wednesday

last night was a rough night for makenzie. one of her iv's in her foot failed so they had to put it in the other. the foot that the iv failed on was huge and puffy. it felt like a balloon blown up. i hated that. this evening the same thing happened with the other foot so they had to move the iv into her hand. my baby now has 2 iv's, one in each hand. she hates it. she only wants to suck on her fingers. during the day she did great. she was smiley and comfortable. they weighed her tonight- her weight.... 10.5 lbs!!!!!!!!!!!!!!!!!!

whoooo hoooooooooooooooooooooooooooooooooooooooooo!

she is growing. considering she checked in the hospital last week and was 8 lbs we are so happy. she started getting formula through her gtube today. she seems to be doing good so far. its very interesting to me to see all these new things with my child. i have a on/off switch (so to speak) on her belly. its really more a lock and unlock but still, its cool. I'm learning those kinds of things are better to be viewed as cool other wise ill break down thinking she has this gadget coming out of her belly.

i got to hold her this afternoon which was wonderful for both makenzie and myself. we both love this time and cherish it so much. i kept making this girl smile all day, it was awesome.
makenzie got a blanket today, it was donated by some amazing person. its really cute, pink fleece with flowers! everyday is another day I'm learning how i will be caring for my child at home. i am learning more about SMA and what is happening with her body. she is doing better and i couldn't be more impressed with her will power to do anything.

I'm always learning new things about SMA-- there is so much information out there, from one extreme to another. the thing to remember about SMA is every child is different. what might happen to one may not happen to the next. click here to learn more.