Thursday, October 28, 2010

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!!

Thursday, October 21, 2010

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*