youngmommy718's blog

We have to take Romie back to the hospital, somethings wrong!

youngmommy718 — Wed, 26 Sep 2007 23:17:28 +0000

Romie is 3 years old now and he had the super hip surgery on his right side on june27th at shriners in Philadelphia. They inserted a metal rod to hold the hip bone in place while it heals. The doctor told me that they would take the hardware piece out when the hip bone is stable. He wore the spica cast all summer til august 25th then they took it off and he went back 2 his usual 2 inch shoe lift. I sent Romie back to school on September 4th, by september 17th he was complaining of pain on the right side, he didnt want to wear his shoe anymore or put any weight on that side at all. I wasnt sure what was wrong so I kept him home and made an appointment with Shriners they told us to come in on the 28th, Til then just give him pain medication (aceteminophen). When he woke up Monday morning crying of excruciating pain I immediately took him 2 the emergency room here in Brooklyn. They took xrays and found that the metal hardware had split and broke inside of my baby. I almost fainted. They put another cast on his leg and told me to follow up w his doctor so we will be at shriners door friday morning to see what will be done now. Im hoping they will take it out because the emergency rooms' childrens orthopedist said the hip has healed very well. So we'll see, I will keep you guys posted on the outcome.

Romie and his first surgery/(Super hip) Im so scared!

youngmommy718 — Tue, 26 Jun 2007 15:53:53 +0000

My 3 and a half year old son Romie is going in at 7am (June 27th) in the morning for his super hip surgery at Shriners with Dr McCarthy in Philadelphia and I am so so so nervous and worried about everything. I would really like someone to share their experience of what the after effects are like and give us the heads up on what to be prepared for. Please help.

I know that its going to be 6 to 8 weeks in the spica cast which basically makes our summer plans almost non existent. I dont think he will be able to sit up because the cast will have his body at an 85 degree level so he will need propping up all the time. I also realize that my son is fully potty trained but now he will have to go back to diapers for the time being and I dont think he will like that very much because he loves to run to the bathroom, so that may be an issue. Im also worried about the heat and him being put in such a large cast because it is like 90 degrees here in new york and I dont want him to be super hot. Im wondering if I will hav to keep him in the bed for these 2 months, Im so worried because I am almost 8 months pregnant so I am kind of out of commission myself. He loves to play on the desktop computer and laptop but I dont know how this will work when he has no way of sitting up so Im worried about how we will keep him entertained. I also know he may be in pain and Im afraid that we may not be able to console him, I wonder if they will give us a prescription for something to help him cope with it a little better. Basically my head is spinning with all the what ifs, how tos, and everything else, Im so scared.

Update on Romie and I

youngmommy718 — Wed, 28 Mar 2007 08:17:37 +0000

Havent updated in a while on my son Romie, he is doing great, He's three and a half now and is the sunshine of my life. His right femur is about 3 and a half inches shorter than his left which is a larger difference than before, but with his condition this is to be expected. Romie is in pre school now and has been learning so much, his teachers tell me that he is a joy to have in the class, he loves to dance and sing and finger paint with his friends and his favorite teacher Ms Emily. He wears a 3 inch shoe lift on his sneakers and shoes which helps him to walk a little more stable, this Thursday hes getting fitted for his second prosthetic leg that hopefully will help him get around even better. His first surgery which is going to be on his hip is scheduled to take place at Shriners in PA this summer, Im so nervous and scared but by the grace of God I know he will be ok.

I am also excited to say that I am about 4 months pregnant with baby number 2. Im kinda nervous because I am going to get a sonogram done in the morning and its 4am and Ive been up all night having flashbacks of when I got my first sonogram with Romie and the nurse told me that I needed a 4D sonogram immediately. I pray that everything will go well and I hope that the nurse tells me that Romie is going to have a little sister, but whatever it is, I just want it to be healthy and know that its being born to a mom, dad, and big brother that will love him/her regardless. I will definitely let you guys know how it goes as soon as I get home from the appointment. Please keep me in your prayers as you are all in mine.

Little Romie's journey so far...

youngmommy718 — Tue, 02 May 2006 20:33:39 +0000

I have a two year old son, named Jerome that was diagnosed with PFFD in his right leg when he was still growing inside of me. I was 21 years old at the time and I was just excited to start a family.

When my husband and I first found out about his condition we went to the library and did some research. When I saw some of the pictures of legs of children who have this condition I wanted to cry because most of the children in the pictures were crying or looked sad it seemed so hard to deal with. I found out there werent many options for treatment and definitely no magic miracle that could just make it all better.

Even though I had seen pictures of other children with PFFD I didnt know what to expect and on top of labor pains i was very nervous. So when Jerome was born on November 23rd 2003 my whole family was there to support me.

When the doctors gave him to me he looked into my eyes and I looked into his bright brown eyes and I fell in love with him. Immediately all of my fears were gone. Those pictures I saw really had me scared, maybe because they were old pictures and were in black and white. The doctors told me his femur was fractured in the middle and they would have to take him to the NICU. After five days they put him in a pavlick harness and sent him home with us. His fracture fully healed after three months and we began to focus on the future.

Romie started walking at 18 months so the doctor added a one inch shoe lift on his sneaker. The lift was too heavy on him and he was more comfortable walking without it so we didnt force him to wear it. We saw numerous orthopoedists in our area (new york), none of which had ever treated a child with his condition. One of the orthopoedists had a $6000 prosthesis made when Romie had just turned 2.

The prosthesis was horrible. It was stiff, heavy, tight, and uncomfortable. Needless to say he never wore that either. He got around on his own two feet with a cute little limp because on his left leg he was walking on his whole foot and on the right side he only used his toes because thats where his right foot touched the ground. I didnt mind him walking this way but I wasnt sure if this way of walking could potentially damage his hip, spine or anything else.

In February we decided to go to shriners hospital in philadelphia for some advice because they have dealt with other children with his condition and probably knew what they were talking about better than the New York doctors. They offered us the same 3 options of treatment as I had read about in the library. They took the time to actually explain every little detail of these conditions so we could get a better understanding which was really heplpful. they answered all of our questions and were very helpful. They even made our son a new shoe lift made of a light cork/rubber material that my baby actually loved. He didnt even need to get adjusted to it he started running and jumping right away.

The new shoe lift actually has a 2 inch lift because the difference is greater than when he was 1 years old. Anyways we have to go back to Shriners this month we will be talking about which option of treatment we are going to go with. Every case is different and you have to go with what will work best for you. Whichever option is chosen has its positive and negative sides and there is no easy way through this. My son is very very active, smart, adaptable, handsome, happy and outgoing. He has a 2 and a 1/2 inch difference in femur lengths right now, a perfectly good foot, and some strong bones.

Even though a leg lengthening seems like it would be the best option for him, I am actually more interested in the partial foot amputation with the prosthesis because I dont want him to go through too much pain with the lengthening. Although this option sounds so scary and difficult I think it is the best option for my son because I want him to stay active and not be confined because of a weak fragile bone from lengthening. Also with all of the technology available I believe that he will be able to get a very functional prosthesis(They have great ones out there, you just have to do research).

I have also found that the most functional PFFD patients are the ones that have chosen this option, ie: www.iamsarah.org etc. My husband is kind of against this option so nothing is going to be done until we get more info, talk to more doctors and agree on a plan of treatment. Until then we are going to stick with the lift. Our journey with PFFD has just begun. Romie has a bright future ahead of him and I'm going to teach him that no matter what happens he will get through it and be stronger than the day before.