Tuesday, September 1, 2009

mayo todayo

Gracie and headed north this morning to meet with her cardiologist. We both had a tough time getting out of bed, but around 9:30 I finally opened her door and grabbed the snuggly bundle. She's been sleeping LOTS! Especially after her weekend--it was one BIG PARTY--football game on Friday night, Big Daddy Weave downtown Charles City Saturday night, and our church's Friend Fest on Sunday--she was pooped! Actually she's been sleeping in most mornings until 9:30-10:00 after going to bed at 7 or so. Sleeping beauty! This does concern us a bit, because she has never been one to require much sleep. I was excited to meet with her doctor and hear the words "She's doing great." I did hear those words today! Gracie, right now, is doing great. Her numbers are fantastic, her weight is up, she's grown an inch--all good stuff. She's pretty blue, but it's expected, the fatigue is normal for her. Her heart has to work so hard...her body just knows when to rest--it's good.

We spoke of Gracie's future today. She will likely have surgery in December or January and it will be a big one, actually it's quite controversial amongst her doctors as to whether this is the best plan of action for her. She could do fine for awhile with no surgery, but it could wear her ventricle out, giving her a short life. The Fontan is an incredible operation for many, many heart babies, but it's not a great option for Gracie, yet likely the best option we have right now. She has many strikes against her. Her cardiologist told me they have a "10 commandments" for the Fontan and her heart and history are not meeting most of the law, so to speak. It could be a rocky road...we know that when life is crazy, is uncertain God is still the ROCK--He's still the same, Gracie's days are still numbered, and He will take her home when He is ready. We hold onto these truths with a tight grip, knowing we are in His mighty grip! I visited with my friend Chris on the way home and told her I have perfect peace--I do, knowing He is real, He is good, and His love for Gracie is uncomparable.

Back to sweet Gracie...she had a blood draw this morning and was so amazing. Usually it takes several pokes and lots of messing around, bringing much anxiety and tears. Today, she walked into the blood draw confidently, hands on her hips and pacifier in her mouth. She hopped on my lap, grabbed the turnacut and wrapped it around her arm, watching intently as the sweet lady stuck a needle in her arm. She made a little peep, then pointed to the toy box, claiming her prize of bubbles. They spilled before we made it out the door...bummer! We had a fabulous time at lunch, then shopped a bit downtown. Soon, you will see her sporting her new Crocs, with--you'll never believe it--Bob and Larry buttons!

We go back on Thursday to meet with the oral surgeon to schedule her tooth removal, then we don't go back until November 9.

Right now, things are good...super good!
I choose to live right now...how about you?
Gayle

3 comments:

Anita said...

Awesome to hear Gracie's cardio report and that things are good!! :) Kaylin goes back in 2 weeks to a new doc here, but we KNOW he's awesome for which I am sooo thankful.

Blessed Mom of Four, Now Five said...

Oh, Gayle, I'm so thrilled to read of good news from Gracie's doctor. I will continue to pray for wisdom for her doctors.

We have a friend with a child with a major heart condition among other medical issues. One day, a doctor walked into their hospital room and said, "I know what we need to do."

He was not Riley's doctor, but he was part of the team. "Something" came to him, and it worked for Riley...we KNOW, however, that wisdom comes from above!

Praying that wisdom and continued perfect peace,
Robbie

Jean said...

So glad you had a good DR appt! She is such a cutey- God bless her!

I think I will live in the present, too!!