Jonathan rolled over from his back to front for the first time a few days ago. He did this while we had the brace off. I think he's pretty close to doing it with the brace on soon.
His favorite toy is his feet :-)
He likes to grab both of them and pull them up in the air.
If I can snag a picture of this, I will. It looks like he's having the time of his life!
Thursday, August 11, 2011
Thursday, July 21, 2011
An overdue update
I know I haven't been here in a while posting updates.
I have a confession to make.
My lack of postings has not been due to any sort of laziness about this story. It isn't a lack of interest or "forgetting" about my little project.
The truth is that I've been feeling guilty.
Jonathan is now 4 1/2 months old and his feet look perfect. I feel like I made a bigger deal about his birth defect than was warranted.
Here is a quick summary of his progress:
3rd Casting (3/24/2011)
We were finally able to give little Jonathan his first bath at home with the casts off!
He is still wearing the casts for a week at a time at this point. He is a little fussy, but it's not too bad.
4th Casting (3/31/2011)
5th Casting (4/7/2011)....NO CASTS ANY MORE!!!!!!!!!!!
Today we went for our next casting. SURPRISE!!!! Dr. Gamble says that Jonathan's feet have responded so well to treatment that he won't need casts anymore! We didn't expect this so soon. We couldn't be more happy!!!
NEXT STEP: We were referred to CIRS Prosthetic Orthotics today to be fit for a "Mitchell Brace." This is basically a brace that Jonathan has to currently wear 23 hours a day for a few months. This will keep his feet shoulder-width apart and keep his feet and ankles pointed out at an outward angle. This will keep his feet in position while his muscles and tendons are growing.
One of the great perks of this is that he gets to be out of his casts for a whole week while his brace is ordered!
Jonathan gets his brace (4/14/2011)
We went back to CIRS today to pick up his brace
The Stanford Drs help us put it on for the first time
Fast Forward
So. Since Jonathan got his brace he has tolerated it really well. I was worried that it would hinder him somehow but it has not so far.
He went from wearing the brace 23 hours a day (1 hour break each day for his bath)....to wearing the brace 17 hours a day (6 hours or so off each day)...to currently (7/21/2011) wearing the brace at bedtime and then six hours or so during the day.
Its great to have him out of the brace for so many hours a day now. He doesn't seem to notice either way, but it makes me feel better somehow.
Inconveniences
The only real inconveniences have been that due to the width of the brace, his legs didn't fit in his car seat so well. I had to add some extra padding under his butt for him to fit right in the seat. (We use a Graco Snugride 32). Also, since he has to wear the shoes, he can't really wear pajamas with footies to bed. We either buy PJs without feet or we cut the feet out of his older brother's old PJs. No big deal.
Today (07/21/2011)
Jonathan weighs a whopping 18lbs, 4oz. He is 26+ inches long. He is a big boy!!!! He's only a few pounds shy of his (1yr) older brother.
Summary
As I stated at the beginning of this blog entry, I've been feeling guilty about making such a big deal about this. Writing this blog at first was a way for me to cope with the fear and uncertainty that I had from not knowing what to expect. What I've found out now that we've been with our baby boy for 4+ months is that he is fine. He is perfect. He will have what I considered to be a "normal" life. Sure, people give my wife and I strange looks sometimes when they see his brace. SO WHAT. I really could care less.
I know that some babies have cases that are more severe than Jonathan. The fact is that even in some of the MOST severe cases, your child will have nearly perfectly functioning feet.
The only thing that matters is that Jonathan could not be a happier baby. He is all smiles and he kicks his little legs around with strength and no difficulty. He has never known living without the brace. It is normal to him and doesn't seem to bother him. Our feeling is that his progress has been so good that he won't even need to have his tendon cut at all later.
I suppose if anyone reading this were to take away one message, I would hope that it would be "However your baby is born is how they're meant to be. They are perfect. We as parents have fear for our children, but it's fear through the lens of our own lives and experiences. They will never know differently and they will be happy with almost any challenge to overcome."
I would love to hear comments or questions from any new/existing parents of children with Club Feet. I don't mind answering your questions. If you want to know how I felt emotionally during a particular phase of this please ask. If you have a technical question about the casts or brace, please ask.
Now that I've gotten all the guilt off my chest, my aim is to post here every few months with a simple update on Jonathan. I don't think the detailed minute-by-minute updates are warranted any longer. Hopefully for the next few years we can watch Jonathan grow, crawl, start to walk, then run together.
I hope that this gives all of you some measure of hope and inspiration for your own new baby boy or girl.
Love your babies no matter what happens, their smiles will get you through the tough parts :-)
I have a confession to make.
My lack of postings has not been due to any sort of laziness about this story. It isn't a lack of interest or "forgetting" about my little project.
The truth is that I've been feeling guilty.
Jonathan is now 4 1/2 months old and his feet look perfect. I feel like I made a bigger deal about his birth defect than was warranted.
Here is a quick summary of his progress:
3rd Casting (3/24/2011)
 |
| Taking off his casts for the first time at home before his 3rd casting |
 |
| Taking off his casts for the first time at home before his 3rd casting |
 |
| Taking off his casts for the first time at home before his 3rd casting |
 |
| Taking off his casts for the first time at home before his 3rd casting |
 |
| First real bath at home!!!!! |
 |
| Look at how far his feet are deflected outwards!!!! |
We were finally able to give little Jonathan his first bath at home with the casts off!
He is still wearing the casts for a week at a time at this point. He is a little fussy, but it's not too bad.
4th Casting (3/31/2011)
 |
 |
 | ||
| Look how far out they have his feet set. This is so that when the "spring" back to a natural position, it will be a "normal" one. |
5th Casting (4/7/2011)....NO CASTS ANY MORE!!!!!!!!!!!
Today we went for our next casting. SURPRISE!!!! Dr. Gamble says that Jonathan's feet have responded so well to treatment that he won't need casts anymore! We didn't expect this so soon. We couldn't be more happy!!!
NEXT STEP: We were referred to CIRS Prosthetic Orthotics today to be fit for a "Mitchell Brace." This is basically a brace that Jonathan has to currently wear 23 hours a day for a few months. This will keep his feet shoulder-width apart and keep his feet and ankles pointed out at an outward angle. This will keep his feet in position while his muscles and tendons are growing.
One of the great perks of this is that he gets to be out of his casts for a whole week while his brace is ordered!
Jonathan gets his brace (4/14/2011)
We went back to CIRS today to pick up his brace
The Stanford Drs help us put it on for the first time
Fast Forward
So. Since Jonathan got his brace he has tolerated it really well. I was worried that it would hinder him somehow but it has not so far.
He went from wearing the brace 23 hours a day (1 hour break each day for his bath)....to wearing the brace 17 hours a day (6 hours or so off each day)...to currently (7/21/2011) wearing the brace at bedtime and then six hours or so during the day.
Its great to have him out of the brace for so many hours a day now. He doesn't seem to notice either way, but it makes me feel better somehow.
Inconveniences
The only real inconveniences have been that due to the width of the brace, his legs didn't fit in his car seat so well. I had to add some extra padding under his butt for him to fit right in the seat. (We use a Graco Snugride 32). Also, since he has to wear the shoes, he can't really wear pajamas with footies to bed. We either buy PJs without feet or we cut the feet out of his older brother's old PJs. No big deal.
Today (07/21/2011)
 |
| As you can see, sleeping isn't a problem for my little guy with the brace on. |
Jonathan weighs a whopping 18lbs, 4oz. He is 26+ inches long. He is a big boy!!!! He's only a few pounds shy of his (1yr) older brother.
Summary
As I stated at the beginning of this blog entry, I've been feeling guilty about making such a big deal about this. Writing this blog at first was a way for me to cope with the fear and uncertainty that I had from not knowing what to expect. What I've found out now that we've been with our baby boy for 4+ months is that he is fine. He is perfect. He will have what I considered to be a "normal" life. Sure, people give my wife and I strange looks sometimes when they see his brace. SO WHAT. I really could care less.
I know that some babies have cases that are more severe than Jonathan. The fact is that even in some of the MOST severe cases, your child will have nearly perfectly functioning feet.
The only thing that matters is that Jonathan could not be a happier baby. He is all smiles and he kicks his little legs around with strength and no difficulty. He has never known living without the brace. It is normal to him and doesn't seem to bother him. Our feeling is that his progress has been so good that he won't even need to have his tendon cut at all later.
I suppose if anyone reading this were to take away one message, I would hope that it would be "However your baby is born is how they're meant to be. They are perfect. We as parents have fear for our children, but it's fear through the lens of our own lives and experiences. They will never know differently and they will be happy with almost any challenge to overcome."
I would love to hear comments or questions from any new/existing parents of children with Club Feet. I don't mind answering your questions. If you want to know how I felt emotionally during a particular phase of this please ask. If you have a technical question about the casts or brace, please ask.
Now that I've gotten all the guilt off my chest, my aim is to post here every few months with a simple update on Jonathan. I don't think the detailed minute-by-minute updates are warranted any longer. Hopefully for the next few years we can watch Jonathan grow, crawl, start to walk, then run together.
I hope that this gives all of you some measure of hope and inspiration for your own new baby boy or girl.
Love your babies no matter what happens, their smiles will get you through the tough parts :-)
Wednesday, March 23, 2011
2nd Casting
So it would seem at this point that I'm posting a summary at the end of a new 7-day period. We'll see if I change my ways :)
It's St. Patrick's day!
Removing the casts
Dr. Gamble showed us how to remove Jonathan's casts today. This way we can give him a nice soaking bath the morning of our next appointment. It was WAY easier than I thought. I imagined using a saw or something to remove them. It's easy. You just find the end and unravel!
Progression
Dr. Gamble said today that Jonathan's right foot is a little more stiff than the left. It will just take some extra-correction positioning. You can see in later pics here how his right foot was casted at a more extreme angle this time than the left.
Look at how much only ONE week of casting has progressed his foot position! Amazing!
After care
It's been so hard to keep his cast and cast-socks clean. He is a newborn pooping machine after all. They gave us an extra pair of cast socks to take home. Hopefully that will help.
This week he was still cranky and uncomfortable for a few days after casting. Low-dose children's Tylenol seemed to help. Not nearly as bad as the first week.
What's happening next
Tomorrow is casting #3 at Stanford.
In the morning, we're going to pull his casts off for the first time at home so that he can have his VERY FIRST tub bath!
Stay tuned....
It's St. Patrick's day!
 |
| Jonathan's 1st St. Patrick's Day |
Removing the casts
Dr. Gamble showed us how to remove Jonathan's casts today. This way we can give him a nice soaking bath the morning of our next appointment. It was WAY easier than I thought. I imagined using a saw or something to remove them. It's easy. You just find the end and unravel!
 |
| Me unwrapping his casts for the first time |
Dr. Gamble said today that Jonathan's right foot is a little more stiff than the left. It will just take some extra-correction positioning. You can see in later pics here how his right foot was casted at a more extreme angle this time than the left.
Look at how much only ONE week of casting has progressed his foot position! Amazing!
 |
| Look at how much more straight his feet are after ONE WEEK! |
 |
| Look at how much more straight his feet are after ONE WEEK! |
 |
| On goes cast #2 |
 |
| Not liking it very much |
 |
| Mom swoops in with the bottle to calm him |
 |
| Almost done! |
 |
| All done. Look how his right foot has been casted at a more extreme angle than his left. |
 |
| One more shot after completion |
 |
| Ready to go home with Mom |
After care
It's been so hard to keep his cast and cast-socks clean. He is a newborn pooping machine after all. They gave us an extra pair of cast socks to take home. Hopefully that will help.
This week he was still cranky and uncomfortable for a few days after casting. Low-dose children's Tylenol seemed to help. Not nearly as bad as the first week.
What's happening next
Tomorrow is casting #3 at Stanford.
In the morning, we're going to pull his casts off for the first time at home so that he can have his VERY FIRST tub bath!
Stay tuned....
Wednesday, March 16, 2011
The First Casting
I'm actually writing this blog entry a day before casting #2. Having a 1-year old and a 1-week old in the house is tiring to say the least!
Driving to casting #1 - 3/9/11
Mary and I are driving to Palo Alto, CA to Lucile Packard Children's Hospital. I'm imagining all sorts of procedures that will need to be done on Jonathan (x-rays, consultations, etc...).
I read some more forums online over the last few days. Parents said that you baby won't be able to wear pants or footie pajamas. No big deal.
We don't know quite what to expect and we're prepared for an ordeal today.
At the office
We arrive at Dr. Gamble's office on time. The last time we were here it took several hours for just a consult.
To our surprise, we get in the office quickly.
Dr. Gamble enters and we have a nice conversation about club feet in general again. He mentions that it's great that the baby is here within a few days of birth and says that if you wait even two weeks to begin treatment, it becomes more difficult.
He examines Jonathan's feet and says "Oh yeah. I can fix this. This is a moderate case of club feet."
MODERATE!?!? How can that be? They look bent 90 degrees to me. How can this be right?
Dr. Gamble says "It's not that bad, watch this..."
He then takes one of Jonathan's little feet and after a series of purposeful movements....BENDS IT STRAIGHT WITH HIS HANDS!
He says "That's it that's all there is to it. No big deal."
Dr. Gamble goes on to explain our planned course of treatment:
Time to cast
Dr. Gamble again manipulates Jonathan's feet straight. His assistant comes in and wraps one leg with a cast (I guess it's plaster) in about two minutes. It's dry and hard in 5 mins. Jonathan doesn't seem to mind.
He fusses a little bit between castings, but a pacifier and bottle seem to calm him down.
After just a few more minutes, the casting is done. They set his legs in a semi-bent pose.
They tell us that we can't bathe him in a tub. Before our next appointment they'll show us how to remove the casts and give him a bath in the morning.
Total office visit time: 1 hour from check-in to walking out!
Care over the next week
The first two days were AWFUL. He seemed to be in considerable discomfort. He was up every 30 minutes crying and he was just inconsolable. A call to LPCH provided some advice. We could give Jonathan .4ml of Tylenol and after two day or so his feet should stretch and become more comfortable again. This seemed to work. At the time of this posting, we're on his 7th day of casting...he seems to be much more comfortable now.
The casts haven't really been a big deal. Mary even is able to fit pants over them so no one notices. It's not that I feel the need to hide his condition, it's more that I don't want to answer the same question from a million strangers. Still, we've gotten a few interesting looks from people...but only a few easily-fieldable questions.
We took him to his 1-week follow up Pediatrician appt today. He is 8lb, 8oz. ( up from 7lb 5oz last week) Of course, we have no idea what he actually weighs due to the casts. I'm going to try and weigh them tomorrow after removal.
Cleanliness
It's hard keeping casts clean on a 1-week old baby. They poop about a MILLION times a day! There are a couple of brown splatters at the top of his casts, but I have no idea what we could have done to prevent that. So far it's also just sponge baths for the little guy.
One more night of sleep for Jonathan before they bend his feet and re-cast tomorrow. For now, he's sleeping soundly...in footie PJ's. ;-)
Driving to casting #1 - 3/9/11
Mary and I are driving to Palo Alto, CA to Lucile Packard Children's Hospital. I'm imagining all sorts of procedures that will need to be done on Jonathan (x-rays, consultations, etc...).
I read some more forums online over the last few days. Parents said that you baby won't be able to wear pants or footie pajamas. No big deal.
We don't know quite what to expect and we're prepared for an ordeal today.
At the office
To our surprise, we get in the office quickly.
 |
| Mary and Jonathan in the exam room |
Dr. Gamble enters and we have a nice conversation about club feet in general again. He mentions that it's great that the baby is here within a few days of birth and says that if you wait even two weeks to begin treatment, it becomes more difficult.
He examines Jonathan's feet and says "Oh yeah. I can fix this. This is a moderate case of club feet."
MODERATE!?!? How can that be? They look bent 90 degrees to me. How can this be right?
Dr. Gamble says "It's not that bad, watch this..."
He then takes one of Jonathan's little feet and after a series of purposeful movements....BENDS IT STRAIGHT WITH HIS HANDS!
He says "That's it that's all there is to it. No big deal."
Dr. Gamble goes on to explain our planned course of treatment:
- 6 weeks of weekly casting and physical foot manipulation.
- 6 weeks of wearing some brace 23hours a day
- Keeping Jonathan in a brace at night until he's three if we can.
Time to cast
Dr. Gamble again manipulates Jonathan's feet straight. His assistant comes in and wraps one leg with a cast (I guess it's plaster) in about two minutes. It's dry and hard in 5 mins. Jonathan doesn't seem to mind.
 |
| First leg about to be wrapped |
 |
| First leg done, waiting a minute to dry |
 |
| Second leg starting |
After just a few more minutes, the casting is done. They set his legs in a semi-bent pose.
 |
| All done! |
They tell us that we can't bathe him in a tub. Before our next appointment they'll show us how to remove the casts and give him a bath in the morning.
Total office visit time: 1 hour from check-in to walking out!
Care over the next week
The first two days were AWFUL. He seemed to be in considerable discomfort. He was up every 30 minutes crying and he was just inconsolable. A call to LPCH provided some advice. We could give Jonathan .4ml of Tylenol and after two day or so his feet should stretch and become more comfortable again. This seemed to work. At the time of this posting, we're on his 7th day of casting...he seems to be much more comfortable now.
The casts haven't really been a big deal. Mary even is able to fit pants over them so no one notices. It's not that I feel the need to hide his condition, it's more that I don't want to answer the same question from a million strangers. Still, we've gotten a few interesting looks from people...but only a few easily-fieldable questions.
We took him to his 1-week follow up Pediatrician appt today. He is 8lb, 8oz. ( up from 7lb 5oz last week) Of course, we have no idea what he actually weighs due to the casts. I'm going to try and weigh them tomorrow after removal.
Cleanliness
It's hard keeping casts clean on a 1-week old baby. They poop about a MILLION times a day! There are a couple of brown splatters at the top of his casts, but I have no idea what we could have done to prevent that. So far it's also just sponge baths for the little guy.
One more night of sleep for Jonathan before they bend his feet and re-cast tomorrow. For now, he's sleeping soundly...in footie PJ's. ;-)
 |
| 12 hours to go until casting #2 |
Tuesday, March 8, 2011
He's HERE He's HERE!!!!!!
Jonathan Bryan Lynch was born on March 4th, 2011 at 6:41PM.
He was 7lb 7oz and 20 inches long! I'm so excited!
My wife and I are so happy that our beautiful son is finally here with us :) He has been perfectly healthy except for a little jaundice that should go away. Also, the stork left him with a very small "Stork Bite" on his forehead.
He is a little more fair-skinned than I am and I think he looks more like my wife then me. (lucky kid lol)
I was pretty nervous to see Jonathan's clubbed feet for the first time. I know I shouldn't have been, but that's just the honest truth. In reality, they really are not anything shocking to look at. I also noticed that his calf muscles seem to be pretty small. Apparently this is a normal symptom of having club feet. The good news is that they won't stay small forever, he will build them back up through normal exercise over time. The doctor even mentioned that in some cases it's better to have two clubbed feet instead of one, so that the calf muscles will be the same size.
One funny thing that I've noticed is that since they're turned inward, he seems to use them to grab on to things. It's pretty cute :-)
Meet Jonathan:
And here's a close up of his little feet on Day 1:
Learning to answer questions
One of the things that I was told to get used to was the answering of questions from people all of the time. So far, we've been at home and not really had little Jonathan out anywhere, so I imagine that's to come. That being said, even in the hospital, as each nurse would come on shift I could see their reaction. They walk in to check on the baby in room 2xx. They see his feet, feel his feet, some try to move them straight and then invariably they say "Are you already aware of his feet?" "Do you have a doctor to talk to?" or "I think there's something wrong with his feet."
I calmly explain that we've known about it for months and that he has a treatment plan already set in motion. That's usually the end of it. After 4-5 times I started to get annoyed, but then I realized that being annoyed would serve no purpose. I think it's better to talk about it and be open in discussion and I feel much better for doing just that.
Aftercare:
I just want to say how very fortunate we are to have a daycare provider that is so wonderful. Julie runs a great program and she has become like a member of our family. I don't worry one bit about her caring for my son on the days when my wife and I both eventually have to go back to work. Jonathan will be making his first trip to Julie's house today to meet her and to discuss what's to come.
First appointment with Stanford:
Jonathan's first appointment with Dr. Gamble at Lucile Packard Children's Hospital is this coming Wednesday, March 9th.
According to our last consult with Dr. Gamble they will place his first casts on his feet at this appointment. Cross your fingers!
He was 7lb 7oz and 20 inches long! I'm so excited!
 |
| Jonathan moments after being born with Dad |
My wife and I are so happy that our beautiful son is finally here with us :) He has been perfectly healthy except for a little jaundice that should go away. Also, the stork left him with a very small "Stork Bite" on his forehead.
He is a little more fair-skinned than I am and I think he looks more like my wife then me. (lucky kid lol)
I was pretty nervous to see Jonathan's clubbed feet for the first time. I know I shouldn't have been, but that's just the honest truth. In reality, they really are not anything shocking to look at. I also noticed that his calf muscles seem to be pretty small. Apparently this is a normal symptom of having club feet. The good news is that they won't stay small forever, he will build them back up through normal exercise over time. The doctor even mentioned that in some cases it's better to have two clubbed feet instead of one, so that the calf muscles will be the same size.
One funny thing that I've noticed is that since they're turned inward, he seems to use them to grab on to things. It's pretty cute :-)
Meet Jonathan:
And here's a close up of his little feet on Day 1:
 |
| Bilateral Club Foot |
Learning to answer questions
One of the things that I was told to get used to was the answering of questions from people all of the time. So far, we've been at home and not really had little Jonathan out anywhere, so I imagine that's to come. That being said, even in the hospital, as each nurse would come on shift I could see their reaction. They walk in to check on the baby in room 2xx. They see his feet, feel his feet, some try to move them straight and then invariably they say "Are you already aware of his feet?" "Do you have a doctor to talk to?" or "I think there's something wrong with his feet."
I calmly explain that we've known about it for months and that he has a treatment plan already set in motion. That's usually the end of it. After 4-5 times I started to get annoyed, but then I realized that being annoyed would serve no purpose. I think it's better to talk about it and be open in discussion and I feel much better for doing just that.
Aftercare:
I just want to say how very fortunate we are to have a daycare provider that is so wonderful. Julie runs a great program and she has become like a member of our family. I don't worry one bit about her caring for my son on the days when my wife and I both eventually have to go back to work. Jonathan will be making his first trip to Julie's house today to meet her and to discuss what's to come.
First appointment with Stanford:
Jonathan's first appointment with Dr. Gamble at Lucile Packard Children's Hospital is this coming Wednesday, March 9th.
According to our last consult with Dr. Gamble they will place his first casts on his feet at this appointment. Cross your fingers!
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