photo stuff is working now...

soon

I've been trying to upload some photos, but Blogger is being cranky this evening. I'll get those up as soon as I can.

Our weekend has gone well. Athan continues to do well, and Morgan has been great.

The big news (at least to me) is that I got to sleep for 7 straight hours last night. Wow! I went to sleep at 10 last night, Ryan fed Athan a bottle at 1, and then he slept until 5 this morning. I feel like a whole new person. I probably haven't slept for 7 hours in a row since... hmmm.... March, probably. Yeah for sleep! :) This can't happen very often, because we usually need to get him up for an extra feeding in there, just to keep his calories up. But it will be a great treat once in a while.

Ryan is off studying Greek tonight, and I'm gonna go put kiddos to bed. Hope you all had a good day of rest today.

three appointments

We spent the day at UK clinic again today with Athan. We saw endocrinology, ophthalmology, and cardiology. Despite being a full day, complete with the ever-dreaded blood draw to wrap it up, it all went pretty well.

Endo: Based on some lab results, we may get to decrease his thyroid medicine a little. Otherwise, everything is going well. We may be able to space out his Cortef to 3 times a day instead of 4, watching his sugars for a while to make sure they hold steady during the switch.

Cardio: He is (surprise, surprise) still underweight, but addressing that issue was much more cooperative and less threatening this time around. We are going to do our best to pack on some pounds, of course. Now that his reflux, cough, and constipation are gone, we can increasing feeding frequency and add some fortified bottles back in to try and plump him up. Still, Dr. K was pleased with how Athan looks. We repeated his EKG and ECHO today, and there was not much change in either. Also, no change in meds for now.

As far as heart surgery goes, Dr. K said growth is more important than getting to the surgery quickly. As long as Athan is growing well, the surgery can wait. At least it can wait up to (but probably not past) his first birthday.

Ophtho: One of his eyes may be turning inward a bit, but it is really too soon to tell. Dr. Napier suggested a couple of things we can do (like putting a patch over one eye at a time while he is awake to make sure he is using both eyes equally), but she didn't feel strongly that we should do it right away. Mostly, we're still in a wait-and-see mode about his eyes. So much of his ability to track depends on head control, also, and some of his visual inconsistencies may be do to problems with his low muscle tone. Physical therapy with Laurie will show us just how much that is influencing his tracking.

Morgan spent the day with Jason, Hannah, and Margo again. And they washed our dishes. And they fixed us dinner. It is humbling to keep living on the receiving end of so many acts of service. The community of people around us has shown compassion with stamina, and we remain so very thankful.

small favor (attn: all blog readers)

Early on when the comments started pouring in, we realized there was no good way for us to respond to them in the "comments" box. Most of the time we wouldn't know what to say anyways, for we are mostly in awe of the way you have loved Athan & our family through all of this.

However, there are times we would like to respond and for many of you we do not have current contact information. If you have followed this blog at any time (whether you have commented online or not), could you do us a favor and send your contact info (name, address, etc) to us at athansjourney@gmail.com

Thank you all so much-

The Strebecks

my favorite new toys...

I've found my toes! (and tell me that grin doesn't melt your heart!)

PT again

Laurie came again today to do physical therapy with Athan. She seems really pleased with his progress. He is working harder with his neck muscles to hold his head steady. I think the exercises we have been doing are going to help him so much. He still prefers to keep his head to his right side - probably a preference he developed in NICU when his IV was on his left side. But she showed me more stretches today to help him work on that, too.

Laurie also brought her daughter Jordan with her today. Jordan is ten, and she's fabulous with Morgan. They went outside and Jordan chased Morgan around the back yard for us during Athan's therapy. SO fun! :) Morgan also got to go to the park again today with the Herons. It is so good for her to get out of the house, and to have people pay attention to her instead of just Athan.

I'm feeling better today. Thank you all so much for praying. I know there will be more days of grief and anger, and I'll ask you to pray me through those. Today, I've come up for air a bit.

I caught some good pics of Athan today. I'll try to get one up soon.

good times, mostly...

Athan is feeling well, it seems. His cough is almost gone, and his congestion is clearing up little by little.

Morgan is potty trained! We're not totally accident-free yet, but she has not had a diaper on at all in almost a week.

It was good to have Courtney here for a couple of days. Ryan graciously stayed here with the kiddos so she and I could have lunch yesterday. We also went to the mall to get haircuts, which I badly needed! For the first time since jr hi, I have layers... hmm....

Ryan is studying today. He got a little behind last week when Athan was sick, and more this weekend with company here and other projects to work on. I think being gone today will help him catch up.

All in all, things are going pretty smoothly today. On the outside, anyway. Inside... it has been a hard day. A very surprising trigger sent me into much grief today. I'm just sad. And mad. Mad that Athan has to be on meds for his whole life. Mad that his body isn't doing all the things that most people's bodies can do. Mad that every other time he nurses he has to start with medication. I know all the stuff - like it could be much worse and at least he's alive and can't I just be glad for the good things? I am, but it's not bigger than the sadness and anger today. I hope I can navigate these emotions appropriately so they don't linger or take over.

PT report and Courtney's here!

Physical therapy went well. Laurie showed us several ways to help Athan work his neck muscles. He has gotten in the habit of "stacking" - he hangs his head back so that all the vertebrae in his neck stack together and support his head without having to use his muscles. We have some exercises to do to help him learn to keep his head forward. Laurie was great with him. She would work with him until he got fussy, then take a break and let him settle down before she pushed him more. We'll see her again twice next week (Wednesday and Friday).

Also, my friend Courtney is here! :) She travels for her work, and it brought her to the Lexington area this week. She has the weekend off and is staying with us. So good to have her here! :)

MUCH better

Athan is feeling much better, and I've gotten much more rest, too (Ryan took the tough shift last night and gave a bottle at 3 a.m. - what a guy! :). Athan's reflux is improving, and his temperature is steady. He still has a nagging cough, but he seems to be kicking that also.

We will go ahead and start Athan's PT today. Laurie will be here at 4:30, so we'll try to get an update posted to let you know how that goes.

Quick "cute kid" story: This morning, while I was feeding Athan, I was reading a book called "Fancy Nancy" to Morgan. It is a current favorite around here. As we were reading, I asked Morgan "Are you a fancy girl?"

She looked at me with the non-verbal equivalent of "how dare you speak such blasphemy!" Then she said, "No, I'm not fancy. I'm just Morgan." :)

oh yeah, and...

For those of you following our calendar, we were supposed to start Athan's physical therapy today, but did not because of his fever and fatigue. If he is better by Friday, we'll see Laurie at 3:30 p.m.

tough day

Athan has not been feeling well at all, which is why I have not been able to post for a while. His reflux has been terrible, and he is having some trouble pooping. He also has had a fever for about 24 hours, so he didn't eat or rest well during that time. Better now, though. The fever is gone.

Good news: we get to stop the enalapril. I think it has been causing the same problems as the captopril did, and his cardiologist told us yesterday that we can stop giving it to him. Next time we see cardio, he may adjust the dosage of the 2 other heart meds Athan is on, but I think that will be much better. He has never had any adverse reaction to the other meds.

Ryan stayed home from class to help with Athan today, and Hannah kept Morgan from mid-morning until nap time. I got some sleep this morning, and Ryan caught a nap this afternoon, but someone has been holding Athan for almost every hour of the last 24+. Tonight may be another long one. I need your prayers for stamina, and the ability to remember at 3 a.m. that I will get to sleep someday.

thanks!

Ryan's back is better. He is, in fact, cooking me breakfast as I type this. Athan seems to feel better, too. He cried and cried until about 3 a.m., but he has slept and ate well since then.

Ryan says I shouldn't have posted about his back. Evidently injuries don't count unless they hurt for at least a week.

in case you're awake

Would you pray for our family tonight? Ryan strained his back today, and cannot stand up straight, much less rock Athan or help Morgan with the potty. Athan is not feeling well - having some reflux again, not eating well, and not sleeping much. He'll need lots of Mama tonight. However, I got to sleep from 11 to 12, then from 3 to 6 last night, so I'm a little low on awake-ness tonight. :)

Thanks for praying!

First Steps Planning Meeting

We met today with all the folks that are involved in Athan's therapy through First Steps. Our service coordinator will be Corey, and he'll help us make sure everything is working together well. Athan will see Amanda with VIPS once a month, and Laurie for physical therapy once or twice a week. He officially starts physical therapy on Wendesday, and we are excited. Just in the past couple of weeks we have followed some of Laurie's suggestions, and he has shown so much improvement in his movements and even in head control. I'm looking forward to learning more from her, and seeing how Athan responds to the therapy.

new med and movement milestones

We talked to the cardiologist, and he substituted Enalapril for the Captopril. Hopefully this one will have the same positive effect (reducing leakage of his heart valve) without the nasty side effects of reflux and cough. We just started it yesterday, and so far everything looks alright.

Also, Athan was lying on his side on one of his play mats today, and he was really investigating the patterns he could see on the mat. He was reaching for some white dots on a black background, which shows much improvement in his arm movement and hand-eye coordination. Then, over the next 30 min. or so, he kept scooting to see new parts of the play mat, and managed to move his body about 270 degrees around in a circle, rotating on his hip. Yeah! :)

Our sweet Auntie B sent Athan a Bumbo, which will be a big help in our physical therapy. It will help us stabilize his torso so that he can focus on learning to control his head and keep it centered. Thanks Aunt Berniece!

And thanks to all for the encouraging comments (on blog and in person),cards, e-mails, and phone calls. As sleep deprivation has really taken a toll on my energy lately, and it helps so much to hear from you in the midst of a tough stretch of sleeplessness or fatigue. Blessings to you for having compassion with stamina! :)

you oughta see this!

I know every parent reading this will know what I mean. I just wish you all could be here to see this. Not any specific "this." I wish you could be here to delight with me in the 1000 things I see in my kiddos and my husband every day (and that I could never capture on a blog).

Athan smiles with his whole body. His forehead wrinkles, his ears go up, his eyes squint, his arms and legs and body wriggle with delight, and his giant toothless grin melts my heart a hundred times a day.

Morgan is such a fun kiddo. Yes, even when she's oiling up with A & D. She has been telling us stories. "Once upon a time, Morgan was a little girl, and went with her Dad." She is also really making strides with the potty thing (have I mentioned that she is pretty much doing this herself - I was going to wait until later in the fall).

My husband is an amazing father. Athan already knows his voice and turns to find him when he hears it. Morgan adores her Dad. He teaches me about parenting every day. I couldn't do this without him.

I'm just in such awe of the people God lets me live with and be with every day, and I wanted some company in my celebration tonight. I hope for all of you to have occasion to celebrate your own gifts soon, and that others will join you in your delight and gratitude.

VIPS

We had our initial evaluation with VIPS yesterday. Amanda was wonderful, and she showed us lots of ways to help Athan learn to use his eyes. It is, of course, impossible to tell just how well Athan will be able to see, but we know that he CAN see. He is tracking faces and objects, but he is somewhat inconsistent. The exercises Amanda will do with him and teach us to do will certainly be good for him, regardless of how good his vision turns out to be.

We also got an e-mail from Lauri, the PT who did the evaluation last week. Her test results confirm delay, but it is consistent delay (across all areas he is behind the same amount). We have been doing some of the exercises she showed us to help him with his head control, and we are excited about learning more once therapy actually starts.

His reflux is also much better since we stopped the Captopril. He is much more relaxed when he eats, and he is resting better between meals. So glad we're off that med! :)

Oh! Thanks for all the great tips. Aunt Berniece & Abby suggested baking soda, which got the greasy gunk out of Morgan's hair, and Dawn worked best on her skin. :)

any suggestions? :)

Well, Morgan had a great few nights where she was staying in bed and resting well through the night. And then...

Last night our friends Alan and Sarah were here watching a baseball game with us. I thought I heard some rustling upstairs, but I wasn't sure if it was Morgan or our neighbors (hard to tell in apartments, ya know?). I talked for a little bit longer, thinking Morgan would come downstairs like she usually does if she's up. Then I headed upstairs.

It was Morgan. AND I had left the door to our room open, which I rarely do after she is asleep. She left her room, went into ours, stripped clothes and diaper off, climbed on top of the changing table, and proceeded to cover herself in A&D ointment (after she tossed all the push-pins from the cork board onto the floor, which I almost stepped on before I realized the extent of the damage). I don't know if you've used A&D, but it's super greasy diaper rash ointment. She looked like she was oiling up for a body building competition. It was all over every inch of skin she could reach, and in her hair. Then she could not figure out how to get down quickly enough, so as soon as I topped the stairs, she asked "Did Morgan go tee-tee on Baby Afan's changing table?"

What can you do except smile and clean up? Especially since it was my fault for not keeping the door closed or getting upstairs quickly enough. So I put her in the tub (at 10 o'clock), and we washed and washed and washed. Baby soap. Regular soap. Dish soap. Twice each. She was still oily when I got her out (after 3 baths).

:-)

So this morning, she's better. She's absorbed all the oily gunk into her skin. The issue is hair. I washed her hair 3 times, and it is still FULL of grease this morning. Any helpful tips (besides "lather, rinse, repeat, repeat, repeat, repeat..")?

an odd feeling

For Athan's sake, I'm glad we don't see any doctors again for a while. He needs a break.

For Mama's sake... It's odd to have seen an MD so frequently, and now we're on our own for weeks. This will be our longest stretch without seeing a doc so far. It's exhausting, but at least reassuring to know that "experts" are seeing Athan so frequently. For the next few weeks, it's all on Ryan and me, and today that makes me a bit nervous. I suddenly want to call and schedule and appointment with Dr. Coburn in 2 weeks, just to make me feel better. I won't, but it's tempting.

Athan was pretty sore after his immunizations, and he had a slight fever last night. He seems better today. Some lingering soreness, but the fever is gone. I think I hear him "requesting" Mama right now. :)

Dr. Coburn today

We saw our pediatrician today. It was a full day again: We started immunizations today, which meant no less than 4 shots for our boy. He also has an umbilical granuloma - a litte red bump of extra tissue in his belly button - that required silver nitrate application (which we will probably have to repeat in 6 weeks, and he may have to tie it off as well).

I also told Dr. Coburn that Athan had started refluxing and coughing lately, which we learned from the PT is common in babies with low muscle tone like Athan. However, it also coincided with the addition of the most recent heart med, Captopril. Dr. Coburn says that it is almost certainly the medicine. So we are stopping the med, and we'll be in touch with cardiology to find out if we will have a replacement med or not.

Seeing Dr. Coburn is so reassuring. Above all, he listens. He is attentive to his patients, and he keeps up with Athan via much correspondence from UK. But he also listens to Ryan and to me. I appreciate so much his respect for our voice as parents. So encouraging, and so much more likely to do what is best for Athan because he finds out all the variables before deciding what to do.

And Athan, by the way, is amazing. For a week he has had trouble sleeping because of reflux and coughing. Yesterday he had an EEG and blood drawn for labs. Less than 2 hours ago, he had 4 shots and his belly button treated with silver nitrate. And right now he is laying in the floor kicking and grinning and cooing like none of it happened. I am in awe of our little guy already. Such resilience.

Now we finally get a break for a while. We have more appointments at UK in 4 weeks, and Dr. Coburn again in 6 weeks. It'll be nice to have a break from UK days for a while. yeah! :)