Our New HKFOs Are Here!

Today was appointment 1 of 2 this week, and thankfully, after tomorrow's appointment to get Madi's wheelchair adjusted, we are done for THREE months (other than therapy)!  WOOT!  Today we went and picked up Madi's new HKFOs.  Ron Whiteside, at Hanger, worked really hard on them and they look amazing! He finished in record time for her too!  Madi was being a bit of a stinker and not wanting her picture taken, so I'll have to get some better photos tomorrow.  Poor Ron was trying so hard to get her to smile, but she just wasn't having it.  We're so excited to have her HKFOs (aka "up-ups") back!

Madi's New HKFOs (AKA Up-Ups)

Madi got her new HKFOs today and is SO SO excited!  Ron at Hanger re-did her design.  This one will take more strength, but will give her more mobility at the same time.  She can kick her legs so much better in them!  We took her old HKFOs and are took off the H (hip) part so that we try using them as her night-time knee immobilizers.... that's one way to reuse and recycle, right?!?!? :).  I'll get a video of Madi cruisin in her new up ups tomorrow for everyone to see them in action! 

Being great waiters!  The little girl on the right is Kaylynn, whom I watch 3 days a week.  Conner is so good with her and she is such a little sweetie!



YEAH!  Time to try them on!  (pardon the chocolate from her granola bar on her clothes ;))

Left... old; Right... new

My kiddos sure do love Ron!



A Few "Up Ups" and AFO Adjustments

This evening Madi had an appointment with Ron at Hanger.  Have I said how much Madi LOVES Ron (and, of course, I do too because he always takes amazing care of my little gal)?  She was not happy about getting in the car, but when I told her we were going to see Ron to get her up ups fixed, oh boy did her face light up. Then she yelled, "YEAH, RON!  LETS GO SEE HIM!" as loud as she could.  This is really a big blessing because normally a mention of the doctor gets the opposite reaction. 

(coloring on the paper examination table cover to keep Madi happy while her up ups got fixed)

Ron made Madi's up ups a little wider in the booty.  He also made them a little taller and moved the shin pads up so they would help keep her knees from popping out.  He added a pad to her AFOs so her heel does not pop out at night when she's wearing it.  Next he gave us a knee immobilizer so we can keep Madi's left leg (her tight leg that was casted to treat her clubbed foot and also had a heel cord lengthening) stretched out.  This will keep her leg straight at night, since she usually curls it in, and help keep her from getting tight in that leg.

Before we left, Madi had to show off her walking skills and, of course, it wasn't good enough that I hold her hands.  She insisted that Ron helped her.

Ron is walking in the local spina bifida association walk-n-roll, so we will get to see him again soon.  Madi will be excited!

Just to prove that Madi is a typical life-loving two year old (only possibly a little more mischievous), you can see what Madi did today.  I walked in to the family room and found that Madi had gotten in to my makeup bag. 

Yup, she spilled my charcoal grey powdered eye shadow and my blush.  It's hard to get mad, though, when you look at her and she is grinning from ear to ear looking like this...

I see makeup application lessons in our (very distant) future!  If you haven't already, please join Team Madi for the upcoming walk-n-roll.  Here's a link to join.  We hope to see you there! 

Just what I needed to hear today...

Today Madi went to see Ron at Hanger to pick up her a pretty new AFO for her left foot.  This is her third AFO since she was born.  While we were there I had Ron check out her HKFOs because Tami and I wanted to make sure she was making good contact with her left foot when she walks as her legs are a tad different in length.  Madi took the opportunity to show off her walking skills while I held her hands.  Man, she is really moving!  I used to have to stand behind her and kind of nudge her hips to help her move her feet.  Not any more!  She just does it all on her own, as long as she uses her walker or I help balance her by holding her hands.  Ron had another person from Hanger in with him and they both got a kick out of watching her cruise and listening to her giggle and laugh with Conner.  Madi loves her big brother so much, and he can make her crack up like no one else can!  Ron told me that she is really doing amazing and that he cannot believe how well she is moving about.  We even un-hitched her hip lock and she was still doing great.  She used to just kind of tip forward, but she is getting her balance in place and even that was not slowing her down.  I am so proud of the strong and determined little girl she is.  Sometimes it helps to hear how great she is doing from someone else, even though I already know it.  I can't look at her without thinking of how amazing and perfect she is!

Have I Mentioned How Much We LOVE Ron at Hanger??? Running, Here We Come!

Today I called Hanger, where Ron works, to check up on Madi's HKFO's (yup, I'm THAT mom!). I was told they were not ready yet, and additionally Ron was going out of town and was already booked up Friday, so even if they were ready, the earliest we could get them would be September 10th. I was incredibly disappointed that we were going to have to wait that long to get them. Madi has been trying so hard to make her legs work and stand up. She has been getting very frustrated with herself, and it's heatbreaking to watch. She does not want other little girls her size around her walking and gets mad at them, because of course, she wants so badly to be doing the same. At about 4, though, I got an amazing call. Ron's assistant, Mita, was calling to tell us that not only were they done, but that Ron wants us in at 10:30 THIS Friday to come and get them! WOW! Yes, the appointment they did not have because they were booked, we got! I have to say, God is really looking out for us! He just makes things happen (with a little help from Ron, who is amazing) and I could not be more excited! I told Madi about it and she is very excited too. I will update with pictures as soon as I have them. I need to clear out the video camera too so I can film her with them on. In the meantime, here is a cute short video of Madi dancing today. She really loves music and it is adorable to watch her dance. It was taken with my cell phone, so the quality is terrible, but you get the idea....

We're just 2-3 weeks away!

Madi's fitting for her HKFO's went great!  First they casted her legs individually, then her torso.  They take the casting, pour molding in them to re-create her legs, then form the material around that to make the HKFO's.  Madi was a great sport and enjoyed all the extra attention.  She showed off how she knew to point to each body part, her eyebrows, her eyelashes, etc... and threw a few signs in there too.  Ron said it is normally about a 3 week wait, but he is hoping to have them done sooner.  Have I mentioned how much we love Ron?  We were not having good experiences at Hanger until Tami told us about Ron and we started seeing him.  He builds all of her equipment himself, by hand, and does an amazing job!  Here are a few pictures of Madi during the casting. 

Up, Up, and Away!

Today was a very big day for us!  Madi finally got her stander, after a very long wait.  She had it custom made by Ron at Hanger, who is amazing!  He doesn't measure and ship things off to be made like most people, but instead he actually custom forms and makes each item himself.  He has worked with tons of children with spina bifida and was the best man for the job.  It took a long time due to some miscommuncations and the fact that they do not normally make standers/parapodiums for kids, so all the parts had to be custom ordered and it was hand created.  It was well worth the wait, though!  Madi loves Ron and did quite well during her long appointment.  We were intially told the stander would cost $2,800.  Later they told us that because they were contracted with our insurance company, it would be $1,800.  When we showed up today, though, it was just under $1,400.  All of this, of course, is applied to our deductible through insurance, which is $2,500.  Though the $1,400 was much more than we origionally planned on spending, we would have had to eventually pay that much in the form of our deductible anyway.  It is worth every penny to see Madi standing up and smiling!  Tami, Madi's Physical Therapist, will start working with Madi on how to "walk" with the stander.  Basically she will teach her how to sway her hips and scoot around.  There are no wheels on the bottom, but it is smooth and will slide along an even surface.  I cannot believe how big she looks when she is standing up!  She is no longer my little baby, but a little girl (Well, she'll always be my baby, no matter what.  I always tell Conner that when he is 50, he will still be my baby and there is just nothing he can do about that :))!  We had a busy day today and are looking forward to spending more time in the stander tomorrow.  Watch out world, here comes Madi!

Standing, here we come!!

Today was an appointment I am VERY excited about! Madi wants to be standing and upright so badly, but she just cannot make her little body do it. Because she does not have any movement below the hips, she is unable to support herself. Today we went in to get fitted for a parapodium, which is a device that will help her hold her body upright so that she can stand. She will also be able to move around with it. She won't be given a walker yet, since that would limit her ability to twist her body from side to side, but will be given a walking-stick type of device instead. Tami, her physical therapist, will work with me and teach me how to help her get around in it. Ron, from Hanger, is hand-making her parapodium for her. Don't ask me what it's going to cost because I don't even want to know ;). Tami and Ron talked so that he would know just how to design it. Unfortunately, it is not something Hanger normally makes, so he will have to order some supplies and we will not have the stander until right around Christmas time. I am so excited for her to finally get to be at her peer's level, though, and it is well worth the wait!!!. Watch out world, here comes Madi!!!

P.S. In case you are wondering about the photos... the first one is the mold they made of Madi's torso. I couldn't take a picture while they made it because I was helping to hold her and keep her happy. The second photo is of her getting measurements done.

Round 3...

A few days before Disneyland we got Madi's third, and hopefully final, shoe for her clubbed foot. This is a custom AFO made by Hanger. The man who made it, Ron, is highly recommended and has a lot of experience with children that have spina bifida. He is a very gentle and kind man. He did an awesome job and we are praying this one works! Conner picked out a cute little heart print for her and she looks adorable in it, of course. We still get a million questions and comments as people don't understand why she needs it, but such is life. I'm so thankful to finally have her in something that doesn't bruise and hurt her little foot!