Friday, September 25, 2009

Another Surgery

Today we are at same day surgery, but it isn't for my sweet little Gracie. Morgan is having some major dental surgery done today and oh how it pulls at my heart strings to send her off. I think in a way it is a little harder with her---she is older, more aware, and can actually verbalize her fears and anxiety.

Morgan has very poor enamel on her teeth, so she is having four crowns and a root canal---more work than I have ever had done on my teeth.

She was so brave as they wheeled her away in the wagon. Morgan gave me a big kiss, held on to her puppy, Yuppie and off she went without a tear, though lots of apprehension in her face.

She'll be in a lot of pain when she comes out....poor thing.

Sunday, September 20, 2009


It has been a while since I posted pictures, get ready!

Inside playing.
Outside fun!

Those of you who know Gracie, know that her swing is literally hers and our saving grace---unfortunately I don't think we will be using it much longer. She hangs out of it, this picture she is awake but sometimes she sleeps right through it.

Cousin fun
Look who is sitting up!! Gracie is doing great working on sitting, today she sat up for 5 minutes at a time. She has an ear infection and is still adjusting to the changes in diuretics, so she isn't as happy as normal.
Sisterly love

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.

Thursday, September 3, 2009

Prayers needed

About an hour ago I read a devastating update on a dear sweet family---The Stricklands. Their little miracle Mason is in heart failure and just found out that he is not a candidate for heart transplant. I went left my computer and attempted to do some household chores just to find myself literally sick to my stomach for this sweet family and their little one.

Please pray for them to feel comfort, peace and direction. Please pray that they will enjoy every day they have left with Mason and that they will be strengthened more than ever before.