3 Pounds and 3 Inches

We're here at Mayo. We pulled in Monday afternoon and got right into the Ronald McDonald house which was a blessing. It's a little like being "home" - at least it feels comfortable and familiar. There was a dinner brought in by a church tonight with homemade pies and cakes with homemade ice cream... a definite perk! :).

Well, yesterday was a very full day - we were at the clinic from 8:30 - 5. We learned appt. are a flexible thing here when we finished her first appt. an hour after we were supposed to be at the second. But I have to say, we never waited longer than 15 min. which we were very grateful for. Everything is so organized and efficient. First was a hearing test which was inconclusive but was followed up today. It's hard to tell much yet because she is so young, but she is for sure hearing medium to loud sounds. They'll continue to test as she grows to learn more specifically what she's really getting. Next we went to Ear/Nose/Throat. They are not planning to open up her right nasal passage until she's 2 or 3. It can close back up if they do it when they're real small. Also, they put a scope through her nose and her vocal chord is still paralyzed - so that's still a wait and see as well. I'll be bringing her back at the end of the month for a swallow study - they couldn't get her in this week. Next was plastic surgery. Her neck is healing beautifully, and the doctor was very pleased.
In the afternoon we saw neurology. She was measured and weighed - she's 23 inches (gaing 3 since birth) and about 10 1/2 lb.s (gaining 3 since birth). We first talked to the nurse practitioner and then the doctor so that appt. took awhile. There are a few follow-up tests he wants as well. They're concerned with seizures, but she didn't have any when she was in the hospital, and to our knowledge she hasn't had any. But they still want to make sure she's doing okay. Then we ran around for an hour trying to find the right desk that had called us back with some further instructions about future appt. (ended up being ENT) and then we came back to the house.
We had her first appt. at 8 this morning with gastro regarding her g-tube to see how that was going. We talked with the doctor there and later in the morning met with a nurse who gave us some really helpful info. regarding care and when it needs to be changed, etc. After gastro we had an electrocardiogram where they put little stickers on her and attach what looks like mini jumper cables - it took about a minute or 2 and then they take off everything and she was done. She just layed there and smiled, content as could be. Then she had a chest x-ray which went really quickly as well. After lunch at a Greek restaurant, Aaron brought her back for her echocardiogram and hearning test, and I came back to the house. Aaron said she did great though. Tomorrow morning we see the cardiologist who will put together the tests/x-ray she had today. Then tomorrow afternoon we see a dietician for her feedings, ect. SO FAR we just have the 2 things tomorrow - but as we're learning, they commonly add things on (i.e. the dietician was added today). And on Friday we have 2 appt. with genetics in the afternoon and will then head home.

Payton has done REALLY well for having 2 straight days at the clinic. She's been in her stroller where she can lay out pretty good and will either sleep or kick around if she's awake. We've been thrilled. She's been a little trooper, and we're so proud of her. She continues to charm the nurses - as usual :). It's been fun to see her be more active when she's awake, and she'll smile more. And she's getting a lot better for her baths. I forgot to bring baby wash; so last night I found the mildest soap I could - Ivory dish soap - and gave her a quick bubble bath. She didn't break out into a rash or anything. I don't think I caused any terrible harm to her :).

It definitely does not feel like it's been 2 months since we've been here. It feels like hardly any time has passed at all. We're hoping to head over to the hospital tomorrow to say hello to the nurses on her former wing - hopefully a few that we had consistently will be working. We're excited to see them and show them how she's grown.

Thanks to all of you for praying for us and for her. We continue to need prayer. Being here is a reminder of the long road we have in front of us which can be discouraging at times. Already we have more appt. scheduled, and I'll be coming back for a day the end of Aug., beginning of Sept., and in Nov. One of the most precious things to me, though, are the friends of ours who have kids praying consistently for "Baby Payton". It's such a blessing to me know that kids (who have such great faith - often more than us adults) are praying for her. And I know that has to be a delight and joy to our heavenly Father as well. We'll update again as we learn more this week. Much love! Aaron, Heather, and Baby Payton :)