Tuesday, October 30, 2007


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).

Monday, October 29, 2007


In addition to physical therapy, Athan is seeing a therapist from VIPS (Visually Impaired Preschool Services). Honestly, we are not sure whether Athan's vision has been affected or not. He is a little behind on tracking objects, but that may be due to his lack of head control and muscle tone rather than his eyes.

Amanda is the therapist that sees Athan, and she was here this morning. The session went well, but Athan did seem a little tired.

I just thought I had better post an update before I forgot. We focus so much on his physical therapy that I forget to post about VIPS.

Laurie will be here this afternoon for PT, and we go back to UK tomorrow to see Dr. Irene (his endocrinologist). I'll let you know how it all goes.

Oh - and Morgan slept for 11 hours last night, and she has not had an accident in a couple of days. Yeah! :)

Saturday, October 27, 2007

Guests from home

Lindsey and Nana have been here to visit this week. Lens came in Sunday evening, and left Wednesday. Nana arrived later on Wednesday, and will fly first thing in the morning. It has been so good to have them here! It is always such a help to have extra hands.

Athan has had a good week. He continues to eat well, and physical therapy has gone well this week. Laurie tried a new position for Athan, and he tolerated it well this week. He continues to improve and surprise us all.

Morgan has had a tough couple of weeks. I don't know why, exactly, but she seems to suddenly have lots of trouble with things that were going well (like eating well and going on the potty). Would you just pray her and for us as we seek to navigate the turbulent toddler-ness with her?

Also, our friends Alan and Sarah just welcomed their beautiful daughter, Lucy, to the world! She is such a precious baby girl. Congrats to the wonderful new parents! It is good news that the two of you are going to raise a child together.

Saturday, October 20, 2007


Many of you have followed Athan’s journey from the very beginning. You can skip this post. For those of you who are new readers, this is for you:
Our son, Athan, was born at home on May 29 and we were so glad to finally meet our boy! Everything was going fine for a few hours, but Athan’s condition begin to turn for the worse during the night. He would not eat, and he began to have trouble breathing normally. We called an ambulance. By the time it arrived, Athan was blue all over. He was rushed to UK Children’s hospital, stabilized in the ER, and admitted to the NICU.
The first few days were a terrifying blur of uncertainty. Our boy had lots of tests as part of the diagnostic process, and we mostly cried and waited and prayed. Then we learned that his pituitary gland was not functioning properly, and his body was not producing any of the hormones it is supposed to. As soon as they began medicating to compensate for his hormonal deficiencies, all of his vitals began to normalize.
We stayed in NICU for 16 days, then brought Athan home. Unfortunately, we had to return to the ER a few days later for a second (one week) hospitalization. The second episode was primarily related to finding the correct chemistry and dosage for his medication, which has now been taken care of.
The heart of Athan’s diagnosis is “panhypopituitarism.” It just means that his pituitary gland doesn’t work. Athan will have to be on medication for the rest of his life to artificially supply his body with the hormones it cannot make on its own. The good news is that this condition is very treatable.
He also has small holes in his heart - one between the upper chambers and one between the lower chambers. He will have surgery some time before his first birthday to patch those holes, which should permanently fix his heart problems.
There are some abnormalities on his EEG, which means that there may be some neurological concerns for Athan. He is on an anti-seizure medication as a precaution right now, and we will keep watching to see whether he will come off that med or not. He has never actually had a seizure that we have seen.
Athan is also hypotonic - he has low muscle tone. He’s floppy. We were referred to the First Steps program, and through that program Athan sees a physical therapist twice a week to help him gain muscle tone. His biggest challenge is head control, but he has already made great progress in catching up to the milestones he should be meeting.
Finally, Athan has had extensive genetic testing done to see if there is anything that could shed light on his treatment, as well as informing Ryan and I in decisions about having more children. So far those tests have not found anything specific, and more tests are pending.
Athan is currently doing very well. Scanning a few of the pictures posted previously will show you his giant grin, which is very much common at our house. He is such a happy boy! He takes his medicine well, eats well, sleeps well (most of the time), and fills diapers like a baby should. We have follow-up appointments at the UK clinic about once a month, and will continue to post updates as we learn more from the doctors about our kiddo’s condition.
If you have the time to read Athan's Journey from the beginning, you'll see a family carried along by the prayers of The Church, which is impossible to summarize.
I hope this helps some of you newbies catch up! :)

Monday, October 15, 2007

Physical Therapy Progress


The above video is a short clip from Athan's physical therapy appointment today. (if you'd like to watch more, there will be a longer segment below) The little guy is really getting stronger and becoming more active. His head control has been the main area of emphasis since that must be in place before other important milestones can be reached (sitting up, crawling, etc). It was not long ago that Athan couldn't hold his head up at all. That reality makes today's "workout" quite an impressive feat as far as we are concerned! Our PT has been wonderful and Athan has had good days and bad days as far as his cooperation. Most of them have been really good though, and we have rejoiced at his progress. Whatever our PT teaches him/us we try to repeat throughout the week, and it's fun to see him work and get stronger...little by little. The above mentioned PT is featured in today's video, along with her lovely daughter - who is a great helper with exercises and with entertaining Morgan!

I was speechless.

Sunday, October 14, 2007

more from Boyd's

And after all that fun, we came home and Hannah made us Candied Apple Pie with apples from the orchard:

I think I'll go have another piece of pie right now! :)

might as well

It's 3 a.m., and Athan is awake. Not fussy. Just wide awake. And talkative. So I might as well blog, right? :) Helps keep me sane...

Morgan and I had a big day today! We left the boys to hang out here, and we went with Jason, Hannah, and Margot to Boyd's Orchard. What fun!

I'll get more pictures up tomorrow, but I think Athan is finally asleep now. I'm heading to bed!

Friday, October 12, 2007

a stellar day

Laurie came over for Athan's physical therapy today, and he worked like a champ! Example: Just 2 weeks ago we were celebrating that Athan held his head steady (with hands helping steady his torso) for about 45 seconds. Today - 3 and a half minutes! Woo-hoo! He just worked really hard today.

Morgan has had a good day, too. She's had a couple of the inevitable toddler moments (like throwing her shoes and refusing to come inside to eat), but she also has responded well to discipline. When she woke up from her nap, 2 hours after the shoe-throwing incident, she apologized on her own.

Ryan has been out and about most of today on a couple different errands, but he had some good daddy-daughter time with Morgan this morning. He was here to help with physical therapy for a while, too.

And I've had a good day. I've recovered from all my sickly-ness (no more tummy troubles, headache, congestion). I rested well this morning while Morgan was out with Ryan, and my afternoon has been productive. It just seems to be one of those rare days when most things just click.

I know some of you have been praying specifically for days like this for us. Thanks! :)

Thursday, October 11, 2007

the kiddos


Ever since we brought Athan home from the hospital, I have had a bag packed and ready in case we had to go back.

I unpacked it today.


Thursday, October 4, 2007

catching up

I haven't written in a while, and I need to catch up on several things:

I've been meaning to wrap-up about our appointments at UK last week. Everything went so much better this time. The frustrations from last month's visit certainly did not carry over. Everyone seemed to be much more on the same page, and communication went much more smoothly this time. We were so relieved!

Also we saw Dr. Coburn today. He is very encouraged about Athan's progress. We did the second round of immunizations today, so pray for our boy the next couple of days as he recovers from that.

PT has been going well. Monday Laurie said Athan was feeling like any baby trying to gain head control (instead of a sick baby trying to catch up). Wednesday he wasn't as willing to work, but this may be a 2-steps-forward-1-step-back kind of pattern as he catches up.

Athan is also chewing on his fingers like a crazy man - I think we may have a couple of teeth about to pop through!

Sleep has been scarce the past week or so - for all of us. Athan has been staying awake at night (not fussy at all - just awake). Morgan has been having some trouble staying in bed. I've been up with them. Ryan pulled his first seminary all-nighter. We're all kinda sleepy, but the weekend will hopefully be more restful.