Monday, June 23, 2008

Day +45

So while we didn't have to go to clinic at all this weekend, we were definitely still busy. Gracie's med schedule is still so incredibly demanding that I'm almost always busy giving them to her, or setting them up to go through her IV or unhooking the IV med and flushing her lines.... its a true race against the clock. Yesterday we somehow managed to get pretty far behind and Mommy and Gracie didn't to bed until after 3:30 am! Yucky. So Noni gave Mommy a break this morning... and so I took a loooong, much-needed nap.

Gracie has had a pretty good day today, despite the late bedtime last night. She spent a lot of time playing, took all her meds without much trouble, and was her sweet little silly self most of the time. She took a few good naps and even took a bath.

So tomorrow is our second to last ERT treatment, regular lab draw, and a check-up visit with Dr. Orchard. I'm definitely looking forward to hearing how he feels Gracie is doing and what we need to expect in this next phase of recovery.

So I know that its been a while since I posted any pics of our girl. I've taken a few, not many (bad mommy) but I haven't had the chance to uplaod them yet. I promise to try and get around to that later tonight or tomorrow.

We miss you all and appreciate all of your love and continued prayers. Please pray for our friend Rylie who had to go back into the hospital with breathing trouble. We hope she cazn come back here and play with us at the RMH soon.

XOXO

2 comments:

Mr. Noodles Panini said...

Hoping all went well today with Dr. Orchard. Love and Miss You Guys!!!

Uncle Mack

lola said...

I am happy to hear that through this the lil' monk had a pretty normal little girl day.

Hope all went well with Dr. Orchard and we got some good news!

Love you.

xo lo