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.

today

Athan is 6 months old today.

Praise God, from whom all blessings flow...

He waved!

Well, I guess it's more accurate to say he imitated Amanda waving at him. Several times. It was soso sweet!

Morgan is recovering from a pretty severe case of cabin fever. We got to go play with kids today, and she is currently playing with Savannah (who keeps the kids for us every Tuesday afternoon - whew).

good times!

We sure missed seeing all our family for Thanksgiving, but what a blessing to have such good friends here in Kentucky!

On Thursday, our friend Sarah hosted us at their house for a beautiful dinner, featuring a gorgeous turkey and all the extras. SO good!

Today we got to go into Lex and have brisket (ah, Texas...) with the Sims family. I dropped my corn in the brisket sauce, and Morgan broke a snow globe. oops. In spite of the Strebeck girls' faux pas, it was a fun time for all.

We'll probably spend the rest of our break working on our various ongoing projects: Ryan is building a new part for Athan's crib, writing papers, and reading for school. I'm working on Christmas shopping, plus preparing to pack and clean before we leave for 6 weeks. The kids are working really hard on being kids, and so far so good...

back from the blues

It has been a while since our last update, I know. I wanted to start this blog with some blathering about semester's-end busyness and holiday prep. It would have been about half true. Mostly, I've been feeling a little heavy, but I couldn't articulate it well enough to try a blog. The weightiness of my grief and my gratitude seem, still, too much for words. In light of the depth of what I have been thinking and feeling, another post about PT progress (which remains really good) and VIPS visits (also good) refused to materialize when I would sit to write.

But I am emerging again out of that heavy place. So far, I feel like this is healthy - the way the sadness comes and goes like the tide. I do not wish to try to be sad when I'm not, nor try not to feel sad when I do. If I don't muster or deny, maybe I'm emotionally maturing. Maybe. Part of this effort to grow up comes with parenthood - Athan and Morgan need me to learn to model good things for them, including grieving and giving thanks. Often simultaneously. I hope I can do it.

As to the daily stuff: Athan continues to do really well with his physical therapy. We will be recruiting lots of our friends and family in Texas and New Mexico to help us do his "workouts" while we're there for Christmas. Morgan keeps bumping into a world that doesn't bend to her every wish, which keeps surprising her and making her mad. We're doing the best we can to help her navigate the hard work of being a toddler. I am doing what I can to get ready for our trip home for Christmas, and Ryan is diligently finishing his semester up - couple big projects to go.

Have a Happy Thanksgiving!

one of our best conversations

check this out!

We were playing in the floor last night, helping Athan work on rolling over. I helped him over onto his tummy, and he just popped his head up like he's been doing it for months! Way to go buddy! He held his head there for a minute or so, then rolled back over onto his back with no help. So exciting!

PT today

Laurie just left a while ago, and Athan did really well again today. He is really beginning to work hard at keeping his chin down when we do "baby sit-ups." He still has significant lag, but he is starting to work harder to overcome it.

I wish you all could meet Laurie. She is SO very good at her job. We are so thankful to have her in our home for any reason, and so glad she's working with our Athan.

attempted answers

We frequently are asked or hear about some recurring questions that we may not have addressed. I’ve been meaning to write this for some time, partly for you and partly for me. It always helps me think things through when I sit to write about it.
Athan’s medical troubles are rooted in his genetics. As far as we know right now, none of the things that I did or did not do during pregnancy could have caused this. My prenatal care was good. The biggest challenge for me was hyperemesis again, which just means I was sick around the clock for months. However, this could not have caused Athan’s problems. None of the genetic testing has uncovered the source of his sickness. It may be a fluke - a one-in-a-million random genetic mutation. It may be something inherited from Ryan or myself. We don’t really know, and we may never know for sure.
We do not regret having a home birth or using a midwife. I think both of my experiences of labor and delivery were better for me and baby to be at home, and choosing home birth was in no way responsible for Athan’s condition. We are attempting to walk forward while negotiating the tension between natural treatment and medicine (we are fortunate to have access to such wonderful care from both!), being as informed as possible about both as we make decisions.
We still do not know what any of this will mean in regards to Athan’s quality of life. We have many, many questions about what his life will be like. At first, we were only looking forward a few minutes at a time. Then hours. Then days and weeks. Now I feel like we know what the next few months hold. When we are able to get more of a picture of what the years ahead may hold, I will try to write about it.
We are also not sure whether we will choose to have more children or not. Further genetic testing may be able to tell us what chance we would have of any future children having the same troubles, which would inform our decision. We both are open to all of the possibilities. We may have 2 kids. Maybe more. Maybe more of our own, or maybe adopt. All are options we will explore over the next few years.
Thanks to all who are praying us through this time and will walk with us through whatever the future holds.

schedule change

Athan has outgrown his eat-every-3-hour schedule. :) He is now officially moved to a 4-hour schedule. If you've every had an infant in your house, you know how different the world is for all of us now. :)

happy Halloween

Athan had the beginnings of a cough, so he stayed home this year. But Morgan... well, see for yourself:

The kitty-cat:


First taste of "pink" (as she called it):

With her friend Margot, the punk rocker:

WOO-HOO!

13 lbs, 6 oz! (now sing that and dance around a little)... That translates to 30 grams a day since we were last at UK (about a month). They wanted him between 20 and 30 grams per day, and he was only at about 17ish before this month. But not anymore! His rate of weight gain is finally on track. Yeah!! :-)

Can you tell I'm excited?

Once again, more numbers that show how you all are praying our boy to good health. Celebrate with us, friends and family!

(oh - we also saw Dr. Irene. All is well. No change in dosage unless labs come back too high or too low. She also taught us some how-to's as we prepare to travel home for Christmas, including how to give an IM emergency dose of his hydrocortisone if we needed to).