2015 to June 2016!

I decided to try blogger on my phone... and it was a big fail, so sad!   We've lost 3 or 4 great *I'm gonna do this blogging stuff again* posts!

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. 

Biopsy # 5

Mariska's biopsy on Thursday came back great! Zero rejection =) Wahoo!!!    We took off last weekend on friday to go camping in the Unitas. The weather couldnt have been better, Dare say maybe even to warm? hehe  Misky got to caught 3 fish. She was so excited all week about going camping, and while camping every day she would say "we're camping, i love camping"  Sam even got me to fly fish. Must say think I'll be starting a new hobby next year.

Today we had clinic at PCMC. Her echo looks great. A week or so ago we dropped half of her meds off the list, she was not doing so hot, throwing up everytime she had meds/foods. We've added them all back now she shes doing well. My poor carpet on the other hand took a hit.  We're winging her off from her steroids. prednisone. She has been on .8, and by tomorrow she'll be on .4ml/1.2mg. She'll stay there for a few weeks until the next biopsy then she'll start the wing to be off them!.

Mariska's prograf levels have been almost a guessing game. They are with in range now but still bounce around, depends on how much she eats and if she has runny diapers. *sigh* She'll be off of Vancomycin by monday. not going to miss that bad boy, its made a lot of trouble.


Mariska's energy has slowly come back. Shes almost to her bouncy self again, Shes also eating more and its being digested pretty well. For a while had me very worried.

We're milking this warm fall weather to go and do some fun summery activities, Notinthg like the outdoors.

Thanks to everyone in our ward and friends who have brought dinner in for us. Dont notice how ran down you are until you dont have to fix a meal. Thanks for all the thoughts and prayers.

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

How many doctors can fit into Mariska's room. ;)

Misky is still doing well. Think she misses a full good nights rest, as do her parents. Mariska is eating more day by day. Today I didnt think she was going to share any of her breakfast! She ate her bowl of fruit loops, then I ordered her french toast sausage, a plate of cut.. diced fruit and a blueberry muffin. She did share everything but the sausage and fruit loops. hehe. What is she doing to do when she comes home and its no longer a buffet of everything she likes.

Last night wasn't as bad as the few before it. Just had her nurse in and out all night waking her up for meds, vials, poor thing went to be very late. Shes making up for it now by taking a nice nap.

This morning she had her blood labs. Took them a while to find which overly poked hand would be best to add another poke. Once that was done she headed down to x-ray in the wheelchair on my lap. Think she enjoyed the ride the most today.  Then came back feel asleep for a 20mins. Time for meds and blood pressures, O2 stats and the rest to be checked. Visited with Dr. Laura stopped buy and talked to us. She said we're just hanging out until she has her Cath on weds to check and see if cmv is really a risk or just a saftey step.

We changed some of her meds around. I'll remember the names better when I see the labels more often. Shes off of zantc and on something else like it. Silly drug should help settle her tummy but it just makes her well you know empty it. Shes also only on one IV med now. Just the one to treat cmv. Shes on a better time schedule now. No more 2 or 4 am meds. YAY!

She had an echo today. It looks good still a little bit of fluid and one of her valves looks like it is having some leaking.. we'll learn more about that on the cath.

The pedi cards came by.. all erm 6 was it? then followed by her transplant team. I was getting nervous seeing all those people standing out side! about 9 with the team. It was very overwhelming to say the least. Dr. Everitt is back from vacation now, so we got to see her again. She shes concerned about the fluid so we increased her lasix. She also said the CATH will be tomorrow.

        And the word HOME maybe weds! back on friday for clinics or home on Thursday and back for clinics on monday. Just depends on what the biopsy shows. time to bite nails.

Misky is still fighting taking her meds. some of them are down right nasty so I cant blame her, but its something she has to take.

Thanks for all the support!