Emily Guerra's blog

Julian is almost four...

Emily Guerra — Mon, 04 Jan 2010 15:24:14 +0000

and is a busy boy. Nothing seems to deter him until his mommy tells him no.

We saw Dr. Michael Schmitz last in December. We are still in the “wait and see” mode. Dr. Schmitz had decided that he doesn’t want to do anything while Julian is still able to move about and function without any issues. He tells us that he wishes more people could see Julian and the way that he is because he seems to be a unique case. We are told that if you just look at his x-rays that you would assume that he isn’t walking and wouldn’t be able to walk considering that he really doesn’t have ankles or knees, not like we have anyways. But then you look out into the hallway and there he is running up and down it trying to chase his little sister, who doesn’t have any issues. We were told that Julian would be a good candidate for leg lengthening in his future. What would happen to Julian is that they would lengthen one leg and stop the growth on the other to be able to match them to be equal lengths. But what happens below his knees is still up in the air. He won’t be able to wear a shoe lift for the rest of his life because of the difference in the lengths below his knees. A shoe lift wouldn’t be stable.
We have found however that when Julian walks long distances with or without his shoes and braces that his back starts to hurt. We constantly have his shoes on until his feet get sore with his braces. I am so grateful for our physical therapist, Colleen O’Berry, and our orthotic guy, Ed Barber. They are awesome.

I just wanted to give an update. I know that we are coming soon to decisions that we as his parents will have to make in his best interest. That is going to be a hard time because we don’t know what his best interests would be as a young man. We have to think of now and in the future. How will our decision affect him now and in the future. Such a responsibility.

So we will see what happens. We don’t go back until August of 2010 to see Dr. Schmitz again.

Julian is turning 3!!

Emily Guerra — Thu, 12 Feb 2009 13:39:02 +0000

His birthday is in March and he is growing into such a little boy!!! Active as anything and is constantly telling me to "Check it out!" Whatever "it" is...

I worry that as he grows the kids that are his age will start to pick on him. I know that there isn't really anything I can do about especially if I am not there. We were in church a few Sunday's ago and he was in his Nursery class and was bitten on the side of his face by a kid in his class. I saw the kid later after I had taken care of Julian and wiped his tears and gave him a hug. The kid I am sure is a normal height for his age, but just showed me how short Julian is compared to the rest of his class. He is as tall as the one year olds in church.

He has been fitted with new AFO's for the past few years but I think we are getting to the stage where we will have to start making decisions. I just don't know when yet. We will be seeing Dr. Schmitz here at the Atlanta Children's Hospital on the 11th of March. We have been in a wait and see situation ever since he was born.

We will see how it goes.
Emily

How we found out about PFFD...

Emily Guerra — Mon, 23 Apr 2007 21:57:05 +0000

My name is Emily Guerra. I live in the Atlanta, GA area with my husband, Reinaldo and son Julian. Julian is now 13 months and is growing faster than a weed and finally walking around some. He will be walking on his own soon. He is our only child for the moment and we are thrilled that he is here with us.

We had gone to my OB for a regular ultrasound here in Town Lake in October 2005. My entire pregnancy was going well, as well as can be anyways when you are throwing up all the time in the beginning. We had the ultrasound and the Dr. of the day came in and told us that everything looked good except for his legs. They looked a bit shorter than what they should be. They were going to send us to a perinatologist by the hospital that I had Julian in Marietta. We weren't to worried at that point, But after we had plenty of doctor's give me an ultrasound they couldn't tell us to much until Julian was born. That way they could see what the problem was instead of trying to read an ultrasound and guess, but they had a pretty good idea it as PFFD. They didn't know however that he would have Fibula Hemmomila.

We were also sent to see Raymond Morrissey. He was a leading doctor in the field of PFFD, from what I understood. He has now retired and our orthepedic surgeon is Dr. Schmitz. Across the hall is the Orthotics and Prosthetics office where Collen Coulter O'Berry works. She is Julian's physical Therapist and we love her as much as the rest of our doctor's.

By the time Julian was born in March of 2006 we thought that we were ready for anything. Except for my c-section because Julian refused to turn. He was breech. What luck... My nurses didn't know that we knew about his legs so when they told us that his legs were a little short we confirmed that we knew that. Then they said "oh, good. So you know then that he has three toes on his right foot?" I was surprised at that. Then they showed us. His little foot was so narrow and long, but hand only three toes. It was so cute. The prints of his feet they gave us at the hospital is fabulous.

And now He is growing and exploring. He is a strong toddler and is pretty much ready for anything. And an attitude to go with it if he doesn't get his own way.

If anyone wants to contact us you are certainly welcome to. I am glad that there is a blog out here for us to contact each other on.....

Emily Guerra