un-busy

Whew. This is nice. :)

Morgan and Ryan are finished with school for the semester. All the programs and parties are over. Now we just rest and wait.

And one of the things I'm looking forward to doing is updating you all via this too-long-latent blog. :) I'll get some fun posts and Athan updates going soon.

busy

Truly, we try to structure our lives so we use the word "busy" very,very little. However, this weekend, we were busy! I'm worn out, but at least this only happens a couple of times a year. :0) The past few days went something like this:

Thursday - early PT appointment in the afternoon and Morgan's school program that evening.
Friday - spent all day getting ready for the Canadian Missions committee to come see the house, then dinner with Canadian visitors and the people they help support at seminary.
Saturday - cooked all morning for a party Sat. evening, took Morgan to a birthday party for Maddie in Lex, then hosted a Send-Off Party for 3 families who will move in the next few weeks.
Sunday - Morgan's birthday! :) We had pancakes for breakfast, then church, then lunch, then Dad took Morgan to see The Nutcracker (pics to follow), meanwhile I went to a girl's farewell dinner for a friend moving this week. This evening Morgan opened gifts, ate cake, and watched a movie.

I suppose that list is unimpressive to some, but for us, that is extraordinarily hectic. :) Maybe I'm a wimp. It was all very fun stuff, and I'm glad we can resume a reasonable pace now, too. :)

This week Ryan will finish up the semester, we will load a moving truck and cry, and we'll begin life without Rob and Kat next door, with a 5-year-old in the house, and with one last semester of seminary ahead of us.

beginning of the transition

Well, we don't actually move for over 6 months, but the process has started. At least as far as Athan's doctors are concerned....

This week we saw 3 of Athan's doctors. Dr. Irene checked his endo stuff, and all is well. No change. Dr. Coburn did a 6-month check-up, and again - all is well.

And we saw Dr. Bay. She is the Geneticist we see only once a year. Yes, again, all is well. It was our last visit with Dr. Bay. She is sending us copies of Athan's file with genetics in preparation for the move, as well as sending us contact info for geneticists nearer to west Texas. It's our very first "last" anything before we move. You may get tired of "lasts" posts over the next few months, but I suppose there may be a few anyway. We're thankful to Dr. Bay and her staff for helping us smooth the transition out of the Bluegrass back to the High Plains.

the haircut

Some of you will be disappointed by this, others unspeakably relieved. Either way, here it is. Before and after of Athan's first haircut:

Thursday 4p:

Friday 8a:

Thanksgiving in Wilmore '09

breakfast with visiting friends

Just a few fun pics of breakfast this morning with some friends.

my gesture of solidarity

There is not much about Athan's experience that I can voluntarily adopt, but this one I can. Athan has been reluctant to keep his glasses on for long stretches, but we've discovered that he will keep glasses on his face if I have glasses on mine. SO.... I got "glasses." After a short trial run with some borrowed frames, I realized that the tactic worked and I needed something more permanent. I don't need any prescription, so reading glasses were out, as was borrowing Ryan's glasses (headache!). I eliminated the $$$$ options immediately, and finally found some $10 kids frames at the Vision Center in Wal-Mart. I just left in the plastic demo lenses. If I ever actually need glasses, I probably won't choose purple again! But for now, and for $10, and to help Athan, here's where I landed. And so far this morning, he hasn't taken his glasses off yet. :) I'm willing to look THAT dorky for a bit until he doesn't need it anymore. Ah, parenting - sucks the cool right out of you...

Yes, I was cooler once.

Was too!!

Shut up.

a query for my fellow parents:

Why does Athan only poop in the tub on tuesday nights - the only night of the week Ryan has class and it's just me here with the kids?

3 of 4 of us are leaking

Morgan, Athan, and I have colds. Nothing severe yet, but just the general drippy, coughy yuckiness.

Morgan has had the worst of it so far, running a fever of about 103 in the morning yesterday. It dropped back to about 99, then spiked up to 102 again after dinner. She missed school yesterday and today, but she's pretty perky already this morning. No fever, and not much cough, so maybe she's on the up-swing.

Athan and I haven't had a fever or anything. Just lots of snot. And then cough. Not so bad for me - I think I'll be over it soon. Athan, on the other hand, has always had a difficult time coughing effectively enough to clear everything out before it gets infected. So far so good, but we could use your prayers that he can fight it off before it gets worse.

(just a quick p.s.: We had our first adventure of being pet owners last night. Blue got outside the fence, and Ryan chased him for an hour or so. Then I took a turn. No luck. So we dejectedly gave up chase while we got the kids ready for and into bed. After about 3 hours of running his legs of, he apparently decided that this is, indeed, his home. So he came back. We didn't know if he'd do that or not, so we're super happy to have Blue back today. :)

a better walker video ('bout 3.5 min)

unprompted and unaided!! woo-hoo!! :)

Anyone else teary?! Kiddo just randomly volunteered himself to grab his "new toy" (his name for the walker), and take off. With minimal assistance he walked out of the kitchen, through the living room, and down the hall. Yeah Athan!! I'm walking around singing the doxology for some reason... :)

introducing...

Our new pooch. This sweet little guy was rescued by our friends Kelly and Tony this weekend as he was running for his life from all the traffic on the Bluegrass Parkway. Hence his name: Bluegrass (Blue for short). Morgan is so excited we can hardly keep her in the house at all. :) Athan is... warming up. I might be s happy as Morgan is about having a dog. Ryan is talking of building the dog a house, which I'm taking to be a gesture of welcome.

The Ballerina and Bob the Builder

Until just a few days ago, Morgan wanted to be Darby again. She changed her mind last minute and went with Ballerina instead. Good for us that Nana stocked the dress-up drawer with ballet clothes. ;) Athan, happy to just be a part of it all, let me zip him into a Bob the Builder constume I got at a consignment sale for a couple bucks.

ALL of this cuteness was gathered at our house before we walked over to Wilmore's wonderful Treats on Main event:


The ballerina gave us some live action before wearing the costume to school Friday:


And later that evening, built a huge pile of leaves, then plopped down in them an made a "leaf angel":

Eye Patch

Our first assignment from the ophthalmologist: get Athan to wear his glasses. The second: begin "patching" his good eye every day. The former is going well so far. Slowly, but surely, Athan is wearing his glasses - especially when reading. The latter challenge will begin next week, so we will keep you posted on that. For now, if you would like to read more about the method of patching we have been asked to follow, you may go here.

Here is the gist of the treatment, courtesy of the National Eye Institute: "The atropine eye drop works by temporarily blurring vision in the unaffected eye, thereby forcing the eye with amblyopia to be used. This strengthens it and improves vision."

We know this will be tough for a while, but the payoff should be good in the long run. Any volunteers to come hold down the stronger-by-the-day bear cub for an eye drop? Yikes!

hula-hoop-walk in Estes

This is our new favorite place for PT. I think it would be awesome if Athan learns to walk in the chapel. It seems appropriate. You'll also hear some good Athan talkin', and see Morgan dart in and out with Athan's new walker. More on that soon. For now:

Ortho at Shriner's

Athan and I went back to Shriner's today to follow up on his progress with the little braces. The docs were very pleased with his progress, the braces still fit just fine, and we'll see them again in 6 months.

We also saw the PT there, and with her we played with a couple different types of little walkers. I was really only thinking we could look at the options, then obtain one elsewhere. However, they had one available for loan that fits Athan really well. He actually took 10 steps or so, with considerable help from us with pushing the walker. This was the first time he didn't throw a fit about a new piece of equipment to help him. He was mildly fussy, but still cooperated. So the walker came home with us (picture/video soon), and we're going to try to work it into our routines.

cardio

We met with Dr. K again today. The short version is this: maintained. No change in his ECHO. No change in his dosage. No change in opinion about surgery (probably someday, but not any time soon). "He looks good," he says. Of course, "He could gain a little more weight" in perpetuum.

This is good news! I was nervous we were going to have to have another surgery soon. I'm so thankful that the medicine (Enalapril) is working!

this week

We've got lots coming up for Athan this week. We'll be getting him new glasses, for one, whenever we find some time to do it. Tomorrow we see Cardio, and hopefully find out more about when/if another surgery is needed. Wednesday we go back to Shriner's to check-up on his braces (make sure they still fit, etc.), and maybe play with a few of their walkers and see if there's one Athan likes.

I'll do my best to keep updates coming as we get these done this week.

lots of therapy news

Goodness, I can hardly keep up with posting about Athan's progress these days! Good problem to have.

I'll just cover last week: Wed. evening we met Laurie up at Estes Chapel for a very unique therapy session. Athan LOVED the stairs at the back of the chapel, and he crawled up AND down them on his own. Then, even after all that work, he walked across the back and down the center of the chapel with Laurie. She was holding a hula-hoop, and Athan was holding the other side of it. I'll try to catch a picture soon, because I think my description is failing. For now, know that he's always refused to hold the hoop before, that he's never gone that far without several pauses to rest, and that we're going back to Estes on Friday afternoon to try again. :)

Thurs. we went into Lexington for another new challenge. Emily, Athan's OT through First Steps, also works with a private practice on Tu/Th each week. She asked if we could bring Athan in there once or twice a month. They have a great gym set up with foam blocks and platform swings and bolster swings and bean pits... just lots of tools we can't replicate with in-home therapy. Athan had SO much fun and worked so very hard for a full hour. It was amazing. I'm so glad we're taking him once in a while to play there.

Then this morning, Laurie came again for an in-home session. While I read him a book, Athan stood free and balanced on his feet for an entire minute! I've never seen him stand that long!

We are just closer and closer to that milestone of walking!

see? fun! :)

last weekend

I get busy and write about the details of our life, and forget to tell you about our real life...

Last weekend, Ryan and I both had out-of-town events scheduled: He has been planning a backpacking trip with Steve for months, and I was asked to speak at a women's retreat. Once we realized the conflict, we got on the phone. I was only going to be away for 24ish hours, but with Athan's med schedule, daily injection, and emergency procedures to learn, that's no small thing to ask of just any sitter (besides the fact that most of the people who could do it for us were going on the retreat with me :). So after some sifting and sorting and planning and re-planning amongst the grandparents, it was decided that Sid, Selena, and Na-Na would come up and stay with us a few days.

It was the first time Ryan and I were both so far away from Athan at the same time for so long. Despite the most capable caretakers, it chewed on my nerves all weekend that if there were an emergency of some kind (they seem to lurk around a corner with our Athan), I would be too far away to help. My mother's intuition had to go with me to Camp Kavanaugh, unfortunately.

Of course, it was fine. He was fine. They had a blast, Papa Sid learned to give his shot, Nana kept his med schedule on target, and Na-Na made Morgan feel like the center of the universe.

And I remembered that it's not up to me to do this alone. Or even to just Ryan and I. Athan has been entrusted to our family and friends, too, and he will be better for it if we'll let others take a shift.

Thanks, Sid, Selena, and Na-Na for helping this weekend. Broader "thanks" to all who come along side us in parenting our kiddos.

Dr. Patterson

We saw a new eye doc. Ryan took Athan in, so I don't have a first-hand report to offer. But what I've heard is really good.

We are getting him new glasses. And we are going to do a chemical patch instead of a mechanical one (eye-drops instead of an over-eye-band-aid). Dr. Patterson thinks we can really improve his vision with this.

It was nice to get in to see him in 30 minutes instead of 4 hours, too! ;)

PT

Athan has been doing well in therapy lately. Latest milestone: he cruised along the wall yesterday, and he can stand up all by himself for 30 seconds or so. We're all so excited about his progress. Yeah Athan! :)

Athan likes Wall-E

Athan watched Wall-E and LOVED it. Now he has a shirt with pictures of Wall-E on it, which he also LOVES. When he says Wall-E, he actually pronounces the "L" sound, which I LOVE. :)

better today

Slept through the night. No fever. Ate a big breakfast. Maybe we're in the clear this time.

when he feels better

he'll look like this again. :)

off and on

He feels fine for a couple hours, then yucky again for an hour or so. So far, he only has a fever. No cough or snot or pulling at the ears or crying when he fills his diaper. I don't know what kind of infection he's fighting, but the fever alone has been enough for a long day.

At least Ryan got to spend a big chunk of his 30th birthday cuddling with our sweet Athan. Happy 3-0, Dad!

sickly Bear

Athan woke this morning with a fever and feeling yucky. We cancelled the eye appt. he was supposed to be at, checked sugar (103), and just put tired boy down for a very uncharacteristic morning nap. Morgan's off at school, so we'll have the morning to keep and eye on him. I'll try to post an update soon.

constant companions

The newest members of our family: The Monkeys. Athan has latched on to these two adorable guys (apparently named Gus, and the original Monkey). I've pushed every "cuddly thing" I could find his direction, and finally gave up on it. Then he randomly scoots into Morgan's room a couple of weeks ago, finds the matching monkeys, and that's it.

It's actually been a great thing. Suddenly he is the "big brother" to these guys, and it's helping his behavior. He sleeps with them, and he doesn't scream when we leave the room anymore. He'll explain to his monkey's that they have to "take one bite," or "don't hit." So I say, "Welcome, Gus and Monkey." :)

I think she had a good time in ME

as promised

The trip to Nashville was quick, and mostly good. We planned it last-minute, asked Jessica along for the ride, and headed out. What should be a 3 hour drive became 5+ when we spent over an hour in stand-still traffic on I-65. I had to get out and pee in the woods (we were also in the middle of a state part - no exits). But we made it. I got kinda sick that evening, but it was still good to see Mom. She took care of Athan and Jessica took care of me. I probably got more rest than if I'd stayed home. :) We took mom to the airport the next morning, and came home.

Mom thanked me too much for going. In case anyone's forgotten, just re-read some of the beginning of this blog for a reminder about the many times she's rearranged her life and made last-minute trips to help me out. Driving to Nashville for a day was no big deal. :)

More on the Maine trip when we get pictues uploaded.

my phone

So Ryan and Morgan went to Maine to see Jason and Hannah (good times, details later). Meanwhile, Athan and I (and good friend Jessica) took a quick trip down to Nashville to see Grammy, who was there for a wedding (also good times, details later).

The point of this post: I left my phone in the hotel in Nashville. They're mailing it to me, so I'll have it back by the end of the week. Until then, know that I'm not ignoring you if you're calling. Call Ryan's phone if you need me.

Oops.

my favorite school story

So far, this takes the cake. Morgan has regaled us with entertaining tales from school, but the best comes from an exchange of e-mails I had with her teacher. It started with "Morgan is missing school today because...." followed by "how is she doing in class?" There was a good report, followed by this:

"The first day, when she was introduced to the principal, she deeply curtsied, as if meeting royalty. It was the cutest thing ever! I am not sure Ms. Sampson have ever gotten such a greeting!"

:-)

we guessed right

He'd outgrown his dosage. We're going up on his Cortef and growth hormone dose. Kiddo weighs almost 27 pounds! :) Thanks again, all, for being with us through another twist in the plot. We're so thankful for your support.

good again today

Athan had a good day again. Sugars never went below 95, he was in a good mood, and is resting more normally. Tomorrow we'll go see Dr. Irene and talk about what might be behind the crash.

Thanks, all, for praying us through again. We couldn't do this without Him or you.

seems to be doing fine

Athan didn't nap today, but that's no surprise given the triple dose of Cortef he's taken. Aside from that, pretty normal day. He's his usual Athan self. He was silly-chipper at dinner. I tried to post a video clip, but technology is being cranky. Maybe later. For now, I'm going to help Prince and Princess Silly out of the tub.

Also, Morgan started learning to swim today. And I started learning how to can tomatoes (the lid to the pressure canning pot only jumped at us once). :)

Good News

Athan's sitting in front of the TV, smiling, and eating an omelet.

The longer version: He woke this morning a bit cranky, but nothing else very unusual. Then, about 2 minutes later, his whole body twitched. That was my only cue, but I ran and grabbed the meter to test his sugar. 40. Then 35. Ryan had jumped up to mix and give his emergency IM shot of Solucortef, then call 911.

I tried to stay as calm as possible and get Morgan dressed. We took her next door to watch movies with Jeremy and Jessica. Such a blessing to have trusted neighbors who will jump out of bed on a moments notice and babysit.

We got Athan to drink some juice and eat most of a banana. He was still twitching at times, which scared him and made him cry a lot. Once the ambulance arrived, they monitored his sugar while Ryan talked with our endocrinologist on the phone and I packed a bag. As Athan's sugars rose and stabilized, Dr. Irene decided that it was best for us not to transport, since a trip to the ER would not be best as far as evaluating the reasons why he might have crashed so suddenly. Instead, Dr. Irene asked that we monitor him closely (checking sugars regularly, making sure he is eating and drinking sufficient amounts, etc.) and give Athan his "stress dose" of hydrocortisone today and tomorrow. She wants to see him 1st thing Monday morning. It could be something as simple as having outgrown his daily dose, but it's hard to say at this point.

Thank you for your prayers. We will try our best to get Athan some rest today and keep you posted on the progress.

911 again

When I got Athan up this morning, he was twitching. Blood sugar 40, then 35, then 31. We gave his emergency shot and called the ambulance. Ryan and Athan are waiting now. We need prayer.

Ryan "resting"

Most of you know - there's something in the water in Wilmore. People move here and have babies. It just happens. So as most of our friends have joined this club, Ryan has collaborated with several of them to build a bassinet. Ryan helps build the frames, and then our friend Hannah does the sewing for the basket part.

Ok, pictures of the latest effort here. That'll be more clear. :)

crawling example

He's still a bit trunk-heavy, but we're so excited about his progress! :)

revisting Day 1

p.s. we just passed 500 posts on this blog. kudos to all who are still with us! :)

couldn't resist

Look what Morgan taught Athan to do while I was in here posting that last entry:

ahhhh...

Our crazy summer is finally over. Whew. Ryan turned in his paper this morning, and we have a week of Vacation in Wilmore. :) It's nice to feel like the place you want to spend your free time is home.

Morgan loves school. Oh my. She's like a fish in water. Already the stories! I have video to post soon, too, of the post-Day-1 report.

I spoke too soon about Athan - he spent the morning asking every 10 minutes or so with a quivering chin and pouty lip: "Where Mogan?" 'Bout broke my heart!

Videos of school stuff and Athan skills soon!

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.