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.