Okay you get the cast off..

They take the cast off in the office it is not painful it just is very loud and vibrates. Weston would laugh through the whole thing. Now to the A.F.O. (Sometimes they will fit the AFO during the frame removal surgery. so you don’t have to have a special fitting. If not, no biggy they will get it done.) You will want them to wear a good moisture wicking sock with the AFO and one that is long enough so the bare leg is not touching the plastic. The AFO makes the foot and leg sweat so it is easy to develop a rash, Clean the inside of the AFO with alcohol only, No soap! We also used Gold Bond Medicated Powder in the sock to help with the moisture and smell. The socks we used were the Russell Men’s Performance sock with Dri-power size 6-12 from Costco. Yes, we used the men’s size. We pull it all the way up the leg so that the heal hit’s the back of the calf, the sock needs to covers all the skin in the AFO so he doesn’t get the rash. No one can see the heal anyway, and they are comfortable for him to wear. We also used his soccer socks on occasion but I found they do not wick the moisture as well. Now they need a shoe to cover the AFO. I never had luck with this. My son has had at least six sets and we could never find a shoe to fit until now. There is a company called Hatchbacks Footwear, Inc. out of Bend these shoes are great but again a little pricey ($65 a pair) but well worth it. The only draw back is that you must wait for the A.F.O. You need the AFO first so you can measure it. You will need to measure the length of the foot and width of the ankle. We had to go up a size to get the width we needed. Weston does not walk on it yet so it does not seem to matter at this point. “More room to grow” my husband says…So when we got the A.F.O measured it and ordered it online that night. I had it by the next week. In the mean time, we used the walking cast cover on the AFO foot.

Okay so now to frame/pin care… continued... again...

Okay so I touched on how the foot and toes may be sensitive to the touch. I was told by someone that the tickle and pain receptors are the same so it may tickle at first when cleaning the toes but it may soon turn from a laugh to a scream. I found toward the end of our time in the frame his knees also started to bug him. It would get very tired “achey”. Another issue we had during his time in the frame was weight loss. My son has lost 12+ pounds. His legs have gotten so thin and skinny. We are not sure why he has lost so much weight. Maybe from inactivity? I know if it was me, I would gain 15+ pounds from inactivity but kids are different that way. We were told by his primary care physician not to be alarmed, he should gain it back quickly when he is back to “normal”.

This brings up another thing the doctor may have you do. He may talk about you placing a rolled up wash cloth under the toes to prevent curling. At first, I would do just that rollup the cloth and slide it under the toes. This was somewhat difficult and painful for Weston and I think I lost some of my hearing with the screams I would get. I found that if I had a thick rectangular bath cloth and folded both sides in, then in half it made a big enough prop to elevate the toes. I would pull this through the back of his foot up to the toes. While doing this Weston would hold up his pinky toe and I’d distract him with breathing (in n’out, in n’out this actually helped for a lot of stressful/painful things) this technique went a lot smoother, plus when he’d bathe I’d have the cloth already in place to wash the bottom of his foot (it too becomes super sensitive and the skin peels).

Now the leg gets kind of dry and scaly except the pin sites. They can get kind of of red and oozy looking. If in doubt, call the doctor. I remember the doctor telling me that some seepage is normal as long as it is not greenish and puss like. Weston’s feet always got swollen towards the end and would ooze a bit more. He would call this “goozey”. He would always ask me “Mom is it goozey? It looks pretty goozey. We need to clean this!” (I would think we? You mean me… you will understand later what I mean.) Oh and for the cast changes it helps to bring a pair of shorts so they don’t have to sit in there undies while they remove and recast.

Okay so now to frame/pin care… continued....

Also instead of wrapping each site with gauze, I found that if I used cosmetic sponge rounds it was much easier. I found these at Target in the cosmetic section. They come 12 to a pack for under $2.00. I used 1-1 ½ packs at first, started using less as time went on. I kept them doubled and cut a slit 2/3rds through so they can slide over the pin and they fit snuggly against the frame this helps the skin from tearing at the site. Also, if your child is a picker like mine, it keeps their fingers off the pin sites. Keeping the frame wrapped in Ace bandages also deters them a little. Fingers on leg = infection. This is our experience. Now for the wrapping. I used the 4-6 inch Ace bandage. I could use one and get almost the whole foot covered except for the toes and footplate, which we never covered. Weston was a little fussy about his toes; the first frame had a pin that went through the tip of his big toe to the middle of the foot. The second frame had no pins but the tendons under the toes got some work. Yuck, I know… In addition, the doctor might provide you with a cover it looks something like a garbage can when on but it works well, especially in cold and rainy weather.

Okay so now to frame/pin care…

Follow the doctor’s instructions. Please. We went by the doctors instructions but modified them a little to fit our needs. I found that I did not need as much gauze as the instructions said. However, every person and frame is different. In addition, pin care is so much easier once they are willing or can take a shower. Do not forget the antibacterial bath soap. We bought Target’s brand and then we bought a couple exfoliating gloves. You will find the gloves near the women’s cosmetic section. I washed these gloves after each use since I was worried about infection. When it comes to cleaning, the pins remember to use one sterile swab per each pin site. Do not double dip in to the sterile water. I used a Dixie cup and filled it with the water and put all 16-19 cotton swabs in it to let them soak up and get soft then I took each one out as I cleaned. Make sure you pick an area and spread out from there, you can get kind of lost in the world of pins. You may also find that after bathing you may not need to wipe each site down again with a cotton swab. Only the ones that look “goozey”. You can use your hair dryer to help dry the frame off after bathing. Please watch your young child with the dryer. Weston would get a little excited like it was a cool gun. Five-year-old boys, little brothers, and a hot blow dryer… enough said… ;)

The Frame:

This thing is big and bulky at first, but overtime you and your child will get accustomed to it. Now with my son his frame started about 3-4 inches from the bottom of his knee and went down through his foot. His frame had a walking foot on it but he has never really walked with the frame on.

Now each frame is different, is customized to each leg, and foots needs. The first frame Weston had was approximately 8” across 17 pin sites and 2 screw sites with a 10“ long walking foot.. The second frame was approximately 7” across with a 9” long walking foot had 14 pin sites and 2 screw sites. Both had/ six struts, each color coded and numbered, and three of what I like to call halo’s (rings) with one foot plate (FYI some people refer to these frames as halo’s.) If you need more pictures and info on the frame, you can try finding information on the internet but I did not find anything that was very useful, especially pertaining to Weston’s situation.

Now to pants:

Forget it… No more blue jeans… Unless you are the best tailor ever. For the first frame, I bought about five pairs of sweats and altered them to fit the frame. [Again, please see the How To section.] It is time consuming and if you do not have a sewing machine buy em… I did a lot of looking and for little kids it is very hard to find tear-away pants like the basketball players wear (button all the way from waist to ankle). I finally found them through a company called Online Sports: They carry something called a Youth Breakaway Nylon Pant made by Holloway Sportswear. These pants have become a lifesaver and are around $35 a pair. A little pricey but by far the easy way to go. Your child will thank you for it. The only thing is it takes a while to get them. It seems as if everything is on constant back order. Therefore, as soon as you know you are going to have the surgery order them that night. Oh and if the season is right you may find that basketball short might fit over the frame they tend to be wider legged. With the long leg cast we were able to go back to blue jeans except for some pairs that were the “skinny “ jean type, but most fit easily and were comfortable for him to wear.

Clothing:

First things first underpants:
What? Are you serious? Yes, this is a very important part of everyday life. Okay so most will not fit over the frame without completely stretching them out .With boys, their unmentionables tend not to be secured so you get flashed a lot. .Even at the age of five you don‘t want to see it! I found that Hanes makes a boxer with an elastic top and loose cloth legs. This fits around the frame well and is easy to get on and off but the flashing occurs constantly. I also found that I could alter regular cotton boxers easily. [Please see the How To section at the end for details.] This takes a little work but no flashing occurs.J My son liked these best, especially for weekend lounging. Now later on in treatment with the long leg cast they should be able to go back to wearing their “normal” undies.

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!