Phew we made it to the new year. Hard to believe all that has happened to our family this past year! We we're so blind sided about this time last year. They wanted to do a cath to see if Mariska could have her fontan or if we needed transplant. Few months later we got the dreaded news. She needed a new heart the function and just so much leaking. then the real prayers started. Would she be able to get a match? Would we live at the hospital for endless months just waiting watching our little one slip away? She was so lucky to be healthy enought to be able to wait at home. But there we're countless times we almost weren't so lucky.
My last post I was beside my self. I'm better now. haha... We did a feeding tube for Misky, that should be in still but shes been eating and doing well. giving it a test to see if it can just go away.
Misky's weight has been all over the place. her high was just over 30lbs and her low a month ago was just over 24lbs. Thats a HUGE drop. Shes on the climb back up. Shes drinking Boost breeze and Kids essentials. Both have a nice 250 cals per 8 oz. Not sure how they taste, she doesnt seem to mind them to bad. I"m ok with it other then they are just loaded with sugar.
Mariska has almost stop the throwing up. Thinking it had more to do with the taste of the meds and then became a bad habit. At the peek we did the feeding tube she stopped eating for a few days. Nothing will stress a parent more then that.
Her energy level is back! Havent been able to say that for months on end. Shes dancing playing, and just in a better mood. Funny what a few extra cals will do.
Can you believe shes had her angle's heart for 6 months!? Such a blessing and answer to so many prayers.
Mariska on new years eve was done about 11 and wanted to go home. She we we're all in bed for the new year safe and warm.
Hope you all had a Merry Christmas and a Happy New Year.
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