Kayla's Journey

We have an appointment

2010-05-14T15:24:00.003-04:00

Today I called Dr. Herzenbergs office and I got an appointment set up for Kayla. Her appointment is on July 1st. we will probably leave a day or two early. It is going to be a long trip but I am glad the appointment is finally set up.. Until next time. GOD bless.....

Physical Therapy Today

2010-05-13T22:28:00.005-04:00

Today my oldest daughter and I took Kayla to her physical therapy appointment and while we were there the therapist decided to measure Kayla's legs again because it seems that her leg length discrepancy was more noticable and when they measured they found that Her left leg is now 5cm's shorter then her right. It was 2cm's different when she was born. I was really upset when I found this out. I knew it was going to happen eventually but I didnt know it would be this soon. I thought it would happen slowly over a course of several months or even years but it happened way sooner then I was expecting. I just hope that it doesn't change much more before she starts to walk and has her surgery. I will keep everyone posted on the progress that she makes with Therapy and everything else. Thanks for Reading. GOD BLESS!!!!!!!!

Shriners

2010-05-13T22:16:00.002-04:00

Sorry it has taken me so long to update you all but we have had alot to go on here. We took Kayla to Shriner's children's hospital on April 29th and we were not happy at all with the visit. The Dr and all the other staff were very nice but the Dr immediately started telling us bad things about leg lengthening surgery and told us good things about Amputation. We were under the impression that she was trying to talk us out of leg lengthening and trying to talk us into amputation. We told her that amputation was not an option for us. As long as there is another option out there for her we will not choose amputation for her. We decided that since the Dr seemed to be leaning more toward amputation that we would get a second opinion and that is what we are in the process of doing. We found a Dr by the name of Dr Herzenberg that specializes in our daughters condition and we have decided to take her to see him. He is in Baltimore Maryland which is about 9 hours away from us but we are willing to drive the 9 hours to get her the help that she needs. He can do an ankle reconstruction and he can also do the leg lengthening. I have emailed back and forth with him and he is very nice. I have also been in contact with his secretary and she is also very nice. They seem to be really dedicated to preventing unnecessary amputations for their patients. I am really hopefull about the visit with them. We dont have an appointment set up yet but we will have soon and I will keep everyone posted. Thanks for reading. Until next time. GOD BLESS.

Thursday at physical therapy

2010-04-12T03:00:00.002-04:00

When we went to Kayla's physical therapy appointment Thursday the therapist told me something new. She said that she had looked at Kayla's x-rays and she found that not only is Kayla's tibia bowed but it is also rotated and she is afraid that Kayla will have trouble out of her knee when she starts to walk due to that rotation. needless to say that didn't make me feel any better about her condition. I will update more soon. until next time. may GOD bless you all.

Kaylas physical therapy

2010-04-02T19:29:00.002-04:00

Kayla started physical therapy yesturday and everything went good with the therapy but the therapist told me that she was probably going to have alot of trouble out of her ankle when she starts trying to walk because of the way her tibia is bowed unless they put a brace on her to stabalize her ankle. I have pretty much been expecting someone to tell me that and it really bothers me but at least they think she is going to be able to walk with a brace so that is great. The therapist told me that she does have fibular hemimelia so I called her Dr and told him what the therapist said and he said that he had done the research on FH and he agrees that FH is what Kayla has, but I already knew that from the research I did but at least now I have an official diagnosis from a medical professional. Her Dr. told me to continue to take her to therapy and to also take her to her appointment at shriners on the 29th (which I plan to do)and we would go from there and discuss our options. I am going to make a list of questions that I want to ask when we get to shriners so that I will not forget any of them and I am also going to continue to do research on FH and the treatments for FH on the internet so I can be well informed and educated so I can make the right decisions about my daughters care. Well gotta run I have supper on the stove. I will update soon. Until next time. May GOD Bless you all.

Kayla's checkup

2010-03-26T16:46:00.002-04:00

Today Kayla had her checkup with the pediatrician and he said she is doing good. She is growing good and she weighs 8lb's 4oz's now. The pediatrician referred Kayla to physical therapy for her foot so we went there and they made a brace for her leg. Next week they will do some therapy on her leg. I mentioned the Fibular Hemimelia to the Dr. today and I asked him if that is what she has and he said he had never heard of it before and he said he would research it and let me know something, but I know this condition is what she has because she has all of the defects that come with fibular hemimelia. We are still going to take her to shriners but I would like to at least have a diagnosis of her condition from the pediatrician before we go down there. If I have to wait until we go to shriners for a diagnosis it will driveme crazy. It's already bad enough to know that she has a birth defect but it is even worse not having a diagnosis for that birth defect. Please pray that we will get answers soon. Thank you all for your prayers. until next time. Janice.

Our New Born Daughter

2010-03-20T09:40:00.000-04:00

Our Daughter Kayla Adrianna Brewer was born on March 1, 2010. She weighed 7 pounds and 5 ounces and was 22 and 1/4 inches long. She is very healthy and Just a beautiful baby. The day Kayla was born her pediatrician did the usual physical on her that they do on new borns and what he found shocked both my husband and I. The Dr came in to my room and said, I saw your daughter and she is doing great. She is a beautiful healthy baby. And then he went on to say, It appears that her left leg is just a little shorter then her right leg and I want to send her for x-rays to make sure her hips are not out of socket. (This may not have been his exact words but I was still on medication from a surprise C-section that I wasnt expecting at all and I dont remember his exact words). So he sent her for X-rays and if I am not mistaken it was the next morning before the Dr ever came in to let us know anything. He said that her hips looked fine but she was born with a birth defect in her left leg. As a mother being told that your child was born with a birth defect is devistating. It makes you feel like you have failed your child. I was the one growing her and my question was, What did I do wrong to make her come out with a birth defect? The Dr said that noone was to blame, and it was nothing that I had done, it was just the way she had developed. The Dr went on to tell us that the Femur in Kaylas left leg was 1 cm shorter then the femur in her right leg and that her Tibia in her left leg was also 1 cm shorter then the one in her right leg and that she should be fine. (so basically he was telling us that her left leg was 2 cm's shorter then her right) He said that we would have to wait until she was about 9 or 10 months old and trying to walk before we would know how this would affect her balance and that she may have to have a special shoe to compensate for the leg length discrepancy. Well that just wasnt a good enough answer for me. I wanted more answers about this defect and how it was going to affect her life so I decided the day that we were released from the hospital to get a copy of her X-rays because I wanted to see them for myself. When we got home and got settled in the first free moment that I got I looked at Kayla's X-rays and sure enough you can see that both her femur and tibia in her left leg are shorter than the ones in her right leg. The radiologist also reported seeing the leg length discrepancy. But after looking and looking at the X-rays I found out that that wasnt the only problem. I came to find that her Tibia in her left leg was crooked making her foot crooked and I also didnt see a Fibula in her left leg on the X-rays. There was a Fibula in her right leg but not her left. That concerned me so I asked her pediatrician if she had a Fibula and he assured me that she did but I looked at the X-rays again and still didnt see one and neither did my husband so I called the hospitals X-ray department and asked them to ask the radiologist to look at her X-rays again and see if she had a Fibula. So later on that day the X-ray department calls me back and says that the Radiologist did look at the X-rays again and he said that Kayla was born with a congenital absence of her Fibula meaning that She has no Fibula. I just couldnt believe what I was hearing and I started to cry. What did this mean for my child? Was she going to be able to walk without a Fibula. I had also called and made my daughter an appointment with the Shriners hospital before I found out that she had no Fibula so when we go to her appointment at Shriners I am going to have to take the X-rays with me to show them she has no Fibula. They will probably take x-rays of there own but I will also show them the ones I have. After finding out that Kayla didnt have a fibula I decided to do some research on the internet and I found out that the birth defect Kayla has is called Fibular Hemimelia. She has not been diagnosed with Fibular Hemimelia yet but I am sure that when we go to Shriners that is what they will diagnose her with. Fibular Hemimelia is basically defined as a congenital absence of the Fibula sometimes the fibula is only partially there. Along with the absence of the Fibula additional conditions may be present such as leg length descrpancies, bowed tibias and crooked anckles and Kayla has every one of these conditions. The biggest question I have had is, Will she be able to walk. I have came to find that children with FH can walk. Sometimes they need a special shoe to compensate for the leg length descrepancy and sometimes they need surgeries to lengthen the bone and sometimes some children have to undergo leg amputation and be fitted for a prosthetic leg. I Will be asking the Dr's at Shriners about the leg lengthening surgeries. I dont want my daughter to have to go through surgery but If it will help her in the long run then that is what we will do. But we will not make any decisions until we know what the right decision will be for our daughter and our family. I have also been talking to the occupational therapist at the hosptial and she thinks that since Kaylas bones are still soft and still growing that we might be able to use a brace on her leg and straighten her Tibia out. The Occupational therapist spoke with Kaylas pediatrician trying to get a referral from him for her to see the Therapist but he said he wanted to wait until we could all meet together to discuss our options so We have an appointment with the pediatrician this coming Friday on march 26th and we are going to be meeting with the occupational therapist to discuss our options. We also will be going to Shriners on April 29th so wish us luck. Everyone that prays please pray that THE LORDS will will be done in this. I know that THE LORD can heal my baby and I know that THE LORD's will is what will be done. Thanks for stopping by and reading our blog. We will be keeping everyone informed of Kaylas appointments and her progress. Thanks in advance to everyone who sends up a prayer for our daughter. Until next time. GOD BLESS YOU ALL.