Athan is more and more alert, and spends his time awake begging us to take us home. I'd love to find some way to help him take the next couple days better than that! He gets a burger when he wakes up, so that might help.
Thursday, May 10, 2012
Out of ICU! :)
We moved upstairs to the telemetry floor in a regular room. It's quieter here, and both my boys are resting now.
Athan is more and more alert, and spends his time awake begging us to take us home. I'd love to find some way to help him take the next couple days better than that! He gets a burger when he wakes up, so that might help.
Athan is more and more alert, and spends his time awake begging us to take us home. I'd love to find some way to help him take the next couple days better than that! He gets a burger when he wakes up, so that might help.
"normal"
So Athan just woke up. The first words out of his mouth were "Dad! Mom! You are back to normal now! You guys aren't huge any more!" (with big smiles). He's since told us many times that he's glad we're all back to normal size. Even Grammy.
Eating some pancakes now. Yay!
Eating some pancakes now. Yay!
Good news bad news
Good: chest drain tube, and 2 of 4 IVs are out.
Bad: they gave him ketamine before the removals, and his reaction hasn't been good. His body seems fine and his pain is ok, but he is really disoriented and afraid. He's asking where we are, etc. Should wear off soon...
Bad: they gave him ketamine before the removals, and his reaction hasn't been good. His body seems fine and his pain is ok, but he is really disoriented and afraid. He's asking where we are, etc. Should wear off soon...
Next steps
The monitors off his forehead and cath out are good news but that means a little pain right now. 
Smile and a tear
A Winnie the pooh movie put a big smile on athans face, followed by a big set of tears and 'I want to go home'
He's pretty alert this morning and eating a little jello which seems to be settling well with him. The nurses just swapped out for the day shift and our new nurse is about to look the boy over.
He's pretty alert this morning and eating a little jello which seems to be settling well with him. The nurses just swapped out for the day shift and our new nurse is about to look the boy over.
6am Thursday
Athan has been asleep for the most part since 1am. He's opening his eyes now.
That good rest should help a lot with some of the transitions we anticipate today. More news after shift change -
That good rest should help a lot with some of the transitions we anticipate today. More news after shift change -
Cleaned up, new bedding
As amber mentioned earlier, the 'help me, help me' cries are pretty rough. He had a few of those for me as the nurse changed his bandage, cleaned him up, and changed his bedding. Now he's back asleep off and on. 
Wednesday, May 9, 2012
10pm Wednesday
Athan zonked out during the movie. The nurse gave him some Benadryl for some itchiness he was feeling and now he's sleeping pretty well.
Next time he wakes up they'll need to change the dressing over his incision, so we'll keep you posted.
Next time he wakes up they'll need to change the dressing over his incision, so we'll keep you posted.
Movie #1
As you can see, boy is alert now. He's been asking to eat and drink so we're easing into some jello.
Also, to distract from the discomfort, staci our nurse has queued up toy story 3.
Also, to distract from the discomfort, staci our nurse has queued up toy story 3.
Shift change Wednesday PM
Not a lot to report as the nurses swap out. Martin has been great today and Pat will be athans nurse again tonight.
Athan continues to rest and hasn't wiggled much lately.
Athan continues to rest and hasn't wiggled much lately.
Woke up once
When he is awake, he asks me to please take all the stuff off and take him home. I do ok until he just says "Mama, help me" over and over. It's a helpless feeling, watching my frightened kiddo hurt. But we sip clear liquids and sing songs and take deep breaths together until he can rest again.
His blood pressure is hovering a bit low right now, due to all the meds on board. But nothing too alarming. He is resting well again now.
His blood pressure is hovering a bit low right now, due to all the meds on board. But nothing too alarming. He is resting well again now.
3 more wires gone
We just got to pull the pacing wires out. 3 down, 57 or so to go (maybe fewer but Mom thinks it seems like that many).
They are trying to go up a bit on pain meds and down/off the sedative so he can wake up with controlled pain.
They are trying to go up a bit on pain meds and down/off the sedative so he can wake up with controlled pain.
Resting still
Athan is still sleeping away, and everything is progressing as it should. Looks like his drainage tube might come out late tonight or early tomorrow.
Much better!!
We got back ahead of his pain, and he is resting now. Mama and Athan both took good naps while Nana Lena sat with us.
Little better
Morphine for pain and Adavan to sedate and he is calmer. Still grimacing and snubbing but more relaxed. 
8.30 Wed
Just gave the standard post op dose if antibiotic. His sedative is reduced and he stirs awake more often now. He is thirsty and wants "all these doctor things off of me so we can go home." :)
But he can still rest well between the brief eye-openings, and vitals look steadily good.
But he can still rest well between the brief eye-openings, and vitals look steadily good.
615 wed morning
Good sleep continues, despite the interruption of a routine chest x-ray.
Still watching blood volume levels - probably something the docs will discuss on rounds this a.m.
Sleep and labs
430am Wednesday:
Athan has been sleeping well and Pat has drawn all of his 4am labs.
Everything looks pretty good, with the exception of his blood volume. It's lower than they'd like so they're giving some albumin to try and raise that level.
Restless
I got a pair of open eyes a second ago and a "hey dad."
This also means he's beginning to squirm and want rid of the various tubes and IV's he's discovering so we've got our work cut out for us keeping him still for a while.
And his blood/gas levels came back appropriate.
In and out
1:15 Athan has been waking for a minute or two then going back to sleep. The first words I could understand were 'get this off my head' and I imagine he's not done with that sentiment.
One of the OR nurses who works with dr Tam came by to say how well Athan did and how much fun he was for them as a team while they began anesthesia.
One of the OR nurses who works with dr Tam came by to say how well Athan did and how much fun he was for them as a team while they began anesthesia.
1st waking signs
1230 Athan began to open his eyes and then fight the breathing tube. They quickly extubated him and we kept him calm during the process. He responded to us and coughed, etc on command.
His oxygen levels are great, and now he's back asleep. Hopefully he will rest and continue to take some good deep breaths for us.
His oxygen levels are great, and now he's back asleep. Hopefully he will rest and continue to take some good deep breaths for us.
Tuesday, May 8, 2012
Night 1
Settling in well here in icu. Pat, our nurse for the eve has been great. And tonight's icu doctor is happy with athans vitals and transition out of surgery.
They will extubate him when he begins to wake up - probably in the morning.
For now we're trying to keep his body temp up and keep blood pressure in the optimum range.
They will extubate him when he begins to wake up - probably in the morning.
For now we're trying to keep his body temp up and keep blood pressure in the optimum range.
To icu
We just got a glimpse of Athan. His blood pressure is higher than they'd like following surgery, so they won't be waking him up just yet. They'll sedate him further and wait for the pressure to regulate.
Dr Tam's report
We just met with Dr. Tam. He was pleased with the valve repair and said Athan did very well. He put about 10 stitches in the valve.
We should get to see Athan for a moment as he's on his way to icu.
Thank you for all your prayers and notes and support. We are breathing with a bit more ease and preparing for the recovery process.
We should get to see Athan for a moment as he's on his way to icu.
Thank you for all your prayers and notes and support. We are breathing with a bit more ease and preparing for the recovery process.
Interpretation
Explaining to Morgan whats going on with Athan right now, trying to describe anesthesia by 'deep sleep,' she asked "is it enchanted?"
Checked in at 1
Still think we will start about 3. No food or drink now, which isn't bothering Athan at all it seems. Played a little baseball on the Wii. Now playing with toys with Papa Sid.
Details
With the new delay it looks like this:
Play in various fun places here at the hospital until 1. Clear liquids only (though Popsicles are almost food and he seems happy so far) until then.
Stop clears at 1 and check in back at pre op.
Surgery at least at 3p and maybe after. That means 2ish hours of prep, then 4 hour surgery, then 2ish of recovery before we see him again. That will be midnight or so.
Right now Athan the Brave is playing with Morgan in a football playroom (pics soon).
Play in various fun places here at the hospital until 1. Clear liquids only (though Popsicles are almost food and he seems happy so far) until then.
Stop clears at 1 and check in back at pre op.
Surgery at least at 3p and maybe after. That means 2ish hours of prep, then 4 hour surgery, then 2ish of recovery before we see him again. That will be midnight or so.
Right now Athan the Brave is playing with Morgan in a football playroom (pics soon).
Delay till 3p
The surgeon is just beginning his first surgery so we won't be starting until 3 at least. Strictly clear liquid diet until then so pray for kiddo :)
Monday, May 7, 2012
Pre op over
Athan was a real champ. He charmed the nurses and docs from beginning to end of the appointment. With the exception of the blood draw, he was all smiles and giggles and "yes please" and "cool."
He's got the green light for surgery tomorrow. We thought it would be at 8 but he is the second surgery instead. We arrive at 9.30 and will start some time after 10.
Tonight we will have dinner with the grandparents, followed by a crazy-good scrub in the bath. Stress dose of meds and hopefully lots of good rest.
He's got the green light for surgery tomorrow. We thought it would be at 8 but he is the second surgery instead. We arrive at 9.30 and will start some time after 10.
Tonight we will have dinner with the grandparents, followed by a crazy-good scrub in the bath. Stress dose of meds and hopefully lots of good rest.
Tuesday, May 1, 2012
short delay this time
Sorry I'm slow on posting this! Due to scheduling issues for the Cook's Cardio folks, Athan's surgery is now postponed until the first of next week. We'll go in for pre-op on Monday May 7th, and surgery is now Tuesday May 8. Only a few days delay this time, and hopefully the last one.
Friday, April 13, 2012
So it went down like this
We knew Athan had a bit of a cough. We were talking with the RN at the cardiology office, and she said without seeing you, we just can't say for sure. So we took Athan on to Cook's for pre-op, knowing we might not be having surgery.
Athan did a great job during the appointment. The only things that really upset him were the things I didn't prepare him for (because I didn't know they were coming). We were really SO proud of him, and next time we can even prepare better now that we know what's coming.
So the chief concern and reason for postponing the surgery was that Athan has some congestion in his lungs, and maybe some wheezing along with it. He doesn't seem to even feel bad (no behavior changes, no loss of appetite, etc), and he does not have a fever. However, during such a long surgery, he would have to be on a ventilator for a long time. Post-op, one of the important tasks of recovery is to be able to clear the lungs well. Going into surgery with any respiratory challenges could prolong recovery, and increase the risk of infection or other complication. The last thing anyone needs after open-heart surgery is increased risk!
So, we postponed. It is, obviously, the best plan for Athan. The logistics of rearranging our schedules and such are a pain, but well worth it to make sure Athan is as well as possible before the procedure.
For all who have brought gifts and notes and care packages for Athan, we thank you. I've set it all aside in a special place, and we'll pull them all out for him again in a few weeks. Our whole family remains very thankful for all the ways you've cared for us.
Athan did a great job during the appointment. The only things that really upset him were the things I didn't prepare him for (because I didn't know they were coming). We were really SO proud of him, and next time we can even prepare better now that we know what's coming.
So the chief concern and reason for postponing the surgery was that Athan has some congestion in his lungs, and maybe some wheezing along with it. He doesn't seem to even feel bad (no behavior changes, no loss of appetite, etc), and he does not have a fever. However, during such a long surgery, he would have to be on a ventilator for a long time. Post-op, one of the important tasks of recovery is to be able to clear the lungs well. Going into surgery with any respiratory challenges could prolong recovery, and increase the risk of infection or other complication. The last thing anyone needs after open-heart surgery is increased risk!
So, we postponed. It is, obviously, the best plan for Athan. The logistics of rearranging our schedules and such are a pain, but well worth it to make sure Athan is as well as possible before the procedure.
For all who have brought gifts and notes and care packages for Athan, we thank you. I've set it all aside in a special place, and we'll pull them all out for him again in a few weeks. Our whole family remains very thankful for all the ways you've cared for us.
Wednesday, April 11, 2012
Reschedule
Well Athan has a cough and some wheezing. Nothing too severe, but reason enough to wait until he clears up to do surgery. So no surgery tomorrow. Looks like late April or early May. Thanks for praying and we'll need it again in a few weeks!!
Tuesday, April 10, 2012
Monday, April 9, 2012
Surgery Schedule
Athan's heart surgery will begin Thursday morning (4/12) @ 8am.
We will arrive in Ft. Worth Wednesday morning for pre-op, etc.
Saturday, March 17, 2012
a happy moment
Ok, I know this could be a fluke, so I won't get too excited. Still, this made me smile:
The kids were watching a short video and having a snack while I cleaned the kitchen. Athan got up and brought his trash (granola bar wrapper) into the kitchen and threw it away. Without a word to me, he got a napkin and wiped his hands, and then got out a cup, filled it with water, took a drink, put the cup back on the counter, and returned to the movie.
It seems simple, I know. But just celebrate with me, for a moment, what he did NOT do. He did not leave his trash in the living room floor. He did not wipe his sticky hands on the recliner or on his shirt. He did not yell for me to bring him a napkin or a drink. He did not leave his cup half full of water in the middle of the floor, nor did he throw it in frustration.
Morgan craves independence so much we have to remind her that she's still 7, not 22. Athan, on the other hand, has been more resistant to our encouragement toward more independence. For a moment today, that was different.
A happy moment. :)
The kids were watching a short video and having a snack while I cleaned the kitchen. Athan got up and brought his trash (granola bar wrapper) into the kitchen and threw it away. Without a word to me, he got a napkin and wiped his hands, and then got out a cup, filled it with water, took a drink, put the cup back on the counter, and returned to the movie.
It seems simple, I know. But just celebrate with me, for a moment, what he did NOT do. He did not leave his trash in the living room floor. He did not wipe his sticky hands on the recliner or on his shirt. He did not yell for me to bring him a napkin or a drink. He did not leave his cup half full of water in the middle of the floor, nor did he throw it in frustration.
Morgan craves independence so much we have to remind her that she's still 7, not 22. Athan, on the other hand, has been more resistant to our encouragement toward more independence. For a moment today, that was different.
A happy moment. :)
Thursday, March 15, 2012
cardio surgery consult
So I'm trying again to keep up the blog. :)
We just had our consultation with Dr. Tam, the heart surgeon at Cooks Children's. He described the procedure to us (no surprises), and we set the dates.
Pro-op: Wed, April 11.
Surgery: Thurs, April 12.
We just had our consultation with Dr. Tam, the heart surgeon at Cooks Children's. He described the procedure to us (no surprises), and we set the dates.
Pro-op: Wed, April 11.
Surgery: Thurs, April 12.
Monday, April 25, 2011
eye surgery postponed
Athan's fine. But Cardio says we'd better do the surgery in a hospital so he can be on a heart monitor during the procedure, and our current doc is only set up to do surgeries at a surgery center that doesn't have heart monitoring capabilities. So he's referring us to a pediatric eye doc in Ft. Worth who does surgeries in a hospital.
I'm glad we're being cautious. No complaints about taking the safest route. I'm a little frustrated that it took so many appointments before we figured out that a referral was needed. Still, everyone was very helpful at both offices in town today, and got my surgical pre-payments refunded quickly and fully.
So we'll meet the new doc soon and start the process over.
I'm glad we're being cautious. No complaints about taking the safest route. I'm a little frustrated that it took so many appointments before we figured out that a referral was needed. Still, everyone was very helpful at both offices in town today, and got my surgical pre-payments refunded quickly and fully.
So we'll meet the new doc soon and start the process over.
Tuesday, April 19, 2011
pre-op for eye surgery
We went in for our pre-op appointment for Athan's up-coming eye surgery today. It should be a short, simple out-patient surgery next Wednesday, and they'll kinda loosen the muscles on the inside of both eyes to keep them from turning in.
Now the week of jumping through medi-communication loops begins. We actually already had an appointment with Cardio for this Thursday, during which we have to get them to send all of Athan's info (through the Cardio lens) to the docs at the surgery center for review. Same with Endo, plus stress dose instructions for his IV Steroids (because unlike the saintly Dr. Irene, we haven't gotten a letter yet from our new doc with instructions for surgeries and emergencies - bah!). Then the anesthesiologists convene over his compiled medical history and decide if we're ok to proceed as planned. If they decide Athan would be better served to do the surgery at the hospital instead of the surgery center, we'll have to reschedule.
Barring any red flags, one more surgery for kiddo a week from tomorrow.
Now the week of jumping through medi-communication loops begins. We actually already had an appointment with Cardio for this Thursday, during which we have to get them to send all of Athan's info (through the Cardio lens) to the docs at the surgery center for review. Same with Endo, plus stress dose instructions for his IV Steroids (because unlike the saintly Dr. Irene, we haven't gotten a letter yet from our new doc with instructions for surgeries and emergencies - bah!). Then the anesthesiologists convene over his compiled medical history and decide if we're ok to proceed as planned. If they decide Athan would be better served to do the surgery at the hospital instead of the surgery center, we'll have to reschedule.
Barring any red flags, one more surgery for kiddo a week from tomorrow.
Friday, April 8, 2011
some other stuff we do
Blue pants because it's too hot already (yes, we will get him a haircut soon):
Ryan lays sod in the backyard:
Morgan dresses up for 50s Day at school:
And Western Day:
And we hang out with Grammy and Baby Mae:
Ryan lays sod in the backyard:
Morgan dresses up for 50s Day at school:
And Western Day:
And we hang out with Grammy and Baby Mae:
Vacation
Planes (Dallas to St. Louis to Chicago to D.C, then D.C to Denver to OKC to Dallas):
Trains (into Baltimore and back with the Crisps to visit the science Center):
And automobiles (lots of driving, too. Trip to train station pictured here):
It was really good to see our friends the Crisps! What a great way to vacation! The Wilmore Diaspora better watch out - the Strebecks like planning vacations to intrude on old friends. :) I think the kids had fun:
Trains (into Baltimore and back with the Crisps to visit the science Center):
And automobiles (lots of driving, too. Trip to train station pictured here):
It was really good to see our friends the Crisps! What a great way to vacation! The Wilmore Diaspora better watch out - the Strebecks like planning vacations to intrude on old friends. :) I think the kids had fun:
Monday, March 7, 2011
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.)
Tuesday, January 18, 2011
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!
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!
Friday, January 7, 2011
Thursday, January 6, 2011
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.
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.
Wednesday, December 29, 2010
Thursday, December 16, 2010
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:
Thursday, December 9, 2010
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.
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.
Friday, December 3, 2010
Monday, November 15, 2010
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! :)
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!
Way to go Athan Bear!!
Thursday, November 4, 2010
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. :)
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. :)
Wednesday, November 3, 2010
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? :)
Wednesday, October 27, 2010
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! :)
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! :)
Wednesday, October 20, 2010
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.
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.
Monday, October 18, 2010
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 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.
Saturday, October 9, 2010
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...
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...
Thursday, October 7, 2010
Ahtan can climb stairs!
So so proud of him! These are the 3 little steps he does each day at school...
Tuesday, October 5, 2010
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.
Sunday, October 3, 2010
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.
Friday, October 1, 2010
as promised... :)
Aaaaaaaaaaaaaand we're back. ;)
Of course today, the day I thought would be wide open space for reflection and organized blog updates, has gone a little differently than planned. Of course. So no organized summaries yet, or even loads of pictures with cute captions and cuter stories. Yet.
For now, 2 things:
1. We have been in "project mode" for the past few months (busy with the projects that come with new place and new season), and I'm really ready to leave "project mode." Thus the return to blogging. It feels regular and rhythmic. I miss those kinds of things.
2. Just random cuteness:
Of course today, the day I thought would be wide open space for reflection and organized blog updates, has gone a little differently than planned. Of course. So no organized summaries yet, or even loads of pictures with cute captions and cuter stories. Yet.
For now, 2 things:
1. We have been in "project mode" for the past few months (busy with the projects that come with new place and new season), and I'm really ready to leave "project mode." Thus the return to blogging. It feels regular and rhythmic. I miss those kinds of things.
2. Just random cuteness:
Wednesday, September 29, 2010
re-launch
I, Amberly R. Strebeck, to hereby promise to blog again. I will relaunch Athan's Journey on October 1, 2010, and I will faithfully update my few remaining and forgiving readers on the happenings of Strebeckian life in Abilene. If our patient followers will wait only a few more hours, posting will resume, I swear.
:)
Tuesday, August 24, 2010
1st day of school
Ok, it's official. Yesterday was Morgan's first day of Kindergarten, and today Athan started preschool. Morgan's is a full day thing (8-3), and Athan goes for 2 hours each morning. More details to follow, I'm sure. But for now, that's all I can manage. It's a bittersweet day for me. I'm gonna go distract myself for 45 more minutes, then pick up Ryan and go with him to get Athan!
Monday, August 16, 2010
no puking, still fever, still home
He hasn't thrown up any more since about 9 last night. He still has a mild fever, but he's eating a bit and has kept his meds down. If the banana he's eating sits well with him, we'll give some Tylenol in a bit for the aches and the fever.
Doing better but not out of the woods yet. Thanks for praying! We slept in shifts around here, so today might be a long one for all of us... :)
Doing better but not out of the woods yet. Thanks for praying! We slept in shifts around here, so today might be a long one for all of us... :)
Sunday, August 15, 2010
still at home, still sick
We thought we were in the clear. He slept alot, sugars stayed high (88 was lowest), and then acted like he felt better and ate a little finally.
Then he threw up all over Grammy and the couch (again). So he's back in the tub, we're running the 25th load of laundry, and Grammy took her 3rd shower of the day.
On the bright side, he still acts like he feels better. He's talking and playing a little...
Ok - mid-post correction: Just checked his sugar. 70. Not dangerous yet, but it needs to go up.
Then he threw up all over Grammy and the couch (again). So he's back in the tub, we're running the 25th load of laundry, and Grammy took her 3rd shower of the day.
On the bright side, he still acts like he feels better. He's talking and playing a little...
Ok - mid-post correction: Just checked his sugar. 70. Not dangerous yet, but it needs to go up.
1st time sick in Abilene
Athan's been awake most of last night and today. He's been throwing up since about 9a. So far his sugars are fine (nothing below 90), but if he can't keep something down soon, including and especially his Cortef, we'll have to give his emergency shot. If that doesn't work, we'll have to go to the hospital.
We could use your prayers once again.
We could use your prayers once again.
Tuesday, August 10, 2010
yes, better
And thank you all. I appreciate the encouragement. Alot.
Today was better. I'm still sifting through all the stuff, but I took a big break from cerebral work today and cleaned up in our backyard for 7 hours today. I'm physically worn out, but less stressed.
And I'm a bit embarrassed for whining. I should never blog when I'm sleepy - it comes out pitiful.
So.... tomorrow I register Morgan for Kindergarten. Wow!
Today was better. I'm still sifting through all the stuff, but I took a big break from cerebral work today and cleaned up in our backyard for 7 hours today. I'm physically worn out, but less stressed.
And I'm a bit embarrassed for whining. I should never blog when I'm sleepy - it comes out pitiful.
So.... tomorrow I register Morgan for Kindergarten. Wow!
Monday, August 9, 2010
overwhelmed
Today I am overwhelmed. (It looks like a small, benign sentence).
I've fallen off posting for a while, and I'm sorry 'bout that. I'll soon return to the regularly scheduled cute-kid stories and pictures and videos.
But today, I have to post a little of Athan's Journey. Or maybe Athan's Mama's Journey. ;)
Endo. Cardio. Optho. Ortho. Genetics. PT. OT. School. Pediatrician.... It's alot to coordinate. Everybody has to learn the Story of Athan. So I've been combing records, sorting, filing, copying, organizing, reading...
And crying. It's hard reading - Athan's medical history. I kept up, during the last 3 years, whatever information we needed to know to care for Athan THAT day. Until the last couple of days. I'm trying to learn the comprehensive whole of his story, so I can tell it (and document it) correctly for the new folks who'll be providing care. There is no short version. There is no easy telling. I have alot to learn...
So coordinating the appointments could be a full time job - schedules and records and paperwork and insurance and such. I feel like I should go to med school to understand Athan's story, but even if I just try to decipher the pile of papers from Central Records at UK, I'll spend some hours there. Meanwhile, we just moved in. Nothing feels like it's where it should be yet. And my kids still get hungry and lonely and bored and tired. The damn dog keeps pooping and not cleaning up after himself....
I told Ryan today: "It really is all stuff I WANT to do (maybe except cleaning up dog poop), but today I'm overwhelmed by how much of it needs to be done yesterday."
So that's Athan's journey today - Mom's overwhelmed...
I've fallen off posting for a while, and I'm sorry 'bout that. I'll soon return to the regularly scheduled cute-kid stories and pictures and videos.
But today, I have to post a little of Athan's Journey. Or maybe Athan's Mama's Journey. ;)
Endo. Cardio. Optho. Ortho. Genetics. PT. OT. School. Pediatrician.... It's alot to coordinate. Everybody has to learn the Story of Athan. So I've been combing records, sorting, filing, copying, organizing, reading...
And crying. It's hard reading - Athan's medical history. I kept up, during the last 3 years, whatever information we needed to know to care for Athan THAT day. Until the last couple of days. I'm trying to learn the comprehensive whole of his story, so I can tell it (and document it) correctly for the new folks who'll be providing care. There is no short version. There is no easy telling. I have alot to learn...
So coordinating the appointments could be a full time job - schedules and records and paperwork and insurance and such. I feel like I should go to med school to understand Athan's story, but even if I just try to decipher the pile of papers from Central Records at UK, I'll spend some hours there. Meanwhile, we just moved in. Nothing feels like it's where it should be yet. And my kids still get hungry and lonely and bored and tired. The damn dog keeps pooping and not cleaning up after himself....
I told Ryan today: "It really is all stuff I WANT to do (maybe except cleaning up dog poop), but today I'm overwhelmed by how much of it needs to be done yesterday."
So that's Athan's journey today - Mom's overwhelmed...
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