i know, i know

I haven't been writing. I'm sorry. Among other things, my brain has been swimming with the info in the video below. Meanwhile, the Good Ship Strebeck is sailing along nicely. Specifics soon. (Thanks to Cindy and JD for the link to this vid.)

All better now...

Athan recovered from the procedure 2 weeks ago just fine. He probably took the whole thing better than I did! :) I was sickly for a couple days after his ordeal was all over.

Then we went to Clovis for a belated Christmas gathering, and Morgan got sick (as in puking lots and eating almost nothing for a couple days). Then we came home from Clovis, and Athan got sick (also puking, had to give IM shot of cortef).

But we're all better now. Whew!

Pre op going well. More updates on facebook.

Well lthis is new...

Athan has his dental work done tomorrow. Just a few fillings, but it has to be done at the hospital to monitor heart and endo stuff.

This has been a new experience for us. In Kentucky, all of his procedures, whatever the specialty, were done either at UK or down the road at Central Baptist. Most of his docs knew each other, and all of his records were in the same computer system. Getting instructions for Athans care before, during, and after surgery seemed pretty easy.

Not this time. The dentist is a local independent practitioner, the pediatrician is part of a local practice, and the local Hospital is host for the day surgery. Meanwhile, Athan needs input from Cardio and Endo which are through Cook's Children's in Ft. Worth. Every doc and nurse and staff member is overbooked and overworked, it seems. We can't get calls (or faxes or e-mails or sing-o-grams) from specialists for pre- and post-op care, and we can't STOP getting calls from people who want the money first and NOW.

Ugh. I think most of the wrinkles have been ironed out, hurdles jumped over, and hoops jumped through. Tomorrow we will head up there at 7, have surgery at 8:30, and hope to be home by noon or 1.

Christmas Singing

Athan sings O Come, O Come Emmanuel from Ryan Strebeck on Vimeo.

EW Christmas Concert from Ryan Strebeck on Vimeo.

Athan wins again

Ok, parents. I need help. Again. The picture you see above is the result of "you may not get down until you've taken at least one bite." I lost. After I snapped this pic, I gathered him up and put him down for his nap. In case you can't hear it from there, he's already snoring. Surprisingly, this isn't so much about eating or not eating his food. He's a good eater when he's not already dug his heels in about it. It goes like this:

Here's the problem we face with Athan at least three times a day right now. It starts quite amicably: we give him a choice to make. Today it was "eat lunch" or "rest." Sometimes when he comes home from school, he's not hungry yet if they've just had snack. He gets sleepy before he gets hungry. Usually I just try to decide which is right for him, and act on my decision. Today I couldn't tell, so I gave him a choice. Per usual when given an either-or question, he announced his decision. "Rest."

So we head for the bedroom. No problem. He goes down for a nap most days sans protest. Normal. Except half way there, he changes his mind. "No I want to eat wunch first, Mama." Ok.

So we head back down the hall toward the table, where lunch is sitting ready for him to eat. "Actually, I want to rest first." Ok.

Back down the hall. "No lunch first." Ok. Back down the hall. "No rest first." Ok. Back down the hall... I calmly let him walk out his indecision for a few minutes until the tears come. He starts to shout at me each time he changes his mind "NO MOM I SAID REST FIRST!" even though I'm not arguing with him or impeding him in anyway from doing which ever he chooses.

Then I try to intervene, not because I'm in a hurry to get him to bed or to the table, but because it seems the only way to rescue him from the cycle of indecision he can't break alone. Of course, it's going to go badly from here because no matter what I do, it's the wrong choice. But now I've made a stand of some kind, and I can't let him just scream his way out of it. Thus "you have to take at least one bite before you get down" (the One Bite Rule is long-standing at our house, so that's not a surprise to him). So he cries into his pile of apples, ignores his quesadillas, refuses consolation, and falls asleep at the table (in this instance).

It happens almost any time we try to offer him a choice, and this is where I'm stuck. I don't know how to help him. I've tried letting him come to the end of indecision himself, and he just starts crying and gets angry. I try to intervene and decide for him, and he screams. I try to avoid giving him any choices at all, which might be why we're still in this pattern after so long, or it might be the right thing to do... AAAAHHH! I'm stuck.

Morgan never did this. It was enough to just say "you can't have both" or "you may decide or I will help and decide for you." She was ridiculously rational. Athan is not.

Any advice? Is he just too young to do what I'm asking him to do? How do I help him enjoy the freedom that comes with a choice instead of feeling trapped by them, to teach him how to choose? We're going on well over a year of this same pattern here, so any change would probably be a good one. :)

6

Morgan is 6 years old! During her "birthday weekend," she got to sing for the church twice, make a gingerbread house with Nana and Papa, and have a birthday party. We had a few friends over for cake after dinner on the actual day. There were guests from 6 months to 86(ish) years old, and Morgan, of course, seemed equally comfortable and happy with each extreme and everyone in between. We're thankful to the friends and fam who came (some on quite short notice) to celebrate Morgan with us. She's pretty excited about being 6!

I finally gave in. I've said for 5 years now that I wasn't going to spend alot of time on a crazy kid birthday cake for one too young to really care. But Morgan's six now, and she cares. :) So I called my mom-in-law for tips from a pro, and set out to make Morgan a Castle Cake for her birthday (pink, girly, princess-y castle, of course). I watched this video, then modified it a little. The pink sprinkles kinda help cover the fact that I really stink at icing a cake. :)



Might have been a little better if I'd done strawberry cake, but Morgan's only request was for chocolate. :) Here's a clip of her reaction to the cake, and the birthday song:

Bummer

I'd put it off for months, but I finally made the kids both an appointment to see a dentist.

Morgan's fine.

Athan has cavities. Several. Probably somewhat due to genetics. I also wonder if the "drool pool" that stays in his mouth because of his low tone has contributed. Whatever the reason, he has to have some fillings. It'll be done up at the hospital here in Abilene on January 7th. We'll have to arrange for all of his Endo stress dosing ahead of time.

Yucky.

dress up

Morgan The Star

Morgan was chosen as the Austin All-Star for Mrs. G's class for the 2nd six weeks. She gets to go to lunch tomorrow with all the All-Stars at Mr. Gatti's.

AND I got a note in her backpack today informing that Mrs. G's substitute earlier in the week said Morgan was "very helpful" to her.

Way to go Morgan! :)

potty training!

We've been steadily working with Athan to go on the potty. We're not there yet, but today we had a big milestone: Athan wore the same underwear and pants from morning to bath. No accidents! We still have to take him to the potty every once in a while just to make sure, but we didn't change clothes or use a single diaper or pull-up today. Woo-Hoo! He wears a pull-up from bath to bedtime (which is dry so far), and then a diaper at night.

Way to go Athan Bear!!

a happier snippit

Tonight the kids and I spent an hour just chillin in the back yard. Athan decided to be "Athan Bot," inspired by a Sesame Street skit. He spoke in only two pitches, with halting syllables, called me Mama Wobot, and ended every sentence with "beep, beep." Apparently, Athan Bot's primary function is to retrieve pecans one by one from Mama Wobot and take them to the yellow bucket.

Meanwhile, Morgan found a Magic Stick, which had many functions. It could distinguish between good and bad pecans, it could locate smallish Magic Twigs that were saved in a pile for later use - namely turning oneself into Tinker Bell, and it rediscovered various Lost Treasures which were collected in a bucket.

It was a good evening. :)

i missed it.

There was a Window into my daughter's soul this morning, and I missed it.

It was a frustrating morning. We woke up a little late, and many of you already know that trying to rush a groggy 5-year-old through a morning routine doesn't really work. She lingered too long over breakfast, complained about her clothes and shoes (bringing long pauses before each item was finally on her body), and then whined through most of the brush-n-fix-the-hair process.

As I twisted the rubber band around her ponytail, she tearfully reported this to me: "Mom, I'm just sad because my friend M_____ at school always fixes her hair prettier than mine."

I was frustrated and we were in a hurry, so I threw some empty words of pseudo-encouragement at her, ignored her tears entirely (assuming them to be just an extension of our grumpy morning), and hustled her down the hall to grab the jacket and backpack and run to the car....

Then later, when the house was quiet and I faced 7 long hours before I could see my Morgan again, I cried a little. Partly for my morning fumble (which will require me to apologize to my daughter later today). But mostly, the tears came for the fact that it has already started for Morgan. This silly thing that women do - petty competition with one another to be the prettiest one - has started at age 5. Sans intervention, it won't stop for a long time, if ever.

So I prayed. I confessed. I asked the Lord if there's a better path through this for Morgan than I can see, and if there is, would He please point us both toward it?

And now I'm asking you, our community, to help me, too. Help Morgan know what real beauty is, and how to pursue it. Demonstrate celebration of the beauty of others WITHOUT putting yourself down in the process. And pray with me for the Holy Spirit to tell her these truths in ways none of us can.

It takes a village, right? :)

WT rehab

We finally got in for our evaluation by the wonderful folks up at West Texas Rehab. Athan charmed everyone in the room, of course. :) And, as expected, they confirmed yet again that Athan demonstrates developmental delay in large and small motor skills. That's it. Every other area shows him age-appropriate or ahead.

Also, WT Rehab contracts with the schools to do therapy, so Athan sees some of the same folks at school as he will at "the gym" (as Athan prefers to call it). The PT - Jody - is good with just doing sessions at school and evaluating later to see if we need to add some sessions, depending on his progress in the next few months. OT we decided to add one half-hour session every other week on top of what he gets at school.

Jody also referred us over to ortho to get Athan fitted for some new ankle braces. He did NOT like the casting process they did to get a mold of his ankle. They'll call in a few weeks when they're ready and we'll go in for a fitting.

So far, the report from the therapists is that Athan is a joy to work with. We're so proud of his determination and hard work! :)

Cardio

Ryan took Athan to Mansfield (near Ft. Worth) yesterday to see our new Cardiologist, Dr. Hackman. She was really good, Ryan says. I think we'll keep making the drive down there to make sure we can see her (instead of going to the clinic here in Abilene where the practice sends different docs from time to time).

Athan's ECHO looked good, and his heart is not enlarging anywhere at a rate that is higher than his normal growth rate. In case you don't remember, he has small leaks in his mitral valve that could cause his heart to enlarge. We have known since just a few days after his first heart surgery (in April 08) that he will need another surgery someday to repair the mitral regurg. Dr. K (cardio in Kentucky) recommended waiting as long as possible to do the repair. Dr. Hackman, however, said that if it was her kid, she would want it done sooner rather than later (as in maybe when he's 5 instead of when he's 10 - ish). So she plans to watch his ECHO (the EKG was a dismal failure - Athan was too wiggly and loud to get any results), and to take Athan's case to her colleagues for more opinions. We'll see her again in six months.

Endo

Athan saw the endocrinologist today. This makes our second visit since the move to Dr. Paul Thornton. He works with Cook's Children's Hospital in Ft. Worth, but they have a clinic here in Abilene that's really just down the street from us.

The first appointment didn't go well for me. Maybe Dr. T was having a bad day and maybe I was, but it was stressful. Plus, who could fill the shoes of the fabulous Dr. Irene?! But today went better. He was nicer. Or I was. Or something.

And Athan is maintaining well as far as his Endo stuff goes. His IGF-I was low on his last labs, which means we go up a bit on his growth hormone dose. Otherwise, all stays the same and we go back to see them in 3 months.

Athan and Ryan just left to drive to Mansfield to see Cardio tomorrow. We won't usually have to make this drive, but this time we just took the quickest appointment we could so he could see a cardiologist. The referral process took quite a while, and I'm anxious to make sure his meds are correct about his heart stuff. After this first one, we can schedule follow-ups here in Abilene, just like Endo.

I'll try to post an update when I hear from Ryan tomorrow.

the stuff

I've spent much of my creative energies the past few months on 3 things:

1. Helping our kids navigate transition in a healthy way.
2. Entering the life of the congregation at EWUMC in a healthy way.
3. Unpacking and organizing our stuff.

1 and 2 went well, I think, and seem like meaningful pursuits. 3 is... necessary. And in the long run, I know I'll be glad I'm doing some of this work on the front end. But I'm re-heeeeealy ready to stop fiddling with all of our stuff!

Last Saturday was a notable milestone: I unpacked the last box. Woo-hoo! Now all of our stuff from storage (that's been there for the whole 4 years we were in Kentucky), plus all we brought with us in the truck, is "settled in." I know what we have, where it is, and why it's there. Piles of things have been donated. Other piles trashed. Some boxed and stored, and the rest organized. Whew.

Now my gracious friend Missy is helping me decorate (on a tiny budget).

All of this is exhausting and feels kinda shallow sometimes. But I want my home to be a warm, welcoming place. For my kids. Our guests. Myself.

That is the last few months of my life, at a glance...

Ahtan can climb stairs!

So so proud of him! These are the 3 little steps he does each day at school...

school - Morgan

I suppose it won't surprise anyone that she's having a great time. :) She loves Mrs. G and seems to be happy to see all of her classmates every day.

One of her favorite things is Wellness Wednesday. Each Wednesday during PE, the kids run laps and get rewards throughout the year for meeting goals and making various milestones. Morgan is loving it. A couple of the parent volunteers have informed me that she cheers herself on as she comes by to mark her card after each lap... :)

It has been a bit difficult for her and for us to adjust to a full day of school. Can I just say that full-day Kindergarten is a bad idea?! It's a bad idea. She gets so very tired. I know she'll grow into it and her stamina will be fine eventually. Probably soon. But I still think it's silly to make 5 year old kids have an 7 hour school day.

But fatigue aside, all is going will with Morgan and her Kindergarten adventures.

school - Athan

Athan LOVES his school. Every day he greets us with a wildly excited "I had so much fun at my school!" It's so good to see him that excited...

So school: Athan qualifies for preschool through the public schools at age 3 because of his developmental delay (all motor delay). So he admitted through the special ed program, and is part of a classroom that is designed for kids with special needs. Abilene ISD is GREAT in that they practice "reverse integration" with their special ed classes. They have allowed any teachers in the school to put their 3-year-old in the program as well. So Athan is in a class of 12 or so (with about 3 or 4 adults in there), and I'd guess about half are "normal" (kids with no special needs or learning delay), and about a quarter of them are kids like Athan (some delay in motor or speech, but not greatly delayed), and then a few kids with many special needs and more pronounced developmental delay.

Athan began the year going 2 hours each morning, from 8 to 10. We just had an ARD meeting and they recommended a longer day. They thought he was ready for a 4 hour day. And maybe he is. But I'm not! I like my kid, and our time together is short enough. However, with the addition of some therapies and such, I didn't want him to miss ALL the class activities. So we've decided a 3 hour day is good for him. He will go each day from 8a to 11a.

The main reason we are choosing school for him right now is for therapies. [Laurie and Emily - you'll love this - same schedule as we had with you guys!]: He'll get PT twice a week, and OT once a week. We're excited to get feedback from the therapists on his progress once they get rolling (this week, I believe).

And, of course, his teachers L O V E Athan. Love him. I think they recommended a 4 hour day just to have him around longer. :) It does my Mama's heart good to hear what they say about him.