Time for Cast Removal.

Time seemed to fly by and it was time to head back to Baltimore for Kayla's cast removal and then hopefully after that we would not be going back for a while. If I remember correctly we left on June 23, 2012 and took 2 days to drive that long trip. On the morning of June 25, 2012 we took Kayla to see Dr. Standard. They removed Kayla's cast and did some x-rays and said things looked real well. He said we didn't have to come back for about 6 months. They set Kayla an appointment for December 20, 2012 if I remember correctly but we ended up not being able financially to take her for the tip and it was so close to CHRISTmas that we didn't want to make the trip so Dr. Standard had a prescription emailed to us for X-rays and on Dec 3, 2012 I took her for x-rays and shipped them to Dr. Standard via UPS. Dr. Standard had said that as long as Kayla's x-rays looked okay that he would wait until March (spring) to see her. It was about a week later that I got a call that Dr. Standard said that Kayla's x-rays looked wonderful and he would see her in March. We decided to go ahead and schedule Kayla's next Surgery. Dr. Standard had told us before that he would do her next surgery anywhere from 6 months to 1 year after her surgery. They scheduled her for surgery on March 5, 2012 but my husband and I discussed it and he wanted me to have it rescheduled for closer to the end of March so they rescheduled it for March 20, 2012. Now we are just in a waiting game until March 16, 2012 which is when we will be leaving the house and heading for Baltimore Maryland for Kayla's surgery. In the meantime we have been doing fundraising to try to raise the funds that we will need to take Kayla for the surgery and since she is having Limb Lengthening done Me and the girls will have to stay in Maryland for 3 months after Kayla's surgery. My husband will be staying for 2 weeks after the surgery but then he has to come home and work. I have lots to do to prepare for this trip. One major thing is the fundraising. I am also going to have to make a list of things I need to pack and take with us. I have made Kayla 7 fixator covers already and I am hoping they are big enough, if not I will be making more once we are in Maryland after her surgery. I have also Modified a couple pairs of pants and will be modifying more in the next few weeks. I found her 6 full piece outfits that snap closed on the insides of the legs like a baby onesie would and I think they will work real well for her to wear after the surgery. I still need to find her some bathing suites to modify for her to wear in the pool for water therapy and I have lots of things I need to purchase for our stay like Shampoo and stuff like that. Will be updating soon.....

Time for Fixator removal...

Time seemed to go by fast and it was finally time to head back to Baltimore Maryland to have Kayla's fixator removed. If I remember correctly we left the house on May 30, 2012 to head to Maryland. We drove a little more than half way and found a hotel to spend the night. The next day we woke up and got back on the road and drove the rest of the way to Maryland. Once we got to Maryland we got settled in our room and prepared for Kayla's surgery the next day. The morning of the surgery I was nervous but excited at the same time. It didn't seem to take them as long this time to get Kayla prepped and get her into the Operating room. It also seemed like it didn't take no time for them to get done with the surgery. Finally Kayla's fixator was removed and she had her cast on. She had a Camouflage cast per her dads request. They called me back to the recovery room and since they would only let two people at a time back to see Kayla, my oldest daughter Jessica and I went back. Kayla was sleeping when we got back there so we just sat there and waited for her to wake up. A while later she was still sound asleep so I decided to go out and get Mike (my Husband) and let him come back and sit with Kayla a while. I was in the waiting room for a while before I decided to text my husband and see how Kayla was doing and he said she was awake and sitting up in the bed eating a popsicle. She seemed to be glad to have the fixator off but also was kinda uncomfortable with the cast at first. They finally released her from the hospital with a shoe to attach to the bottom of the cast because it was a walking cast. The Dr. Said she would probably have the cast on for about 4 weeks and he would then remove it and make it into a removable cast so we could put it on her when she was playing hard or when we think she needed it. Kayla wasn't real comfortable about walking on the cast at first and it took her several days to adjust to it and get use to walking in it but when she did finally start walking on it you couldn't stop her. We finally left Baltimore and made it home and just took things day by day waiting for the day that we were supposed to come back for cast removal which was June 25, 2012. We had the appointment for cast removal before even leaving the hospital the day her fixator was removed.

Glad to be home.

After Driving all day the day before, we had a good nights sleep. The next morning when I woke up I was so thankful to be home. I didn't want to even leave the house that day, I cant remember if I did leave the house that day but I didn't want to. In the days following I had to get Kayla signed up for physical therapy and just begin the wait. The Dr. gave us a prescription to have x-rays done on Kayla's leg about 4 weeks after we came home and after having the x-rays done I had to send them via UPS to Dr. Standard and await word from him to see when Kayla could have her fixator removed. During this 4 week wait, Kayla adjusted really well and got to the point where she was running in her fixator when someone would hold her hand and maybe even a little by herself but I cant really remember lol. We went to my Mother in laws alot and she got to play out in the yard when the weather permitted. My Mother in law had a child sized swimming pool that she put water in and let Kayla bath in after she would get finished playing outside and Kayla really enjoyed that. Finally the time had passed and it was time for Kayla's x-rays. We had them done on April 16, 2012. After having the x-rays done I shipped them Via UPS to Dr. Standard and then we began the wait. It took about a week before we were contacted about the x-rays but we had good news. Things were still progressing and the Dr. wanted to take Kayla's fixator off on June 1, 2012. I was excited that Kayla was going to have the fixator removed but I was really hoping he would remove it sooner then what he had scheduled but I knew that the extra healing time was better for Kayla so I did not complain.

The following days

We turned Kayla's pin on her fixator for about a week. We had to do a full turn 3 times a day. We done lots of things to pass the time by, we took Kayla to the toy room at the Hackerman Patz house to play, we took her to her therapy appointments and we went shopping a couple of times and also went to visit my cousin who lives in Reisterstown Maryland about 20 minutes from the Hackerman Patz house. In a way it seemed like time was going by fast but then in another way it seemed like it was going slow, but I was getting homesick so I guess that is why at times it seemed to be going slow. It was finally time for her checkup with Dr. Standard to see how well her leg was doing and I was hoping that he would give us a good report and say that we could go home even though we were supposed to stay at least another week for Physical Therapy. We got to the Rubin Institute and got Kayla registered for her appointment and began the wait (there is always the wait) but it didn't seem like it took that long for them to come and get Kayla for x-rays. After the x-rays Kayla was put into a room and the Dr. came in to see her. He said her leg was doing really well and her Tibia was in the exact position he wanted it to be and he told us that we could stop turning the pin, and it was a good thing he told us that we could stop turning the pin because we had ran out of room on the pin to turn it. He said that new bone was already starting to form in the brake in her Tibi (they had to brake her tibia to straighten it out) I was so excited that things were going so well and that he said we could stop turning her pin. I asked him if he thought we could go home and he said he didn't see why we couldn't. I was ecstatic when he said we could go home. When we left the Dr's office we went straight to the HP house and started packing to go home. We had accumulated so much stuff during the time that we were there that we had to donate what food we had left to the HP house because there was just no room for it in the vehicle. We finally got everything packed up and got on the road. We had to stop in at my cousins house to take some bowls back to her that she let us borrow to microwave some food in and I also had to pick up my laptop computer that her husband was trying to fix. We said our goodbyes to my cousin (of course there was crying involved, there always is with us) and we got back on the road and made our way home. We were so anxious to get home that we decided to drive all the way through instead of stopping and spending the night in hotel a little over half way like we normally do and it took us somewhere around 11 hours to make it home. I was so worn out and so was everyone else but we managed to stop by my Mother in laws for a visit. We finally decided to go to end our visit with my mother in law and go home. When we got home we didn't even attempt to unload the vehicle because it was about 10 or 11 oclock at night if not later. If I recall correctly we went in the house and went straight to bed.

The big day

So the day had came (March 7, 2012) and it was time to get ready to take Kayla to the hospital for her surgery. It seemed like We were ready in no time and were at the hospital a little before 6:30 A.M. which is what time they told us to have her there. I stepped up to the registration desk and told the receptionist why we were there and she gave me a card with a number on it and said when they called Kayla's number to come up and register. It seemed like we waited forever for them to call her number but when they finally did they got her registered and it was all just a waiting game from there. It took quite a while for them to call Kayla back to prep her for surgery but they finally did. My husband and I had our oldest daughter with us as well and there was no one to set in the waiting room with her so we were going to take her back with us while they prepared Kayla for surgery and the nurse told us that only 2 could go back with Kayla at one time, we explained to her that we had no one to watch Jessica and that she had to come back to the back with us but the nurse still would not let us so my husband decided to stay in the waiting room and Jessica and I went to the back with Kayla. When they got Kayla in the room and settled in her bed I talked a nurse into letting My husband come back to the room with us. She got in trouble for it but they let him come back there and stay with us. It took them a long time to get Kayla prepared and ready and they were also waiting on the Dr. But Dr. Standard finally made his presence and it was time to take her back to the operating room. They told us that one of us could go back to the operating room with Kayla and stay just until she fell asleep from the sedation and my husband and I decided it would be me to go back with her so they gave me some sterile clothing to put on over my clothes so that I wouldn't bring any germs into the Operating room with me. When we got back to the operating room they allowed me to hold the mask over Kayla's face that had the anesthesia in it that was to put her to sleep. When she fell asleep they let me kiss her on the forehead and say my goodbyes to her. I was a nervous wreck. I couldn't help but cry. I was wondering how she would handle it when she woke up and saw that we were not there, would she be confused or scared were questions that were going through my mind. The Dr. and Nurses told us it would take a few hours (cant remember how many hours they said) but it took longer then they said and it scared me. During the surgery someone came and got us and took us to see Nurse Lee so she could show us how to turn the pin on the fixator and how to care for her leg while it was in the fixator. We tried to kill time so we also went and ate. When we got back to the waiting room there was a TV on the wall that had patient information on it and we could look for Kayla's number and beside of the number it would tell if the patient was still in surgery or in recovery and it seemed like Kayla stayed in surgery forever. They FINALLY came out and told us that Kayla was out of surgery and everything went well. She was in recovery and we could go back as soon as she woke up. It seemed like it took them a long time but they finally let one of us go back to be with Kayla. Only one person at a time was allowed to go back so I went. She was awake and not really understanding what was going on but she did better then I thought she would. After a while they let Jessica and Mike come back to see Kayla but they were only allowed to stay a few minutes. It seemed like Kayla was in recovery forever before they finally sent someone to get her and take her to the children's wing in the hospital. When they finally got her to the children's wing and got her settled in, we had a problem and had to change rooms. After they got her settle in her new room we just tried to get as comfortable as possible. Jessie and Mike stayed with Kayla and I for a little while and then they went back to our room at the Hackerman Patz house and tried to get some rest. That night was a hard night for us. Kayla didn't sleep as good as I was hoping she would. She really wasn't feeling a whole lot of pain because they had an epidural placed in her back but she was just uncomfortable being in the hospital I guess. As time went on Kayla got to where she wanted me to get her out of bed and hold her but I couldn't because of all the tubes running to her and she didn't understand that so I tried getting in the bed with her and that was a very hard thing to do. The next day the Physical Therapist came in and wanted to work with Kayla. Kayla was kind of hesitant about letting her do therapy so she got Kayla out of bed and put her in a wagon and we pulled her around in the hall way of the hospital. There were other people in and out of her room through out the day, I can't really remember them all. There were nurses, Dr's., Students, Therapists, ETC.... I tried to make things comfortable for Kayla when she was put back into her bed. I tried to get her interested in watching TV and that worked for a while but then she just started crying and I could hardly get her to stop so the Nurse started giving her some of the prescribed medicines she was supposed to have for muscle spasms and that seemed to help her and calm her down for a little while. After about 3 days in the hospital the Dr released her to go back to the Hackerman Patz house. We were given instructions on how to take care of her outside of the hospital. We were also given instructions on when to start turning her pin on her fixator, which was on Monday and also we were told to take her to physical therapy on Monday. I was very nervous about turning the pin for the first time. I had never done anything like that before and it was scary to think about. We had a good weekend, Kayla was kind of restless but she did better then I expected. She didn't want us doing the therapy on her that we were instructed to do. Monday rolled around and I got up to get Kayla up and ready for therapy and I turned her pin for the first time. It was actually easier than I expected and I felt more confident about doing it. Therapy went well, Kayla didn't really want them touching her but it went the best that could be expected. We continued therapy according to her schedule and also did therapy at the Hackerman Patz house ourselves, we also continued turning her pin according to the Dr's orders.

Preparing for surgery

After we had Kayla's surgery scheduled I began to prepare. I was making lists of things I would need to take with us because we were told we would be there in Baltimore for about 3 weeks. This was Kayla's first surgery so what they would be doing was tibia straightening and ankle reconstruction (called super ankle). Dr. Standard said in order to have a successful Lengthening Kayla would have to have a stable ankle and a straight tibia. I asked many questions along the way on the groups I was apart of trying to get a little insight as to what to expect from others who had been through the same thing. I had alot of help from others. I wanted to be as prepared as I could be, I bought clothes that I thought would be easy to modify and I bought dresses because I felt they would be easier to put on her with the fixator on her leg. The only thing that I didn't make or buy was fixator covers because I had no clue how to begin to make them or where to even buy them. I also started doing fundraising to try to get the money we would need to make the trip and to stay in the Hackerman Patz house that was across the street from the hospital. We had lots of help with our fundraisers and between fundraisers, donations and $1,000.00 from our yearly tax return we had plenty enough money to make the trip. I finally felt like things were going to work out in Kayla's favor. As time passed and it got closer to time for the surgery I became really nervous. In the days before we had to leave for Kayla's surgery we had her a birthday party. Her birthday is on March 1st and her surgery was scheduled for March 7th. We left on March 3rd and drove a little over half way to Baltimore and spent the night in a hotel. The next morning we drove the rest of the way and got to the Hackerman Patz house on a Sunday evening. The very next day on Monday Kayla had a pre-op appointment with Dr. Standard. The appointment went well and we were called later that day or the next day (not sure which one) and told what time to have Kayla to the hospital for surgery. On Tuesday we didn't have anything to do so we went to my cousins house to visit. My cousin lives in Reisterstown Maryland about 20 minutes away from the Hospital. We visited with her and also had her to show us where Walmart and Aldi's was so we could shop and get some necessities. The whole day I was thinking about the surgery in the back of my mind and was getting more nervous by the minute.

Feeling overwhelmed and needing answers

Since I couldn't get any answers from the Lady at the Rubin Institute about the financial assistance program, I took it upon myself to email the president of the Sinai hospital and ask him about their financial assistance program. I think it was the same day that the president emailed me back and said he was forwarding my email to someone else and expect to hear from someone. I really didn't think I would hear from anyone, to be honest I thought I would probably get the run around again BUT much to my surprise I was wrong. Within a few days I was contacted by a lady from the Sinai Hospital who said she was told to contact me and she said she was going to send me a financial assistance application and for me to send it back to her as soon as I could. So when I got the application, I filled it out and sent it back ASAP. It wasn't long after I sent the application in that I got a letter in the mail stating that Kayla was approved for the financial assistance program and would have 100% free medical. I was absolutely ecstatic. I wanted to jump for joy. My baby was finally going to get the surgery she needed. While all of this was going on I had been joining the web chats with the Dr's in Maryland and was asking questions about the surgery and everything and I got to know Dr. Standard. I started hearing very good things about Dr. Standard(dr. herzenbergs colleague) and I got real comfortable with talking to him in the chats so I decided to take Kayla to Baltimore to see him. I didn't have anything against Dr. Herzenberg but over time I just started feeling more comfortable with Dr. Standard and I was told lots of good things from others about Dr. Standard. On our first appointment with Dr. Standard, he went over everything with us that he would bed doing for Kayla. He printed Kayla's x-rays out and while talking to us he drew diagrams on the x-rays showing us just exactly what would be done. We left there feeling very comfortable about everything. Dr. Standard told us to decide when we wanted Kayla's surgery to be done and to let them know. After we decided when would be the best time to have the surgery we called the Rubin Institute and set up Kayla's appointment for her surgery. I could finally take a sigh of relief because everything seemed to be working out.

Searching for another Dr.

After becoming very discouraged and heartbroken about the financial situation with the Sinai Hospital and Rubin Institute in Baltimore Maryland we decided to seek out another Dr. that did accept her insurance and was closer to home that had experience with limb lengthening and the super ankle procedure that Kayla needed done. After much research I found a Dr. in Nashville Tennessee at the Monroe Carroll Jr children's Hospital who I felt comfortable with so I set up an appointment with him and took Kayla to see him. I was impressed with him. He basically told me the same things that Dr. Herzenburg in Maryland told me. He was confident that he could take care of Kayla the way she needed so I discussed it with my husband and we decided to give him a try. Kayla's insurance was accepted there and we were closer to home. Nashville was only 5 hours away whereas Maryland was around 9 or so hours away. When it came closer to time for her surgery I began to ask more questions. I just assumed that since we were going to have to stay in Maryland for 3 months after Kayla's surgery for the lengthening process and for physical therapy that it would be the same way with staying in Nashville, but after asking questions about places to stay I was informed that the Dr. does not keep his patients, he sends them home just a couple of days after the surgery and expects them to do all the pin turning (lengthening) and Physical therapy in their hometown and they would have to travel back and forth for Dr's appointments which would be quite often. After learning this My husband and I began to immediately feel uncomfortable about taking her there. We just would not feel safe having her at home during the lengthening because we were told that Major things could go wrong and there was just no way the hospital here in our home town would be anywhere close to capable of taking care of Kayla should something go wrong and traveling back and forth just was not an option for us, so once again I was very discouraged and heartbroken. I had almost given up but the more I looked at Kayla and watched her grow the more determined I became to make sure she got the best of care possible so I took matters into my own hands.

Light at the end of the tunnel

It was finally time for Kayla's appointment to see Dr. Herzenberg at the Rubin Institute in Maryland and we were packed up and on our way. It was only supposed to be about a 9 hour trip, but with having to stop so much to feed Kayla, change diapers, eat and take bathroom brakes it took us around 11 hours or a little more to get to Baltimore. We drove straight through thinking we could handle the trip but it was harder on us then we thought. When we made it into Baltimore we went to the hotel we had made reservations at and got settled in for the night. The next morning we got up and got ready for the appointment. The hospital was only about 4 minutes away from the hotel so we got to the Rubin Institute just a little earlier than our appointment because check out time at the hotel was early. After a long wait we finally got called back to see the Dr. He was very nice and really took the time to answer our questions and discuss all of our treatment options with us. If I remember correctly they didn't do any new x-rays because she had gotten x-rays done at the hospital when she was born and at Shriner's when we went there in April for her appointment and they didn't want to expose her to any unnecessary radiation. Dr. Herzenberg told us Kayla's predicted leg length discrepancy, which was between 6 to 9 inches at maturity without surgery if I am not mistaken. He also said that if we didn't have the surgery done that by the time she was grown her LLD would be so significant that she would not be able to have a shoe lift that would be tall enough to compensate for the LLD and he told us about other conditions she could develop over time if she did not have any surgery done such as scoliosis of the spine. He was very willing to discuss limb lengthening with us and explained everything that would be done in detail, and also said that with the surgery we would have to stay in Maryland for around 3 months during the lengthening procedure and for physical therapy. He also spoke about reconstruction of her ankle and also discussed either doing 3 lengthening's or 2 lengthening's and stunting the growth in the other leg. He did discuss amputation with us but did not try to convince us it was the best option the way we feel that the Dr. at Shriner's did and he also told us he would not do any surgery until Kayla was between 18 and 24 months of age and at the time she was only 4 months old so that gave us a lot of time think things through. We left there feeling very reassured that limb lengthening was the best option and had made up our mind to go with limb lengthening and were also sure that we wanted the Dr's in Maryland to take care of our baby girl. After we made it home and got settled in, we began trying to make plans for Kayla's first surgery. I joined web chats that the Dr's in Maryland had and asked as many questions that I could to learn more and be prepared. I also joined groups on facebook and forums, and they were a big help also. After a little while we found out that Kayla's insurance was not accepted in Maryland and became very discouraged, but I was not going to give up just yet because with all the research I was doing on the Rubin Institute for Advanced Orthopedics I found out that they also had financial assistance programs for low income families that would pay some or all medical bills. I decided to ask about their financial assistance program but at the time I could never get the person I talked to about it to give me any information, she just kept saying that she was going to try to contact Kentucky Medicaid and see if she could work something out with them but in the same conversation would also say she didn't think Kentucky Medicaid would work with her. After feeling like I was not getting any answers about financial assistance and her medical insurance I became even more discouraged then I was when I found out her insurance was not accepted in Maryland. I felt like I was being pushed aside when I would ask about the financial assistance. I knew that there was no way we could go into this surgery without having answers about how we were going to be able to do it financially. There was NO WAY we could pay for this surgery to be done so if Medicaid wouldn't come to an agreement with Rubin Institute and Sinai hospital, or we couldn't get information on the financial assistance program then I felt like there was just no way Kayla could have her surgery there so I reluctantly sought out another Dr. closer to home that did accept her insurance and had experience with limb lengthening and the super ankle procedure.

Faced with many hard decisions

Now that I finally had a diagnosis for Kayla's birth defect I wondered where to go from there. I called the Shriner's hospital for Children in Lexington Kentucky and made an appointment for Kayla to see an orthopedic surgeon. I also contacted a family friend who was also an occupational therapist at our local hospital and I told her about Kayla and she told me to bring Kayla to see her. I took Kayla to the Therapy office to see her and she decided that she wanted Kayla as a patient so we began trying to get a referral from her pediatrician for her to have therapy. In the meantime I did more research and I found out the treatment options for Fibular Hemimelia and I was not happy at all. The most popular treatment option was Amputation. There was NO WAY I was going to allow a Doctor to amputate my daughters leg. The second treatment option was limb lengthening surgery. Not wanting to even think about amputation I chose to do more research on the Limb Lengthening. Upon doing my research I found out that limb lengthening was a long and hard process but My husband and I weighed the pro's and con's of it all and decided we would rather have the limb lengthening done and give Kayla a chance of keeping her leg than we would to let them Amputate. The day that we went to the Shriner's hospital we went knowing that we were going to discuss limb lengthening with the Dr. and wasn't even going to discuss amputation because it would be a waste of time since we had already decided we would not even consider amputation at that point. We got Kayla registered at the front desk of the Shriner's hospital and then they called her back for x-rays. After the x-rays they put us in a room to wait on the Dr. The Dr. came in and introduced herself and began discussing Kayla's defect with us and right away she began talking about amputation. I told her that we didn't even want to discuss amputation because we had decided on the limb lengthening surgeries, but she didn't seem to understand that because she kept talking about amputation as if she were trying to get us to change our minds about the limb lengthening surgeries. Every time my husband or I would ask her about limb lengthening she was very reluctant on answering us and when she would answer us she would say something bad about limb lengthening and then would go right back to talking about amputation saying only good things about amputation. We were not against amputation because we knew that amputation was the only option that some children have but we knew it just wasn't the right decision for our family. By the time we left there we were very uncomfortable with the Dr. and were very discouraged. After some discussion we decided we would seek out a second opinion and that is when I remembered that while doing my research for a diagnosis I found the Rubin Institute for Advanced orthopedics in Baltimore Maryland and Dr. Dror Paley in West Palm Beach Florida, who use to work in Baltimore Maryland at the Rubin Institute before moving to Florida. After finding Dr. Paley I emailed him and discussed Kayla's condition with him but after finding out that Kayla's insurance may not cover her for a visit in Florida and since Dr. Paley was so far away from us, he recommended that I get in touch with a former colleague of his which was Dr. John Herzenberg from the Rubin Institute in Maryland and he forwarded Dr. Herzenberg my email. It wasn't long after Dr. Paley forwarded my email that Dr. Herzenberg responded to the email and encouraged me to bring Kayla to Maryland for a consultation at the Rubin Institute. After much discussion my husband and I decided to make an appointment with Dr. Herzenberg for our second opinion. The appointment was set for July 1, 2010 when Kayla was only 4 months old. While waiting on time for her appointment in Maryland we got her approved to do physical therapy with our local PT office and she began therapy.