a simple new skill

A few minutes ago, my son rolled from his back to his tummy and "skooched" his way forward 6 or 8 inches in order to chew on several of his sister's books.

I teared up a little.

long night, and welcome relief

We had another sleepless night list night. Athan slept about 45 minutes between 10 last night and 4 this morning. Poor kiddo. It just seemed like he could not relax enough to sleep. Dr. Irene said it wasn't endo, but I'm still convinced it was his stress dose of Cortef keeping him up. We're back to regular maintenance dose today, and he has had a MUCH better day.

Also, welcome with us our new friend Charis. She will be here 3 mornings a week to help with the kids so Ryan can work on school and I can sleep! :) If I'm not asleep, I can get errands or just some "me time" during those hours. Charis is a wonderful woman who is great with the kids and very patient with me, too! :) We are so very grateful to have her in our lives.

cardio

We did hear from the cardiologist. Basically, they just confirmed what we already knew: Athan needs to have surgery, and it will be sometime in the next couple of months. The new surgeon just moved here from California, and he is waiting on his Kentucky licensure paperwork to go through. As soon as he is officially able to start work, Athan will be one of the first surgeries scheduled. They will be calling us for a pre-op visit as soon as they can (which could be days, weeks, or up to a month). I'll write again when we hear from them, so you'll know when we know.

Thanks for staying near us with prayers, comments, e-mails, and calls. We remain awed and grateful to all of you.

Morgan's sleeping, Athan's not

Morgan is, for the first time since Athan was born, consistently sleeping through the night in her own bed and taking good naps. Yeah for Morgan! :)

Athan, however, was awake yesterday from 9 a.m. to 8 p.m., with the exception of about 20 minutes. Crazy, huh?! He was a little extra fussy, a lot extra clingy, but as long as I was holding him, he was happy. It is tough to guess a cause with this kiddo - heart stuff? endo? bronchiolitis? meds? or normal baby stuff - constipation or tummy ache? aaahh! I don't know, exactly, but after eliminating one thing then the other, I think it has to do with his Cortef dose. We'll be back on his normal med schedule tomorrow, so hopefully that will mean more sleep for us all - especially baby boy!

feeling better

Athan is still raspy and coughing, but it is also evident that he just feels much better. He is sleeping and eating well, and he is playing more when he is awake. We will still be pretty cautious with him through the weekend, but I think he is certainly heading in a good direction.

Ryan and I have both taken some good naps the past couple of days, so I think we've recovered from the short night before his cath.

saw Dr. Coburn this a.m.

After speaking to the cardiologists yesterday, we decided it was best just to see Athan's pediatrician. Dr. Coburn worked us in this morning. Athan has bronchiolitis (bronchitis for babies, kinda). He gave us meds (antibiotic and some stuff to break up the congestion in his chest), so we'll get those in him next time he eats.

The good news is that this is an upper respiratory infection. If the infection was in his lower respiratory system, he would probably have to be hospitalized because of what that kind of infection can do with his heart condition. Hopefully the meds will prevent it from spreading.

I also have a call into Dr. Irene to see how we should adjust his endo medications in light of his recent cath and his current illness. We should have all the dosages worked out and in him in a couple hours.

Athan's sick

We've talked to Dr. Vranicar (surgeon who did the procedure yesterday), Katie (Dr. K's nurse), and his pediatrician, and everyone seems to agree that it is NOT a side-effect of the cath. He probably just picked up a bug or something at the hospital. He has quite a rattle in his breathing and has been coughing off and all all day. He had a slight fever, but not for long. He is acting like his usual happy self most of the time, and he's sleeping a little more than usual. We'll keep watching and keep you updated.

pics from the day

before:just waking up in recovery:
first clear liquids back in the room:

Got to come home-

We recovered back on the pediatric floor for a few hours, and left the hospital around 4. We're home now, and everyone seems to be tired, but good. Athan is not quite himself, of course, but he has played some this afternoon and is eating well. Morgan had so much fun with her friends she didn't want to come home! :) Ryan and I are groggy, but functional. It'll take us a couple of days to get the sleep back, I think.

We were blessed with dinner for the next two nights - thank you friends. We should be able to have a slow going evening for now.

Once again, how can we possibly thank you for your prayers?

the network let me on this time

Athan's procedure went well. He is still asleep, and looks like he's enjoying the rest!

We just spoke to Dr. Vandicar, who did the catheter on our boy. He said that everything went smoothly, no complications. He checked the pressures in the pulmonary arteries, which has been the main area of concern. "Resistance" is higher than it should be with just and ASD/VSD, but not so high that treatment/surgery needs to be immediate - elevated, but not critical. Dr. K will look at the data, and the cardio team will discuss in in their next meeting (probably next Monday afternoon).

I'll try to post again when he wakes up, and we'll try to get pictures up later this afternoon.

amberly

Post by Proxy

Last night went pretty well with all the fasting and prep for the procedure. Both mom and baby didn't get much sleep, but otherwise no problems. Athan is in the procedure right now and will be for another hour or so. Amber and Ryan are in the waiting room, and Morgan is at Jason and Hannah's house, playing with Margot.

It will be about another hour before the procedure is over, and a little while longer before Amber and Ryan can get reliable internet access. In the meantime, we'll try to do these proxy posts to keep everyone updated. Thank you all for your prayers during this time.

--Uncle Josh

We're at the hospital

Admission went well. Started an IV (on his right side so that his head has to turn left). He'll stop nursing at 2am and switch to the pedialite. At 6am he'll be off liquids completely. The procedure is scheduled for 8 o'clock. The procedure takes about two hours. Recovery afterward will be between 4 and 5 hours. We don't have as much computer access as we've had in the past, so we'll post when we can.
Athan is a real trooper. He was pretty upset about the IV, but after a little rest, he's smiling and playing.

to the hospital

We're heading into Lex in about an hour or so. We'll eat, then be admitted to the pediatric floor at 8 p.m. After we get all settled in, Ryan will head back out here to put Morgan to bed. I'll stay with Athan tonight, and Ryan will be back first thing in the morning to go with us over to the heart building for his cath. I'm taking the computer, so I'll try to post again after we get settled in at the hospital tonight.

Oh - Athan had a great day of physical therapy today. He worked really hard on his back and a little with his arms. I wish I could have captured the way he was imitating Laurie chewing her gum! He even remembered the gum from last appointment, and he kept "chewing" and looking at her mouth, so she made a special trip to her car to get gum and keep him entertained. So funny! :) We'll see Laurie again on Wednesday for our planning meeting, and Friday for his therapy.

Morgan

Of course this blog was started to keep up with Athan's Journey, but many of you wonder about our Morgan as well. I try to but in blips about her here and there, but here's a whole post to give you a glimpse into her world right now:

She loves being outside, and winter weather doesn't allow for nearly enough. Still, whenever possible, we bundle her up and set her free:


The only setback to being outside is that there are not pottys. She doesn't think it is worth the trip back inside, lest we make her stay there, so she has come in with wet pants one more than one occasion. That is a true lover of the outdoors, I say.

When trapped inside, we do our best to find diversion. She enjoys art in may forms. Sculpting (making snakes and snowmen out of pink Play-Doh), painting (with the extra peanut butter and jelly that dripped out of her lunch onto the table), and coloring, of course. Here are some examples from her on-going Green period:
She gets to play with Margot on occasion, and she spent the day with the three Crisp boys during Athan's last appointment (Thanks again to Erin!). We always look forward to time she gets to spend with friends, and when she's here at home, these "friends" are a royal treat, accompanying us for most activities of late:
She is endlessly creative. For instance, these instruments here were transformed inside of an hour from drumsticks to medical instruments for giving Mom "check-ups" to spoons for serving imaginary soup back to "whisk-es."

All in all, she seems to be doing well. Her appetite is finally back. The magic words right now are "burrito" (meaning anything at all wrapped in a tortilla), and "salad" (yes, she suddenly loves salad). She is super sweet to Athan, and has taken up calling him "Blue Eyes" (which makes her Brown Eyes, me Green Eyes, and Dad Brown Eyes, of course). She is sleeping better - whew. After lots of travel followed by some sickness, it is good to have Morgan back in full swing!

PT

Athan, despite being a bit off schedule and pretty tired, still worked hard for Laurie during his PT appointments. You can see in the pic that she's working to get him to realize he can bear weight with his arms, and he is finally catching on (a little).

Yesterday she repeated the assessment that he took back in late August to measure his progress. According to this particular tool, Athan's developmental age is 5 months. Of course that is still a delay, but it is great progress from where he was before. We were glad to see that he has improved so much!

Next week (Wed.) we'll meet with our whole First Steps team to discuss his plan for the next few months.

Dr. Irene today

We went back to see Dr. Irene, Athan's endocrinologist, today. As always, she was her cheerful, helpful self! :) Aside from the usual check-up and blood work (yuk), Dr. Irene helped us iron out some of the logistics of taking care of his endo stuff during his cardio stuff ahead.

For example, his heart cath next Tuesday: We have to triple-dose his Cortef the day before, during, and after. Also, because he has to fast after midnight the day of the procedure (Tuesday), she decided it would be best for Athan to be admitted to the pediatric floor at the hospital Monday evening so we can monitor his blood sugar and give him IV dextrose if we need to while he is NPO (fasting). So we will be heading up to UK Monday evening (around 8) to check in, he will start fasting at midnight, his cath is scheduled for 8 a.m., the procedure takes about 2 hours, then after 4 or 5 hours recovery, we can go home.

Our next few months

Ryan and I were talking last night and looking at what lies ahead for the Strebeck family, especially in the next few months. I think it was our way of mentally digging in for another stretch. We pretty much stay in "survive the crisis" mode for a while. Athan really needs to stay healthy until heart surgery, which means lots of stay-at-home time for at least one of his parents. The other will be making sure Morgan doesn't have too much stay-at-home time. :) Then we have the heart cath, surgery, and recovery. We'll be revamping his First Steps plan (that's the program through which he gets physical therapy), maybe adding occupational therapy as well. He will see a urologist per recommendation of his geneticist, as well as having a vision and hearing test. We'll have to keep up his regular visits with his endocrinologist and pediatrician.

And school starts tomorrow.

We're happy to do it, and we want to do it well. I write to ask, again, for your prayers. This year has been a tough one, and the next may not be smooth sailing, exactly. Right now, I'm just asking the Lord for the energy to do what needs to be done, and to do it with deep love.

physical therapy

Athan did well in his therapy, I think. Laurie said she could tell he is getting much stronger. He is offering much more resistance with his arms, controlling his head better, and his torso is working harder when he tries to balance and move. It seemed like her biggest concern is his "round sitting." Basically, it's like a super-slouch. We'll be working hard on getting him to hold his back straighter.

I'll try to grab the camera and post some of the pics soon.

mom finally went down

Everyone has been sick except me. Until now. I have mastitis and a low grade flu. Ryan is running like a crazy man to take care of all 3 of us, and doing a stellar job. Hopefully I'll feel better when he starts classes on Tuesday.

Athan is having physical therapy downstairs right now, so I'll post later this evening to report how that goes.

Upcoming appointments: We see endocrinology next Wednesday (13th), and his heart cath is a week from Tuesday (19th).

links about his heart

Aunt/Nurse Berniece sent us an article with a great description of Athan's heart condition, including a "talking" diagram. If you're interested, go here for the article and here for the illustration.

Thanks Auntie B! :)

Heart Cath

Ok, good news and not-as-good news:

Good news - he's off of the oxygen, so maybe he'll get some better sleep! :-)

Not-as-good: His heart didn't do as well as Dr. K had hoped it would do on the oxygen, so Athan will have to have a heart cath before surgery. Katie will be calling us soon with an appointment for that, which will be an all-day (but not over-night) thing at the hospital.

The surgery will patch two holes in Athan's septum - one between the upper chambers (ASD) and one between the lower chambers (VSD). The steps we are taking now (such as the oxygen and the upcoming heart cath) will help tell the doctors what kind of post-op care Athan will need. After surgery like the one Athan will have, sometimes the lungs have a difficult time adjusting to the changes in blood pressure. The information they are gathering now will help them anticipate what specific helps he will need after surgery for his lungs to adjust to a more normal blood pressure.

As to timing, we are still not sure exactly when the surgery will be. We know more a sequence of events than a calendar date. The next step is the cath, which should be sometime in the next two or three weeks. Then the whole cardio team will discuss the results. If they decide the surgery needs to be very soon, we may have to travel to Cincinnati to have the surgery. If he can wait just a bit longer, the surgeon here in Lex will do it.

I always feel like I am leaving out something, so post a comment with any questions I haven't answered.

Thanks for hanging in there with us!

talked to Katie

Katie is the o-so-helpful nurse we usually speak with at the cardiologist's office. Ryan called early this morning to ask about an appointment, and she called back this afternoon with a time: 8:30 in the morning. Dr. K wants to do another ECHO while he is on oxygen, so that is what we will do in the morning. He has tolerated this test well in the past (it's not invasive or painful, really), so it should be an easy appointment for Athan. The results are immediate, so we should be able to report much more tomorrow sometime.

(note: Katie mentioned that the new pediatric cardiology surgeon is just getting started/oriented here, so unless Athan's case is emergent, the surgery may be more like March/April in stead of Feb/March like we were thinking before. We'll know more tomorrow)

HOME! :)

We made it. Everyone is well. I was a little more than giddy to be in my own house again. I love my bed! :)

Athan is doing well. He is sleeping alright, but not great. I'm interested to see how he adjusts to being back home. He was sleeping so well before we left for New Mexico, but he was not on the oxygen then, either. I think that blasted tube wakes him up and keeps him from going back to sleep comfortably. Ugh. We're going to call the cardio office Monday to schedule his appointment. I'll post when we know. Also, our PT is scheduled for Friday. We're excited to see Laurie again, and I'll write an update on that, too.

Morgan is also doing well. She was so glad to be at Mom and Dad's house. She played alone for two hours when we got home, and then spent a very fun evening playing with Margot while we ate dinner at their house. She missed her friends.

So did Ryan and I. Adam, Dru, and J.D. met us at Bellacino's for lunch, which was a very sweet surprise! Then we got to see most of the rest of the crew last night at dinner. We're very much looking forward to sing Dr. Alan, Sarah, and Baby Lucy when they get back.

did I say Friday?

I meant Saturday. The kids and I will fly out with Papa Sid first thing in the morning, provided Morgan is feeling well enough to travel. She has been sick all day today. Athan's fever I wrote about cleared up mid-week, and he is doing fine. Because of all the help I've had today from Nana Lena, Aunt Loy, and Grammy Tammy, I think Athan and I have kept from getting Morgan's bug. We should be back in Wilmore just after lunch tomorrow.