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! ;)