Our second opinion - Shriner's

Within twenty minutes of getting to our Shriner's appointment we saw another PFFD patient. I was so excited, this was only the second time we've seen a fellow PFFD kid in person! It's nice not to feel so alone sometimes. Then we saw the nurse, had x-rays, and had pictures taken. Oscar laughed the whole time the lady was taking his pictures. He laughed ever time the camera flashed. By the end she was laughing too. She said this never happens, normally the kids cry when she takes pictures. Then we saw a PT and she said Oscar was doing great with his milestones. At then end the whole crew came in and he told me Oscar has a 14cm leg length discrepancy and will likely have a large discrepancy at adulthood. They recommended having surgery correct the position of his foot so he can have his foot facing out instead of down in a prosthetics. He said maybe rotationplasty would be an option but he'd have to see how the knee develops. They weren't against lengthening but said he probably would never get his legs the same length. He also gave the option of removing the foot but didn't recommend that we do that. Then he brought on his prosthetics guy and he asked about Oscar's hip and the doctor said Oscar has a pretty good hip. After our local doctor told is he has no hip, this was news to me! The staff was pretty friendly and kept wanting to give Oscar a blanket but i already have plenty. I like this opinion better than our local opinion but I still need to get Dr. Paley's opinion. He is the expert in PFFD and I feel I need to explore all options before I make this very important decision.

Oscar's first swim

Oscar went swimming for the first time today. I think he enjoyed watching his brother and sister swim more than actually being in the pool. The pool chair is more his thing.

Alex and Oscar

As some of you know, my so Alex is autistic and ever since Alex knew we were having Oscar his speech has made vast improvement. Oscar is a great conversation starter for Alex, he loves talking about his baby brother! Oscar is the only one he willingly hugs or shows care for. I love seeing their relationship and how much Oscar has affected Alex. Alex has been very proactive selling bracelets and coming up with ideas for Oscars blog. In fact, this one was his idea. He wanted a blog entry about him and Oscar. I hope Alex continues to improve as Oscar grows up.
We leave for our Shriner's appointment today so please keep us in your thoughts. Our appointment is 9am Friday aka "doomsday", I didn't realize it would be on that day when they made the appointment. This will be the first time we travel with Oscar so I hope it goes well. I post Saturday about all about our Shriner trip.

Bracelets

We are selling these bracelets to raise money for our trip to Florida to see Dr. Paley in July. He is one of the top doctors that specialize in Oscar's condition. The bracelets are orange and white swirled and say "Differences Inspire" and have Oscar's blog on the back. They are the colors of a clown fish because of Nemo and his little "lucky fin". Just mail $5 dollars to:
DI Bracelet
c/o Kari Passoni
804 S Willow Ave
Broken Arrow, OK 74012

Please include your return address where you want your bracelet mailed to.

If you are local and want one, I normally have them with me at all times so just ask me the next time you see me.

All donations will go towards Oscar's medical care. Thanks!

Oscar Laughing

The reason I named Oscar's blog littlelegbigsmile was because of his big smile but his laugh is just as contagious!

Our first medical opinion

We visisted a local Tulsa doctor for our first opinion. He basically wants to do nothing and keep him wearing a prosthesis. While I'm not totally against idea, I am against keeping his foot pointed down into a socket, which is what he suggested. This means he would be walking around with his little foot pointed down like a ballerina all day. From my research and talking with people with this condition, they say it is very uncomfortable and unstable. I know it's more aesthetically pleasing but I'm not concerned with aesthetics, I want comfort and function above looks. The more I talk with our local doctor the more convinced I am that he is not the right doctor for Oscar. His case is far too complex for this doctor to fix so he is looking for the easy way out. Our next opinion will be from the St. Louis Shriner's later this month.

The Beginning

My husband and I discovered we were pregnant in November 2011. After a difficult first trimester, I was at my 18 week ultrasound. The tech was quiet throughout the ultrasound. She then told me she needed to get someone else, who I now know was the high risk OB doctor. He looked at my ultrasound and told me that my son's right leg was short and that I needed to do an amino right away. I hesitantly agreed. I had earlier declined it due to my problems during the beginning of my pregancy, but this recent finding changed my mind. They told me something could be wrong with his chromosomes. It took two weeks to get the results (The WORST two weeks of my life!) I went in and they told me his chromosomes were perfect and that just his leg was affected. We had several ultrasounds to confirm that everything else was fine and happily, it was. I had my c-section one day before my birthday so I got to spend my birthday holding my handsome son. While we were still in the hospital, Oscar and I got to meet a beautiful little girl who also has PFFD. She and her mother just happened to be visiting Tulsa the same day as Oscar's birthday. It was a great day. The hospital treated us just like any other birth, exactly how I wanted them to treat us. Now I get to enjoy my son and take it one day at a time.