how did we get from here to preschool so fast?!

Thanks, Nana, for the pics from Memory Lane...

day 1

Mom and Dad are a little sad. Morgan is ALOT excited. Athan is so far indifferent.

OT and PT and PT to the rescue! :)

Occupation therapy this morning with Ms. Emily. They actually sat outside and did therapy in the shade so I could get some work done out there. He did pretty well for her this morning. Emily has been so good for him. It frees Laurie up to focus more on mobility while Emily does more upper-body strength and fine motor work with him. Can't say how glad we are that she's around. :) It is so encouraging to hear her feedback. She's just dang good at her job, and fun to be with.

And then our sweet Laurie came this afternoon. Athan was back to being Captian Crank, and Morgan was wound up all over again. I think today she was MY therapist and not Athan's. :) She let me blabber all during Athan's workout about my rough day. Then she, being off the clock and back to 'friend' status :), took both kids with her to her house while I got a (MUCH needed) shower. Then I went over there, too, and they fed us dinner (bourbon sauce on chicken over rice with yummy veggies and a Brazilian desert I can't spell - Yum). It restored some of my sanity to be with them tonight. Jordan (age 12) is now officially named "buddy" by Athan. She and her sweet friends played with my 2 while I talked with adults. Whew...

I think both of mine are finally asleep. I'm going to crash myself. Night all.

cranky and crazy

Those are the nicknames I gave the kids today. Or at least I wanted to. :)

Morgan is crazy. She's so excited about preschool she's literally bouncing off the walls. We got to meet with her teacher and classroom helpers here at our house today. She was chattering up a storm, with her usual Morgan charm. And the rest of the day has been an on-going effort to spend some of the energy that comes with this kind of anticipation. Whew.

Athan is cranky. Everything today has been loud "No" and screams, followed by whiny clinging. Again - whew.

Uh-oh. Gotta run. More screaming coming from the kitchen...

8 years and preschool?!

Ryan and I just celebrated our 8 year anniversary on Monday. [HUGE thank you again to Kyle and Charlie for keeping the kiddos so we could go out for celebratory cup of coffee. :)] What a ride it has been! Ryan is a patient man, I tell you...

AND Morgan and I went up to meet her teacher for preschool. Yep, kiddo starts next week. She'll go half days (morning) 4 days a week. Being up at the meet-the-teacher open house seemed to confirm most of my suspicions: Morgan in school will be like a fish in water. She is so excited! She showed almost no anxiety about the new place and people. In fact, she announced to one of her teachers "I can just learn to do ALL the things you can teach me!" Goodness.

Athan is doing well. We've had some ups and downs getting back into our routine (especially as far as sleeping goes), but he's still working hard, building muscle, and gaining skill and confidence every day.

resuming

We're back home and starting all our beloved routines. :)

Athan had PT on Monday, which was a good get-started-again session. We saw Dr. Napier today, and his eyes still look good. He's been wearing his glasses more, and we're going to work in some more patching of his right eye just to make sure the improvement continues. Tomorrow morning we see Ms. Emily for OT, then Laurie again for PT in the afternoon.

Morgan is reacquainting herself with her favorite toys, and got to play all morning with her friends Eve and Claire while Athan and I were in Lex. In a couple weeks, our big girl will start pre-school. Crazy. 4 days a week from 8 to 11:15. We're both excited, nervous, and a little sad. Gulp.

I'm doing what I do, glad to be back in Wilmore. It's good to be back in my kitchen, eating veggies from our garden, sleeping in my own bed! It'll be better still when Ryan gets home on Saturday.

Ryan finished up one of his summer classes, and his helping his brother finish a couple things on the house before he heads home Friday morning. He'll have a few days to settle in and get LOADS of reading done, then one more summer class. We're ready to have him home.

Already we miss our friends and fam in NM and TX. Love you guys!

aaahhhh

We're home. The kids are elated. I'm relieved. Grammy's wonderfully helpful. We're all sleepy.

That's about it for now.

sorry for the silence!

We're on vacation! :) Computer time is limited, and somewhat avoided. :)

We made it to Clovis. Ryan came early to get started on his Mentored Ministry class (seminary version of internship, kinda), working with our good friend Bailey. He spends a couple days a week on that class, and the rest of his time helping baby brother Layne remodel his house in Lubbock.
The kids and I (accompanied by our precious, pacient friend Kelly) followed him here about 2 weeks later. The road trip was amazing - even though we spent 16 hours on the road one day, and the kids only slept for less than 2 of them. Gulp. And so far the vacation is great. The kids love all the adoring audiences of our friends and family here, and I love a break from being the primary audience. They get fresh enthusiasm and I regain some sanity. :)
We're here for about another week, then Grammy is driving back to Kentucky with us and staying for a few days. Ryan will stay and finish up his class and work, following us home a few days later.

If I don't manage it before, I'll blog when we get back to Wilmore.

braces

There they are. Custom-fit ankle supports. As you can see, they just slip into his shoes, and they really seem to work. They keep his ankles positioned correctly so that he will build the right muscles to strengthen them. They keep him from some of the bad habits he was developing before, like gripping with his toes to compensate for his weak ankels.

He seems to like them. I think he likes the added stability. They don't keep him from any of the things he can already do, like scooting or standing up.

So far so good! I'm excited to see how this helps him get stronger.

fun moment

My kids side by side in the kithen gleefully watching fireworks out our back door. Too cute.

CRAWL!!

Athan crawled! :) Not far. And not often! But for the first time ever, he was up on all 4s, and then made a bit of forward progress by moving his right hand and left knee, then left hand and right knee... Then he got tired and returned to scooting. Yeah!

As far as mobility, I will be fine if Athan skips the crawling as a whole "stage" and goes straight from scooting to walking. But as far as his cognitive development, muscle strength, and general skill level, it would be great if he would go ahead and learn to crawl. It is helping him develop his arm, shoulder, and neck strength already.

His crawling attempts are brief and rare, but I'll see what I can do about a video soon...

Athan will stand for Wiffle ball

(mostly) better already

Athan finally got some sleep about 4 this morning after his fever broke. He woke a couple hours later and is eating well. No fever. No more puking. He is Mr. Cranky Pants, but I suppose he's allowed to be today, right? :) Hopefully he will nap well this afternoon. Hopefully I will, too! ;)

uh oh

Athan has a fever. And he threw up once. Poor kiddo. A couple of our friends' kids are sick, so I suppose we should have known. If it's going around, Athan's quite likely to get it, whatever it is.

Thanks, in advance, for the prayers.

graduation

We saw the NICU Grad Clinic yesterday for the last time! After 3 hours of lengthy developmental assessment, Athan was released from the clinic. He "graduated," complete with cheesy certificate and everything. :) No real news to report, just more affirmation of what we already know: He's developmentally appropriate with the excpetion of large motor skills. He's gaining weight. He's got treatment plans to follow from Endo and Cardio for his health challenges. And he's just dang charming. That's our kiddo! :)

trying again

I had no idea how tired I was. Maybe I still don't. But about a month ago, Athan started sleeping. We still have the odd night here and there when he's awake, and fewer when he's awake and screaming. But mostly, he sleeps.

And the whole world looks different. I suddenly have gas in the tank again. I have space I didn't have before. My daughter's temper seems more like a normal event in the life of a 4-year-old instead of one more thing aimed directly at my weaknesses. Laundry seems like a welcome part of my work instead of an avalanche of threatening dirty clothes. Cooking is fun again. Times of reading and reflection can exist instead of dissolving instantly into necessary naps. Conversations are restful instead of taxing.

This week, we had lots of heavy stuff. 3 families moved (2 away, 1 across town), which meant lots of cleaning and packing and loading. On back-to-back days, it meant tears and hugs and goodbyes. Other dear friends are in the midst of crisis. There was babysitting and grocery shopping and therapies and doctor visits and other stuff that happens around here quite often, but there was more of it all, and it all came on the tail-end of a week apart for our family... It was alot, and we were exhausted.

But I also had the reserve to do that for a while. It was a sprint. And now I can sleep again. Predictably. I don't have to live in the fog of fatigue all the time.

I guess I'm writing just to celebrate this for us. Also, to say to anyone going through a time when life requires you to live on too little sleep, you're not going crazy! Give yourself MUCH grace to cope however you need to for a while. And sleep whenever you can. ;)

Shriner's

Yesterday I took Athan to Shriner's Hospital in Lexington. Some of you may remember that we saw them last fall, and they recommended we just come back in a year. Lately, Laurie and I have noticed new signs of weakness in his joints, especially his ankles, so I called and asked them to move up the appointment.

It was a good visit. We really like the ortho guy, Dr. Serey, who follows Athan there. He was pleased with Athan's progress, for sure! :)

Basically, all of us (parents, docs, PTs) were somewhat ambivelent about whether some kind of ankle brace would help Athan. On one hand, some increased stability might help him learn to walk. On the other, too much novelty and rigidity might hinder some of his current skills (like scooting), so he could loose the strength he gains from them.

Still, after Laurie's input, our observations, and the evals by Dr. Serey and the PT at Shriner's, the consensus was that a small ankle stabilizer is worth trying. They took us to the orthotics folks and did little casts of Athan's ankles. We'll go back and pick up the braces in two weeks, spend the morning getting them fitted, and then bring them home.

After our talks, they seemed to trust our willingness and ability to try different things with the braces. We may try leaving them on all day for a few days and see how he does. If he's too hindered, we'll try just putting them on in smaller segments of time. We can play with the timing and see what works best for Athan.

We go back to see them for a follow up visit in 4 months.

tired

Morgan and Ryan had a great trip to Texas/New Mexico. Athan and I had a full, but quieter week around here. I'm trying to find a way to write about life this week, but words evade me tonight. It's good to be back together. I'm going to bed and will try again to post tomorrow.

growth!

We saw Dr. Irene again last week. Once again, always a joy to be in her office.

Athan is growing! His weight was at about the 3rd percentile a few months back, then dropped back off the chart again, but now is at the.... are you ready? ..... 25th percentile! :) His height has dropped a bit, which is definately ok, to about the 75th percentile. Those two changes mean that his proportion measure (weight for length) is on the chart (10th percentile) for the first time ever! :) Go growing boy! :)

missing my girl today

the gifts :)

That's the scooter mom got for Athan, per Laurie's suggestion. He likes it:



And most of our friends and fam got him books! :) Yeah! This was the scene at my house a couple days ago. It made my bookish heart warm:

before cake, during cake, after cake:

I learned alot through the process of celebrating Athan's second birthday. I learned about myself, about community, about sadness and celebration. I also learned that I'm not a very good photographer (yes, I'm finally admitting it). These 3 are about the only ones that made the cut. ;)

before i get to the birthday pics

I have to take a break from the Athan-watching for a moment and tell you about my girl. Morgan is such a great big sis! And she is learning so many fun new things. I love to watch her wonder at the world.

Twice in one day, I had occasion to see her new-found maturity. First, when her friend Margot was here playing, the two of them were disagreeing about how to play a particular game. The specifics are confusing, involving reenactment of movie scenes and the laws of physics, but the important part is HOW they handled it. Normally, there would be an explosion. Yelling. Tears. Maybe some pushing or whining or throwing of heavy-ish things. But this time, instead, they came to talk to me. Morgan calmly explained the difficulty. I suggested some compromise and some alternative solutions. She chose one of them, then ASKED Margot if it was ok with her. To Margot's credit, she waited all of this out with great patience, then agreed with the new idea. Off they walked to play again. I did a little dance.

Later, as I was cooking dinner, Morgan was playing with some beads she was threading onto a string. She decided she only wanted the circle-shaped beads, and volunteered to loan the hearts and stars to Athan. They played for a bit, then Athan reached over and picked up one of Morgan's circle beads. Again, this would be the normal high-volume melt-down point. But instead, she clearly and gently asked Athan if he would hand her back the circle bead, please. Athan said "o-tay," handed it over, and went back to his hearts and stars. I did another dance. :)

Yes, I can hear the warning voices from some of you kind readers who have been parents longer than I. Of course, tomorrow, there will be unnecessary screaming over conflicts with friends and siblings. I know. I'll be holding to the moments like these in moments like those. :)

2

Today is Athan's 2nd birthday. Tomorrow we party. Today, we're quietly and deeply thankful for the chance to get to participate in the life of this amazing man-in-the-making.

mad skilz

3 clips, 'bout a minute each:

1 - climbing on couch by himself (you'll see my nervous hand dart in and out, but he did the work, for sure, by himself)
2 - standing up unassisted (Laurie is a genius!)
3 - we'll call it "yep" (might have to up the volume a bit)

GREAT progress

1 - Thank you for praying for poo. Twice yesterday and once so far today. :)

2 - The site is healing well, as far as our non-medical eyes can tell.

3 - He seems to feel really good. He even had PT this morning and GET THIS: Athan stood up from a stool with NO assistance at all. Once he stood he grabbed a hand for balance, but he stood up all by himself.

Wow, right?! :)

best dad ever

Ryan has taken care of Athan's surgical site and med schedule during this recovery, and I'm so thankful. Something about this procedure has made me more emotional than I expected. Maybe I'm just mad the poor kid has to go through one more difficult thing. I don't know. But my steady and faithful husband has taken care of us both the past couple of days, and I'm thankful.

Athan is doing well. He was actually in a hilariously good mood this evening - parroting Morgan for whole sentences, laughing at Mama, talking to lots of imaginary people on imaginary phones. His surgery site looks better and better. He's on less and less of the pain med, and seems to be fine on the lower dose. We're back to normal dose of other meds. He's sleeping well (we have to wake him to make sure we change his diaper frequently enough, though).

I haven't talked about poo in a while, but it is now a prayer reqest: We need Athan to poop soon. His usual struggle with constipation is probably compounded by the anesthesia and pain meds, so that's the next big step in being healthy post-op.

better and better

Athan is really in a good mood this morning. He is still on pain meds, and the diaper changes are pretty tough on him. Still, even the wound care is going better than I thought it would. I think he feels pretty good. We're having a tough time getting him to "take it easy" (doc's orders). :)

PS - Ryan is finished with the semester. He turned in his final paper yesterday. For two semesters now, he has had to work on his last assignment in the hospital. Yuk. At least he can take a mental break for a few days now before he starts working on his intensive summer class.

much better

He is still obviously not wholly himself, but he has eaten well and seems to be in less pain. We'll hope for more of the same tonight! Thanks for all the prayers.

rest and tears

Taking care of the surgery site is tough. Every diaper change we have to pull skin back and apply ointment to make sure the adhesion doesn't reattach. I cried with him.

But he also rested really well this afternoon, is drinking juice and eating a bit.

More when we can.

on their way

Ryan just called. They are on their way home. They gave Athan some morphine, which burned going in, but seems to have calmed him down and eased the pain. Ryan has detailed instructions about how to care for him the next few days. I've gotten some good rest this morning, cooked a little so we'll have meals already ready, and prepared the house to be "recovery zone" for our kiddo for the next few days.

After they get here, I'll be holding a boy and Ryan will be finishing and turning in his final paper of the semester. We'll try to post an update, but it'll be a few hours.

hurting

Ryan says Athan is at the "crying and in pain" part. Ryan is holding him. Poor baby...

out of surgery

Dr. Schaffer says he's doing well.

he's back

The nurse just took Athan back for the surgery. Ryan's answer to "how is he?" was "silly" just before he went back.

surgery today

Athan's urology surgery is today. It is a simple outpatient procedure that will just make sure he can pee straight. The boys just left for the hospital. I'm staying home with Morgan today to rest and be ready for the probable night shift tonight when he's home recovering.

Athan was smiling when he got in the car with dad, and gave Mama 2 kisses as we said goodbye. Ryan will keep me updated, and I'll try to update you faithful blog readers as we go, too.

from Nana

we're slow to call it a trend..

After 2 years of almost no sleep, Athan has slept through the night every night for a week now. In fact, in almost 2 weeks, there's been only 1 night that he was up. It has to be the new heart med - Enalapril. Whatever was keeping him up before must have been some kind of heart-related thing.

I'm a whole new person! :) It's amazing what consistent sleep does for your over-all wellness.

It may not be over. We may be back to sleepless nights again in our future (for example, he has a little day surgery with urology on Friday - probably we'll have some tough nights recovering from it). But it's ok. I just need little windows like this one to refresh me and give me hope that we might actually get to sleep consistently at night again someday. ;)

sleep! :)

Athan has been sleeping much better this week. We've only had to get up one night with him. I know the added activity with Nana and Papa may be helping him get more tired and sleep better. I also think the new heart med may be helping (just because they've been closely correlated in time).

Whatever the cause, we're so glad our kiddo seems to be resting better. And so glad we get to rest, too! :) Yeah for sleep!

oh, the joy!

Nana and Papa are here, and our kids are SOSO excited. They went to the zoo, played for hours on the trampoline... just too much fun. :)

Ryan and I are pretty excited, too. We've had time to relax and rest - even go on a date. :)

I've seen Nana's camera clicking away, so I'm sure we'll have some pictures of all the fun soon.

Athan's greatest hits

2 new skills:

Morgan can write her name all by herself.Athan can "help" with the garden (mostly, he can eat dirt):

oh, AND...

Thanks to all who called/wrote/commented to wish me a happy birthday. We did find enough of a break in the week of being sick to celebrate my 30th. :)

old-ish news

For over a week now, we've been able to think of nothing except getting everyone well.

Somewhere in the midst of it all, though, we spoke to cardiology again. The surgeons reviewed Athan's case, and there was some disagreement about the degree of the leak in his valve. It certainly is there, probably getting worse, and will require another surgery, as far as we understand. But not immediately. We are going to try Captopril again, hoping that he has outgrown the cough that went with it for him last time, then go from there.

maybe its over now?

I got sick again, too. Looks like Athan and I basically caught the bug twice. Yuk. I'm really tire of being sick! Athan was better yesterday. Maybe I'm over it today (though I thought it was over yesterday, then was sick all night last night). Maybe now...

again

Athan threw up again tonight. Sugars are fine and he's asleep and resting well. I'm off to do the same. Just wanted to ask for prayer from any late-night readers.

We'll call Dr. Coburn tomorrow and see what he recommends.

umm..

Athan is better today. Much. His mood is still volatile, but the rest of him seems settled and well. His sugars are fine. He's not throwing up any more. He had a long night last night after that big dose of steroid, but has done well today.

Morgan decided to showcase her iron will today: She sat in front of the same shelf for 3 hours (asleep for 1 of those) refusing to pick up her toys. When she finally did, it took her 4 mintues, tops. Then, 30 minutes after she finished the toys, it was time for dinner. It took 2.5 more hours for her to take 2 bites of sweet potato. 2 bites.

Ryan and I are... worn out, I think. But we should be able to recover well tonight and tomorrow.

Thanks for reading and praying us through another one of these...

shoot

Athan's sugar dove dangerously low today, and we ended up having to give him the IM shot of Cortef again to help him rebound.

He was sitting in a chair, awake and alert, watching a cartoon with Morgan. It makes me a little nervous that he was not symptomatic nor had he thrown up in a while. I just decided to check his sugars just in case. 47. Recheck to make sure it wasn't a mistake - 45. Normal is 70-120.

So I grabbed Ryan from outside to prepare the IM dose while I fed him some banana and juice. Within minutes, he was back to a 71. He's resting now, but somewhat fitfully due to the big dose of Cortef.

We'll keep a close watch in him tonight, which probably means sleeping in shifts, if much at all. We've checked with endocrinology, and Dr. Smith (on-call) said we were doing the right things. We've called John (pharmacist) to re-order the IM medicine, but what we have on-hand is good for 3 days and will work if we need to give him another shot soon.

again, again

Athan's throwing up again. So far sugars are fine.

We're sleepy.

Morgan has a cough, but is doing ok.

the trampoline static-induced fro (thanks Uncle Jordan)

better

Morgan, after a super-fun night with friends, is doing great.

I'm not sick. And less sleepy. After 2 years of not sleeping much, it takes longer to rebound from spells like this.

Ryan was still not feeling great when he left for class, but getting steadily better.

Athan is better, too. No more puking. As far as Athan goes, we really had the best kind of worst couple of days you can have: Of course it's rotten for him to be sick at all. But this time we were able to keep meds in him by mouth between bouts of getting sick, so we did not have to give his emergency IM dose of Cortef. We made it through another tummy bug without going to the ER, and this time we didn't even have to call the pediatric endocrinologist on-call in the middle of the night (or day, for that matter). Without having to have such a big shot of Cortef, then slowly get back to maintenence dose, I think recovery will go better for him. Less withdrawl, hopefully less constipation... Like I said, the best worst days...

again

We need your prayers. We got about 2 hours of sleep last night. Fitful naps today. Ryan's still sick. I'm weak. We're exhausted. Athan just lost everything he'd eaten all afternoon, including meds. His sugar is low, but not too dangerous yet.

Morgan is healthy again, and spending the night with some friends. We're so grateful. She's had a long couple days having to play alone and be quiet because someone was getting crucial sleep.

We need to make good decisions tonight and be attentive to Athan's signs, even on little sleep. We need his tummy to settle, his meds to stay in, and his sugar to stay up.

I don't realize how much I idolize self-sufficiency until I have to ask for help again. But I don't know what else to do.

Thank you all, for sticking with us again and again.

we're sick

All 4 of us are having some kind of GI issue. More about Athan's part of this sicklyness soon.

For now: Aunt Britt's pics.

fun, fun, fun!

Uncle Jordan and Aunt Brittany were here for a visit this weekend, and our kids had a blast! Morgan always grins and basks in all the attention, and Athan seemed to have fun charming yet another audience.

And Ryan and I were so glad to have them here, too. :) We got to talk and laugh, share meals and watch The Office. They cooked for us, kept the kids so we could go on a breakfast date, and showed great patience with our 1 bathroom and odd sleep schedules.

I also saw Brittany clicking away with her camera on several occasions, so I'm guessing you'll get a visual version sometime in the future.

Miss you guys already!

snapshots of today

We got to play outside for a bit. Yeah! :)

heart news

Ryan took Athan to see Dr. K today for a cardiology check-up. It was good to see the staff again, and Ryan reported that Athan was chipper and talkative for his reunion with them.

The reunion was happy, the news was not-so-happy. Today's ECHO shows that the leak in Athan's mitral valve has gotten a bit worse. Last time it was classified as "mild to moderate." This time, "moderate." As of right now, this means 2 things:

1. He goes back on a heart med. They wanted to put him on a blood-pressure medication (ACE inhibitor), but those make Athan cough (a common side effect). So he will actually be on a kidney medication that does the same thing. Dr. K will let us know the exact medicine and dosage soon.

2. Dr. Kakavand will take Athan's information to the surgeons' meeting on Monday to be reviewed. Another surgery is needed, but Dr. K and Dr. Plunkett (surgeon) will confer to decide whether we need to have surgery soon, or wait to see if the condition is manageable on the medication to give Athan time to develop and grow before another surgery. Unless they tell us otherwise, we'll just start the med and check him again in October.

The silver lining for today: He weighs over 23 pounds! :) That's pretty significant weight gain since we last checked him back in January.

friends

They came to my house this morning to share themselves and seek the Lord together. Others called or wrote to encourage and uplift me. Out of the blue, a couple of them took Morgan and a friend to eat and play tonight, just for fun. Still more met us for dinner and conversation. And more read the blog. And more prayed, staying as near as possible from far away.

And that was just today.

This has been a tough season for us, but days like today and friends like you have lightened the load more than you may ever know.

I slept!

While Mom was here, I slept. For hours. At night. During the day. I just slept. I cannot tell you how much I needed it. I feel SO much better. Thanks, Mom, for bringing the relief that only a mom can bring!

So now I'm (almost) recovered, and I think Athan is, too. He was very constipated the past few days. I think this has happened every time we've had to give him a big dose of Cortef; he gets constipated when we have to go back to his normal dose. Next time we'll be more attentive to his diet and make sure we get the laxative in him earlier.

Easter pics

Morgan was having lots of fun, as you can see:
Athan, poor guy, still wasn't feeling very good:

ibe sick

Snot. Headache. All-over-aches. Other unpleasantness I won't describe. General yuk. My mom has patiently taken care of the kids so I could try to sleep it off.

When I feel better, I'll get some good Grammy pictures up.

in case you were wondering

Morgan did not get her fearlessness from her Mama. I hate snakes. They make me squeal and run away.

Also, Athan continues to recover well, as do Mom and Dad. Many thanks to generous friends for keeping Morgan and encouraging me during the aftermath of this one.

Plus, Grammy's here. That just automatically makes everything better. :)

yes, really

No fear. She was outside with our neighbors when this little guy made his appearance. The girls squealed and ran. Morgan, however, just picked him up before anyone could even offer some word of caution. Good thing it was a harmless little garden snake. I'm so proud of my girl for not being afraid! And yes, we're having more conversations about asking FIRST before you touch any unknown creepy crawly thing.

recovering well

We're still not getting much sleep, but he seems to be doing really well otherwise. No fever. No more vomit. Good appetite. His mood is volatile, probably because of the increase in his dose of Cortef. He's either chipper or irate. We gave triple dose yesterday (after the IM shot), double today, and back to normal tomorrow. The weaning process can be rocky as he experiences a little withdrawal from the higher dose.

ER trip avoided

Last night, shortly after dinner, Athan began to run a fever. It was obvious that he did not feel well and mostly he just wanted to be held. To make a long story short, he was unable to keep down his oral meds for the evening (which allow his body to produce sugar). He threw up twice over a period of 3 hours between midnight and 3am. During that time his blood sugar dropped from 95 to 55. His fever remained high and we could not get him to eat much. His lethargy was apparant and we began to gather things to make a hospital trip just in case. Meanwhile, I got on the phone with Pediatric Endocrinology at UK. The Dr. on call was Dr. Smith, who is a colleague of Dr. Irene. He knows Athan and his situation, so I explained to him what was going on. I told him I was preparing to give Athan his emergency intramuscular shot (of cortef, the med he had been unable to keep down) and asked about bringing him in. Once he found out we could give the shot here, he advised us to do that and then wait half an hour or so and see if Athan stabilized. So, I gave the IM shot around 3:45am. By 4:00 his sugar level was back up around 75 and then 95 again by 4:30. Thankfully, that got us out of the "endocrine crisis" woods this time. The shot ended up serving the same function as an IV would have in the hospital. Athan's fever was still over 102 (under arm), but it had leveled off. Mama took the next tough shift until his fever broke a few hours ago. It's now my turn again, and after Athan agreed to a small breakfast he was more than ready to sack out for a while. All in all, it was a long night; the good news is that we're not writing the post from the ER this time.

motivation

That is what Athan seemed to be lacking for a while - motivation to be mobile. Scooting was enough for him.

But that is all changing so quickly right now! Athan's awareness of the world around him seems to be growing, and he seems more willing to work hard to experience it in new ways. It is so fun to do exercises with him, and get giggles instead of groans and grimaces.

He can pull to stand completely unassisted. :) His strength is improving, showing us small new milestones almost daily. He is more willing to play while kneeling, and to spend some time on his hands and knees. He takes more risks, which means he learns more about balance as he rocks and wobbles around in space more often.

His therapists have long assured us that his verbal skills would likely boom when his mobility did, which is also proving true. He is talking, talking! He sings and sighs and answers questions and makes requests and remembers names and repeats words... So fun!

I'll try for some visual/audio evidence of these things to post soon. Just wanted to share a few words of celebration of his new-found motivation with you, the pray-ers who have fought for him to be here! ;)

The Adventures Of...

Super Sorting Sister: She can sort anything into color groups in a flash and build tall monochromatic buildings on a single coffee table!


Super Sleep-Sitting-Up Boy: Every super hero has their ups and downs. This one lays down, then sits up, then goes down for the count...:Super Smiling Siblings: They can rise above, and against the odds, play well together. It may not save humanity, but it saves my sanity.

quote of the day

Morgan (in a very matter-of-fact tone): Mom, if I stir my milk with my straw, it will turn into carrots.

better n better

Yesterday was better. Thanks for the prayers!

Today was REALLY good. We got some great news. Athan saw Dr. Napier at optho for a pre-op visit. He was supposed to be doing labs and such to prep him for a surgery in April to correct his strabismus (eyes turning inward), but...

his eyes are getting better on their own! :) Dr. Napier said she rarely does this, but she cancelled his surgery. Yeah! We're going to resume patching his eyes, and see if we can help them continue to improve. Sosososo glad for our kiddo! :)

you'll have your good days...

and your bad ones. Today was a bad one. Ugh.

Athan is clingy and cranky. Morgan was defiant and argumentative. I was tired, impatient, selfish, frustrated. Ryan is in the thick of a busy semester...

BIG sigh...

With the presence and prayers of friends, some time with an understanding hubby, and some slow and purposeful deep breaths, we made it.

Tomorrow will be better.

crazy week

No one is sleeping. That makes everything crazy sometimes! I think Athan is constipated again. Maybe we finally got things moving again today, so there's hope for some sleep tonight.

We've had company, which was wonderful! Thanks, Em, for all your help with kiddos, and for just making you life part of ours for a few days. Miss you already.

And there were just a few extra responsibilities this week for Ryan and I, so maybe next week will be calmer. I'll try to post a clearer update when I've slept!

what we've been up to lately:

Athan has been going for the remote (good news - gaining strength and mobility!):Morgan has been hosting parties:
Ryan has been a princess:
And I, apparently, have been taking all the pictures. :)

more computer woes

My computer has been limping along for a while, but I think it's finally over. So, my post must wait until Ryan's laptop is here and available.

Athan is doing well. Keeps surprising us with his progress all the time. New words, new behaviors, new skills... Rob and Kat were here Sunday evening to witness his first legit attempt to pull up to the coffee table by himself. He won't get on his knees first, so he just tires to come to standing from his butt. He managed to get his rear end about 6 inches up, giggling all the while, before he gave up and plopped back down. So close! :)

Morgan, poor baby, has been sick. Snot, cough, etc. She lost her voice and sounded SO pitiful for a couple of days. We took her to Dr. C and she's on the mend. Still tired. Aside from being sick, she's still learning letters and sounds with mom some days. She still VERY much loves to cook. She is a great little therapist for Athan. She taught him the make the "k" sound, which we'd never heard him do before. She often (very gently) helps him lay down on the ground to practice sitting up, and then cheers for him when he makes it up. So cute.

I'm busier than I've been in a long time, but it's nice to be back out among adults once in a while! I'm auditing a class at the seminary and helping with an ESL class for Korean women.

Ryan is doing what dads and seminary students do: read, write, parent. When he gets time, he's working on the bathroom (it's fully functional - just trim and cabinets and such to do now).

There's the "catch up" for now.

ok, not a trend yet

Athan has been back to waking up a bit more, but still, as I said, there is solid evidence that we might all sleep someday. :)

again

Yep. Slept through the night again! First time he's ever done this twice in a row!

he slept!

Athan slept from 10:15 last night to 7:00 this morning! :) Yeah! I'm pretty sure he woke up once, but he went back to sleep on his own. Ryan woke up this morning and asked "Did YOU get up with him last night?", fully anticipating that I'd just taken the night shift. Nope.

And he woke up so happy. He was jabbering away in his crib (not his usual cry of "hold Mama"), and then kept talking to us when Ryan picked him up and set him in our bed. He just smiled and sang and talked and cuddled for a few minutes until breakfast. It was nice to see him wake up like that.

When he does this, even if the nights are few and far between right now, it gives me hope that he might actually consistently sleep through the night on his own someday.

First Steps mtg

We had a meeting on Friday with Athan's First Steps team to discuss the next 6 months of therapies. It was fun to celebrate the progress he's made and look ahead to new goals we've set. Amanda discharged Athan from VIPS service (a good thing - we're pretty sure he has outgrown the need for that therapy - yeah!), and that time will be replaced now with occupational therapy. Laurie will keep coming twice a week to do PT, and we're looking into getting him a special walker to help with his strength and mobility.

Thanks to Dan, Laurie, Amanda, and Emily for helping us move toward all-around health for our kiddo. We're thankful to have you all as part of our journey.

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.