Monday, June 6, 2016
SO in a nutshell before I forget again and anymore things happen I'll give you the super fast update!
Mariska's update. She goes to clinic every 3 months, her heart is looking wonderful, she has gotten to come down on meds. Her new goal range for tacro ( immunosuppressant med) is 5-8! Her echo from last month looked good. Also she's far enough post transplant that she only needs a heart cath biopsy every other year, unless needed. so NO CATH this year!!
Mariska is 8! She decided she wanted to be baptized as a member of the Church of Jesus Christ of Later-Day Saints. Her daddy was able to go into the font with her. It was a wonderful day, filled with the spirit, surrounded by family and friends. Mariska Just finished the 2nd Grade. She was given the award works well with everyone, at the end of the year. She's looking forward to a fun filled summer with swimming and playing with friends.
Kamiah now 4! is a little social butterfly, she lives outside and is very self entertained, and like her sister an independent spirit. I love her smile, her silly blinks, and that curly golden hair. She's forever our little Goldy locks.
Baby #3 Did I tell you we were expecting?! No? She's now 10months old tomorrow, how can that be? I just had her.
Winnrey our newest little Girl brought a sweet spirit into our home and hearts. She is adored by her sisters. Winnrey loves to smile, army crawl, nurse and eat anything she can get her hands on. She is such a content happy baby. We found out she also has a small heart defect. VSD its a small hole between her two lower pumping chambers. No planned treatment for hers, if it gives her trouble later in life they can patch it, but so far no one has been able to hear it when checking her heart.
Sam and I are slowly becoming more wise and better parents. Sam Goes Bow hunting, flyfishing, backpacking or rifle hunting when ever he gets the chance, Hes love for the outdoors is one of the reasons I love him! Sam was layed off last year, (march 31.. so his first day out of work was april fools day.. not a good joke! couldnt even tell anyone until the 2nd, since my family is a big bunch of jokers!) Finding the right replacement has been a challenge, but we're blessed the market is opened up and he was able to find work quickly.
Sam's working on learning the ropes with Forex, so hopefully he'll become a full day trader.
Melynda I'm working on keeping busy with the house and kids. I do a little photography and play around with my cameo, its been fun making things for the house, gifts or cards for friends. Live's going well for us.
Tuesday, July 7, 2015
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
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
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
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.
Tuesday, July 22, 2014
Things have even out back in early February.
Mariska finished Kindergarten and misses school already. It was such a blessing having a very understanding school and an AMAZING teacher. We miss seeing Mrs. Bradshaw, but look forward to seeing her passing in the halls.
Kamiah is such a ham who likes to pretend to fart... yeah I have to thank all the guys in our life for that one! ;) She is a little to adventurous and seems to have nose bleeds once a month. Its something we're watching but not doing anything about. HA whats life with out a little trouble.
Mariska's tummy hasnt been "normal" since last fall. After we increased cellcept. The pain seems to be less often and intense.
We love watching our two girls grow up. Even the bad days there are so many things that having them makes so worth being a stay at home momma. Last night they fell asleep in the same bed. Be still my heart. I love seeing the bond they have made, and watching it become deeper.
We have enjoyed having my family all around for the past week. We forget the drama and joy we bring each other, making our reunions more fun! Its hard seeing everyone leaving knowing it might be another year before I see them face to face again. This time the kids had a harder time saying goodbye. Good thing for letters, computers and phone calls.
We have spent the summer swimming, and running to Lagoon. July is a busy month. We're camping or traveling just about every weekend. Phew. Looking forward to days with better routines again soon.