the trip

Papa Sid is our hero! He came to pick us up in the plane, so he turned a 20hr trip into a 6hr trip.

Both kids did very well. Athan tolerated his oxygen fairly well (except for the last 30 minutes), and Morgan tolerated her car seat fairly well (except, of course, for the last 30 minutes). Here's a couple in-flight photos (cardio has put Athan on oxygen until surgery, thus the tubes):

made it

We got everyone to Clovis and settled in. Just wanted to let everyone know. More details to follow as soon as I have a bit more time.

at long last - our Christmas plans

It has been a very long week. Our plans all semester long have included a trip to New Mexico for Christmas. When we saw cardiology last week, however, we found out that Athan's heart condition is more serious than we thought, and suddenly our plans were called into question. We have gone back and forth a thousand times between deciding to go home and stay here. We've shuffled through a myriad of factors, talked with doctors, prayed with friends and family, and changed our minds over and over again.

Finally, we have resettled on going home, but we have modified our plans to make the trip safer for our boy. We are doing a very scaled-down version of our trip home: We regrettably will not be making trips away from Clovis, and our appearances at big-group gatherings will be more brief than usual. Athan's cardiologist has put him on oxygen to prepare him for surgery, and we will be staying fairly stationary to make sure we can be consistent and keep him healthy.

We will be in Clovis by the end of the week, and will stay through the end of January. I will do my best to continue to update this blog throughout the trip.

10,000+

Some time in the past week or so, we passed ten thousand hits on this site. Ten thousand times you have thought about us, checked on us, and many, many of you have prayed each time you've read.

We remain grateful beyond words.

new skill

As described in earlier post:

another appointment report

Long day yesterday. We were in Lex from 9 to 4 for Athan's appointments. We saw endocrinology, cardiology, and the NICU Grad Clinic.

Endo - We'll hear from her soon about the lab results (which tell us whether we need to tweak his dosages or not). Otherwise, all is well.

Cardio - We repeated his ECHO and EKG, which Dr. K says have almost no change. He did say that the presure in his right ventricle is higher than he would like, so we'll probably be moving the surgery up a little. We thought his heart surgery would be near his first birthday, but now it will probably be February some time. Dr. K will discuss Athan with the surgeon on Monday, and we will hopefully hear more specifics then.

NICU Clinic - This was just a general follow-up. The did developmental assesments, we spoke with a dietician, and saw a pediatrician (Dr. Desai, who is wonderful!). No surprises, really: He looks good. He's still behind on some developmental milestones, but he's catching up. Same with weight gain.

Laurie will be here any minute for our last PT session before the C-mas break.

new skills

Athan is doing SO many new fun things! He can roll over from his tummy to his back, hold and shake a rattle (in both hands), and push a button on one of his toys to make the music play. Just yesterday, when Laurie was here for PT, he began to imitate her shaking her head back and forth. She would shake her head at him, and he would wait and study, then shake his head back at her. He caught on very quickly, and now he seems to think this is a great way to "talk" to anyone who wants to play the game.

He is also:

making "raspberries,
flirting with Lucy,
reading (per sister's recommendation),

and stealing Mom's books so she will stop reading!

Celebrate! :)

We had a round of follow-ups at UK today.

Opthalmology: His left eye is turning in a bit, so we have to patch his right eye for an hour a day.

Genetics: Same - nothing conclusive, tests pending.

Neurology: Here's the good news!! We get to wean him off of his phenobarbitol (which will take about 4 weeks), and if that process goes smoothly, we never have to see neuro again! :) Woo-hoo! :)

our kids

Athan is doing really well. We have some more follow-up appointments at UK tomorrow - neurology, opthalmology, and genetics. We'll be in Lex most of the day, but I'll try to get an update posted tomorrow evening or Thursday morning.

Laurie has scheduled the last few PT appointments with Athan before we head to New Mexico for Christmas. I'm a little sad we won't get to see her so often - for Athan's sake and mine! We'll work hard on his exercises while we're home, and start back up again with therapy as soon as we hit Wilmore in January.

Morgan seems to be a little more content lately. We've tweaked a few things with her routine, and changed a few bad habits we had all gotten into, so toddler-life is a bit more level these days.

I'll let you know how the appointments go asap.