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.
I also have a few photos!
Rejection Again. - Less than 48 hours and we are home again. Owen had another monthly biopsy and things looked great! His pressures are 2 with a wedge of 7, his echo looks ...
4 days ago