She's got some fancy new shoes

Madi's cast is officially off! YEAH!!!! She is now sporting a very cool pair of new shoes. I'm going to make little flowers and bows to clip on them and have already ordered a few pairs of cute knee-high socks from the children's place. I mean, hey, she's still got to be stylish, right!?!?!? We are, unfortunately, having some issues with these, so she actually may be getting a different pair. I noticed she was getting pressure sores on her left foot that weren't letting up after 30 minutes. She also had some swelling and warmness, which is not normal and was only on her left foot. I started using the "pringle chips" to alleviate it but it's not working. Her feet are also not staying planted in her shoes as they should. I constantly readjust, and they constantly pop out. It is an upward battle for sure. I showed her physical therapist (who, by the way, we LOVE) today and she is also concerned. We have an appointment set up to go back in and see Dr. Segal so hopefully he can help us figure out what is going on. Let me tell you, though, this girl is something else! She doesn't let anything get in her way. She's already figured out how to start crawling around again. What an amazing little gal we've been blessed with!

Hard work can be fun

After winning our court case against the state, we had to figure out how to incorporate additional hours in to our therapy sessions. The only way to do that for occupational therapy was to do two consecutive hours, which is a lot for Madi to do at once. We decided that the best way to break it up would be with some fun play as well as some eating time. Danette, her OT, suggested that we do more swinging time. Though it looks like fun, and it is, it also very beneficial. Both Madi and Conner loved it! The swing hangs in the door-frame and you can use different swings and attachments. I would love to find one that we can use more often. Madi is getting too big for her vibrating chair and cannot be in any type of exasaucer, making it hard to put her down when I get ready in the morning. I am trying to find a used door-frame system so that I can put Madi in a toddler swing while I get ready so that she is both close and happy. If anyone knows how to make something like this http://www.especialneeds.com/support-bar-rainy-day-indoor-playground.html and can help, I'd be forever grateful! In the meantime, we'll keep swinging!

And that's that!

Her heel cord is officially clipped. I was praying it wouldn't need to be done, but it was just the way it had to be. I researched other methods for lengthening the tendon and talked to other parents who had children with clubbed feet but was unable to find another suitable method. The parents that did try other methods were not only few and far between but also felt the methods they tried were ineffective. All the kids ended up needing the lengthening anyway. Today she got her final cast, though, which is awesome! She will have this one for three weeks and will then go in to special shoes that will keep her feet positioned shoulder-width apart and at the correct degree of angle. I am so thankful we are able to utilize this method and avoid surgery and am praying that her foot does not slip back in to the clubbed position again. Unfortunately, this happens about 70% of the time with children that have a clubbed foot AND spina bifida because the foots tendency to re-club combined with the lack of weight bearing and, of course, gravity, make the reoccurrence rate pretty high. Our next step will be to utilize a stander to get her in to standing position and start bearing weight in her legs. And after that, well, who knows. It's been quite a journey, and it's not even close to being over, but I will say that I love it! I'm not sure why God chose all of us for our roles but I trust in His plan and know He has amazing things planned for our little gal.

Round Two...

Today was round two of casting. Madi's foot responded favorably to the first cast, which is awesome!! She had a sore behind her knee where her leg accumulated moisture in the heat so they casted her leg a little straighter to try and keep this from happening. I have been trying to get her in to Dr. Segal's office, instead of going through CRS, so that she can get the weekly casting that is part of Ponsetti's method instead of getting bi-monthly casting. I just feel that this is the best way to help Madi. I spent almost an entire day on the phone with his office and CRS last week and not only didn't hear what I wanted to hear, but also got conflicting answers. I talked to Dr. Segal today and he told me who I need to talk to in his office in order to get her in. I'm excited to be able to go directly to him, even though it means out-of-pocket costs in order to do so. We feel it's important for Madi to see the best doctors and for her to have the best care possible. Dr. Segal is the best there is for the ponsetti method, CRS just isn't the best place for getting everything done in a timely manner. We waited another 3 hours today, but Mickey and Goofy were there handing out balloons and helping us pass the time. Conner was so thrilled to see mickey in person!

Madi has her first casting

Today Madi got her first cast to correct her clubbed foot. Dr. Segal uses the ponsetti method of casting which involves slightly moving the foot a little at a time and releasing the heel cord to correct the foot. We waited 3 hours at CRS (Children's Rehabilitative Services) before we even got in to see the doctor but both Madi and Conner did great! Conner was very sweet and kept kissing "sissy" to make sure she was ok. He was a bit sad that he didn't get a cast himself, but I wouldn't be surprised if our crazy little man ended up with some kind of cast at some point in his life. Madi is doing great with her new cast and is finally taking a nap after a long day! She did take a short nap all wrapped up on mom, so thankfully she remained pretty happy throughout the whole thing. We go back in two weeks to get a new cast put on. We are very thankful to have the casting option available to us so that another surgery is not required!

To Our Little Madilynn Joy

When at first we heard the news

We were a bit blown away

It was very hard to hear

You may not walk one day

We cried for you

But not from a lack of love

We mourned what we thought you could not have

Though we knew you were a gift from above

We were thankful God blessed us with you

And knew it would all be okay

We stopped our crying and smiled

Thanking God for blessing us this way

You are a very special girl

There is no doubt in our minds

You will accomplish great things

Who you are just shines

You are beautiful and smart

Compassionate, determined, and sweet

Even though you are still so small

We know you can accomplish any feat

We are honored to be your parents

And love you more than you know

We promise to give you the best in life

We look forward to watching you grow

Thank you for blessing us so abundantly

By just simply being who you are

You are absolutely perfect to us

Our bright and shining star

We love you!

I am just so thankful

When I went to visit Erik, Michelle, and baby Dylan in the hospital, it reminded me once again how blessed we are. Madi, of course, has special needs that she will spend her entire life fighting through and overcoming. That's just the point, though, she has her entire life! We were so blessed to get to #1: carry our baby full term, #2: bring our baby home from the hospital, and #3: know that her challenges are not (usually) life threatening. There have been some scary moments but God has been with us every step of the way showing us that He is there with us and always will be. We have a beautiful little girl who is capable of lighting up an entire room with just one little smile. She is amazing and we get to hold her in our arms every single day. If that isn't an amazing blessing, I don't know what is!