Mariska keeps me on my toes! When the words. "Hurry mom, come here!" come from Mariska's mouth it always means one of two things. Kamiah is covered in something... or there's blood.. Today Kamiah was Covered in bubble goo. I cant turn my back for long until something like that happens! Last week she talked me into playing "Tangled" I got to be the wicked mom, haha! Well after I did my mother knows best song and send her to back to her room. *She giggles and asks me to do it 3 times before she'll go" I went to check on her a while later, and I notice there's hair in the bathroom and on the floor. YES she cut her hair again! I really promise I don't just leave scissors around. I cover them in back of draws.. they are now ALL until of the kitchen cabinets. She gave the her self a few nice layers on one side. What to do with this kid... After all she was playing "Tangled" and thats how the show ends with a hair cut! *face palm*
She loves to help cook but even more when I'm not around. Just yesterday also she decided the dog needed something better then just plain old water. Mariska took the last 1/4th of the chocolate milk and a few scoops of Kamiahs formula put it into the blender and mixed it with a spoon before dumping it into the water dish. Took me a few hours to finally learn where the mix ended.
Love this kid! but oh man, we have some crazy days.
There's an other little girl on facebook I started following last week who just got a new heart! YAY. They posted pictures of her new heart sitting in the ice water taken while they removed her old sick HLHS heart. I thought it was pretty cool to see a new healthy heart so I had her come over and look too. She say here for almost 20mins just looking at it, saying "oh WOW, that's what my heart looked like too?" yep baby girl, just like it. Prefect and nothing like a paper heart at the store.
This week has been a heart one. We are watching a dear heart hlhs become sicker and sicker as she hangs on while waiting for her little transplant. We love Kylie and her family a ton. Its heart breaking.
We have another little heart friend who we haven't met but I'm friends with her mom one a facebook support group IHH. Their 4 year old had a transplant as a young baby. And Finally got to go on her MAW trip! She wanted to go see Micky and Minnie. And was give the same wish Mariska was granted. Mia ended up sick with a cold that after the flight there became worst. Her mom took her to the local hospital while the dad stayed back at give kids. She was in rejection down to 40%. How can something like this happen to a sweet cleared healthy for this trip?! Mia had a cath that night and things went wrong.. she ended up on ECMO, but the lack of oxygen to her brian had done to much damage.. little Mia pass away yesterday. Our prayers are with her family in this unbelievably heart time.
Sam and I have been shaken to the core! What happened to Mia could so easily happen to Mariska. Its a very humbling thought. Life is so fragile. It reminded us we need to enjoy every day we are blessed and not to take things for granted. Our hearts are with them and they like us know Families can be together forever, and they will be with their sweet Mia again some day.
This is our full of life and spunk dearest heart friend Kylie. She is a little younger then Mariska and was born with the same heart defect as Mariska. Kylie has pretty much followed everything Mariska has happen. I look forward to the day when She has her new heart and Kylie and Mariska can have a play date out side the hospital again.
Kylie was placed on the heart transplant waiting list on Monday April 2nd 2012. Kylie has been admitted to the hospital for 102 days!. She's there while she waits for a new heart. She was able to wait at home for a few months before needing to be on IV medications to help the work load her hard has to endure. Please pray for Kylie Bug. Her family could use the support and prayers.
special and miraculous gift on the 26th of September.....
the gift of a new heart!
This is actually Matthew's second heart
transplant,because his first heart was attacked by coronary artery disease. Two
days ago Matthew received this 2nd donor heart after months of prayers on his
behalf and just in time to save his life! He got his first heart just months before Mariska. Matthew was on the list for 239 days
and in the hospital waiting for 164 of those days. Just 3 days before he
received this special new heart he had a heart attack and became extremely ill.
This is just another testament that prayers are answered and miracles do happen
(and sometimes with not much time to spare)!! Our family has prayed day and
night for Matthew and his family.
Please pray for Matthew as he recovers from his
transplant surgery and that his body will accept this special new heart! And
please pray for Matthew's donor family as they have thought to give life at a
time of their great loss.
Time goes so fast. I keep telling my self I need to blog every week but haven't. Maybe once I set my mobile option I will be better.
Mariska is doing great! She is a ball of energy. I love watching my two girls play. Mariska does something silly and Kamiah will laugh and laugh. Their favorite thing to do is place chase in the empty living room. Mariska will yell I'm going to get you Mia. Kamiah Giggles and crawls behind the chair and wait, peeks if she hasn't come to tickle her. Mariska Waits until she peeks to say "I FOUND you!"
Kamiah has gotten 6 teeth in 6 weeks. She has been pretty happy and never drooled much. Now her gummy smiles are fulled with silly giant baby teeth! She has mastered going up and down the stairs. Now we're working on getting her to walk. I'm ok with her doing it on her own, who wants their baby to grow up anyway. hehe.
Mariska is going on her 2nd year of dance/ballet. She loves the new dance studio and teachers. Her class has 5 girls! We didn't sign her up for pre-school since we're doing dance. So we do a little here and there at home. She really likes it the more we get into the homework.
Mokie! is our newest member of the family. We adopted a stray very well trained dog from our local shelter. He's a German short haired pointer, black and white tiny spots with a few large black spots all over. He loves going for walks, doesn't run out of the house when we open the doors and loves his ball. We really like having a dog!
Sam Got a promotion at work. He now makes salary, its a different world not worrying about if you clock in late. He's loving it! Sam works with 8 woman and one other guy his boss. Said the conversations are a lot different.
I'm enjoying being a SAHM. I finally started using some of my pinterst posts and made some cool and pretty bad things. Sam wants me.. ok ok I want to also. Start the little work out called insanity!! I might die but that's ok. Last time he did it I was tired just watching him!
We love having a house, but the push mower not so much, working on replacing that in the spring. We're slowly adding things to the walls. Painting Mariska's room, I will try to post pictures of how its coming long, slowly but it will get there. Sam and I painted around the doors and floor boards in the room. While I picked up the can and started shaking it walking 2 feet to the drop cloth, it slipped 3 inches out of my hands and onto the floor. the lid cracked and out came a good inch of paint all over me, the walls, Kamiahs crib, and the carpet. after much scrubbing felt the carpet would be fine. The next morning while Sam got ready for work I had this feeling something wasn't right. I checked to see if Mariska's was sleeping and she wasn't... opened the door to her soon to be new room and shes in there painting away. Poured some paint into the tray and had 2 brush's. Painted a large patch on every wall. dripping paint on the carpet as she went along. I ended up calling my mom to come and help watch the kids so I could clean it up. oh boy what a job, most of the paint had already set before I got to it. Sometime before selling this house the carpet will be replaced. Good thing it wasn't the new carpet!
I have a hard time putting into words how I feel, I'm over ran with emotions as I think about Mariska's sweet little donor and their family. We are so grateful to have been blessed with two years with Mariska's better quality of life she's had with her angel heart.
Heres an update. Mariska finished her first full year in ballet! She was so cute on the stage she had a smile from ear to ear. Shes not in tumbling and LOVEing this too. We're working on cartwheels. by we I mean she, haha. She got to be in the Hooper Parade and had fun throwing candy to everyone. Right after we left to go camping, She had so much fun, campfires with a few cousins, swimming in the lake, boat and tube rides! And sleeping in Grandma/Pa B's camper. Love the smell of Pine trees. Its nice to share some of my favorite childhood memories with my kids.
Kamiah is now crawling, a little slow but shes doing it! Now she can run away from Mariska when she comes to love her way to hard. Mariska loves her life sized giggling doll of a sister!
Sam got a promotion at work! YAY. So far he's liking his new job, but its a lot happening while going to school and working both full time.
Mariska had her annual heart biopsy on Monday. She checked in at 6am. They look her into the cath lab at around 7:45am. Sam, Kamiah and I had a nice breakfast at the hospital. walked around a little, about an hour and a half later she was done. All her pressures and arteries Look prefect!! Such a blessing, after 6 hours of her on bedrest for recovery we all went down had a chest x-ray, echo ECG then met with Dr E. Phew just writing it makes me tired!
Her Biopsy came back Clean a beautiful ZERO 0 rejection!!!! I'd started having nightmares a few weeks ago when the dates we're changed about having to move back into the hospital and how much harder it would be to have Kamiah and living there again. =) We dont go back for 3 months. But we're still there once a month to pick up meds. :o\
I cant but help to think of Mariska's heart donors family. I want to wish her a Happy Mothers Day. We will never forget her little one or their act of kindness that has let us have extra time to enjoy Mariska on this earth. Even if we never get a chance to learn anything about them, they are always in our hearts and prayers.
Why does my heart still get sick when ever I see PCMC on my caller ID?! I hold my breath put on a smile and take the call. I know the day I dont force my self to be brave they will have icky news.
Mariska's Prograf levels are once again still not stable! They are a little to low *they like it to be with in a range, to hign will damage other organs. To low she can go into rejection* for this far out *less then 2 years* We're going from .85ml to 9.3mls. Then they want a level check with in 10 days.
I layed down with her today, she cuddled up close gave me a hug and said nothing bad will ever happen as long as your with me mommy. Its the sweet things in life that make it better. I guess being told not to go out the revolving doors by her self at pcmc really did scare her a little. I so love this little girl and all her spunk!
I so failed to post we're going to Disney World!! Well we're back now. =D We-had-a-BLAST. We stayed at Give Kids The World. Who gave us tickets to all the major parks. I'll do a more detailed post about each day, Just wanted to get on here and say we're home!
Mariska's favorite thing on the trip was when Snow White give her a HUGE kiss on the forehead. It was so good to see her so happy and to hear so many giggles. Thank you Make-A-Wish for giving us the chance to do something amazing!
Mariska had picked something up at dance the week before we moved. Landing her and my self feeling pretty sick. Made packing/ moving and being a mom not that awesome.
We both finally got better. Then she picked up something a little different leaving us with a runny noses for 2 weeks and a cough thats going on 3! Kamiah ended up getting it too but lucky hers wasnt nearly as bad. Hard to teach a 4 year old not to cough on her sister and she cant touch her if shes coughed on her hands unil she washes them. With Mariska always in her face trying to make her laugh I was shocked we kept it from her for the first 2 weeks.
Shocking how much faster Kamiah recovers from being sick then Mariska. Mariska still has a little cough. *sigh if only the sick kids didnt go to dance and church*
Mariska had a doctor visit almost 2 weeks ago... I didnt like the news and finally had to much going on. Dr M thought her tricuspid valve was leaking a hair more. Dr. T. didnt think it was. I'm praying it was just her cold that was playing tricks on us....*leaking is normaly the first sigh of rejection* So Dr. M ordered an ECG to make sure. Dont remember what it said but must not have been to bad, since We got chatting. After we left Transplant team called to tell me her prograf level which is finally in a nice place. yay! And that if we wanted we could come back in 4 weeks and not 2. I keep forgetting to move it back so we're just going to go down on thursday. Kind of want a peace of mind on whats happening.
Since we just booked the plane ride to Orlando the day before clinc with our track record its only fitting something like this happens. ha! it always does. I thought we we're safe doing her trip so early and not waiting for Christmas.
Pray for her on thurday that the news is good and nothing to worry about.
We bought our selfs a house! I'm sure I told you but we're so happy and excited to have our own grass and drive way, That I cant help but to share the news again!
Mariska's Wish granters wanted to stop by and tell everyone the news that Mariska getting her wish to go to Disney World! But they wanted it to be a Surprise!!!! How on earth are we going to keep that a surprise?! We did it. I broke and told Sam, haha hard to keep something that big from my other half. We decited to have a house warming party sure why not right since we just moved? hehe. Told the Grandparents they HAD to be there.. no if ands or buts. They thought it was weird but went along with it. Since we we're just getting over colds we thought we better keep the party small.
Mariska had fun showing family her room and all the other rooms in the house. =)
Also Make-a-wish called yesterday. Give kids the world the place we're staying looked at the ages in our party.. they knew Kamiah was young but didnt notice how young she is! Since my parents are coming along, *wanted some baby sitters and we had planned to go to Disney land last year at this time with them anyway* They said they would pay for my moms tickets! Crazy We're all pretty blown away by their generosity! <3 My dad said they are buttering her up so she will become a wish granter. I think it will work too. She would be perfect for it.
On to pictures!
The girls a month ago
The joys of moving and cleaning
Melyndas *my* Birthday. Mariska helping.
Just chillin' With Uncle Tyler
Oh no he didnt!.. Kamiah's first taste of sugar... well of anything really. ha
Penny's Candy Shop! Her and her sister made the love birds
From my Love
Mariska and Grandpa Anderson Hamming it up
Kimberly Mariska Marilyn
Saying thank you for the pretty's, cookies, news! and ballons.
April 19-25th for her wish trip staying at Give Kids The World.
and the 25-27th visiting Sam's sister and her family who lives out there. Gonna hit the beach one of those days.
6 trip, 3 days at Disney World, 2 days at Universal Studios, 1 day Sea World. My mind is going crazy how are we going to get it all in! Time to makes plans on what we wanna see to make sure we get the big things in. We're getting so excited!
I'm going to try harder and blog more, I look back and think I sure missed posting about some pretty cool things and then forget all about them.
Lets talk about the title. Sam and I planned to wait on doing Mariska's wish cause she was so young we really wanted her to remember. *back when she was 2.5 when she got her heart!" then after talking and reading a friends blog and about their trip, I thought oh no! I had no idea there was a dead line on on a wish after your given a heart! 18months or so? well the first 5 months she wasn't allowed to do or go ANYwhere. Then it was summer, started having fun and BAM rejection back into the hospital we go. Then after another 4 months old steroids and go-no-where-do-nothing-have-no-fun-days where back. After that we Had Kamiah! and back into the keep those germs away gosh darn it!
So now has been pretty much the only stable time do really even have the option of it. Funny how crazy life is when you sit back and reflect.
We thought its time to do her wish before she misses it and doesn't get to spoiled by all the wonderful things Make-A-Wish can make happen. We started the process back at the end of November. Doctors signed the paper work in December then the call saying Mariska was going to be granted a wish in mid January, and the granters would call in about 3 weeks, maybe sooner since we live close to the valley. The day we got the call was SO awesome since we didn't know if she would really get one or not. turned into one of those Jumping up and down super excited times. =D
There was some confusion with make a wish, I've told you all we're buying a house??!?! well if not gosh darn it. We are moving! yay we're SO ready for a house and a yard. Back to MAW I gave them our address since I thought hey we'll might just move in that time... well they we're fast. And sent things to the new house we don't yet own... whoops. When are Realtor called us it was one of those I just want to stick my head into a hole moments. Ha! whoops Sorry to the sellers family.... I called MAW and we got things fixed they over nighted two things to us. The first was a little bit of paper work saying more info about MAW. The other was a package we didn't get until the next day since we we're gone to Dance class. We finally opened it and it was a cute little castle with a key and a paper telling what it was for.
Mariska Loves the key keeps packing it around all day long, its really cute. Shes dieing to know what it opens!
I got the call from her Granters that day we opened the paper work. We talked about a day to set up a visit and see what Mariska would wish for!. I asked if they wouldn't mind coming to our house, didn't really want to take the girls out into the cold if I could help it. We picked today since they work in the mornings and Sam works in the evenings for a while. Then the crazy phone tag started. The other wish granter was sick *just getting over a cold* and didn't want to get us sick. We tried to pick a different day but between us moving and the wish building being booked we decided to take our chances and just have them come today after all.
SO much fun. They came over just before 2. They gave Mariska some cute little toys and a stuffed bunny for both the girls. Mariska was so shy, so getting her to warm up after she had burned all her sillies out earlier that day was hard. She was pooped.
We have been asking her all week about what she wants to wish for, shes so silly. She wants to eat dinner with the princesses, "since we can do that anyway we changed it a little" into having the princesses give Her a makeover. She loves dressing up and getting all dolled up.
The thing that came to her mind first when she was being a goof ball was she wanted a Peanut butter bird! I have no idea where this kid comes from, hehe. I asked her "so you want a live bird covered in peanut butter? :S " " hmm no" " how about one made of chocolate that you can eat?" " hehe yeah"
And for the just in case she doesn't get the first wish she wanted to swim with the "darfins" dolphins * but has to be 6 to do that one too! gesh* I asked her so you want to get INTO the water with them so they can pull you right? "yep" "oh *scared look on her face* oh nOOO! that would be kind of scary" "me how about you can give one a kiss and pet them?" " Yeah!!"
The warm up get to know you games pretty much reminded her she wants to do all those other things and she wants to do them now. mixed with oh boy you have a cold hasn't been sleeping well and need a nap, Made her get bored pretty fast. Ha
One of the granters said let me see about the peanut butter birds. She has family who makes chocolates and asked them what they could do and if they could get it done by 5 that night so they could give it to Mariska! think they we're sure about it, but said yes!
So after we did all the paper work, man there's a lot of signing on a travel wish! and picking out the right photo of Mariska they left coming back later
They had made cute little chocolate covered peanut butter cream filled birds! They we're so cute! Mariska took a bite and said " this is perfect just what I was thinking!" Penny candy Chocolates said they thought they came out so cute the are going to sell them for valentines day! Mariska helped create something pretty darn cute. SO much fun.
So We are going to Disney World for a week the end of April is our plan! and to stay at Give kids the world. We asked how much we should save for spending money, they said that's the beauty of MAW its all payed for and they will give us a card for gas food, and all the other goodies. Sam and my jaws just dropped and we tried not to break down a cry. Its going to be an amazing trip. We cant wait! I'm a little afraid about the long flight with two little kids and Kamiah being so young. But its going to be a BLAST! Thank you SO much Make-A-Wish. We are so grateful.
Loving her new Shirt and Hat. shes been pointing to the Make-A-Wish logo on the box saying they are going to give her a wish all week. Now its really going to happen!
both annoyed with the flash.
Forgot to get a picture with both the wish granters. This is Kimberly