Well, I guess it's more accurate to say he imitated Amanda waving at him. Several times. It was soso sweet!
Morgan is recovering from a pretty severe case of cabin fever. We got to go play with kids today, and she is currently playing with Savannah (who keeps the kids for us every Tuesday afternoon - whew).
Tuesday, November 27, 2007
Friday, November 23, 2007
good times!
We sure missed seeing all our family for Thanksgiving, but what a blessing to have such good friends here in Kentucky!
On Thursday, our friend Sarah hosted us at their house for a beautiful dinner, featuring a gorgeous turkey and all the extras. SO good!
Today we got to go into Lex and have brisket (ah, Texas...) with the Sims family. I dropped my corn in the brisket sauce, and Morgan broke a snow globe. oops. In spite of the Strebeck girls' faux pas, it was a fun time for all.
We'll probably spend the rest of our break working on our various ongoing projects: Ryan is building a new part for Athan's crib, writing papers, and reading for school. I'm working on Christmas shopping, plus preparing to pack and clean before we leave for 6 weeks. The kids are working really hard on being kids, and so far so good...
On Thursday, our friend Sarah hosted us at their house for a beautiful dinner, featuring a gorgeous turkey and all the extras. SO good!
Today we got to go into Lex and have brisket (ah, Texas...) with the Sims family. I dropped my corn in the brisket sauce, and Morgan broke a snow globe. oops. In spite of the Strebeck girls' faux pas, it was a fun time for all.
We'll probably spend the rest of our break working on our various ongoing projects: Ryan is building a new part for Athan's crib, writing papers, and reading for school. I'm working on Christmas shopping, plus preparing to pack and clean before we leave for 6 weeks. The kids are working really hard on being kids, and so far so good...
Wednesday, November 21, 2007
back from the blues
It has been a while since our last update, I know. I wanted to start this blog with some blathering about semester's-end busyness and holiday prep. It would have been about half true. Mostly, I've been feeling a little heavy, but I couldn't articulate it well enough to try a blog. The weightiness of my grief and my gratitude seem, still, too much for words. In light of the depth of what I have been thinking and feeling, another post about PT progress (which remains really good) and VIPS visits (also good) refused to materialize when I would sit to write.
But I am emerging again out of that heavy place. So far, I feel like this is healthy - the way the sadness comes and goes like the tide. I do not wish to try to be sad when I'm not, nor try not to feel sad when I do. If I don't muster or deny, maybe I'm emotionally maturing. Maybe. Part of this effort to grow up comes with parenthood - Athan and Morgan need me to learn to model good things for them, including grieving and giving thanks. Often simultaneously. I hope I can do it.
As to the daily stuff: Athan continues to do really well with his physical therapy. We will be recruiting lots of our friends and family in Texas and New Mexico to help us do his "workouts" while we're there for Christmas. Morgan keeps bumping into a world that doesn't bend to her every wish, which keeps surprising her and making her mad. We're doing the best we can to help her navigate the hard work of being a toddler. I am doing what I can to get ready for our trip home for Christmas, and Ryan is diligently finishing his semester up - couple big projects to go.
Have a Happy Thanksgiving!
But I am emerging again out of that heavy place. So far, I feel like this is healthy - the way the sadness comes and goes like the tide. I do not wish to try to be sad when I'm not, nor try not to feel sad when I do. If I don't muster or deny, maybe I'm emotionally maturing. Maybe. Part of this effort to grow up comes with parenthood - Athan and Morgan need me to learn to model good things for them, including grieving and giving thanks. Often simultaneously. I hope I can do it.
As to the daily stuff: Athan continues to do really well with his physical therapy. We will be recruiting lots of our friends and family in Texas and New Mexico to help us do his "workouts" while we're there for Christmas. Morgan keeps bumping into a world that doesn't bend to her every wish, which keeps surprising her and making her mad. We're doing the best we can to help her navigate the hard work of being a toddler. I am doing what I can to get ready for our trip home for Christmas, and Ryan is diligently finishing his semester up - couple big projects to go.
Have a Happy Thanksgiving!
Tuesday, November 13, 2007
Wednesday, November 7, 2007
check this out!
We were playing in the floor last night, helping Athan work on rolling over. I helped him over onto his tummy, and he just popped his head up like he's been doing it for months! Way to go buddy! He held his head there for a minute or so, then rolled back over onto his back with no help. So exciting!
Monday, November 5, 2007
PT today
Laurie just left a while ago, and Athan did really well again today. He is really beginning to work hard at keeping his chin down when we do "baby sit-ups." He still has significant lag, but he is starting to work harder to overcome it.
I wish you all could meet Laurie. She is SO very good at her job. We are so thankful to have her in our home for any reason, and so glad she's working with our Athan.
I wish you all could meet Laurie. She is SO very good at her job. We are so thankful to have her in our home for any reason, and so glad she's working with our Athan.
attempted answers
We frequently are asked or hear about some recurring questions that we may not have addressed. I’ve been meaning to write this for some time, partly for you and partly for me. It always helps me think things through when I sit to write about it.
Athan’s medical troubles are rooted in his genetics. As far as we know right now, none of the things that I did or did not do during pregnancy could have caused this. My prenatal care was good. The biggest challenge for me was hyperemesis again, which just means I was sick around the clock for months. However, this could not have caused Athan’s problems. None of the genetic testing has uncovered the source of his sickness. It may be a fluke - a one-in-a-million random genetic mutation. It may be something inherited from Ryan or myself. We don’t really know, and we may never know for sure.
We do not regret having a home birth or using a midwife. I think both of my experiences of labor and delivery were better for me and baby to be at home, and choosing home birth was in no way responsible for Athan’s condition. We are attempting to walk forward while negotiating the tension between natural treatment and medicine (we are fortunate to have access to such wonderful care from both!), being as informed as possible about both as we make decisions.
We still do not know what any of this will mean in regards to Athan’s quality of life. We have many, many questions about what his life will be like. At first, we were only looking forward a few minutes at a time. Then hours. Then days and weeks. Now I feel like we know what the next few months hold. When we are able to get more of a picture of what the years ahead may hold, I will try to write about it.
We are also not sure whether we will choose to have more children or not. Further genetic testing may be able to tell us what chance we would have of any future children having the same troubles, which would inform our decision. We both are open to all of the possibilities. We may have 2 kids. Maybe more. Maybe more of our own, or maybe adopt. All are options we will explore over the next few years.
Thanks to all who are praying us through this time and will walk with us through whatever the future holds.
Athan’s medical troubles are rooted in his genetics. As far as we know right now, none of the things that I did or did not do during pregnancy could have caused this. My prenatal care was good. The biggest challenge for me was hyperemesis again, which just means I was sick around the clock for months. However, this could not have caused Athan’s problems. None of the genetic testing has uncovered the source of his sickness. It may be a fluke - a one-in-a-million random genetic mutation. It may be something inherited from Ryan or myself. We don’t really know, and we may never know for sure.
We do not regret having a home birth or using a midwife. I think both of my experiences of labor and delivery were better for me and baby to be at home, and choosing home birth was in no way responsible for Athan’s condition. We are attempting to walk forward while negotiating the tension between natural treatment and medicine (we are fortunate to have access to such wonderful care from both!), being as informed as possible about both as we make decisions.
We still do not know what any of this will mean in regards to Athan’s quality of life. We have many, many questions about what his life will be like. At first, we were only looking forward a few minutes at a time. Then hours. Then days and weeks. Now I feel like we know what the next few months hold. When we are able to get more of a picture of what the years ahead may hold, I will try to write about it.
We are also not sure whether we will choose to have more children or not. Further genetic testing may be able to tell us what chance we would have of any future children having the same troubles, which would inform our decision. We both are open to all of the possibilities. We may have 2 kids. Maybe more. Maybe more of our own, or maybe adopt. All are options we will explore over the next few years.
Thanks to all who are praying us through this time and will walk with us through whatever the future holds.
Saturday, November 3, 2007
schedule change
Athan has outgrown his eat-every-3-hour schedule. :) He is now officially moved to a 4-hour schedule. If you've every had an infant in your house, you know how different the world is for all of us now. :)
Friday, November 2, 2007
happy Halloween
Athan had the beginnings of a cough, so he stayed home this year. But Morgan... well, see for yourself:
The kitty-cat:
First taste of "pink" (as she called it):
With her friend Margot, the punk rocker:
The kitty-cat:
First taste of "pink" (as she called it):
With her friend Margot, the punk rocker:
Tuesday, October 30, 2007
WOO-HOO!
13 lbs, 6 oz! (now sing that and dance around a little)... That translates to 30 grams a day since we were last at UK (about a month). They wanted him between 20 and 30 grams per day, and he was only at about 17ish before this month. But not anymore! His rate of weight gain is finally on track. Yeah!! :-)
Can you tell I'm excited?
Once again, more numbers that show how you all are praying our boy to good health. Celebrate with us, friends and family!
(oh - we also saw Dr. Irene. All is well. No change in dosage unless labs come back too high or too low. She also taught us some how-to's as we prepare to travel home for Christmas, including how to give an IM emergency dose of his hydrocortisone if we needed to).
Can you tell I'm excited?
Once again, more numbers that show how you all are praying our boy to good health. Celebrate with us, friends and family!
(oh - we also saw Dr. Irene. All is well. No change in dosage unless labs come back too high or too low. She also taught us some how-to's as we prepare to travel home for Christmas, including how to give an IM emergency dose of his hydrocortisone if we needed to).
Monday, October 29, 2007
VIPS
In addition to physical therapy, Athan is seeing a therapist from VIPS (Visually Impaired Preschool Services). Honestly, we are not sure whether Athan's vision has been affected or not. He is a little behind on tracking objects, but that may be due to his lack of head control and muscle tone rather than his eyes.
Amanda is the therapist that sees Athan, and she was here this morning. The session went well, but Athan did seem a little tired.
I just thought I had better post an update before I forgot. We focus so much on his physical therapy that I forget to post about VIPS.
Laurie will be here this afternoon for PT, and we go back to UK tomorrow to see Dr. Irene (his endocrinologist). I'll let you know how it all goes.
Oh - and Morgan slept for 11 hours last night, and she has not had an accident in a couple of days. Yeah! :)
Amanda is the therapist that sees Athan, and she was here this morning. The session went well, but Athan did seem a little tired.
I just thought I had better post an update before I forgot. We focus so much on his physical therapy that I forget to post about VIPS.
Laurie will be here this afternoon for PT, and we go back to UK tomorrow to see Dr. Irene (his endocrinologist). I'll let you know how it all goes.
Oh - and Morgan slept for 11 hours last night, and she has not had an accident in a couple of days. Yeah! :)
Saturday, October 27, 2007
Guests from home
Lindsey and Nana have been here to visit this week. Lens came in Sunday evening, and left Wednesday. Nana arrived later on Wednesday, and will fly first thing in the morning. It has been so good to have them here! It is always such a help to have extra hands.
Athan has had a good week. He continues to eat well, and physical therapy has gone well this week. Laurie tried a new position for Athan, and he tolerated it well this week. He continues to improve and surprise us all.
Morgan has had a tough couple of weeks. I don't know why, exactly, but she seems to suddenly have lots of trouble with things that were going well (like eating well and going on the potty). Would you just pray her and for us as we seek to navigate the turbulent toddler-ness with her?
Also, our friends Alan and Sarah just welcomed their beautiful daughter, Lucy, to the world! She is such a precious baby girl. Congrats to the wonderful new parents! It is good news that the two of you are going to raise a child together.
Athan has had a good week. He continues to eat well, and physical therapy has gone well this week. Laurie tried a new position for Athan, and he tolerated it well this week. He continues to improve and surprise us all.
Morgan has had a tough couple of weeks. I don't know why, exactly, but she seems to suddenly have lots of trouble with things that were going well (like eating well and going on the potty). Would you just pray her and for us as we seek to navigate the turbulent toddler-ness with her?
Also, our friends Alan and Sarah just welcomed their beautiful daughter, Lucy, to the world! She is such a precious baby girl. Congrats to the wonderful new parents! It is good news that the two of you are going to raise a child together.
Saturday, October 20, 2007
summary
Many of you have followed Athan’s journey from the very beginning. You can skip this post. For those of you who are new readers, this is for you:
Our son, Athan, was born at home on May 29 and we were so glad to finally meet our boy! Everything was going fine for a few hours, but Athan’s condition begin to turn for the worse during the night. He would not eat, and he began to have trouble breathing normally. We called an ambulance. By the time it arrived, Athan was blue all over. He was rushed to UK Children’s hospital, stabilized in the ER, and admitted to the NICU.
The first few days were a terrifying blur of uncertainty. Our boy had lots of tests as part of the diagnostic process, and we mostly cried and waited and prayed. Then we learned that his pituitary gland was not functioning properly, and his body was not producing any of the hormones it is supposed to. As soon as they began medicating to compensate for his hormonal deficiencies, all of his vitals began to normalize.
We stayed in NICU for 16 days, then brought Athan home. Unfortunately, we had to return to the ER a few days later for a second (one week) hospitalization. The second episode was primarily related to finding the correct chemistry and dosage for his medication, which has now been taken care of.
The heart of Athan’s diagnosis is “panhypopituitarism.” It just means that his pituitary gland doesn’t work. Athan will have to be on medication for the rest of his life to artificially supply his body with the hormones it cannot make on its own. The good news is that this condition is very treatable.
He also has small holes in his heart - one between the upper chambers and one between the lower chambers. He will have surgery some time before his first birthday to patch those holes, which should permanently fix his heart problems.
There are some abnormalities on his EEG, which means that there may be some neurological concerns for Athan. He is on an anti-seizure medication as a precaution right now, and we will keep watching to see whether he will come off that med or not. He has never actually had a seizure that we have seen.
Athan is also hypotonic - he has low muscle tone. He’s floppy. We were referred to the First Steps program, and through that program Athan sees a physical therapist twice a week to help him gain muscle tone. His biggest challenge is head control, but he has already made great progress in catching up to the milestones he should be meeting.
Finally, Athan has had extensive genetic testing done to see if there is anything that could shed light on his treatment, as well as informing Ryan and I in decisions about having more children. So far those tests have not found anything specific, and more tests are pending.
Athan is currently doing very well. Scanning a few of the pictures posted previously will show you his giant grin, which is very much common at our house. He is such a happy boy! He takes his medicine well, eats well, sleeps well (most of the time), and fills diapers like a baby should. We have follow-up appointments at the UK clinic about once a month, and will continue to post updates as we learn more from the doctors about our kiddo’s condition.
If you have the time to read Athan's Journey from the beginning, you'll see a family carried along by the prayers of The Church, which is impossible to summarize.
I hope this helps some of you newbies catch up! :)
Our son, Athan, was born at home on May 29 and we were so glad to finally meet our boy! Everything was going fine for a few hours, but Athan’s condition begin to turn for the worse during the night. He would not eat, and he began to have trouble breathing normally. We called an ambulance. By the time it arrived, Athan was blue all over. He was rushed to UK Children’s hospital, stabilized in the ER, and admitted to the NICU.
The first few days were a terrifying blur of uncertainty. Our boy had lots of tests as part of the diagnostic process, and we mostly cried and waited and prayed. Then we learned that his pituitary gland was not functioning properly, and his body was not producing any of the hormones it is supposed to. As soon as they began medicating to compensate for his hormonal deficiencies, all of his vitals began to normalize.
We stayed in NICU for 16 days, then brought Athan home. Unfortunately, we had to return to the ER a few days later for a second (one week) hospitalization. The second episode was primarily related to finding the correct chemistry and dosage for his medication, which has now been taken care of.
The heart of Athan’s diagnosis is “panhypopituitarism.” It just means that his pituitary gland doesn’t work. Athan will have to be on medication for the rest of his life to artificially supply his body with the hormones it cannot make on its own. The good news is that this condition is very treatable.
He also has small holes in his heart - one between the upper chambers and one between the lower chambers. He will have surgery some time before his first birthday to patch those holes, which should permanently fix his heart problems.
There are some abnormalities on his EEG, which means that there may be some neurological concerns for Athan. He is on an anti-seizure medication as a precaution right now, and we will keep watching to see whether he will come off that med or not. He has never actually had a seizure that we have seen.
Athan is also hypotonic - he has low muscle tone. He’s floppy. We were referred to the First Steps program, and through that program Athan sees a physical therapist twice a week to help him gain muscle tone. His biggest challenge is head control, but he has already made great progress in catching up to the milestones he should be meeting.
Finally, Athan has had extensive genetic testing done to see if there is anything that could shed light on his treatment, as well as informing Ryan and I in decisions about having more children. So far those tests have not found anything specific, and more tests are pending.
Athan is currently doing very well. Scanning a few of the pictures posted previously will show you his giant grin, which is very much common at our house. He is such a happy boy! He takes his medicine well, eats well, sleeps well (most of the time), and fills diapers like a baby should. We have follow-up appointments at the UK clinic about once a month, and will continue to post updates as we learn more from the doctors about our kiddo’s condition.
If you have the time to read Athan's Journey from the beginning, you'll see a family carried along by the prayers of The Church, which is impossible to summarize.
I hope this helps some of you newbies catch up! :)
Monday, October 15, 2007
Physical Therapy Progress
--Preview--
The above video is a short clip from Athan's physical therapy appointment today. (if you'd like to watch more, there will be a longer segment below) The little guy is really getting stronger and becoming more active. His head control has been the main area of emphasis since that must be in place before other important milestones can be reached (sitting up, crawling, etc). It was not long ago that Athan couldn't hold his head up at all. That reality makes today's "workout" quite an impressive feat as far as we are concerned! Our PT has been wonderful and Athan has had good days and bad days as far as his cooperation. Most of them have been really good though, and we have rejoiced at his progress. Whatever our PT teaches him/us we try to repeat throughout the week, and it's fun to see him work and get stronger...little by little. The above mentioned PT is featured in today's video, along with her lovely daughter - who is a great helper with exercises and with entertaining Morgan!
I was speechless.
The above video is a short clip from Athan's physical therapy appointment today. (if you'd like to watch more, there will be a longer segment below) The little guy is really getting stronger and becoming more active. His head control has been the main area of emphasis since that must be in place before other important milestones can be reached (sitting up, crawling, etc). It was not long ago that Athan couldn't hold his head up at all. That reality makes today's "workout" quite an impressive feat as far as we are concerned! Our PT has been wonderful and Athan has had good days and bad days as far as his cooperation. Most of them have been really good though, and we have rejoiced at his progress. Whatever our PT teaches him/us we try to repeat throughout the week, and it's fun to see him work and get stronger...little by little. The above mentioned PT is featured in today's video, along with her lovely daughter - who is a great helper with exercises and with entertaining Morgan!
I was speechless.
Sunday, October 14, 2007
more from Boyd's
And after all that fun, we came home and Hannah made us Candied Apple Pie with apples from the orchard:
I think I'll go have another piece of pie right now! :)
might as well
It's 3 a.m., and Athan is awake. Not fussy. Just wide awake. And talkative. So I might as well blog, right? :) Helps keep me sane...
Morgan and I had a big day today! We left the boys to hang out here, and we went with Jason, Hannah, and Margot to Boyd's Orchard. What fun!
I'll get more pictures up tomorrow, but I think Athan is finally asleep now. I'm heading to bed!
Morgan and I had a big day today! We left the boys to hang out here, and we went with Jason, Hannah, and Margot to Boyd's Orchard. What fun!
I'll get more pictures up tomorrow, but I think Athan is finally asleep now. I'm heading to bed!
Friday, October 12, 2007
a stellar day
Laurie came over for Athan's physical therapy today, and he worked like a champ! Example: Just 2 weeks ago we were celebrating that Athan held his head steady (with hands helping steady his torso) for about 45 seconds. Today - 3 and a half minutes! Woo-hoo! He just worked really hard today.
Morgan has had a good day, too. She's had a couple of the inevitable toddler moments (like throwing her shoes and refusing to come inside to eat), but she also has responded well to discipline. When she woke up from her nap, 2 hours after the shoe-throwing incident, she apologized on her own.
Ryan has been out and about most of today on a couple different errands, but he had some good daddy-daughter time with Morgan this morning. He was here to help with physical therapy for a while, too.
And I've had a good day. I've recovered from all my sickly-ness (no more tummy troubles, headache, congestion). I rested well this morning while Morgan was out with Ryan, and my afternoon has been productive. It just seems to be one of those rare days when most things just click.
I know some of you have been praying specifically for days like this for us. Thanks! :)
Morgan has had a good day, too. She's had a couple of the inevitable toddler moments (like throwing her shoes and refusing to come inside to eat), but she also has responded well to discipline. When she woke up from her nap, 2 hours after the shoe-throwing incident, she apologized on her own.
Ryan has been out and about most of today on a couple different errands, but he had some good daddy-daughter time with Morgan this morning. He was here to help with physical therapy for a while, too.
And I've had a good day. I've recovered from all my sickly-ness (no more tummy troubles, headache, congestion). I rested well this morning while Morgan was out with Ryan, and my afternoon has been productive. It just seems to be one of those rare days when most things just click.
I know some of you have been praying specifically for days like this for us. Thanks! :)
Thursday, October 11, 2007
milestone
Ever since we brought Athan home from the hospital, I have had a bag packed and ready in case we had to go back.
I unpacked it today.
:)
I unpacked it today.
:)
Thursday, October 4, 2007
catching up
I haven't written in a while, and I need to catch up on several things:
I've been meaning to wrap-up about our appointments at UK last week. Everything went so much better this time. The frustrations from last month's visit certainly did not carry over. Everyone seemed to be much more on the same page, and communication went much more smoothly this time. We were so relieved!
Also we saw Dr. Coburn today. He is very encouraged about Athan's progress. We did the second round of immunizations today, so pray for our boy the next couple of days as he recovers from that.
PT has been going well. Monday Laurie said Athan was feeling like any baby trying to gain head control (instead of a sick baby trying to catch up). Wednesday he wasn't as willing to work, but this may be a 2-steps-forward-1-step-back kind of pattern as he catches up.
Athan is also chewing on his fingers like a crazy man - I think we may have a couple of teeth about to pop through!
Sleep has been scarce the past week or so - for all of us. Athan has been staying awake at night (not fussy at all - just awake). Morgan has been having some trouble staying in bed. I've been up with them. Ryan pulled his first seminary all-nighter. We're all kinda sleepy, but the weekend will hopefully be more restful.
I've been meaning to wrap-up about our appointments at UK last week. Everything went so much better this time. The frustrations from last month's visit certainly did not carry over. Everyone seemed to be much more on the same page, and communication went much more smoothly this time. We were so relieved!
Also we saw Dr. Coburn today. He is very encouraged about Athan's progress. We did the second round of immunizations today, so pray for our boy the next couple of days as he recovers from that.
PT has been going well. Monday Laurie said Athan was feeling like any baby trying to gain head control (instead of a sick baby trying to catch up). Wednesday he wasn't as willing to work, but this may be a 2-steps-forward-1-step-back kind of pattern as he catches up.
Athan is also chewing on his fingers like a crazy man - I think we may have a couple of teeth about to pop through!
Sleep has been scarce the past week or so - for all of us. Athan has been staying awake at night (not fussy at all - just awake). Morgan has been having some trouble staying in bed. I've been up with them. Ryan pulled his first seminary all-nighter. We're all kinda sleepy, but the weekend will hopefully be more restful.
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