Turning:

Turning what is turning? Well if you are, a newbie the doctor generally waits until your post op visit to have you start this. This is how the frame works. He gives you a sheet that has numbers and colors. Your strut turning playbook. Always bring this sheet with you to the appointments. Now if your child is off pain medication like mine was he might start up again. I liked to turn Weston’s struts at night. I would give him medication after dinner then bathe and clean the pin sites, turn, and wrap. He was tired by now. The medication kept Weston comfortable through the night. Of course, do not over medicate. But keep your child comfortable… If in doubt, ask the doctor. Now Weston was able to feel the “turning”. If it was a little too strong I’d take it a little slower and maybe skip a day, but for the most part, I tried to stay on track as much as possible. . The sooner the foot is better the sooner this thing gets off! Remind your child of this when it is time to turn especially if they are dreading the daily turning. Now sometimes you will change out the struts at the office visits this is relatively painless, except if the new strut is not on the correct #’s when replacing the old strut. Just double check the 3’s with them before hand…for the strut change they just unscrew the old strut then pop the new strut in screw it down and the change is done. .

Dr. Visits:

The office visits are usually on Thursdays. Remember your appointment time is a guide for when to be there, you may wait for 15 minutes to see him or couple hours. Be patient and respectful. Bring a book and a toy for your child… You are getting one of the best doctors to work on your child. He is in high demand… Not just anyone is trained in this specialty. You do not have many doctors to choose from. Remember a good doctor means long wait… he is a bit eccentric but genuinely cares about your child’s wellbeing. Be open and prepared for anything…. It is all for the best. Oh, and his staff is GREAT!

The Hospital:

For the frame placement, you will probable stay overnight 3-4 days. At the hospital, they do not have anything but a diaper that can go over the frame (no pants or undies will fit) so if your child is not a bed wetter they are not going to want to wear the diaper except for maybe the 1st night. You just cannot get any ol’ Pull-up. If your child where’s a Pull-Up at night for the occasional accident they are no longer going to be able to do this. It just wont fit, cutting and taping is a crazy idea, it doesn’t work well. I found that you could order child diapers (youth briefs) online from a company called Woodbury Products. They come in bulk so if you don’t need 96 of them then go to the store and buy Depends Fitted Maximum Protection in s-m these are the only ones that will adjust to fit a little one but beware the Depends brief goes all the way up past the belly button so you’ll need to fold em’ over. I found them at Wal-Mart.
A little more advice about the hospital… Keep your child comfortable… They cannot always express the pain they are feeling. The muscle spasms are the hardest to control. You do not know when they are coming. Weston was on Tylenol with Codeine and Valium. At first, they may use Morphine. For the occasional pain this helps, but only lasts for about 45 minutes. Remember I am not a doctor I am a mother. So if you have questions talk to a doctor or nurse. The Tylenol is for pain the Valium is for muscle spasms. Also, I think the valium keeps them from getting a little too emotional. Weston got very angry and then sad. The frame is shocking at first. Again, keep them comfortable… They are just little. Keep yourself strong. They depend on you. If you are upset, they know it… Now I kept Weston home from school the day of the surgery through the following week. The next Monday we were both ready for him to go back to school. I only had to give him valium for the first week back at school. He was able to function on this better than the Tylenol. The teacher did not notice much of a difference. However, your child maybe different.
Oh an afterthought. The hospital has a care coordinator or something of the sort. I believe that can help you organize some of these things. I did not know this assistance was available to us until the surgeries were done. Therefore, I am not familiar with the program or process that they have. However, help is always nice.

Let it begin:

First of all hooray for you and your child this is an emotional and physical roller coaster that your family will be on for months ahead. Everyday you must remind yourself and your child it will all be worth it in the end. For us we look forward to being able to go to the zoo and let Weston walk the whole way. Weston gets very excited when we tell him he will be able to run fast like his friends. I also look forward to him not having to crawl on his hands and knees after any family excursion because his feet hurt to bad to walk… Now during this process if not already your child may ask Why me? Or why did god give me clubfeet? I hate this question. I dread the emotion that comes along with it even worse. It really pulls at my heartstrings and I get teary eyed. I just tell Weston that god gave him such a big heart that he could not finish his feet but that he made doctors smart so they could finish them for him. Some kids are sensitive and need to have answers like Weston and some are so laid back and just go with the flow. Never less, I am sure there will be some questioning and some emotion. There is really no way to prepare you for it.

Oh, before we get too far every company or item of importance that I mention will be listed at the end. So no need to take your own notes. Ha-ha. J Enough said lets get to the knitty gritty.

A Little Background:

My husband and I are the parents of three wonderful yet challenging boys. Weston is now five (one month from 6) Garrett 3 and Greyson now just one. Weston is our only child born with bilateral clubfeet. His case has been classified as moderate to severe. He is a patient of two great doctors in the “Legacy System”. He has been receiving treatment since he was 13 days old. .before coming to this clinic he has had many procedures including serial castings (Ponseti method), Dennis Brown Bar, Achilles tendon and ligament work, he has had his tibias cut, rotated and pined, and he has had several pairs of the ankle foot orthotics (AFO’s) and now he the Taylor Spatial Frame placement with some more Achilles tendon and ligament work. Weston had his right leg put in the frame October 13,2009 and removed in December 18, 2009. Now from what I understand my sons frame time was rather short and he was on the younger side for the frame placement. He is a big 5 years old; most think he is seven or eight. He was then placed in a cast full leg bent knee from Christmas too late February. We then went to short leg cast for two more weeks then to the AFO which he wears 24/7 with maybe 1-2 hour break daily. (Letting it air out is what we call it) We placed the left leg frame on January 18, 2010 and had it removed March 30 2010. Now, with this frame removal, he had more tendons work done and he had a temporary pin placed through the big toe with a short leg plaster cast. Now we had hardly any lag time between frames. We wanted to get the procedures & corrections done before Weston started the first grade. SO at one point we had a cast on one leg and frame on the other. For some children and parents this may be too much at once. It was a little trying at times but overall it wasn’t too bad. We all made it through in one piece.

So this is a little bit of information I put together to help inform you on the Ilizarov / Taylor Spatial Frame. Okay so it may be more than a little

Now I am not a writer or a grammar queen and I am not the best at articulating my thought and experiences but I think this is information that all parents may find helpful. My goal in writing this is exactly that, to be helpful. I am by no means a doctor or any kind of specialist, just a parent with a child whose has now been in two frames. I have found no published or written information on this topic that is geared towards children. So Hence, the saying “See a need, Fill a need “. Yeah many of you heard this saying too- from the children’s movie Robots- funny huh! Okay onward!

Today is day One...

I never in my life thought I would do anything like this. However, in my search for information and the lack there of my friend and a PA at the doctors office urged me to get this information out there. So here I am. Please feel free to comment on any of the information that I post.. I am just one person who is trying to do her part and help others so please if you have any helpful information to share it would be much appreciated. Thank you...