Keep on Trying

"Markell brace"

Finally snoozing.... look at that hair do!

That's my advice to all parents of clubfoot babies. Wow- it's been hard. Really hard. It sucks and it's no fun. But, persistence pays off.

So, last I reported was that we were going back to Shriner's to see if we could get a different brace. We met with the doctor on Monday and she ordered the "Markell" foot brace which allows him to move his feet independently. They are pioneer-style looking with laced up shoes. I was happy to finally get something that maybe Hudson would tolerate. After two days he did much better but his feet would keep slipping out of the shoes. This was quite irritating because I was told on several occasions that this would probably happen and that they could insert some foam pads to help with that.

Back to Shriner's for the 4th visit (in one week) on Wednesday to get foam inserts. Crossing our fingers as this was our final option, we headed home. After a few days, his feet were still slipping out, but not as much as before. This was rather frustrating because we were basically out of options and I was not about to make the 40 minute drive to Shriner's again.

When I met with the doctor she said, "Don't let this ruin your life." The worst case scenario would be that he not wear any braces and see how his feet look in 6-8 months. However, there is always a chance that we would have to go back to casting again.

Keeping that in mind, I decided I was going to put my big girl undies on and go back to the first set of braces (where he can't move his feet at all). I was going to have him wear the shoes all day and put the bar on every other hour. Kenny also turned the shoes in to 30 degrees (normally set at 50 degrees) and then we would re-adjust as Hudson gets more comfortable with the braces. Yesterday was the first day with my little experiment. It was a good day. He was more tolerable of the braces with the bar and wore them for 5 hours off and on. My goal is 10-12 hours a night. It doesn't matter if he wears the braces at night or day as long as he is wearing them for 10-12 hours. I just find it easier to get sleep at night when he doesn't wear them. We will see how the rest of today goes. He has actually been able to wear them awake and not have a screaming fit. I must say that Hudson is quite a trooper with this whole ordeal.

Sucks

Raw emotions, peeps. That is the only word I could think of to describe this last week. Ugh. I thought the casts were bad, the braces were/are really bad. On Monday, we got the braces and the first night, Hudson did great. He wore them for 8 hours straight. Things could only get better from the first night, right? Wrong. SO wrong. The second night he only wore them for 5 hours with hysterical screaming all night long. It was awful. I called Shriner's and explained what was going on. I made a trip out there (which is not an easy task considering that I have to find sitters for my two other kids and make the 45 minute drive each way) and met with Prosthetics and Orthotics again on Wednesday. They made sure the shoes fit right and gave me some tips to try. Thinking that night would be better, he kept the braces on for maybe 6 hours that night with more screaming thru the night. We figured out that he can tolerate the shoes fine but once we put the bar on, he won't have it. He will usually sleep for about 20 minutes and then wake up screaming once he realizes the bar is on. Then it takes another 15 or so minutes to calm him down and back to sleep.

What's next? When I met with Prosthetics and Orthotics, they mentioned they was another type of bar that isn't used much anymore but could be another option if Hudson didn't tolerate the current bar we are using. This other type of bar allows a little bit of mobility where he can move each foot independently. I called Shriner's again on Friday to see if this was an option and was told that I need authorization from the doctor since this bar is not used regularly anymore. Awesome.... back to Shriner's we go tomorrow at 8:00 in the morning to get this figured out. We have resorted to just letting Hudson wear the shoes and bar until he can no longer tolerate it and we are too tired to fight it. Meaning he is getting only just a few hours with the bar the last few nights. I'm desperate for a fix and hopefully tomorrow we can have some answers.

A hard week

Can we get these darn things off my legs?

Perfect little feet! Amazing how much his feet have changed just from two weeks of casts.

This should make for some fun times sleeping and nursing.

What I like to refer to as his "wakeboard"

All tuckered out and hopefully he will stay like this for the night.

Last week was hard. Really hard, for everyone. Hudson had such a hard time getting used to having two casts. He would go through periods of doing okay and then would scream for hours (usually at night). He seemed so uncomfortable most of the time. Today was a welcome relief when we made our weekly visit to Shriner's to get those darn casts off his legs. After the casts were taken off, he got a nice full bath and then we made our way over to the Prosthetics and Orthotics department where he was fitted for his braces. I like to refer to the braces as his little "wakeboard." That's exactly what they look like. He will wear the braces for the next 6-8 months, for 10-12 hours each night.

The doctor warned me that it could take 3-4 days for him to get used to the braces. We put them on for the first time tonight. He screamed the entire time while putting them on and then fell fast asleep. So far, they don't seem to be bothering him too much. He won't be able to wear jammies with feet since they are too thick and would defeat the purposes of the braces. We will have to figure out what he can wear when winter time comes. For now, he wears a onesie and a sleep sack to bed.

We will follow-up at Shriner's in 3 months for an adjustment. I'm grateful to be done with weekly visits for now.

#2 visit and some good news

This last Monday, Hudson had his second cast put on his right foot. I couldn't believe the difference a week makes with just one cast. His right foot already looks totally normal. There was an adjustment to the treatment plan: he would wear only one more cast on the right foot and one cast only on the left foot. After that he would wear braces only at night. Such great news since we were expecting a much longer treatment plan. The braces will be worn until he outgrows the first pair which is usually 6-8 months. I feel like I can actually do this!

Hudson has been such a little trooper having double casts. Of course the first two days were difficult and he cried a lot but now he is doing great. I am hoping the braces won't be too much of a pain at night and he will be able to sleep somewhat comfortably. We go back next week for the fitting of the braces and then should follow up only every 3 months.

Sawing the cast off- we got to keep this cast as a keepsake.

Already the right foot looks so much better and normal too.

Getting a nice full bath since he can only take sponge baths with a cast. He was not a happy camper.

All sacked out on the table getting ready for casting. It was really busy that morning and we had a long wait before the casting was done.

Right leg done first. He screamed the whole time doing both legs. It was pure torture for him and mama.

Getting ready to start the casting on the left foot. This is the protective sleeve put on first before the actual cast.

All done. Looks awful but he is actually doing quite well with it.

How is HE doing?

It's been three full days since Hudson got his first cast. I'll be honest, the first two days sucked. He was very uncomfortable and cried a lot. The first night was spent with lots of cuddling and nursing to keep him somewhat happy. The second night was a bit better (although I found myself crying too...) and last night was pretty much back to normal (except my two year old decided that he wanted to party and stay up ALL night).

This has been tough for me and I'm glad Hudson won't remember this. It probably doesn't help with the post-partum hormones all over the place either. But I do know that any mother watching their baby have to go through pain is heart-wrenching. I'm thankful to know that this treatment plan is expected to be much shorter than the average.

The first of many visits....

Shriner's Hospital- Salt Lake City
How extremely blessed we are to have this facility so close to our home.

On the casting exam table

The casting beginning all the way down from the foot

to his groin area.

All tuckered out. The blanket was given us from Shriner's.

Yesterday was a long, hard, exhausting and emotional day for me. Hudson and I made the first of many visits to Shriner's Hospital to evaluate his feet. I was hoping that all we would need to do would be stretching exercises but I also knew there was a possibility he made need casting as well.

I dropped Ashtyn and Brice off at Grandma's house and made the 40 minute drive to Shriner's Hospital. We met with the pediatric orthopedic doctor, Dr. Hennessey. All of the nurses and doctors there are super friendly and fantastic. It was determined that he has a mild case of right clubbed foot and possible positional club foot on the left side. The treatment plan will probably be about 1 year long which is considerably shorter than the 3 year process for regular club foot patients. There is a 6-8 week casting phase and because Hudson's right foot is considered a mild case, he would start with phase 3. Dr. Hennessey believes it should only be about 2-3 weeks before he completes the casting phase and will move right to bracing. He will wear the braces for approximately 2-3 months, 23 hours/day and then just naps/bedtime. The doctor thinks the left foot will straighten out normally on it's own or just require some stretching exercises. She will re-evaluate the left foot next week to determine if casting will need to be done.

After the initial evaluation, we moved to the casting room. It was about a 10-15 minute process where his right leg/foot is turned at a certain angle and then casted all the way up to his hip. The cast is made of "plaster of paris". This was the hardest part for me since Hudson was extremely upset during the whole process. I didn't want to have a bawl fest in front of the doctors so I waited until I left. I was told that he could be a little fussy because of the pain from the turning of the foot and to give him Tylenol if needed. Sheesh, the poor little guy cried a ton last night and was so miserable. Kenny and I took turns holding him all night so he would be somewhat comfortable. He seems a little happier today now that he is getting used to this big ol' cast on his tiny little leg. We follow-up next week for re-casting of the right leg/foot and possible left leg/foot as well.

This was definitely not the news I wanted to hear but at least the course of treatment will be a lot shorter than a regular club foot patient. I'm purely in survival mode at the moment as I try to figure all of this out, but once we get adjusted to this new transition, things should hopefully be a bit smoother.

Clubbed foot.... or not?

That was the big question for us right after Hudson was born. And yes, the feet were turned in, but not as drastic as we thought they would be. We visited with the pediatrician the next morning, and much to our surprise, he did not think that Hudson had clubbed feet. He thought that his feet would turn out normally with some stretching exercises. Wow, a huge burden had just been lifted off my shoulders.

Fast forward to his two week check-up. Shriner's Hospital had called that morning prior to the 2 week check-up to see what the status was on the referral. I told them I was meeting with the pediatrician that afternoon to discuss what we wanted to do next and would call back if we decided to proceed with the evaluation. The doctor is still not overly concerned about his feet but was fine with going forward with an evaluation at Shriners. The pediatrician's initial diagnosis is metatarsus adductus- where the forefoot is twisted inwards relative to the hindfoot (or heel). This is usually caused from being "packed" in the womb in that position.

What's next? We have our first appt at Shriner's this coming Monday, 9/19, in the newborn- club foot clinic. Time is of essence since the sooner the babies can receive treatment, the better the outcome. Anxious... yes, but at peace knowing he will be receiving the best care.

Introducing...

Hudson Blaze Favero born on 8/31/11 @ 1:24 p.m.

7 lbs 10 oz and 21 inches long

The countdown is on...

Only 10 more days left.... the end is finally coming and I can't wait. This last week I've really been feeling the pains of being so close to the end. I started having quite a bit of swelling in my left leg and foot and the doctor was concerned about another blood clot. I already have two superficial clots in the left leg so she sent me for another emergency ultrasound this last Friday (3rd ultrasound in the last two months). No changes which is good but just some annoying swelling in the feet.

The history behind this blog

I've always been fascinated with blogs about special needs children and their families' lives. So when we found out at the 20 week ultrasound that our baby boy was going to have at least one clubbed foot and maybe two, I wanted to research all I could about it. Although there was quite a bit of information on the internet about clubbed feet, I was surprised that I could find little information about families dealing directly with it. Research is one thing, but personal experience is another. The many questions that ran and still run through my mind: What is the treatment like? Are there special clothes that he needs? Will he need surgery? How long is the treatment process and will he be affected later in life? For that reason, I decided I wanted to document his journey as we go through the ups and downs of correcting his clubbed foot or feet, and others can learn from our experience who are going through the same thing.

Clubbed feet can be genetically related. My uncle, was born with a clubbed foot over 50 years ago. The treatment was rather extensive at first, but he has not suffered any complications later in life. Because our baby does not show any other abnormalities, it is most likely an isolated birth defect (meaning not related to any other disorders) and genetically related.

As a mother, I am anxious, excited and nervous about what is to come as the next couple of weeks come to a close. What gives me peace is knowing that this condition is totally treatable- the perinatologist told us that if he could pick a birth defect, it would be this one because it is very treatable- and my little boy will live a normal life.