Friday, May 7, 2010

a brief update...

Thank you for the emails...I do think some of them are going to Connor first--for some reason when I started this blog, his email is the one that is on the "dashboard". My email is I'm so completely clueless with computers--not sure how to change it.

Anyways, Gracie is doing pretty well. Her foot/leg pain is daily at this point...sometimes excruciating, sometimes pretty manageable. We are just giving her motrin or tylenol to alleviate the pain. Her bone scan likely was normal because I have heard nothing back, nor have I called to begin more testing. The pediatrician we have at Mayo is hesitant to give Gracie more meds anyways because of her heart, so if we can get by with this for a bit, we will do so.

We are noticing some shortness of breath, decreased activity level, more sleep. When she runs across our yard, she is done for. She can play and play for hours, but any running or walking just wears her out. She can go upstairs and need to be carried back down...not normal for a 3 year-old, that's for sure. There has also been a couple of mornings that we have a hard time warming up her little body.

We are having fun watching her learn, listening to her sweet voice. She's a happy little girl, full of spunk and sass! She gives big, wet, long kisses, cuddles lots, and loves to role-play. She's always playing with her babies, who happen to look a lot like Buzz and Woody from Toy Story, she loves being read to, watching movies, and just hangin' with her mommy.

We also aren't really all that concerned about potty training or pacifiers! All those things that we rushed our other children out of are really no concern at this point for Gracie. She sometimes wears her big girl panties (her favorites are boys briefs because that's the only toy story ones we could find) but most of the time asks for a diaper. Big deal? Nope. Our house has never been messier or dustier...big deal? Nope. She doesn't know her ABCs and cannot count to 10...big deal? Nope. We just desire for her to enjoy life, to know she is treasured beyond measure. We love to experience the vast amount of joy she experiences--it's so hard to describe the feeling we have with her of holding onto each moment, not knowing if some of these days won't be around for long. I feel like I'm actually sucking her in, trying to freeze different moments. She told me last week..." Me get big, me pway watch? Ok? You watch? OK? " Will she get big? I don't know. Will she play soccer? not likely. Crushed dreams at 31/2--tough one to take...I sobbed. Then we went outside and played soccer...not crushed dreams--but possibilities. We have not given up hope for a future with Gracie...not in the least, yet we also have been hit with a brick of reality these past couple of months. It seems like we are on the fence right now--hoping and praying for life, yet living and breathing only for today. Maybe that's the way we should be living anyways...who knows?


Jean said...

Gayle- you are incredible Mom and an incredible woman. You write with such passion and it comes from your heart. Wrap yourself in the arms of the Lord- he is the great comforter.

Have you thought about getting another opinion. I am shocked with our little guys surgery- However I really have no idea what was done or the details.

With God miracles happen- maybe someday Gracie will be playing soccer!

Praying for her, for all of you.
God Bless,

Anonymous said...

I think you are onto something with your last sentence. We almost lost our oldest son in January. So close...and we were given a very guarded prognosis by his doctors as well. It is a different kind of illness than Gracie, but life threatening nonetheless. And I find myself doing what you describe. Being really happy for every moment. Knowing that I made a difference in his life and being so thankful for his presence in mine. I think this may be the way life is meant to be lived.

I think of you and Gracie often and pray for good health for her little heart.

A hug for you my friend.

Serving the King said...

Love your perspective on life with her!! And I will be joining you in prayer for your sweet daughter, bless her little heart!