Halloween? is almost here

I posted most of Mariska's pictures on my facebook page. Dont think I'll ever get them posted onto here. Feel free to look at them if you want.

A little update.   *its a bit out of order thrid time trying to write this*
 
Misky had a clinic visit today. Just the normal labs, echo and check up. Her heart Looks and sounds perfectly normal.   Mariska Has been throwing up once a day, I've been hoping its just her prograf which will make you sick if its to high. Which it is. 17 Her normal range is 10-14. So playing with that again. She has lost a bit of weight. 11.95kg. Before her ER visit she was 13.3kg. Not so good.   We're playing with a few other tummy meds to see which will work better for her and putting asprin on hold.
 Her white blood count keeps dropping, which can be caused by two of her meds. which is a little scary seeing now thats all she has to protect her self from germs.
 She had a little to much fun in the echo today. One of her medical staffs *forgot his title whoops* did her echo. She was singing the whole time. Ha shes silly. He told her he'd look for some candy to give to her when he was done. Forgot and came back she looks at him and says "trick or treat" must have bribed someone cause came back with a yummy likely to be someones personal stash of chocolate bars. Silly girl.

Shes doing awesome other then the throwing up once between 3-6pm for a few days. Her glucose was a bit low but think all the candy she had today fixed that issue.

Dr. E is a little worried about doing IVIG again with Mariska. Shes A blood type and there has been some issues with the ivig having A antibodies. = liver kidney and other organ failure of things go bad!!  She'd turn yellow and be one sick kid. So after her cath on the 5th we will see if its worth doing.   If we did do them we have been setting things up with home health care to do them at home. Really hoping she doesnt need the last two.   She had a really bad migraine with the last two and maybe even 3 treatments which is on the list of a reaction so we'll see.

Starting to become angry with the people in the lab where she has her blood drawn... Tired of them blowing me off when I ask for IV team. blah. Guess I'll just have to be a mom there and just be forward.

Heres some pre Halloween pictures. We're planning to trick or treat at the hospital tomorrow, but heres the ones from today. =D

In clinic today they added to the system as Mariska "Strawberry Shortcake" Anderson. I love it. I didnt know this until the end. I was wondering Why so many kept poking there heads in to see her costume. =)

Mariska "Srawberry Shortcake" Anderson

Going to have family pictures done. Woohoo!!

Happy days at home.

Mariska loves being home. Able to run an play all day. Shes doing very well. Every now and then her little tummy hurts or gets upset but those are rare days. I still take her to PCMC twice a week for labs to be done, and once for clinics. Today she had a check-up. Her echo looks good, they are happy with it. Starting to think about changing to once every two weeks! but not until after her cath in two weeks. They said they'll have Mariska withdrawls. hehe. I'm sure we'll have the same but about them. But will be a much welcomed change.

We're planning to have her IVIG treatments at home! I'm kind of unsure about that. Kind of like keeping the painful things away from home.. but will be nice not having to stay in a small room down at the hospital. Her last treatment she was really good until about Saturday *treatment was on Thursday* She had horrible migraines you could just tell she was in a lot of pain by looking at her eyes. Poor thing. Those never come alone always joined with throwing up, Shes still not back to her normal self since then. Looking forward to our last treatment in December.

She came down on her steroids today again. Now at 2gm .66mls. *down .14ml since the last time* We've kind of grown fond of those little chunky steroid cheeks.

She sure talks a lot more now with this new heart. Picking up more crazy words every day. We can sit and chat about something. has made play time a blast.

Thanks for all the prayers and following us. *We have family photos taken last night so some goodies will be posted soon*

Home sweet home.

We've been home since the 24th =)  After picking up Mariska's Grocery bag filled with all different kinds of meds for her -yeah there's really that many! We waited for the discharge paper work and to be retaught what signs of rejection are and checked off her 12 meds.

This is what we came home on:
 Prograf x2day,
Cellcept x3day,
Orapred x2day,
Septra 3xweek,
Valcyte x2day,
Nystatin x4day,
Asprin .5day,
Lasix x2day,
Diuril x1day,
Aldactone x1day,
Prevacid x1day,
Magnesuim 2tablets day,
multi vitamin.

Its just a tiny bit  overwhelming.

Mariska is doing awesome! She begs to go to the park and play. If there are other kids she has to wear her mask which brings over a group of them to ask how come she has to wear it. =) She very good at leaving it on and knows when it can come off.  Shes picked up a little more attitude now, HAHA just beware she's always known how to get what she wants so that hasnt changed. Shes also so much happier. She used to have such a cute girly laugh now its a belly laugh at everything! silly girl its still cute. Just with more soul.

We had her first post transplant out patient visit on thursday. makes for a long morning leaving the house at 6. She did super. Didnt cry after the blood draw.. something kind of wrong with that! but I'm very proud of her for being so brave. Awesome durning the echo but thats normal. Had a bif of the wiggles for the blood pressure, what can I say shes a tease.

She no longer needed to be on the Diuril, =) we're down to 21-23 dose a day. Progress.

She stopped taking naps back in January since getting her heart she wants them again, guess that was a sign? Over tired and wouldnt or just couldnt sleep. Nice to put her down at a normal time at night in HER bed.

We still have clinic visits twice a week at PCMC, She'll also have IVIG once a month. Shame the treatments cant get started before 1pm. Makes for a long long day. But I'll take a long visit day then moving back inside.

Thanks for all the prayers, its helped us stay calm and extra positive. <3

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.

Kicking "Napoleon" Out ta here!

=-O its it really true?? We're stopping plasmapheresis.. or as we like to say plasma freeze. They could pull the line out today, but we're going to use it for some of her meds like IVIG and ganciclovir. Then we're pulling it tomorrow! It can be pulled once the blood thinner Heperin has been stopped for 4 hours. Some time tomorrow morning it will be taken out.

=) finally a step forward and not 6 back. *knock on wood ;)*

No more fighting with the stinky kinking tube. =)

Thanks for the cards Heres the address if you wanted to send a card.


Mariska Anderson
100N. Mario Capecchi Drive
Salt Lake City, UT 84113