Friday, July 6, 2007

as per request

I keep updating on the kids, and I forget about Ryan and I.

Me - I'm doing well. We have had so much great help, I've only had one night of so-far-beyond-tired-I-can't-remember-being-asleep. My body is still doing well, and as a celebration of being able to move again, I played frisbee in the yard with Dru, Meredith, Ryan (and Morgan on his shoulders), Brian, and Emily. However, my triumphant return to mildly athletic endeavors was cut short by Dru's beautiful left-handed loft of the frisbee onto the roof of our 2-story building. We're hoping for the drought to break for 2 reasons now - maybe rain will bring Donut Man's frisbee back to us.

Ryan is scouting houses, and has done some quick and creative wood-work projects to help us fit 4 people into this place. Yesterday he built and mounted a special shelf for Athan's meds and a little stand for our printer. Today he'll finish a bookshelf and some more office organizing stuff.

Morgan charmed the staff of Tastebuds today at lunch with Aunt Loy and Mom. She had another restless night, so we're on a wierd schedule.

Athan is having a great day - maybe showing us he's almost ready to drop that middle-of-the-night feeding. horray! :)

Thursday, July 5, 2007


happy 4th (late)

Athan had a little rough patch yesterday - he threw up yesterday morning. Confession: It was probably my fault. I get so nervous about keeping him fed (because both times we went to the ER he wouldn't eat) that I think I over-fed him. He was miserably stuffed. Once he threw up, it was obvious he felt better because of it. Mom is relaxing a bit and feeding him when he's actually hungry. Sigh...

Morgan had a great day yesterday! She is resting better (going to be on time, staying there through the night). She went to a parade with Brian, Emily, and Aunt Loy. Ryan and I were so glad she cou She saw a big white dog named Gabriel, and horses and fire trucks (as per her report). Later we had homemade ice cream (thanks to Dad), pizza for dinner, and a late trip out with Dad, Adam, and Dru to see fireworks. Whew! :) I'll get pics up soon...



Tuesday, July 3, 2007

sleepless in Strebeck-ville

I think the planets are misaligned or something. Neither one of our kiddos was much for sleep last night. They were both in pretty good moods, which is helpful if you must be up at 3 a.m. :)

Morgan didn't fall asleep until almost 11 last night, then woke up at about 1:30 a.m. for no reason that we could discern. At 4, I finally quit trying to make her stay in bed, and we went downstairs and ate cereal and watched a movie. She finally slept a little - from about 6 to 9 - but she's up-n-at-'em today.

Athan was a little fussy early into the night, and then he had hiccups that kept him awake.

When Athan graduates high school, I'm sleeping for a month... :)

Sunday, July 1, 2007

i'm running out of titles! ;)

Morgan and I left the boys here this morning and went to church with Adam and Dru. It was good to worship corporately again.

Athan is a little gassy again today, and we've had a little trouble getting him to take his meds. But other things continue to improve: his swelling is down, his diaper rash is gone, and we finally got all the adhesive off of his scalp (from where they used tape to secure his IV).

I continue, without success, to search for adequate words to convey our gratitude. I can't. So for the 1000th time, I'll just say "Thank you," and hope you hear the weight of those words. We are swimming in the many ways you all continue to actively love us.

Saturday, June 30, 2007

sweet Saturday

Athan is having a good day today. We had a bit of a long night - I think he just had gas. His epiglottis (flap that protects his airway during swallowing) has a wrinkle in it, so he takes in quite a bit of air when he eats. Today meals have gone more smoothly, and I think he feels better because of it.

Morgan and I had a little mommy-daughter lunch at Solomon's Porch today. She is so funny! :) It was good to get some time out with her.

Again, both kids will be asleep soon, so I'd better do the same! :)

Friday, June 29, 2007

THE changing table

Ryan built a dresser/changing table for Athan before he was born. Some of you had asked to see pictures, so here are a few. We actually got a random magazine in the mail, and saw one we really liked. But instead of spending $800 (ha!), Ryan decided to build one for a spring project. The picture of the one he copied is here. These pics are of Athan's. He built it in a dark little garage (thank you, Chad) and didn't have much of a shop set up. Also, he used an old technique with wooden dowels for all the joinery instead of screws or nails.



pics! :)


staying home :)

Dr. Coburn was very pleased with Athan's condition this a.m. There is still some swelling, but it is down from yesterday. And Athan is eating well, alert and interactive after he eats, sleeping well, filling diapers, and holding his sugars up. We will continue to watch him closely over the weekend - especially after we give his growth hormone tonight - and of course go to the ER if there are any big indicators that he needs immediate attention. Otherwise we will call and report to Dr. Coburn on Monday morning about how the weekend went, and go from there.

On top of regular newborn-in-the-house-so-no-one-sleeps, it's tough to rest much when you have to prepare for a possible hospital trip (emotionally, logistically, etc.), so while Athan is asleep and Morgan is running and errand with her dad, I'm going to take a nap! :)

Thursday, June 28, 2007

watch-n-wait again

Athan went to see Dr. Coburn again today. Early this morning, I was a little concerned because his fontanel (soft spot on his head) seemed swollen. We spoke to Dr. Irene first, wondering if it was a possible side effect of his growth hormone. She recommended that we go in and have Dr. Coburn look at it, so she called and asked him to work us in today. We went in at 1 this afternoon here in Wilmore to see him (precious friend Dru to the rescue again - kept Morgan so we could both go with Athan). Everyone agrees that Athan seems to be doing really well - eating, sleeping, diapers, not more fussy, no fever, etc., but no one is comfortable with the extra fluid we can feel. Ryan and I are watching him closely overnight to see if it is just some swelling that will resolve on its own, and we have another appointment at 8:30 a.m. with Dr. Coburn to check it again. If the swelling is still there, he may refer us back to UK Pediatrics as an out-patient tomorrow so they can look at him further.

Morgan is having a tough time with her schedule stuff these days. She missed a nap, and didn't sleep well last night. For her sake, we're trying to get back to a schedule that allows for regular sleep for her (at least ONE Strebeck should be sleeping normally, right?! :-).

Ryan got Mom and Uncle Josh to their respective airports today, so it's just the 4 of us here tonight. It was so great to have them both here. I miss them already.

Wednesday, June 27, 2007

1st outpatient appointments

Hey friends-

The whole family had a full day at the Kentucky Clinic today. Morgan is worn out, but Athan faired pretty well today! Our appointment w/ Dr. Irene (endocrinology) was first on the list this morning, and it was good to hear that she was pleased with Athan's progress over the last few days. She ordered a few labs to double check the current medication doses in case they need to be lowered or raised. The nurse drew blood and the little guy hardly protested this time as if to say "is that all you're gonna do today!?"

#2 was with opthalmology today, and Dr. Napier checked out Athan's optic nerve. There was initial concern in the NICU that his optic nerve was small, but today's exam didn't really seem to confirm that. She mentioned that it was not "robust & large," but also that it was not noticeably/obviously in bad shape. We were excited about that news for sure. As with any baby, we'll watch him to see how he tracks for the first few months and go from there.

So, all in all we were happy with the rounds today. It was great to be able to park in the hospital garage and leave a few hours later! Thanks to you all again for your continued prayers and acts of love on behalf of Athan & the whole family. If you catch Morgan at the right time of day (ha ha) she will remind you of the Psalmist's words: "Taste and see that the Lord is good..." Amen.

Tuesday, June 26, 2007

improvement

All around, things are improving at our house. Athan seems to be resting better between meals, and continues to take his meds well. Ryan and I are settling into new routines and communicating well about how to keep navigating this transition. Morgan still has moments of frustration, but she is making leaps and bounds in adjusting to life with Athan in mom's arms sometimes.

And Grammy Tammy is cleaning! :) Those of you who know my mom already know that is no small undertaking. I've always said I was raised my Mr. Clean's lesser known twin sister. And I am so grateful. Not only do I not have to do the actual cleaning, I am just more relaxed in a house that is neat and clean. It is amazing how much your environment affects your emotions. Thanks, Mom.

Tonight my brother Josh will fly in to be with us for about 24 hours. I've tried to tell him there are some nurses he needs to meet, but he's not sold on the Lexington-Austin long-distance thing. Even so, I'm glad Uncle Josh will be with us soon.

The next few days will be kinda busy for us: Josh gets in tonight. Tomorrow we will be in Lex for follow-up appointments for Athan with endocrinology (9:30) and ophthamology (1:00). Note to anyone at the hospital: we'd love to see you! :-) Then Uncle Josh flies out tomorrow night, and Grammy Tammy leaves EARLY (as in leave our house about 3:30 a.m.) Thursday morning. If I don't make it back to the computer before, I'll try to update again Thursday morning.

Monday, June 25, 2007

explanation

In the excitement of coming home, I forgot to offer much wrap-up that we got from the docs during our last stay at the hospital. Basically, the reason kiddo's sugars dropped and we had to go back to the ER was a medicine issue. The pharmacy has to mix up the liquid form of his hydrocortisone, and the solution wasn't holding stable. The actual medicine was settling to the bottom, and all he was getting was sugar water. So no we just crush a pill and mix it with milk, so we know he is getting the medicine. As long as he is getting the right dose, he does just fine with his sugars.

I'm sad that he had to go through all of those tests and labs again before we found out the reason, but I am glad that we found a reason! I was getting nervous about coming home and having another episode and another trip to the ER, etc. But now I am (increasingly) assured that he will continue to do well.

Also, it has been a while since we addressed what this all may mean long-term. And still, we don't really know. It doesn't appear that there was any insult to his major organs during his respiratory distress (no lasting damage from lack of oxygen). As far as his endocrine issues go - it will be a medical marvel if he is not on hormone replacement for the rest of his life. Of course, if Jesus wants Athan to be that medical marvel, we're all for it! Either way, we are all for whatever our boy needs.

And again, thanks for staying with us in prayer. How powerfully we see your prayers at work in us still.

Saturday, June 23, 2007

just home

We're just home! It is so nice to just be doing relatively normal baby things at home - changing diapers (he is definitely getting enough to eat), treating diaper rash, not sleeping in very long stretches, helping Morgan adjust...

We're also doing the unique things that our boy will need - like figuring out a safe place to keep all of his meds together and away from Morgan, deciding where to keep our "sharps" bucket (for his used needles), and establishing a good routine at each feeding to crush pills and fill syringes.

Athan is doing well. For mom's peace of mind we checked his sugar today, and it was WAY good (110 for those of you who will care about the numbers). He is getting better and better at taking his meds - even phenobarb goes down pretty easily these days. In a few hours we will give his daily shot for the first time at home.

Morgan has had her ups and downs today. She seems to be mad at mom and dad some, but not at Athan. She did really well this morning - she was so very sweet to us all. This afternoon she seems a little tired of the new routines. But right now she is going to the grocery store with Dad, which should be a nice treat.

Grammy Tammy is here for a few more days, so we are leaning on her to help us get some things done. The plan was to be in New Mexico by now, so our house was ready for us to move out for the summer. Now that we've moved back IN for the summer, I've gotta find our stuff! :)

for the Kentucky crowd (re: meal schedule)

We have been so blessed by the way so many of you have asked to help with meals and such now that we are home. My sweet friend Dru has volunteered to help coordinate your efforts so that nothing goes to waste. Her number is 859-553-4318, and she will work with you to find a good day to bring a meal. Thank you all for your willingness to love on us through service.

Friday, June 22, 2007

Home; part 2

"Just making sure there's still room for me in the chair!"

Gram replaces the hospital bed for a while-

battle scars from checking blood sugars

on our way

We just went over paperwork, and are officially discharged. We will gather the rest of his stuff and head home within the hour! We get to take our baby boy home again. :)

today's the day

We've spoken to the doctors, and we think everything should be fine for us to go home today. We will give his shot at noon, stay a few hours to watch him, and head home later this afternoon if all still looks good.

Please pray for my Morgan. She has had to deal with so much already, and this next step of bringing Athan home will probably be the toughest one so far.

I can't imagine how anyone ever survives without prayer and real hope. Thank you for keeping us awash in both.

Friday morning

Athan had a good night last night. His sugars were consistently up, and he slept and ate well. We were told that they have eliminated the possibility of any additional metabolic disorders, and neurology decreased the dose of his phenobarb. He just had a little more blood drawn to check his electrolytes and potassium level again, and we were so relieved that it was easy to get the blood this time. It looks like we are still on track to go home either this evening or tomorrow morning, pending his next dose of growth hormone (shot) and how he handles it.

Ryan stayed here with me last night. I'm sure many of you know that hospital cots don't hold two adults very comfortably! :) Still, it was good to get a "trial run" of a night at home (sort of - there are still hospital protocols we have to follow that we won't at home - like taking his vitals every 3 hours, etc.).

Thursday, June 21, 2007

a much better night

Athan had a smooth night. His sugars dropped a little, but they never left the "normal" range and seem to be on the way back up a little now. My emotions seem very tied to the number on the OneTouch machine (that tests his sugar), so I ride a bit of a roller-coaster when he does. Sugars are up, mom is "up." Sugars go down, mom gets down.

Today, we had more labs, which means more blood drawn. Yuk. Also, the new medicine will be here this afternoon, and we'll see if our boy can keep his sugar steady with that added. Endocrinology wants him to start growth hormone, which unfortunately means we will have to learn to give him a shot every day. He is just going to be one tough kiddo!

The plan now is to spend the next 24 hours doing all of his feeding/care/meds just like we will be at home, and watch him. If doctors and parents are comfortable with his condition and our readiness, we may go home then. Maybe the next day.