what can I eat. It blew Sam and I away. Who changed my child over night??  Guess it was just those nasty cheek cubing drugs.   She went from two bites of what lets say pizza to eating 2 slices of a med. pizza. Still just watch her eat and thing WOW! Shes eating like a normal kid! and no feeding tubes. Hard not to say a little prayer of thanks in my heart.

I was fear full of her clinic visit Yesterday. Thinking ohh boy here we go. They will push the G-tube again cause shes lost some weight. ugh. She got on the scale and gained!!!! I was so happy I almost did a happy dance. 12.45kg Shes on the way back up.  I'd better *knock on wood* ha I want this to stay.

She doesn't need to wear her mask anymore and we can finally sneak her into places that aren't very full. What something normal?? 

I'm a little over due for pictures, but thought I should get a post in before time slips again.   Mariska had a fun St. Patricks day. The leprechaun came while we we're away and made a HUGE mess in the kitchen. She didn't think it was very nice thing he did so she helped me clean it up.   The Other night while we we're getting ready to say pray. She said wait I need to say something. We look at her and she being the goof she is said " I am a robot I have to talk like this" something about the cows are making her to save them. We tried SO hard not to just roll on the floor laughing at her. Shes full of all kids of silly things.

We're praying for those in Japan. What a scary time. Your in our hearts.