Tuesday, July 7, 2015

Biopsy results

ZERO rejection.  Such a wonderful thing to hear!

Still some small labs spending but the biggie is back.  Looks like we can keep our summer plans. 

Thanks everyone for the prayers and kind words on facebook.  Helps keep our spirits up knowing others care.

Monday, July 6, 2015

Annual cath

Mariska just had her annual cath this morning. She was super brave even a little excited. She likes to ask if they have any stuffed animals or blankets (she likes to feel spoiled when she leaves. Thanks to everyone who does donations!

She did well in surgery and Is recovering nicely. Her throat hurts a little, totally normal. She picked banana as her mask smell. Said she wouldn't do it again.  What's your kids favorite.   Her Pressures (13) are up from the last cath (9), but lower then the one before(18). Little on the high but normal side.

Should hear back from pathology later today what her biopsy sample shows.

She can leave at 4:30 has to stay flat for 5 hours. Can't move for the first one. She's doing great. I'll post again with results.

Thursday, April 30, 2015

Almost 5 years.

Mariska's heart transplant was almost 5 years ago!  Can you believe it?  She's had her sweet donor heart twice as long as her own. Modern medicine sure can be amazing. 

I'm starting to brain storm ways to celebrate. What have you all done? Or think would be fun. I'm not much of a party planner. :D. We might have chocolate fondue night again. Can't go wrong with that tradition.

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.