What gives this week?
We have watched Micah seize quite a bit this week. We have had to give
him rescue meds almost every day.
It makes me crazy to hear that our kids are back in the hospital again
and again. I wish that our children could move past this. We have been
so stressed out just hoping for a miracle this week.
It helps to hear about all of you and your struggles. I am sad that
our children have to go through this everyday.
Denise, I hope that your Harry boy is doing better. My heart has been
with you this week.
Margret, thanks for keeping us updated with bianca, precious little
one, I hope that Leizel gets some time to take care of herself some.
Nikki, I wanted to tell you to keep feeding Maddie, and if you have to
get that swallow test done. We have struggled with that whole process
for some time now and Micah was finally given an Ng-tube because he
was aspirating fluid into his lungs. We have been told to think about
putting a G-tube or Micky button in. I want to run screaming when the
docs talk to us about these things. We did go back to feeding Micah
thickened feeds this week because he has had such a hard time on the
Ng-tube. I also wanted to let you know that Micah has had so many
EEG's and continuous EEG's done and the docs still are reluctant to
give Micah a diagnosis of MPEI. It is so irritating because we feel as
though he matches everything very clearly.
Laura, How is your Rylie girl doing beyond the continued stress of her
feeding? Has she stopped vommiting yet? I just wanted to encourage you
to keep plugging away. I know we have felt so out of our element this
week, our prayers and thoughts are with you!

Loves to all of you and your families, we send you hugs and kisses
because we just need them! Blessings to you all...
Rachel, (Micah's Mommy)