Mariska has had a little bit of a rocky few months. We played the game of will she gain weight or drop??! Not a game I like playing with a child. Rather it be me on Thanksgiving.
*Edit* Mariska doesnt need a cath until July her year mark!! Her Echos have all looked awesome
Mariska got to come OFF of her steroids last month. Now about 6 weeks ago. HUGE for news. She was doing really well off of them. But Her white blood count has been really low. 1-2 *they want her at the normal 5* Pretty scary seeing its the yucky cold and flu season. She did end up getting sick a few weeks ago. Not super sick just diarrhea for 10 days... yeah just. It made for some long nights and a joke for the potty training. Every time we try something like this moves us way back. She will be one day soon. I have hope.
She worked so hard to get to 27 lbs then to see her drop 2.2lbs in those 10 days was so heart breaking! She was still not really wanting to eat but just eating so she had enough energy to do what she wanted and nothing more.
After those 10 days She started eating I mean EATING again. eating like a teenage boy. haha Its awesome to hear the words I want more of *something* please. Or I"m still SOoooo hungry mommy what can I eat. It blew Sam and I away. Who changed my child over night?? Guess it was just those nasty cheek cubing drugs. She went from two bites of what lets say pizza to eating 2 slices of a med. pizza. Still just watch her eat and thing WOW! Shes eating like a normal kid! and no feeding tubes. Hard not to say a little prayer of thanks in my heart.
I was fear full of her clinic visit Yesterday. Thinking ohh boy here we go. They will push the G-tube again cause shes lost some weight. ugh. She got on the scale and gained!!!! I was so happy I almost did a happy dance. 12.45kg Shes on the way back up. I'd better *knock on wood* ha I want this to stay.
She doesn't need to wear her mask anymore and we can finally sneak her into places that aren't very full. What something normal??
I'm a little over due for pictures, but thought I should get a post in before time slips again. Mariska had a fun St. Patricks day. The leprechaun came while we we're away and made a HUGE mess in the kitchen. She didn't think it was very nice thing he did so she helped me clean it up. The Other night while we we're getting ready to say pray. She said wait I need to say something. We look at her and she being the goof she is said " I am a robot I have to talk like this" something about the cows are making her to save them. We tried SO hard not to just roll on the floor laughing at her. Shes full of all kids of silly things.
We're praying for those in Japan. What a scary time. Your in our hearts.
2 months ago
