Thursday, July 24, 2008

"It's the heart that really matters in the end" line from Rob Thomas song "Little Wonders"






The days have been filled with activity of one sort or another the past several days. Just trying to cram in as much as we can for our out of towners. They are very low maintenance and we are all just enjoying each others company. A huge crowd to go places with but we manage. Everyone is fairly flexible. The kids hold up pretty well. In fact, at the end of the day you will probably find it's an adult crying rather then one of the kids! My brother in law Pat is just flying in today from Rome. Not Rome, Georgia or Rome, New York but Rome, Rome as in, the Vatican Rome. Yeah, poor guy has to travel to crummy places like that often on business. We really feel sorry for him. So he has missed some of the goings on up until this point. As well as Jess and Caitlin who have had work all day. Taylor has managed to join us on a few outings. All in all we have had a great time just reconnecting with everyone. The kids have a blast together and that's just pure joy to watch. As for Miss Zoey. She continues to amaze us with her go with the flow personality. Long days for such a tiny thing but she is no worse for the wear. She loves to be out and about. She is such a people person and loves to just take in all that goes on around her. She has missed most of her naps the last couple days and you would never know it. That smile on her face remains a constant. Her O.T. is on vacation for the next 2 weeks so that frees up 3 mornings a week for us. I work on things throughout the day with her so we should be fine. Her vision therapist comes once a week so at least we will have that and Christie works her fairly hard. Zoey is starting to lift her little bottom in the air when she's on her tummy more and more. You can tell she would love to push her body forward to get to something but hasn't quite figured out how to do it. Her left arm continues to be a little more "involved" in things. Christie and I were talking yesterday and we sure hope that her left will hand will become a "helping " hand and if we are really lucky, even more. With Zoey's determination, I am going with the latter choice. Zoey is still working on her teeth. Drooling like crazy. We still are at a count of 4 with at least 4 others on their way up. She is kissing like crazy and waving like mad and we think she is giving hugs. The jury is still out but more times then not, when you say, "Can I have a hug?," she leans her body into you. We'll keep you posted. We did have a cardiology appointment yesterday with Dr. Bedran. Who again, I must say, we love. The whole department is great. Other doctors, office staff, technicians all of them. Every time we are there, everyone is so glad to see Zoey. As much as I hate going ,it is so heart warming to see how much people love her. They comment on how she's grown, her pretty hair, her cute smile. They just love her. And yesterday she turned on the charm for them all. Our NICU visit too. Smiles, waves, kisses. She played shy and coy. She was just darling. You can just see it in all of their faces how thrilled they are to see Zoey in such a good place. O.K., back to the appointment. Well, it looks like her little heart, which wasn't so little for awhile, is back to being little again! Not quite back to where it was after surgery but at least it's going in the right direction. Her heart enlargement is a common side effect of ACTH and it was always assumed it would return to it's prior state but assume was the key word with Zoey. With her we never, ever assume. Anything. Dr. Bedran's exact words were, she thinks we were out of the woods. My exact words to her were, the reason I loved her was that she never let on we were even IN the woods to begin with! Dr. Bedran never guesses, surmises, or projects. She just lives in the moment of where a patient is right then until we need to kick it up a notch. Let's face it. Most of us with medically fragile kids know the deal anyway. She knew Zoey was in the woods. I knew Zoey was in the woods. No words needed to be exchanged and in her words ........ "We were in the woods dropping bread crumbs, finding our way back" Love that woman. I truly do. So Zoey's perfect heart repair that she received last August the 13th is on it's way back to that state. We are sure happy for that. Another obstacle conquered by the brave and mighty little one, Zoey.

*Pictures from the beach: Zoey giving Taylor love, Zoey kicking back enjoying the sun (looking a little like an old woman with no teeth!), Jake surfing, kids digging for sand crabs, (notice Jake in the back), my niece Sophie the mermaid etc. and of course daddy and his girl!

4 comments:

amy flege said...

your zoey is a doll! that one picture of her with her leg in the air reminds us of our mayson!!!! I hope you dont mind i linked up with you on my blog!

Dana Ragle said...

Heather,

It was so wonderful to see you yesterday...you and your perfect daughter always seem to show up when I am feeling sorry for myself or stuck in a bad place. Seeing the g tube on another little one made it more real and okay somehow...thank you for that.

By the way, Carter's surgery was a success and he is recovering quickly so far! Aren't our kids more and more amazing each day? He was extubated tonight and will start feeds hopefully tomorrow through the g tube!

Thanks again for chatting...and seeing Zoey made my day (my husband's, too...whom I forgot to introduce to you...maybe next time we run into each other!) Seeing her smile and wave like that was just what i needed! How did she know? :)

With love and appreciation,
Dana Ragle

Anonymous said...

Glad to see everyone having fun at the beach. Zoey is certainly Daddy's girl!

Love from Pittsburgh

Bluebelle

Kele said...

Heather, sure have missed you guys. So happy to see and hear about all the fun you and your fam are having. TICKLED to death to hear about the doctor visit!!! Yippee!!!
I sure hope in November that I can get some of those 'kisses' Zoey is so eager to give out (and a hug, and a wave, I can't wait to get them all!!)
Much love from Texas!