Biopsy at 12..

Asking for prayers for Mariska today. She goes into the cath lab for another biopsy. We're praying we finally have a handle on her rejection this time.   She is nothing but energy still. =) Its all fine and dandy but its wearing us out!  I started to call her the energizer bunnys' charging pad. Oh to have her energy. 


I'm 38 weeks pregnant  and due in 10 days. YAY for baby sisters. So want her to not be in rejection, I miss my non marshmallow little girly. She is very excited to be a big sister. She'll run up to my belly kiss her sister smile and run back and play.  Mariska is one of the money caring people I have ever met.

We went camping the first week of September at downata hot springs in Idaho. They have a huge volleyball sand pit all the kids from the camp ground go and play in. She noticed some of the kids didn't have toys, so she grabbed all of hers walked over to each kid in the 3 groups and let them use one of hers. Then she would walk around making sure everyone was happy and had a toy. Even telling the others who we're throwing sand at the other little kids to stop and play nice. This kid was a born leader. Shes 3 remind ya and everyone listens to her. The 10 year olds just smile look at their moms like am I really following a little kid?    She also since being on steroids is super gassy! We laugh about it, but its shocking she can give her uncles a run for their money hahaha at least hers don't stink.   We love her chipmunk laugh and her never ending smiles.

Oh and lets not forget shes put on nearly 8lbs over the summer. Amazing when we have fought for every sinkin ounce all of her life. Atleast some of it will go away.

We are praying for her little Heart friend Kylie. Shes had her fontan at the start of the summer and now needs a new heart. Her family could use the prayers and comfort.

Heart is lookin' good!

Went to clinic today. Have to say getting there for 7am echo, 8:30-9 labs. Then 10 for clinic made for a super long day. Atleast we had time to grab breakfast. Heres what she had to eat... Ate my moms pancake, half of her grits *think its in a two cup bowl* Half her donut, a few grapes, two strawberries, and 1/3 a bottle of juice. Good thing we all dont eat like that every morning! We got to see our little friend Kylie and her mom. Mariska and her we're so cute sitting there visiting and playing.

Mariska's echo looked good, back to normal. =D! We have been praying and praying it would. Summer is no fun if you can go and do anything. boo hoo hoo. Its been a hard week on me, Think all the stress and with the baby coming in 4 weeks. or 29 days. hehe Is finally getting to me.

We even have the paper for the tapering off her steroids!! Still stuck in a Go-no-where, see-no-one status. But freedom is in the clearing up ahead. I can amost taste it.

Next werek she goes back for clinic to make sure things are hunky dory. The on the 8th or around it she will need another cath. To check and make sure the rejection is gone.

This dose of meds for her has been making us crazy! Shes always been really happy... ok if you have seen her she bounces off the walls and wants nothing but to talk and talk or make you laugh. No breaks. Its fun for a while.. but burns out pretty fast. Shes been pretty moody for the past week. The Dont look at me, just do what I say and even if I dont say it make sure you do it right. Grumpy but still super silly.

Heres a recap of last night...

Mariska didnt want to eat much of her dinner. So we saw this one coming.

Mariska asking dad if she can have something to eat, so they are looking in the freezer and fridge. Sam Looks at me and asks she she can have a hot pocket.

Me "no"
Mariska " i"m still hungry.. can I have one of those" *hotpocket* Working on her crying face..
me " no, those are for lunches "
Mariska while grabbing her chest/neck.. working on tiers "but my heart is getting sick", falling to the ground, I really need one of those."
Me "you can have apple sauce or carrots"
Mariska "NOo its getting sicker! I have to have one...
Me giving her a look that still says I dont think so
Mariska "I cant eat"
me " Then you cant have one of those if you cant eat can you?..
Sam holds up a block of cheese
Me "How about some cheese?"
Mariska getting up from laying on the floor.. "mmmm ok, dad will you cut me some?
like magic no more crying or gator tears flowing.
Shes SO much drama then normal, cant wait until shes off the steroids. Shes such a turkey!

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

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.

Run legs RUN.

Today has been filled with new information!  Started the morning with labs *love that PICC line in the mornings*. Echo was next, Misky got her first real blanket today. Love the simple joys. After echo we headed off to x-ray for her KUB *tummy x-ray* then back to the room for rounds.

Mariska and a different idea we came back then she wanted to go for a walk. Had to chase her down the hall with a mask. Silly girl was on the move. After about an hour, yes an hour of her walking around, its a miracle she has so much energy.

Came back for meds and rounds. The cards we're first. They reviewed her echo and x-ray. Said her x-ray looked BETTER!! Yippy! But is still not all the way gone yet. And also her Red blood cell count was low. 28. Should be around 35-45. 28 is the point where they go ahead with a transfusion.. yeah. She needs some more blood. She'll get it once it comes to the room. The cards are going to talk with the GI doctors again and see if she can at least start on a clear liquid diet!


Next was the transplant team. We are coming down on the steroids now. Shes at 4. This morning they went down to 3.7 and tonight it will be 3.0! seems like such a HUGE step forward. Once shes down to 2.8 she'll get the next heart biopsy onces shes been stable for 2 weeks on the level.   Shes going to need IVIG every month for 6 months. The next one is due before the 3rd of September *cant believe it will be almost September!*

Mariska has been a BALL of energy today. Hard to keep up with the kid and pull her IV poll. Phew. She is so excited she has the energy to RUN, shes running everywhere. My friend came after 10mins she was ready to walk. We walked the halls on the 3rd floor elevator to elevator 3 times, then walked down to the 2nd floor did the same thing. And again on the first floor and the kid still wants to walk! What am I going to do with all this new energy!!?? Its awesome. Cant get her to wait so we can put some pants on, Shes speedy.

Just before we went walking one of the card docs came and said we have the green light to start a liquid DIET!!!! There we're cheers for that news. So excited I was almost crying.

Rejection

So here I was thinking oh today will be easy *no pokes or crappy news* This morning they went to pull blood from Mariska's PICC line *yeah the one in her arm to her heart* they flushed the line then went to draw the blood got the waste blood changed tubes and then nothing, couldnt get anything from her line, grr so we flushed it again the nurse said maybe they will be ok with just using the "waste blood" looks like its been ok so far. The nurse said it might just be a flap at the bottem opens when you push something in but closes when you go to pull.. kind of like a one way door?.. we waited a while she came back a while later and it works fine now. Phew!

During the while I talked about above, Misky went down for an echo. The nurse asked if she wanted to ride in a wheelchair or in the wagon, she picked the wheelchair. She found a peds one. That was SO stinking small and cute. Think Misk was sad she didnt get to ride with me like before. But soon got over it.

Her echo was pretty fast about 15mins. Then we came back up to the room. Childlife popped in and Asked if we still wanted some tips to get misky to take her meds better. She'll come back later today, and make a hospital buddy doll with Misky =).

Emily one of the transplant cords. Called and wanted to come up and go over some discharge training with me and to set up a time. Ended up having Misky's echo fall into the middle of it so pushed it back to 2.

Then She came up to drop some news... ready? cause I'm still not. Maybe its not to bad and its just the straw that crushed the camels back.

She said Dr. E and another Doctor looked at Mariska's echo dont think its better or really worst. Which means the nasty immunosppressive steroids arent taking care of her Miral valve.. And that they are going to start her on a a new antibodies rejection ivig drug. She also said they know the donors antibodies now and can treat with the IVIG drug.

The IVIG drug is a very slow iv med with a lot of allergic reactions so they have to give her Tylenol and benadryl to prevent it from flaring up. And that we're not going home tomorrow.... looks like after Monday or Tuesday.. They want to do another biopsy to see if this drug helps her heart or not.

If you still wanted to send a card might as well. We could use the good vibes our way. They can mail them to our house if she's home when they come. 

Thanks to all of you who have sent a card or comment =) nice to know others are following our story and for all the prayers.   I'll try and post some pictures later. The steroids have made misky's cheeks look huge. thought she was just putting food into her mouth keep it like a chipmunk. HAHA Love those cheeks. <3