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!
Tuesday, December 14, 2010
An Introduction
Jonathan will be joining our family on or around March 5th, 2011.
Allow me to introduce myself. My name is Bryan. This first post is a tad long because it is my first and I have a lot to write about! :-)
My wife Mary, son Joseph and I live just South of the Bay Area in Northern California.
I am writing this blog not only to therapeutically help myself, but in the hopes that some stray soon-to-be Father/Mother may one day find this of some help or comfort whilst searching the internet for information about their child's diagnosis of "Club Foot." My aim is to periodically share with you here our experience along the way as Jonathan and our family undergo corrective treatment for his case of bilateral club feet. In my own search for questions, I found this type of personal information far more helpful and encouraging than some medical dictionary website.
The doctors first informed us of Jonathan's condition at our 26-week ultrasound. Mary and I went to this regularly scheduled ultrasound to check up on the little guy and in the hopes that we would discover the sex of our newest family addition. -This would be a good time to mention a bit of background information in regards to our family and having children.
Our son Joseph was born on March 12th, 2010. It was a joyous day for our family, I cried like I have never cried before with joy at his arrival. He was beautiful. The moments following that instant were some of the hardest I have yet experienced. The NICU (Neonatal Intensive Care Unit) team was there in advance and ready to receive Joseph. The team of doctors instantly rushed his little body with probes, needles, tubes and lights. I was only able to see him for a few short minutes before he was whisked away upstairs to the NICU. The next 8 weeks were a test of will. We had terrifying ups and downs. Joseph turned blue in my arms several times. Barely able to make physical contact with our newborn son, we lived in a room at the hospital 24x7. We ate at the hospital for nearly every meal. We made lifelong friends with other patients, staff and doctors. In the last nine months, Joseph has gone from 3lb 6oz up to over 18lb! He is as healthy and happy as any other baby. No one can tell any longer that he was ten weeks early. I Love him with all my heart and soul and am grateful for the miracle that is his life.
It took us three years of trying to have Joseph. We wanted several children and to find out after only several months of being home from the hospital that Mary was pregnant with Jonathan was delightful news! Our family is growing again!
Needless to say, our last "atypical" experience with childbirth had put us on edge to say the least. This time around, the doctors have us in every few weeks, there are different drugs and preparations being made. They tell us that the likelihood of having a premature birth again climbs very high after it happens once. Every visit to the doctor is done with clenched teeth and a quickened pulse. Is something going to go wrong? How is the baby? How is my wife? Can we do anything to help? Is there some miracle drug we need to be taking? and so on and so on....
We found out his sex! We're having a boy! Two boys!!!
We start to notice that the ultrasound tech is taking a little longer than we are used to. She is focusing a lot of time on his lower body. Taking a lot of pictures.
To be honest at this point I don't clearly remember who told us the news. I'm not sure if it was our doctor or the ultrasound tech.
They informed us that Jonathan has bilateral club feet.
My mind instantly raced to the fact that Joseph was born so early. Did we do something wrong? Did we push our luck by having another child? Was he going to be able to walk? Is he deformed for life? Does this mean that he has some other syndrome or condition? Is there anything else wrong with him? Why is this happening? How can we possibly deal with another serious issue with one of our babies so soon after our recent marathon of suffering and joy?
I'm not going to lie. In the absence of information I was depressed, sad and scared for my little boy. Don't take that the wrong way. I already love my little boy with all my heart, no matter how he is born. Like every other parent in the world, I simply want for Jonathan to have the very best chance at what we consider a "normal" life.
The doctor made several appointments for us. A high-risk pregnancy doctor, another more detailed fetal echo-cardiogram, a genetic counselor.
For the next several days, Google was my friend. I looked up pictures of other children with club feet. I read stories of parents experience through treatment. I read statistics. I learned of something called the "Ponseti Method." I read about the potential surgeries and duration of treatment we would expect.
Around this same time we received word that Jonathan's second trimester screening results showed he is at very low risk for an associated syndrome. I'm starting to feel encouraged now. I'm feeling like it's time to find out as much as we can and be prepared. Time to attack this problem head-on as soon as we can!
Because of the abnormality, they wanted to check his heart to make sure it was healthy.
We had a more detailed ultrasound done almost a week later by a Stanford-affiliated high-risk center near the Monterey Bay. They told us everything looked good to them, but that just to be safe, we should still talk to a genetic counselor and go to Stanford for a detailed fetal echo-cardiogram. We walked next door to the genetic counselor and had a nice talk with her. Honestly, she was nice, but I think it was a waste of time. They ask you questions about your family history (My sister and I coincidentally had less severe issues with our legs and/or feet corrected when we were very young.) They ask you if you smoke....etc. I get the feeling that their real purpose in life is to collect statistics. They asked us to do an amniocentesis to check for the likelihood of something else like Down Syndrome being present. We could not say NO fast enough. Having an amnio increases your risk of having a premature birth and that's the last thing we want! Besides, we will love our child no matter how he is born, the extra tests seem a needless risk.
Off to Stanford weeks later.
A fetal echo-cardiogram is a long study. Each one takes about 1.5 hours. Unless you're "in the business" or are adept at reading tea leaves, most of what you see is a blobby-blurry-jumbled mess! You sit there for that long waiting for them to say something...anything. This first study showed nothing wrong with Jonathan's heart, thank goodness. They asked us to come back in another month so they could capture more clear pictures of the last 5% of the study.
A month later the second study was finished. Good news! Jonathan's heart looks GREAT!
We walk next door at Stanford for our first appointment with the orthopedic surgeon who will be treating Jonathan. Sitting in the waiting room itself was a learning experience for us. We saw lots of healthy-looking babies smiling and playing, all while having casts on their feet and legs. Some had a funny looking bar between their legs, forcing their feet to be angled out.
Meeting the Doctor.
Bi-lateral, means Jonathan has the condition in both feet. The doctors at Stanford are great. They really took the time to answer our questions and concerns. They explained that club foot is one of the most common and treatable deformities. One in every thousand children are born with this. They told us that people like Kristy Yamaguchi, Troy Aikman, Mia Hamm all had club feet!
Planned Treatment.
So this is the plan! Within only a day or two of Jonathan being born, we have his first appointment up at Stanford. Apparently they cannot tell the severity of his case until he is born. The plan is to use "serial manipulations" and casting once a week for several months. They basically force his little feet into a corrected position, cast them in place, and then repeat for months. After this he may have to get a minor surgery that cuts the tendon in his heel. At some point soon in his treatment he will have to wear a bar between his legs for 23 hours a day, eventually tapering down to just at bedtime for a few years. They say the babies learn to crawl and walk just fine, they don't know anything different. It's Mary and I who will likely have more mental anguish than Jonathan.
You can view video of the "Ponseti Method" procedure HERE
Whew. I think we're all caught up now! Mary and I are anxious to meet our new son and to get started in helping the young man out as soon as we can in a few months. I'm looking forward to learning more about all of this. At this point we could not feel any more positive and encouraged for Jonathan. We are surrounded by great doctors, family and friends. We're ready for the constant 90-minute treks to Stanford. Keep your fingers crossed! See you soon...
Allow me to introduce myself. My name is Bryan. This first post is a tad long because it is my first and I have a lot to write about! :-)
My wife Mary, son Joseph and I live just South of the Bay Area in Northern California.
I am writing this blog not only to therapeutically help myself, but in the hopes that some stray soon-to-be Father/Mother may one day find this of some help or comfort whilst searching the internet for information about their child's diagnosis of "Club Foot." My aim is to periodically share with you here our experience along the way as Jonathan and our family undergo corrective treatment for his case of bilateral club feet. In my own search for questions, I found this type of personal information far more helpful and encouraging than some medical dictionary website.
The doctors first informed us of Jonathan's condition at our 26-week ultrasound. Mary and I went to this regularly scheduled ultrasound to check up on the little guy and in the hopes that we would discover the sex of our newest family addition. -This would be a good time to mention a bit of background information in regards to our family and having children.
Our son Joseph was born on March 12th, 2010. It was a joyous day for our family, I cried like I have never cried before with joy at his arrival. He was beautiful. The moments following that instant were some of the hardest I have yet experienced. The NICU (Neonatal Intensive Care Unit) team was there in advance and ready to receive Joseph. The team of doctors instantly rushed his little body with probes, needles, tubes and lights. I was only able to see him for a few short minutes before he was whisked away upstairs to the NICU. The next 8 weeks were a test of will. We had terrifying ups and downs. Joseph turned blue in my arms several times. Barely able to make physical contact with our newborn son, we lived in a room at the hospital 24x7. We ate at the hospital for nearly every meal. We made lifelong friends with other patients, staff and doctors. In the last nine months, Joseph has gone from 3lb 6oz up to over 18lb! He is as healthy and happy as any other baby. No one can tell any longer that he was ten weeks early. I Love him with all my heart and soul and am grateful for the miracle that is his life.
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| Joseph a few days after birth. 3lb 6oz |
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| Joseph at 9 months. 18+lbs! |
It took us three years of trying to have Joseph. We wanted several children and to find out after only several months of being home from the hospital that Mary was pregnant with Jonathan was delightful news! Our family is growing again!
Needless to say, our last "atypical" experience with childbirth had put us on edge to say the least. This time around, the doctors have us in every few weeks, there are different drugs and preparations being made. They tell us that the likelihood of having a premature birth again climbs very high after it happens once. Every visit to the doctor is done with clenched teeth and a quickened pulse. Is something going to go wrong? How is the baby? How is my wife? Can we do anything to help? Is there some miracle drug we need to be taking? and so on and so on....
We found out his sex! We're having a boy! Two boys!!!
We start to notice that the ultrasound tech is taking a little longer than we are used to. She is focusing a lot of time on his lower body. Taking a lot of pictures.
To be honest at this point I don't clearly remember who told us the news. I'm not sure if it was our doctor or the ultrasound tech.
They informed us that Jonathan has bilateral club feet.
My mind instantly raced to the fact that Joseph was born so early. Did we do something wrong? Did we push our luck by having another child? Was he going to be able to walk? Is he deformed for life? Does this mean that he has some other syndrome or condition? Is there anything else wrong with him? Why is this happening? How can we possibly deal with another serious issue with one of our babies so soon after our recent marathon of suffering and joy?
I'm not going to lie. In the absence of information I was depressed, sad and scared for my little boy. Don't take that the wrong way. I already love my little boy with all my heart, no matter how he is born. Like every other parent in the world, I simply want for Jonathan to have the very best chance at what we consider a "normal" life.
The doctor made several appointments for us. A high-risk pregnancy doctor, another more detailed fetal echo-cardiogram, a genetic counselor.
For the next several days, Google was my friend. I looked up pictures of other children with club feet. I read stories of parents experience through treatment. I read statistics. I learned of something called the "Ponseti Method." I read about the potential surgeries and duration of treatment we would expect.
Around this same time we received word that Jonathan's second trimester screening results showed he is at very low risk for an associated syndrome. I'm starting to feel encouraged now. I'm feeling like it's time to find out as much as we can and be prepared. Time to attack this problem head-on as soon as we can!
Because of the abnormality, they wanted to check his heart to make sure it was healthy.
We had a more detailed ultrasound done almost a week later by a Stanford-affiliated high-risk center near the Monterey Bay. They told us everything looked good to them, but that just to be safe, we should still talk to a genetic counselor and go to Stanford for a detailed fetal echo-cardiogram. We walked next door to the genetic counselor and had a nice talk with her. Honestly, she was nice, but I think it was a waste of time. They ask you questions about your family history (My sister and I coincidentally had less severe issues with our legs and/or feet corrected when we were very young.) They ask you if you smoke....etc. I get the feeling that their real purpose in life is to collect statistics. They asked us to do an amniocentesis to check for the likelihood of something else like Down Syndrome being present. We could not say NO fast enough. Having an amnio increases your risk of having a premature birth and that's the last thing we want! Besides, we will love our child no matter how he is born, the extra tests seem a needless risk.
Off to Stanford weeks later.
A fetal echo-cardiogram is a long study. Each one takes about 1.5 hours. Unless you're "in the business" or are adept at reading tea leaves, most of what you see is a blobby-blurry-jumbled mess! You sit there for that long waiting for them to say something...anything. This first study showed nothing wrong with Jonathan's heart, thank goodness. They asked us to come back in another month so they could capture more clear pictures of the last 5% of the study.
A month later the second study was finished. Good news! Jonathan's heart looks GREAT!
We walk next door at Stanford for our first appointment with the orthopedic surgeon who will be treating Jonathan. Sitting in the waiting room itself was a learning experience for us. We saw lots of healthy-looking babies smiling and playing, all while having casts on their feet and legs. Some had a funny looking bar between their legs, forcing their feet to be angled out.
Meeting the Doctor.
Bi-lateral, means Jonathan has the condition in both feet. The doctors at Stanford are great. They really took the time to answer our questions and concerns. They explained that club foot is one of the most common and treatable deformities. One in every thousand children are born with this. They told us that people like Kristy Yamaguchi, Troy Aikman, Mia Hamm all had club feet!
 |
| A case of bilateral club foot, courtesy of the Wikipedia Commons library. |
Planned Treatment.
So this is the plan! Within only a day or two of Jonathan being born, we have his first appointment up at Stanford. Apparently they cannot tell the severity of his case until he is born. The plan is to use "serial manipulations" and casting once a week for several months. They basically force his little feet into a corrected position, cast them in place, and then repeat for months. After this he may have to get a minor surgery that cuts the tendon in his heel. At some point soon in his treatment he will have to wear a bar between his legs for 23 hours a day, eventually tapering down to just at bedtime for a few years. They say the babies learn to crawl and walk just fine, they don't know anything different. It's Mary and I who will likely have more mental anguish than Jonathan.
You can view video of the "Ponseti Method" procedure HERE
Whew. I think we're all caught up now! Mary and I are anxious to meet our new son and to get started in helping the young man out as soon as we can in a few months. I'm looking forward to learning more about all of this. At this point we could not feel any more positive and encouraged for Jonathan. We are surrounded by great doctors, family and friends. We're ready for the constant 90-minute treks to Stanford. Keep your fingers crossed! See you soon...
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