my girl

This is Morgan asleep at the foot of her bed (with all the necessary accoutrements for sleep, of course - dog, cat, cucumber, book, 2 blankets, and a princess figurine).

Apparently, she chose the foot of the bed because her pillow at the other end was occupied:

Whew...

He's back. :) And we're back into our more normal routine again, which feels good.

It's been a while since I posted anything of like this, but I am again welling up with gratitude for... well, for you, probably. :) I've had occasion lately to reflect on our journey these past couple of years, and so much of our story is testimony of the way you all have loved us. Your faithful and prayerful attention to the smallest details of Athan's various diagnoses and treatments and therapies, to Morgan's adjustment, to our fears, frustrations, and victories has been a very real expression of His grace to us.

Thanks.

ready for Daddy

Ryan has been in Chicago this weekend visiting our dear friends, the McCallisters. This afternoon, Morgan said "I am going to be really happy to see Dad today, right Mom?" And twice, Athan has asked to "hold Dada."

The 3 of us are ready to see him! Couple more hours...

finally!

in case you're wondering

He's still not sleeping. Up most of the night last night. It was suggested this morning that Athan might just be, in fact, a nocturnal creature. Perhaps... :-)

playing

Athan has been going to the child care provided for the chapel services. He seems to be doing very well, and learning lots of fun stuff! Just wanted to share another little milestone to celebrate. :)

Day's End

Dad here, taking the blogging reins for a late-night post. I'm going to try to capture Athan's last waking moments in words. Though I know i won't be able to do the picture justice, I have to try. Morgan and Amberly were asleep, so Athan and I were taking care of a few things in the kitchen. I put him in his high chair to take his medicine, then turned around to wash a few dishes. I looked over after a couple of mintues and I could tell the boy was getting tired. After all, he did have quite a long day. (Refer to Amber's post from earlier to get an idea how hard his morning was.) Add to morning tests and therapy an afternoon with sister, and i'm not sure how he survived! At one point they were playing a game they must have learned from bighorn sheep. Morgan would just head-butt Athan, make some strange noise, and they would both giggle. So, fast forward an hour or so, and there is Athan in his high chair - head still a bit red from Morgan's game and eyes droopy with fatigue. I was hurrying to finish up so i could rock him to sleep, but i didn't work fast enough. Just before he closed his eyes, Athan cocked his head to the side and flashed a subtle grin to no one in particular.

I'd like to think it was a grin of satisfaction - knowing that he got the good out of a day; that he has a sister who loves him enough to share her "fort" with him, therapists who push him to get "better," and a mama who strongly and patiently helps him ford the daily rivers. After I put him down, I thought about how the gratitude we express only in prayer was effortlessly revealed through my son's smile. He remains my greatest teacher of peace and contentment.

Good night.

more PT, kinda

Laurie is the primary therapist for Athan's First Steps Team, so she has to do a comprehensive developmental assessment before our next meeting. We were a bit sad to have to use therapy time to do the test because it might mean a pause in the progress he's been making. But it was pretty fun to see just how many skills he is acquiring across all areas of development.

This morning, for instance, we discovered that Athan tests at or ahead of age-appropriate expectations in several areas. Of course, some of the milestones are impossible for him because of his limited mobility (we have no idea whether or not he can use a door knob yet - he can't stand up). But it was fun to watch him demonstrate one skill after another very well - pointing to objects in a book, naming people in pictures, righting images that are upside down, getting objects out of a container by pouring, finding toys that are hidden under a blanket... on and on, one by one, he just played away like most kids his age. :)

And we'll just work extra hard on our "homework" for physical therapy to make sure his progress continues.

Still working on the video thing, too. New camera. And school has started, so Ryan's computer is occupied more often...

eyes, OT, and PT

Well, we went to UK eye clinic again. We waited over 2 hours again. Ugh.

But I like Dr. Napier. She didn't jump immediately to surgery, but it looks like Athan's eyes will need surgical correction. His eyes both turn in pretty dramatically. So sometime in the next couple of months, probably...

Also, we met Emily this morning, who is an Occupational Therapist with First Steps. She did an eval and had some great news. She reports that Athan shows to be age-appropriate on many of the skills he should have right now. Yeah! She will probably come visit with us once or twice a month and teach us some exercises and activities to help with several areas of development.

And we had another GREAT session today with Laurie. Athan worked so hard! We still have to substantially stabalize his hips for him, but he did most of the work in cruising the length of our couch and back (in pursuit of a balloon). He is still getting up from lying to sitting by himself (video soon, promise), and is starting to learn things like getting onto his knees before pulling to stand and bending his knees to sit back down... Just lots of new things that seem to be "clicking" for him a bit better.

Sososo proud of our kiddo!

First ice, now wind

Wind yesterday. Serious wind. West-Texas-like wind. Tornados in some places (but not here in Wilmore that I know of). That would be our trampoline between and almost on top of our sheds.

AAAND...

A couple hours after I posted last, he did it again. This time I was watching. After I changed his diaper on the couch, he rolled to his side and pushed himself up to sitting!! :) WOO-HOO! :)

Now that we know he is capable, it will just be a matter of repeating the exercise until he remembers he can do it all the time. So excited...

amberly

I told you!

He's been working hard in PT, and we have a fun new milestone to report: For the first time in his life, our Athan got himself from lying down to sitting up totally on his own! :) I actually don't know exactly how he did it. He was taking a nap this morning in his crib, and when I heard him chattering, I went in to get him up as usual. But he was sitting up just looking around the room.

Yeah Athan! :)

Endo again

Dr. Irene called when she got the results of Athan's labs back. His growth hormone levels were too low (as in "undetectable"), so we have to increase his dose. It's the smallest increase possible (from .2mL to .3mL), but I think it's affecting his sleep again. Just as the bathroom project is eating Ryan's time and school is about to start... Pray with us for good rest times during the day and quality sleep at night, even if it has to be in shifts. :)

another...

This is about where we are now, except that as of 1 this afternoon, we have a potty. :) Ryan's in there now putting on the fixtures so we can take a bath tomorrow...

And as always, the kids are handling it all just fine. I took this when I found them in Morgan's room playing "dress up" together. Don't know how willing Athan was, but he looks happy here:

the bathroom so far

There's more done now, so I'll try to get the pics up soon.

december pics i meant to share

december pics i meant to share

kinda crazy

The bathroom is still under construction. Today Ryan had to unexpectedly chop our shower unit into 3 pieces, buy and install a new tub, and hang more green board around it. Yikes. We're still using the neighbors' potty and shower. Still creating excuses to get out of the house....

It is pretty amazing to watch Ryan work, though. He is truly a Jack of ALL trades. He has the injuries to prove it: banged up shin from crawling around in the attic rewiring lights and fixing insulation, deep cut on his thumb from sharp edge of a tile he was cutting, monster bruise on his arm from falling on the ice while out buying a new tub, and charred fingers from the blow torch he was using to do plumbing. But the bathroom is looking great! :o)

And in the midst of all the chaos, the kids are doing great. We've gotten much more play time with friends, which Morgan loves.

Athan has had 2 big moments to celebrate: Last Friday he had one of his best PT visits ever. He worked SO hard. If he can keep up some of that effort, I think we'll have some fun new milestones to report soon. Also, last night, he slept! :) He did wake up at 12:30, but he was back asleep in 5 minutes without me ever even getting out of bed. He did the same at about 5. But both times he was able to "sing" himself back to sleep! Yeah Athan! :)

Endo appt

We saw Dr. Irene this morning - endocrinologist.

She asked about his "crash" back in December. It was reassuring to hear from her that we did the right things in caring for him during that episode. She gave a few ideas of new things to try if he gets sick again. Next time, we will give the IM dose of his SoluCortef (emergency shot of his daily med) earlier and see if it helps him rebound without having to be hospitalized.

She is very pleased with his development in every area except two. Surprise, surprise: weight gain and gross motor skills. She is going to increase his dose of growth hormone a bit and see if it helps him gain weight. And as always, we're working on his physical therapy all the time to help his mobility and large motor skills catch up.

She said there is nothing obvious from and endo standpoint that would help us explain his inconsistent sleep, so it remains a puzzle.

I really wish you all could meet Dr. Irene. She has been so good to us from the very beginning - holding my hand as she explained his diagnosis of panhypopit in NICU. She is always so warm and helpful. We are grateful to have her caring for our boy. We get to go visit her again in May.

surprisingly easy

I thought this bathroom would just wreck our schedule for days on end, but it has not been too bad at all. One day was crazy (i.e. driving around so the kids could nap in the car, creating errands to have somewhere to go, eating out 2 of 3 meals...), but the rest has been no big deal. Ryan is amazing - he cleans up all the mess at the end of every day, so we don't have accumulation of dust and grime and parts and pieces everywhere. Morgan is using her little training potty again, and Ryan and I just go next door (thanks Rob and Kat) to use their shower and potty.

We also spent a couple of days at the Jagger's and Grace's house - thanks again, friends, for the refuge. :)

The kids are good. Athan is still his smiley self, and Morgan can still be a princess.