O Happy Day!!

Skyla has had her last PT session with Shelly! Sky has full range with knees straight and bent and is right were Shelly and Dr. Skinner want her. She still has a bit of a habit of walking on her toes but they both say she will out grow that. Luckily we have a great team and awesome insurance so Shelly said anytime I feel Sky needs a bit of a push I can just call her up and we can get some PT in.

I'm so excited I cant believe we are done. I was re-reading the post I put on here and remember the scary feeling and thought that's she might need surgery. Then the fear of the unknown and leg-braces. Now look at her a Happy girly sporting her much earned Twinkle toe shoes.
Sky I love you sweetie and am so proud of all the hard work you have done.

GOOD NEWS!!!!!

Skyla got to see Shelly for some much need PT. Shelly also measured Sky's dorsiflexion, and found that with her knee bent Sky has FULL RANGE!!! Yep that's right she is doing that good. With her knees straight she still has about 5-8 degrees to go but is getting there at a amazing rate.

Shelly also said Sky no longer needs her leg braces!!! She now has these plastic shoe insoles that slip in to her shoes. It makes it really hard for her to go on her toes and if she breaks them then we know she was walking on her toes again.

Walking on her toes is still a big habit we are trying to break. If she is in tie shoes she walks flat but on , bare feet or flip flops she pops up on her toes. Luckily she isn't doing it to often that its causing problems.

Not out of the woods yet but at least the end is finally in site. I knew it would take about 6 months and now that we are heading in to our 7th month its nice to get some good news. Sky gets to go back to PT with Shelly in 2 weeks and we are just really going to work her out. She is one step closer to those Twinkle Toes shoes :)

I know "about time"

Sorry I know it has been a long time, but no news is good news right?

Miss Skyla is doing wonderfully. She still walks on her toes but its only when she is in socks, flip flops or bare foot. If she has tie shoes on we are good. She has lots of rang and its fun to see her try things she could do before. One was the walking heel toe in her tap dance. This was something 6 months ago she could not do and now is a pro and so excited she was able to do it by her big recital because "it made the dance look so good" according to her hehehe.

One fun dilemma we got to deal with is our insurance. Children's Hospital is the ONLY children's hospital in our area. They have any and all child specialist and a grate emergency room. The big head honchos at our insurance company decided that they didn't want to renew a contract with Children's hospital and dropped them as a provider. When I got the letter I was so mad. Sky had a apt with her Ortho Doc Dr. Skinner and her Physical therapy Shelly, but our insurance was no longer excepted and we would have to pay out of pocket. I called Shelly and told her what was going on and she had a fix for our problem.

Shelly's hubby manages a ortho office and Shelly is also an employee over there as well. So Sky's ortho doc filled out a prescription for more PT for sky but over at this new office that is a provider with our insurance!!! Shelly will give Dr. Skinner the updates on Sky and we will just take it from there. Since sky is doing so well and out growing her leg braces she only needs to be seen once a month for a few months.

Luckily with enough phone calls by me and others flipping out about our insurance dropping Children's, our insurance just sent out a letter saying they finally made a deal and Children is now a provider again. We are going to continue to go to this other place just because its a bit closer but I'm so glad we have Children's again!

Like I said before everyone at Children is AMAZING. Not only have they made this whole thing easy to deal with they have truly bent over backwards to help us and to make sure Sky is getting all the attention and care she needs. We go back for our monthly visit on the 28th with Shelly. I'll post some updated pic then.

O I almost forgot...... Sky got her Twinkle Toe shoes!!! They are a size to big but are sitting on her dresser in the box for encouragement. Hopefully by the time we are done she will be in them. There not the ones she originally wanted but are way cute and blink. Ill take some pic of them too. :)

Update

Sorry its been so long since I gave a update on Skyla, its just been really un-eventful. Sky is still wearing her leg braces and her range of motion has improved like crazy. There is so much she can do that she couldn't do before. There just little things but little things we all take for granted, and I never even really though about till i found out she couldn't do them. We are still fighting to break the habit of the toe walking. She has the range to walk flat, but is still used to walking on her toes and when the braces are not on we have to remind her constantly. Its a bit frustrating!

She is also not going to Physical therapy any more. Well she has not been in about a month. She goes on the 13th just to see how she is, then we see the Ortho Doc a month from that in Sept. He will then check her out and let us know how long she needs to wear the braces and if we need to continue physical therapy once a month. So progress is happening it just been a bit slow but it is moving forward.

Sky's new style

From my last post I'm sure everyone could tell how upset I was that we had to wait for Sky's leg braces even longer. Well when I was on the phone with Tony he could tell as well and apparently made a call right after he got off the phone with me. Tony called the company that was re-making the braces and told them how upset I was, and how we have all ready waited 2 month for these things. Well "ask and ye shall receive" they made her braces in 2 days shipped them over night and Tony called me Monday afternoon to tell me he had them in his hands!!! We set up a appointment to see Tony the next day and I'm so happy we finally have them and Sky is wearing them.

They are a perfect fit! She is not being irritated anywhere by them and is adjusting really well to them. The first day she got them she had them on for 2 hours before she started complaining that her legs hurt. Today only 2 days later she had them on for 3 1/2 hours we took them off and gave her legs a 30min rest and then we put them back on and that was about a hour ago.

Here are some pics of what they look like.....


This is from the side you can see how it goes a little past her toes and almost up to her knee.

She got to pick the colors and the cute heart ribbon that goes across the middle strap.

They slide right in to her shoes and she runs and climbs like normal all ready in them.

This was a pic she asked me to take. We have to get her some new shoes that are big enough to fit her braces. This is her first pair, she picked them out and thinks they are so cool. We had to go one whole shoe size bigger then what she normally wears, which isn't bad at least they don't look huge on her. She cant wait till next week when we go shopping for a few more pairs (she LOVES shoe shopping)

So have I mentioned she has adjusted really well to them all ready? She was watching a movie and it was really nice to see her in her normal spot, in her movie watching pose hehe. Seeing her do so well in them has really made all my fears I had about them go away. She is a trooper, and a really good girl about all of it. She knows how important this all is and how everything we have her do or wear is to help her walk better. Its nice when your kids just do what you ask, and don't fight you on it.

2 MORE weeks, you have got to be kidding me!

So I got a call today, a call Sky and I have been waiting for...... Her leg braces were finally here (were being the key word in that statement).

We got told last Fri that the braces should be in Tue or Wed of this week. They came right on time, Sweet now we can get Sky fitted in them and adjusted and let the real work begin to get my toe walker on flat feet! Yeah like I said before I'm not that lucky.

The place that made the braces put a joint on that Tony asked for, it has a stopper that would make it imposable for Sky to go up on her toes. Well guess what... they put the joint on back words and didn't even put in the stopper. So needless to say they didn't work the way we wanted and are now waiting for the new braces to be sent out.

Lucky the place keeps the mold till they know we are satisfied so it was a easy fix, we just now have to wait another 2 weeks to get them. Its so frustrating these mold where done in April its been almost 2 whole months and we still have no braces. Physical therapy is great and working wonders but it would be so much more worth it if we had those braces. Sky has to wear them for about 6 months and its things like this that are just prolonging the time.

I am very grateful though for Tony and catching the problem and reacting to it so fast. Its very reassuring that every one involved really wants to make sure we have the right tools for Skyla to help her walk normal as soon as possible. We have a amazing team!

O and Sky was also a little sad she doesn't have them yet, she is very excited about getting them. Who wants to make bets on how fast that excitement will fly out the door once they are on her legs? hehehehe :)

More PT

So I just wanted to update you all a little bit. Sky has now had 3 PT appointment's with Shelly and is doing an amazing job. She remembers to do her stretches everyday, and works really hard to try and do the things Shelly challenges her too.

When Sky went for her evaluation in May they measured her feet to see how far away from 90' she was. Her left foot was at a -5 and now is at a -3, her Right was at a -10 and is now at a -5 (we want her at a +10 at the least, by the end of all this). She still has a long way to go but has made a huge improvement all ready. She can walk flat for a wile now (as long as she is thinking about it) and she is even getting better at standing flat and bending her knees. She cant go down very far but at least she can do it a bit now. She is learning a whole new range of movement and its so rewarding to see her do it. I never really knew how simple movement I take for grated, where so physically hard for her to do and to now see her trying and getting better it so rewarding.

Sky emotionally is doing great. She gets so proud of herself when she does something new, and at 4 years old she understands pretty well why learning to walk the right way is so important. She doesn't fight me with stretches and most of the time will do them through out the day on her own. Her leg braces should be here next Tue or Wed so that will be a whole new thing once we get those but she is excited for them too because she knows they will help more.

I'm so proud of her and all the hard work she is doing, I'm so grateful for all the wonderful people we get to work with that are just as passionate about her walking on flat feet and having full range of motion as we are.

Sky + Shelly + Physical therapy = Tons of fun!

Ever since Sky's evaluation visit last month with her physical therapist, she has been looking forward to going back and seeing and playing with Shelly again. She really liked Shelly, and Shelly did a amazing job of getting sky's attention and winning her over.

We finally got to go back on Thur June 3rd, and Sky got a good 1 hour work out with Shelly.

This was her excited waiting face....



When Shelly came out Sky ran and gave her a huge hug and told her how excited she was to play with her. Shelly then asked how we have been doing at home with the stretches she gave us to do, and if I have been making sure to stretch Sky when she is warmed up. I told her how we have been stretching everyday since our last visit and I always make sure its after she has been running around playing.

Shelly told us she was pleased then told Sky "I have a great Idea on how to warm up your legs before we stretch" Sky got excited and hand and hand they walked to a room filled with different bikes. Shelly then strapped a helmet on Sky and gave her a cool bike that she got to ride around the hospital on. Sky thought it was so cool she got to ride a bike, and the whole time Shelly walked with her and the 2 just talked away.


After Sky's 5 laps around the 2nd floor, Shelly had Sky show her one of the stretches we have been doing at home....
I'm Happy to report the stretches have ALL READY been working and Sky is showing improvement. A month ago when Sky did this stretch her arch would flatten to the ground, it is now staring to arch up like it should, which means her whole foot can and is hitting the ground more and her whole foot, not just the balls of her feet, are supporting her body weight like they should. She still has a good way to go before walking flat will be comfortable and a normal way of walking but we are on the right track and she is doing great.

After some fun stretching games Shelly then worked on Sky getting her heals down more as she walked. Sky had fun on the balance beam walking forward and backwards. Yep that narrow beam Sky is on, she was walking backwards on it. Walking backwards made her have to put her heals down to keep her balance, who knew.
After the beam Sky got strapped in to this cool looking contraption (I had pics but they got deleted, stupid computer) Its a machine they use for kids who cant stand on their own, it helps to develop the muscles for standing. it looks like a chair with wheel chair feet holders. You place your feet on the platforms and strap in your feet. You then adjust the height of the platforms your feet are at 90', and your knees are bent and in line with your hips. Then this big padded cushion comes in and goes right in front of your knees. Once your all strapped in the seat then gets tilted till you are standing. The seat is big and helps to support your back, and the pad at your knees supports you from your thigh to your calf to support your knees and to stop you from bending your knees. Sky stood with both feet flat and at 90' for 10 whole minutes, that's the longest she has ever stood flat in her walking life. To pass the time Shelly and her played a few games of memory. After the 10 min Sky started to complain her legs hurt and she wanted out. We happily complied cause our time was just about up anyways.

The bad news is her leg braces are going to basically do the same thing the machine did, and she will have to keep those on for longer then 10 min (bring on the whining I can handle it!). Speaking of her leg braces, they were finally ordered on the 19th of may (after changing the order a few times) and should be here any-day (it takes about 2 weeks). As soon as they come in we go down and see Tony, and he will fit and adjust them to Sky's legs if need.

It feels good to all ready see some changes just from doing a few stretches at home. It has made me even more excited about getting her leg braces on and continuing PT with Shelly. O and since Sky is doing so well Shelly said she more then likely wont have to sleep with them on (woohooo not a battle I wanted to fight). We are now going to PT 2x's a week right now its every Monday and Thur. Sky is all ready asking if Monday is here yet....Shelly I hope you know how much your loved all ready :)

I love Childrens Hospital

The staff at children's hospital is amazing. Skyla has loved everyone she has had to meet so far and they have all made her feel as comfortable as possible.

Yesterday Skyla had her first Physical therapy appointment. We met her cool Physical therapist Shelly, and Shelly was so fun skyla loved everything she did. This was more of a evaluation of what Sky is capable of doing, I guess there has been some dispute going on between the ortho Doc and Tony the guy who made the cast for Sky's leg braces. Shelly was telling me that Dr. Skinner (the ortho doc) wants to attack Sky really aggressively but what he wants her to do Tony (the cast guy) doesn't think she can physical do it, and it would do nothing but put her in pain if we took it so aggressively. Shelly was basically the tie breaker in this argument and agreed with Tony. Her is what is going on......

Skyla has no dorsiflextion in her right leg. This means she cant bring her toes toward her body any further then a 90' (and that's with help and force from Shelly) most people can stand with their legs straight, feet flat on the ground and bend their knees with out lifting their heals off the ground (to a point). Skyla cant do this she has to lift her heals up to bend her knees. Also since she she has walked on her toes for so long her center of gravity is WAY off. Shelly explained it like this. Try standing still on just your heals (lift your toes off the ground) you can do it but after a few seconds you have to start moving to stay up because you feel like your falling backwards, your muscles start to tier and all you want to do is put your feet flat because this doesn't feel normal and its a lot of work. That is how Skyla feels when we ask her to walk flat. Her center of gravity is so far off she feel as if she is going to fall, not to mention the muscles she has to use to walk flat are underdeveloped because she has never used them like she was supposed to.

The run down now is we have to re-train Skylas mind and body all at the same time. We have to teach her mind to know what is the right center of gravity and what is normal and to just break the habit. We also have to train her muscles, she has to start using the right muscles and start developing them so she can walk on flat feet. Luckily we have Shelly and she wants to take it slow and easy so her body will adjust smoothly and with little to no pain. She still has not gotten her braces it might me another month till she does, but when she does they are going to put lifts in them so she wont be completely flat right from the start. Each week at one of her physical therapy appointments they will shave a bit of the lift off and slowly bring her down to where she should be.

Its going to be a slow process but as long as we stick to it she will be out of them and walking normal in about 6 months (keep your fingers crossed for us). GOOD NEWS Shelly said she doesn't think Sky has any short heal cords and that she more then likely wont need surgery, she wasn't making any promises but said it looked pretty good we just have to wait and see as time goes by.

Physical therapy

Sky has her first big physical therapy section on May 14th, so we have about 2 week to wait. She will start going 2x's a week for 6 weeks, I hope this really helps. She will also get her leg braces on the 14th. They are a big tool for the therapist to use so the Ortho doc and the therapist think it would be good to wait till she comes in before we put them on her.

Besides that she is doing great.

Casting

Sky had the casting done today for her braces. It was fast and easy and Tony (who is the guy who will work with us and the Doc's till she is out of them) is so nice and made sky feel right at ease.


Here she is getting these big stockings put over her legs and picking out what colors and design she wants on her braces. (pink padding, red velcro and pastel hearts over the velcro so girly I love it)
Once the socks are on he socked the casting material in water and then wrapped it around her leg and foot

Then he had to push her foot all the way down so it would be at a 90' angel. It only took about 2 min for it to harden, then it was cut off (that's what the yellow thing is for, that's the protector so he wouldn't cut her)
She was a trooper and even when it started to hurt a bit she distracted herself by looking at all the color swatches again. It will take a week or 2 to get the braces back, and she finally has her first Physical therapy appointment (may 14th) so hopefully we will have the braces by then too and get started on our 6 month journey.

O by the way I got to see what the braces will look like. They will go pretty far up almost to her knee and all the way under her foot. They have hinges on the sides so her foot can go past a 90' angel but it has a stopper so she cant go on her toes. He said the bad thing about them is the plastic will click a little so he recommends she doesn't play hide and seek hehehe.

No molds just yet.

The place doing the braces is amazing. They are so nice and really want Skyla and Me happy. They checked her out today did some measuring, watched her walk, and showed her how they do the molds. She is so excited to have her legs put in play dough (that's what they told her it was hehe). She loves them and cant wait to go back.

They tried really hard to keep me happy too. They took all our info and said they are now going to call Skys orthopedic doc to see what exactly he wants for her and for how long. They are also getting a hold of our insurance and letting them know these are being deemed medically necessary (because she is weakening the muscles) and getting authorization for them so we dont have to pay a dime for them.

So we just wait now. They are supposed to call by next week to set up the apt for the molds. O and she might be able to get pink ones too (sky was very happy when she heard that)

Skyla's Blog

I created this blog so I could have a special place to record all the events that will take place as Sky goes through the process of learning to walk on flat feet. Hopefully someday when we are all done I can print this blog out and keep it in her baby book for her.

Sky is a toe walker!

Almost all kids walk on their toe's at one point or another, but grow out of it by the time they are 2 years of age. Skyla is almost 5. Also most kids who still walk on their toes after the age of 2 ether have Down syndrome, cerebral palsy, or are autistic. Sky has none of these. She is what they call a Idiopathic toe walker (no cause or reason for toe walking). We now know she does it because her heal cords are super tight (because she never walked flat), its a habit now, and she possibly has a short akeilies tendon and heal cords.

She went in for her kindergarten check up and I brought the toe walking up to her Doc again (this is something we have been watching since she was 2). The doc is now concerned because she should have out grown this and is now weakening her calf muscles. The doc sent us to a Pediatric orthopedic doc at the children's hospital. He was so nice and Sky loved him, which is good cause she is going to see allot of him hehehe.

He checked her all out and had her walk for about 20 minutes before he told me what he found with her. He then gave me our options, fist off we are going to try physical therapy with MAFO leg braces. Sky will go 2x's a week for 6 weeks for physical therapy and will have to wear her leg braces day and night for at least 6 weeks, after that she might just have to wear them during the day, but she will have them for about 6months.

Saying I'm not looking forward to this is a HUGE understatement. She is going to be stretched out in ways she has never been and all I can think of is the pain it will cause her. I know its for the best and has to be done but I cant help feeling bad. We are going to talk about what we can use to help the pain when we go for our first PT apt. The doc did suggest one thing we could try in a few weeks but me and Mick have turned it down for Sky's sake. Botox....... yep that's right botox shots in her legs. I looked it up on the Internet and NO WAY!! to many risk and she is to sensitive to things to even try it.

I have made a pretty cool goal prize for her though. Since she walks on her toes all her shoes curve up at the toe. Even her cute flat converse shoes curve up from her walking like that. It drives me crazy not to mention she wears out the toe and cracks the sole before the shoe is even old or worn. She loves shoes and has a pair in mind she really wants. Mick and I have told her no on these because they are a little pricey, but seeing the things she will have to go through I think we can splurge this one time.


Hence the name of the blog......Twinkle Toe shoes by skechers!

This is the pair she has picked out. Pretty cute huh?
I cant wait to buy these for her, because they are super cute, but most of all it will mean she is all done with the toe walking and in the clear.

Sky goes tomorrow (Thur) to have the molds of her legs done so they can make her braces. I'll make sure to post pics of that. I'm sure its going to be pretty interesting.