Today we went to Dr. Segal, Madi's orthopedic surgeon, and he said she is looking great! Her left leg is a little tighter than her right, like it always is, so we need to keep working on standing and walking, but other than that, her feet and hips are good for walking :). It's been so hard to get her to want to stand up and try to walk since her wheelchair is just faster, but we are working on it. I don't want to push her, but at the same time, I know how important weight bearing is, so I try my best to make it fun! Dr. Segal is a nice guy and he always sits down and chats with me for a bit after he is done checking out Madi. Today he and I had a nice discussion about stem cells and the such. He is going to China next year and is going to give me the real scoop then so we can decide if it is something we want to persue for Madi. I was a bit dissapointed because I was really hoping Madi could one day get the nerve re-routing surgery to help her urinate, but turns out, there is some major stuff going on and lets just say that the research one man was publishing may not be valid. There are some studies going on in the US, though, so I am still holding on to hope that they will figure out something that will help Madi void without being cathed.
Oh, and just to reiterate that you should always ask "why", I have a story from today. When I walked in with Madi (well, I should say, when Conner and I walked in and when Madi zoomed in impressing everyone within sight), the nurse told me Madi needed a hip x-ray and asked me if that was ok. I told her "I guess so", but after thinking about it, asked why she needed one, since Dr. Segal had once told me that he did not really care if her hips were fully in or not (he explained why and it made sense). She got all huffy with me and said she asked me if it was ok and I had said yes. I told her that when she had asked me, I hadn't had time to think about it, and that all I want to know is why she needs one before we get one. Though we don't pay for her x-rays, someone does, and it seemed like a waste of money. Not to mention that there is of course some radiation with x-rays and even if it is small, I don't want it for no reason. She told me I could talk to Dr. Segal about it and then have it done. Turns out Dr. Segal didn't want it done, so we would have upset Madi and wasted everyone's time and money for no reason. I'm glad I asked why!
Tomorrow we are off to Disneyland! We're bringing Madi's little pink hot rod (wheelchair) and I know she'll have a blast crusing around. Conner is so excited and was totally off the wall today. Wish us luck with the car trip, and we'll update with pictures when we are home!! WOO HOOOO!
How exciting! Have a great time.
ReplyDeleteI was just reflecting yesterday about I think God gives kids with extra-special needs to fantastic parents. You are a great inspiration and a perfect mother for Madi!
Hi! I have read your blog on the SB site and noticed you mentioning Dr. Segal and Hangar. Do you go to Children's Mercy? We are in that area and have one year old twins, one with SB. Here is our blog: ourtwinsblog.blogspot.com My husband is the one who writes it. :-) I would love to touch base with you sometime if you are in the area. hlcastellano@gmail.com
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