Kissed by an angel

Today Madi surprised me with something wonderful.... a big, opened mouth, slobbery smooch! It was wonderful! I had said "Madi, Kiss" and made a kissing noise, but was not really expecting anything in return. Instead I got a big kiss! Madi leaned forward with her mouth wide open and planted a big one on me. I wanted to see if she really knew what she was doing or if it was just coincidence so I did it again later in the day and, sure enough, I got the same response from her. My little girl is just growing up way too fast! Too bad she's not allowed to date and practice her new skills until she's at least 30.

Ok, ok, just a few more pictures

My first train ride

My mommy loves being close to me

Sitting pretty

Mmmmm.... corn

A little dose of cuteness to brighten your day

We start them out young

My beautiful eyes

Yes, I'm always this happy

I have an awesome brother who is a good friend

Riding in style

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!