Athan slept!! (and Ryan probably didn't)

After toying with many of the factors that may have been contributing to his sleepless nights, I decided to try and switch his once-a-day dose of Genotropin (growth hormone) from 6 p.m. to 6 a.m. It worked. Apparently, the further he gets from that medicine, the better he sleeps. I think this is newly manifesting because we recently got off of his phenobarbitol. Up until two weeks ago, he was getting a sedating medication every time he got growth hormone. I think we're seeing some new side effects that were "hidden" by the extra med.

So this morning I gave the growth hormone at 6 a.m., and he didn't nap well until after noon. Still, it is better for him and for me that we both slept well last night.

Morgan got to be a radio star this morning. Her Grammy does a weekly radio appearance for the coffee shop, and Morgan got to go with her and make her very first public performance. I believe she said "Go Wildcats, go Uncle Layne!"

Ryan is back in the U.S., but he was too late to get a boarding pass for his connecting flight out of JFK. I'll post again when I hear from him about the next step.

movie, long night, and a meltdown

Athan didn't sleep much last night, but he is his usual smiley self again today. Morgan had a major meltdown (tears, sobbing, confusion, frustration) this afternoon at nap time, but she is sleeping soundly now. Apparently, Athan doesn't need any sleep and Morgan always needs more. :-)

Before all that drama, Aunt Loy and Uncle Joe came to keep the kids so Mom, Tim, Logan, and I could go to a movie. SO fun! I love going to the movies, and as you can guess, tis a rare treat these days. Thanks guys! :)

Christmas pics

Thanks Josh and Aunt Brittany for the great pics!

third

A tooth on top. I am, of course, glad he is getting his teeth. I will miss the toothless grin, though! :)

more eating, but less sleeping

He really likes cereal. He really dislikes his oxygen tube.

Amy, Cap, and Ella visited today. Morgan and Cap had lots of fun!

Morgan and I also got to run up to the gym and catch part of Uncle Layne's basketball game. Morgan got her picture taken with Wiley the Wildcat, played with Tom and Lori, and got to see Nana and Papa, too! What a night.

oh - a LAST among the many firsts

I almost forgot - we gave his LAST dose of phenobarbitol last week. Yep, we're done! :) He seems to be doing just fine off the medicine. It was a precautionary anti-seizure medication, and he still has shown now signs of any kind of seizure activity. Woo-hoo! :) The weaning process took a whole month, and I think he was fussy sometimes because of the withdrawal. Also, because he was used to getting a does of sedating medicine before bed, it may be contributing to him not sleeping as well. Still, being off the med is good news, no matter what else is going on! :)

another first

Cereal. We put Athan in his high chair and fed him his first round of baby cereal. It was a big hit! He seemed really excited about it. He also didn't seem to have any trouble with the swallowing, which was a concern because of his low muscle tone and bifed epiglottis. No tongue thrusting and no grimace - just a little cereal on the cheeks and the usual Athan smile.

He is doing really well. Night time is a little rough right now. He isn't sleeping as well - I think the dry air of the desert in the winter, plus the extra drying factor of the oxygen, just bug him. He'll go to sleep alright, but wakes up often, usually rubbing his nose and eyes. He's having a tough time getting back to sleep, which I'm not used to, so we're both pretty sleepy. I'm ready to get back to see cardiology so we can hopefully stop this oxygen and get some sleep!

Morgan is being a very helpful big sister, and seems to enjoy talking to her "bubba" more and more. "Look, he's smiling at me!" she'll say with typical Morgan glee. She is also having so much fun with all the grandmas and great-grandmas and aunts and uncles and friends who want to play with her. Last night she got to go to the basketball game to watch Uncle Layne, and I hear she enjoyed making Uncle Brent and Aunt Jenn chase her around!

Ryan is in India, still. He took a class through the seminary that includes a trip to a ministry in India that has a seminary and an orphanage on site. I hope he'll write a blog when he gets back to explain the trip more. I've talked to him three times, and it seems to be going well. The team has been passing around a tummy bug, that has knocked them out one at a time for about 24 or 48 hours. Ryan had it last we talked, but I think he's feeling better. They teach classes at the seminary in the morning, and help with the kids in the afternoon, I think.

other tooth

Finally, it made it through. Yesterday afternoon.

He's still fighting the oxygen off and on. Not sleeping real well.

Morgan is great. She had lunch with Uncle Jordan and Papa Sid today. Doesn't get much better than that!

My mom did the tough part of the night shift last night - thanks, Grammy!

teething

Yep. Teething. We officially have 1 tooth, and another right beside it that won't be far behind. I think they're hurting him pretty badly, and we've had a couple of long nights because of it.

Both kids are asleep - I'm going to nap! :)

able to write again, I think...

I know it has been a while, and I have several blanks to fill in. I'll at least get started:

Christmas, scaled-down though it was, still came with a little craziness. We had to work at the logistics of getting Ryan and Morgan to family things on time while Athan and I kept his eating/sleeping/meds schedule on track. I think we did fairly well - he only had one really fussy night. And Morgan... well, I just wish you could have seen her this year! She is old enough to open her own gifts and get excited about all of them. She got to spend time with so many of her favorite people, and play, play, play. I think it has been so good for her.

Athan is tolerating his oxygen fairly well. We use some medical tape to keep it from shifting around too much, and to keep him from pulling it out every few minutes. I think the tape bugs him a little, but it also seems to keep his oxygen tube still enough that he forgets about it. I'll write more detail later about the whys and whatnots of his cardio stuff.

I have really enjoyed seeing so many faces - some I haven't seen in a year! It's good to be here.

Ryan is off to India. He left here last night, stayed with friends in Amarillo, and flew out this morning. He'll be gone until the 15th. Man, are we gonna miss him around here! Still, we are excited for him to get to go.

Ok, Athan needs me! :) More when I get a sec...

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...