Tuesday, September 15, 2009

what's going on with Grace?

I know I haven't posted much recently...I have had a hard time justifying sharing my frustrations and disappointments (that I have been feeling concerning Grace and her development) enough to write while heart friends are losing their earthly battles, receiving terrible news, and just plain struggling more than what seems fair. It is so hard to see so many children struggle and go through more than what most adults go through in their entire lives. These little children truly are amazing and very special spirits that teach us oh so much.
I recently had a great conversation with one of Gracie's physical therapists that put things into perspective for me. We decided that Grace is more like a six month old developmentally, then she is a 14 month old. Really, Grace was so sick until after her second surgery in April that she didn't have energy or strength to focus on much more than healing her body.

We had an appointment with cardiology yesterday and Grace is doing relatively well---we just need to get her off of some of her diuretics, especially since they are keeping her from even being refereed to GI about placing a G-tube. So what we are planning on doing is weaning her off of her afternoon dose of bumex, if by the end of the week she responds with increase oxygen needs, coughing, etc. we will get her into the cath lab soon to coil off some more collagulants (enlarged veins and arteries). But if she responds well, then we will continue to wean off of her other diuretics.
Gracie is now 30 inches long and 15lbs, so she is still her long skinny self. Dr. Jou wants me to try increasing her calorie content again from 24 kcal, to 27 kcal. I honestly don't think she will tolerate it but who knows. I'm anxious to get a g-tube placed, I've heard that kiddos just gain more than with the NG tube.

Gracie is rolling all over the living room these days. Its fun to see her actually try to go and get something that she wants. And if she can't reach it, she will let us know. Grace has started vocalizing so much more now, she just says ahhhhhhhhhh, dahhhhhhhhh, ahhhhhhhh, dahhhhh over and over again. I love it! We are working so hard on mastering sitting, Grace hates it, but is doing quite well. So far she has sat up for two minutes straight before tumbling over.


The Simmons Family said...

Hang in there.. it IS very frustrating at times. Owen butt scoots, but can't be put on hands and knees without collapsing. Walking will be in the distant future as well.

Owen is a chunker on the NG... but I'm pretty sure he is the exception. We do 22 cal and he gets 1000 cals a day. We get the Gtube tomorrow... yikes. I hear it's great because you can actually blend up REAL food and give it to them. I can't wait to steam up all kinds of healthy veges and oils and inject them.. I'm sure something other than formula will help him feel that much better.

I hope the weaning of the diuretics works out!! Praying for you Grace.

cici said...

For all little amazing Grace has been through she is at the tops in her development. I know it is so hard not to compare with other babies her age, but it is a big waste of time, energy and causes needless anxiety and it does not even matter in the long run.
She will surpass others with her kind and gentle heart and pure sweetness. Her face is that of an angel. Enjoy each precious milestone and how far she has come because of you.

Megan said...

I'm glad to hear an update on her! Not that you need justification, but I can understand how you feel and I don't quite know what to do about it myself. It can be stressful to want your child to be more advanced than they are. I hope she continues to improve and that eventually she'll hit a point where she makes amazing strides and just shocks you. Keep smiling.

madelyn said...

I stopped by from Paul Cardall's site. My daughter Ava has complex heart defects and was severely developmentally delayed for four years. Check out our story of hope at www.caringbridge.org/visit/avab for a glimpse of the miracles of God.