19 days out

Yes, it is very hard to believe that we are 19 days out from surgery. Whew!! It's been a crazy few weeks and I haven't posted as much as I've wanted to but I'd like to briefly list a few things that I've learned so far:

1. The day of the actual surgery is scary, the scariest day of my life if I'm honest, but it really wasn't as bad as I'd pictured it in my mind. I really prepared myself for the worst and was very surprised and relieved when I saw that Caleb was going to be okay. Dr. Paley and his team are incredible with making sure the kids are comfortable. The first week after the surgery was the week we digested everything. We came to terms with the fact that Caleb was going to have a fixator for the next 6 months and that he was going to depend on us for almost everything,  at least for a little while. It is incredible how quickly we adjusted, though. I realized that I am tougher than I gave myself credit for.

2. Kids are resilient and they don't want to be stuck on a couch. Yes.................. the first week the kids are a bit scared to move around. Yes................... you have to lift them up and help them do almost everything.........brushing teeth, bathing, potty, etc.  Yes.................. they sometimes experience pain and they aren't used to moving around with the fixator, but every single day gets a little easier. It is important to throw your child back into their daily routines as soon as you think they are ready. Let them have play-dates, put them in a wheel chair and stroll around the mall, etc.  They are NOT handicapped, they just have to adjust to doing things a bit differently.

3. Remember to tell your child every single day that they are strong and brave. Your child will pick up on your feelings and emotions so it is so important to be strong in front of them.  Remind them that every day they are closer to their goal. They have to believe in themselves because there are days they will have to do things they don't want to do.

4. Physical Therapy has it's ups and downs but from what we have experienced ALL the PT's are fabulous. They are loving and caring but they have to do what is necessary. They will become your best friends throughout the process. They will teach you techniques to use at home on 'off' days and also in the evenings. It is recommended that you use pain medication 1 hour prior to the PT session, in Caleb's case he is given 3ml of Roxicet. Some children also need Valium for spasms, but we haven't needed very much. The few times that I did give it to Caleb he threw up fiercely. The liquid Valium does not taste very good so I will be asking for the pill form if he starts needing it again.

5. Pin turning at this point hasn't been 'painful' but it is very uncomfortable. Your child might describe the feeling as being 'tight'. Obviously, that is exactly what is going on because the bone is getting stretched and everything is getting tighter. Caleb's has six struts but we don't turn each one every day. Every day varies and he has a very specific schedule. He turns anywhere from 2-6 struts a day. We split up his turns if there are more than 2 in a day. Since Caleb did not have a superankle procedure, they are correcting the positioning of his foot as they lengthen within the fixator, thus this is the reason we are never turning them all at the same time. This is what his schedule looks like:

6. I will devote another post to pin cleaning, but to briefly touch on the topic, it is more of an art than a science. It seems that everyone does it a bit different. The basics are as follows; wash it in the shower once a day with soap to loosen the 'gunk' and clean the leg and pin sites, use Q-tips and saline solution to remove the 'gunk' and skin that accumulates on the pins, and use fixator sponges and/or gauze for drainage of the site. If something looks red, or if it starts to get uncomfortable, have someone look at it right away. It is important to avoid pin-site infections, as they will make your child miserable. You are given a prescription for infection before leaving the hospital. Keep it on hand for infections.

Caleb has already had an infection and it wasn't pretty. His infection started on the incision line of where they put the plate in his knee. It started becoming painful and red and puffy looking. It got to a point that you could press on it and puss would come out. Yuck! In addition, his wires started to become very painful in PT. The wire sites actually looked okay but they were really bothering him. Dr. Paley's PA put him on antibiotics instantly but we had two rough nights before it kicked in. The first night he ran a high fever and was so cranky. The second night he was just cranky and totally irritable. By the third night we seemed to have gotten it under control and he started feeling better. We have been told that some kids are more prone than others to get infection.

The Family

FH does not just affect one person, it affects the entire family. We are lucky enough that we live somewhat close to the Paley Institute where Caleb is going daily for treatment.  While gas and driving time has been somewhat crazy, the majority of families come from elsewhere. We realize that lots of families have to either pack up the entire family and relocate for a few months or they have to temporarily separate from their families during treatments. We are grateful for our circumstances even though it is not without lots of challenges. 

It goes without mentioning that our whole family has had to make lots of adjustments during this time, especially Caleb's siblings. We have had to rely heavily on family to take care of Nora, age 5, and Lila, age 2, while we have gone to PT appts. Although they are having a blast with everyone that has been taking care of them, they have never been away from me this long. Nora has even asked why I haven't been spending time with her lately and so much with Caleb. God bless her. It's hard to explain to a 2 and 5 year old that the 7 year old needs me the most right now. Caleb's 14 year old brother, Zack, is also sacrificing a chunk of his summer as I've been very preoccupied with Caleb. I've not been able to take him places and/or have friends over because our schedule is absolutely crazy right now. I know that as Caleb continues to adjust and improve, we will fall back into a routine and I'll be able to spend more time with my other kids. I hate that they are feeling neglected by me. 

  Again, thank God for our amazing family and friends that have been picking up the slack. A LOT of slack. We couldn't do this without them.

If there is one thing that I have learned so far is that this whole process is a HUGE commitment not just for us, but to the entire family. We love each and every one of you that has been helping us so much during this time.

The girls out for the day with their Auntie Leah while Mom and Caleb are at PT. In this picture they are at Plaster Castle.

The girls had lots of fun doing different water activities.

Lila gets to have some fun at the playground!



First week of physical therapy DONE

We've made it through the first week of PT. Our appointments have been very late this week so coming home to cooked meals from family and friends has been a real treat. I thank you all so much for helping us during this time of adjustment. We are so incredibly grateful.

Caleb had a pretty good week and has improved so much with bending and straightening his knee. This causes a lot of anxiety for him in PT because it is painful for him but overall he is doing great. I'm happy to say that he is actually getting around a lot better and is starting to put some weight down on the fixator. In fact, he was walking around the house today for a brief moment without his walker. BIG improvement from just yesterday!

CAUTION! FIXATOR PICTURES:

I thought I would post some pictures of his fixator with the bandages off since the intention of this blog is be give information regarding the lengthening process. As most FH kids have fixators that look quite different from each other, this is what Caleb's looks like.

Caleb has four large pins that go through his leg and lots of wires in his foot.

There are stitches in his knee from where the put the plate in.

This is a look from the other side of the foot.

 

This is with his splint.

Not pretty but you really do get used to looking at it pretty quickly. Caleb has a green splint on his foot to keep it from pointing downwards. This is quite comfortable for him and he doesn't like it off for too long. Caleb is continuing to amaze us. Everyday he continues to improve and he is adjusting well to a life with a fixator.

Clothing

Life with a fix-a-nator takes a little getting used to. There's lots of changes you have to make to accommodate to this new contraption. Clothing is no exception. Having never sewed anything since my 6th grade Home-Ec class, this was somewhat new to me.

Prior to the surgery I purchased basketball shorts, cut, pinned, and hemmed them down the sides, then sewed in snaps. They came out good considering they were done by hand but the problem is that they take FOREVER to make. I bought a hand held device that 'stamps' the snaps onto the fabric when you press down hard but I noticed that if the fabric is too light (such as cotton) it rips holes in the fabric and if the fabric is too heavy (such as with the basketball shorts) it doesn't go through it well. For this reason I prefer the sew-in snaps as I think they will hold up much better long-term. Of course you can by the pants that have the snaps in them, but they have been almost impossible for me to find. As of now I am looking for a reasonable seamstress that can help me create a bigger wardrobe for Caleb as he has only 3 pairs of shorts and 1 pair of underwear that I'm washing everyday. I should have been sewing his clothing months prior to the surgery but I only got started a week before. So a word of advice.........get started on clothing modifications way in advance to surgery. It's just one less thing to worry about.

Another thing to think about are fixator covers. At the physical therapist's office at the Paley Institute there is a 'treasure box' where people donate modified clothing, new shoes, and fixator covers. I grabbed a fixator cover out of the box so Caleb would at least have one and so I can see how they are made. Caleb has still not gotten used to looking at his fixator and he is really uncomfortable with anyone looking at it besides his Dad and I. So a fixator cover, in my opinion, is a necessary item for day trips and/or when friends are around. Another great thing about them, as I found out yesterday, is that they are great for the pool. We have a community pool rather than one of our own and I was nervous how everyone would respond to the fixator in the pool as all the bandages are off and all the wires and pins are exposed. With the fixator cover, however, no one could see what was under it and  Caleb was able to enjoy an hour at the pool without anyone bothering him.

6 Days Post-Op

Tomorrow it will be 1 week from Caleb's surgery. Is that even possible? I've learned more this week than I could have ever imagined and everyday I continue to learn more and more.

Our first physical therapy sessions started yesterday, Monday, and it was almost like being teleported to another world. Prior to the surgery, I had only seen fixators on the Internet. I've always been a bit scared by them, as the pins and wires take some time to get used to. Monday, however, I saw TONS of people, adults and children, in all different types of fixators. Some went from ankle to hip while others were lengthening 2 legs simultaneously. It really was incredible. It was the first time in my life that I realized that my son isn't the only one with this problem.  I've also realized that my son has a lot to be grateful for as there are so many children who have it far worse than Caleb and I have put our circumstances in perspective. I wish more people could see what I've seen these past 2 days on what these children go through every single day. They are absolutely incredible and I almost feel proud that my son is amongst some of the bravest and strongest children I have ever seen.

Prior to the surgery I was so terrified that the hospital would be the hardest part to surgery. Boy, was I wrong. We were so blessed that Caleb did so amazing. He hardly was in pain or scared. He isn't a 'rough and tumble' little boy, either. He's the kind of boy that loves to cuddle and loves his teddy bears and not particularly into sports, a 'mama's boy'. I thought this surgery was going to be terrifying for him. It wasn't too long ago that I couldn't even send him to school (kindergarten) without him having a meltdown because he was so scared to be away from me. I have know idea where he has been getting all of his courage and strength but it is so remarkable and inspiring to watch.

In physical therapy you hear lots of kids screaming and crying, something I don't think I will ever get used to, but many parents have assured me I will. This is very hard for me because I keep wondering if my son will also have to experience this degree of pain, as I can't imagine that hearing my child scream could ever become tolerable. So far, physical therapy has been somewhat pleasant, being that we are only two days into therapy and haven't started turning struts. Caleb is getting lots of massages and even told his physical therapist today, "I can get used to this!". Hilarious!! She was cracking up.

Bending and straightening the knee has had him in tears today and yesterday and I've learned that this can sometimes be the biggest challenge with lengthening.  While it might not be painful to stretch bone, it is incredibly hard for the muscles and tendons to keep up. Lots of FH kids have problems bending and straightening the knee. We will have to continue with our stretches at home and make sure we are doing everything the PT tells us to do. Everyone keeps telling me that PT is the most important part of lengthening and I finally understand why.

Yesterday was the first day the bandages were taken off from the surgery. This isn't a pleasant experience, but I knew I had to keep it together for Caleb. Honestly, I wanted to throw up when I saw all the bars and wires and all kinds of horrible-ness going through my child's leg. I wanted to run out of the room but instead I took a deep breath and made a remark to Caleb that it was kinda cool and not so bad. I totally lied. Today, however, when I looked at all the bars and wires again while they were instructing me on how to do pin care, I wasn't as bothered as the day before. So it goes without saying that it really does get better. I'm getting stronger because I know I have to.

Turning starts tomorrow and if all goes well we will be stopping sometime at the end of Sept. Whoo hoo!! We are now 6 days closer to the end!!

Before pictures

BEFORE:

The night before surgery, I took some pictures of Calebs leg. As I have stated before, Caleb has a 7.2cm discrepancy. The first 2 pictures show Caleb standing straight on his 'good' leg. You can see the difference between the two limbs. The 3rd picture shows Caleb standing on both legs.

AFTER:

Can you believe he got up to use the walker already? He isn't putting weight on the leg with the fixator just yet, and he will use the walker for only a brief moment or two, but it is exciting none-the-less. Go Caleb!

The 'Village'

I never could have expected or anticipated the amount of love and support that we have received from so many during this time. You all have been our 'rocks'.

Our amazing family, friends, neighbors, and friends of friends who have helped us financially, taken care of our other children during our time at the hospital and will continue to do so throughout PT, sending us cooked meals, walking our pets, setting up accounts for donations, and even just taking the time to pray for us.........Thank you so much!! We love you all!!

The Fixator AKA the Fix-a-nator

The nurses in the recovery room all commented that Caleb's fixator is relatively small in comparison to other children's that they have seen. I believe this is due to the fact that Caleb is lengthening at the ankle, instead of under the knee, like originally planned. Of course it looks huge to me and it took a little time to get used to, but since everything is still bandaged up it isn't quite as scary anymore. Tomorrow is our first appointment with the physical therapist and we will be taking the bandages off so I will see the bars and wires that are going through his foot and leg (not looking forward to it) and learn how to clean the pin sites and turn the struts. Turning starts this Wednesday.

Our time in the hospital was pretty uneventful. The epidural was in place while the body recovered from the shock of surgery and while the swelling came down. Caleb ran a slight fever the night of the surgery and had a few moments of break-through pain, I believe this was due to swelling, but his pain level was never very high and the nurses addressed it quickly with morphine and/or roxicet. Caleb's biggest complaint was that his leg felt very heavy. Obviously, the fixator is going to take some getting used to, but in addition to that, the epidural does give the legs a heavy sensation. He had 2 moments in the hospital that were a little rough for him, but we were easily able to calm him down.

Physical therapy in the hospital consisted of getting him from the bed to a wheelchair. The day after surgery it was very hard for him and he didn't like moving his leg. But the second day after surgery was a bit easier for him and I can see that every day will get better and better, the nurses reassured me of this as well. Caleb did not like looking at the fixator while in the hospital and it had to constantly be covered by a towel or sheet. Of course, this will also take some getting used to.

On Friday the epidural was pulled and I was terrified that this would be a hard day for him, but it wasn't! He was given oral pain meds before they pulled it and he was able to go 4 hours between doses. If he hadn't been able to control the pain with the roxicet, they would have given him morphine, although this was not neccessary for Caleb. That night he went from 9:30pm to 5am without pain meds. Isn't that incredible? Since he was able to manage pain with oral medication, he was discharged the next day,  the 3rd day after his surgery.

The hospital took care of everything while we were there. Emily, Dr. Paleys patient case manager, ordered Caleb's walker, wheelchair, commode, fixator sponges, bandages, pain meds, valium (for spasms), and saline solution for cleaning. We had everything we needed prior to going home. As we waited for discharge, we put Caleb in his wheelchair and he went to the hallway to see how fast it could go: ) I love that little boy!! As the doctor's keep pointing out, the fixator is not there to scare us, but there to help us, so it is now being dubbed the 'fix-a-nator'.

As we put Caleb in the car to go home, which we have not gotten the hang of yet, I asked him if the surgery was as scary as he thought it was going to be and he said, "No, it wasn't". He asked if he was ever going to see all the nurses from the hospital that were taking such good care of him, and I explained that probably not as they were now going to be taking care of all the other boy's and girl's who just had surgery. St. Mary's hospital is absolutely wonderful with the kids and we could not have been in better hands.

As we are now 4 days post-operation I feel as though we have so much behind us already. We will have our challenges with physical therapy, I am sure, but Caleb has the right attitude and I believe in no time I will be posting pictures of him doing incredible things!

Counting all the MANY blessings

Caleb's surgery was scheduled to be a 6 hour surgery, with 1 hour for anesthesia and surgical prep in the operating room, 3-4 hour surgical time, and 1 hour recovery.  Caleb went in for surgery at 8:30am and we were expecting to see him around 2:30-3pm. We sat in the waiting room, contemplating how we were going to make it through the day.
                                                             
Around 12pm the nurse came out to tell us that the surgery was less complex than anticipated and that Dr. Paley was finishing up the surgery and would be out shortly to speak with us. I sat on the edge of my seat as I waited to get the details. Dr. Paley has always explained that there is a lot that can't be seen on x-rays and he doesn't really know what he will do in surgery until he opens up the patient.  In Caleb's case, his foot is not 'normal' but he has somehow compensated for this defect resulting in really good movement within the foot.  Dr. Paley thought the superankle wasn't necessary for Caleb and feels he will achieve the same outcome through repositioning his leg and foot within the fixator frame during the lengthening process.  Dr. Paley's goal with Caleb is to realign his leg and foot properly and to do the lengthening.

Caleb has had only one other surgery in his life and it was to release the tendons that were pulling his foot in an awkward position. Dr. Paley expected he was going to do another tendon release but after closely looking at Caleb's foot in surgery, he reconsidered because he didn't want to go through all the scar tissue.  He performed an osteotomy at the base of the tibia to realign the bone on top of the foot. The fixator is keeping Caleb's foot and leg in position so as everything heals, it will heal in the proper positioning. The site of the osteotomy at the base of the tibia is where we are also lengthening.   Dr. Paley removed the anlage (or the fibrous tissue that took the place of where the fibula would have been) and he removed a tiny remnant of a fibula that was also present and put a metal plate in Caleb's knee to correct the knock-knee. 


As we waited to be called back to the recovery room to see Caleb, I honestly was expecting to see a crying, groggy little boy. I was the first one back to see him since the hospital only lets one person at a time in the recovery room. Besides being a bit thirsty, Caleb was STILL in good spirits and doing great! He told me he had already taken a peak at his fixator and it wasn't a big as he thought it was going to be. His attitude was amazing, he was already starting to get silly again, and he was completely OKAY!!

 COUNTING THE MANY BLESSINGS!

I left the recovery room so that his dad could see him. He was back there for 15 minutes. Then Caleb was being transfered to his room.

Caleb with his sister on the evening of the surgery. Poor little guy was starving and finally getting to eat after not having anything since 10pm the night before.



Brother Zackery so relieved that Caleb is okay!

As I think back to the YEARS we have been anticipating this surgery, if I would have known that it would have gone as it did, I wouldn't have been so scared. Dr. Paley's team is wonderful and they do everything in their power to make sure the kids AND parents are comfortable. If this blog serves any purpose at all, I hope it might ease the fear of another family. It is MUCH scarier than it really is. Children are resilient. You have to prepare them the best you can, prepare yourself as well, and then take one day at a time. You might find that miracles happen along the way.

Surgery Day

Yesterday was the hardest day of my life and it marks the beginning for the long road ahead for Caleb.  We've had to make some hard decisions and I just hope they are the right ones.  For two years I have been preparing Caleb for the surgery. The last six months we have talked about it almost everyday. I haven't done this to scare him, I've done this to really prepare him. Yesterday, I felt that all of our talks have paid off.  Caleb was not overly scared or sad and his attitude was really inspirational.  I asked if he understood why we were having the surgery and he has totally accepted everything. This is huge! He is braver than I could have ever hoped or imagined. Braver than I would have been. He is very familiar with what the fixator is going to look like and he has seen children doing amazing things with them on........................................skateboarding, swimming, and having fun. He knows he will have to be brave and strong and that pain is unavoidable. He also knows that the goal is to make him as comfortable as possible and he will have medicine to help make the pain go away or at least make it not so bad. If Caleb was scared or terrified, I couldn't have done it.  He was making jokes in the prep room and making all the nurses laugh. The hardest part for Caleb was putting on the hospital gown because it was open in the back and everyone would see his butt. I swear that kid is adorable.

Josh agreed to go with Caleb while he was put to sleep.  This was extremely hard for him to do and I am so glad he was able to keep it together and be there for him, because it was just too hard for me to do. He had to wear this crazy hospital jumpsuit and hairnet and Caleb was given a box of markers to give it some flare.

 As hard to it is to imagine, this blog is making it somewhat easier to cope. I actually feel the love, prayers, and support and it is helping me tremendously. Thanks to everyone who has shown their concern for Caleb and our family. I also hope this blog might help another family in the future faced with similar circumstances.

Keeping cool and calm in front of Caleb has really helped him to be brave. I am so proud of him.  Of course, I weep when he isn't around, but somehow we are staying strong in front of him. I know how important this is and as my sister-in-law reminded me, our strength will give HIM strength. In actuality, it really is the other way around. HIS strength is giving us strength.

LONG day

Today was Caleb's pre-op appointment at the Paley Institute and it was such an incredibly long day. Our appointment was set for 8am but we didn't arrive until 8:30am. We checked in, signed paperwork, and then waited in the lobby to be called. The good thing is is that they have complimentary Dunkin' Donuts coffee in the lobby, served in Dunkin' Donuts cups and all : ) I wish I would have known this before stopping for coffee on the way, but now I know. This is were the fun ends. We waited 45 minutes to be called only to be put into another waiting room. Caleb kept busy by playing a game, "Guess What I Am", in which he gives me clues and I have to figure out what he is thinking. We also watched I Love Lucy and The Dick Van Dyke Show on the t.v. in the room. Yes, we love the old black and whites : )

Next, a nurse called for Caleb to get medical history, take his blood pressure, and get blood and urine samples. His facial expression was hilarious as she told Caleb he had to pee in a cup. He was trying to make the nurse laugh the whole time. He is getting very clever these days.  You almost forget he is seven sometimes.

Next stop was to talk to the anesthesiologist. He explained a parent can walk Caleb back to the surgical room and stay with him as he is put to sleep. This is comforting to know, in case Caleb gets scared. At the same time he warned me that this is not a pleasant experience for parents as it can be hard to watch your child drift off. I figure I might elect my husband for the job as I don't want to start sobbing and freak Caleb out even more.

When Caleb is asleep, they will then place the epidural in his back. I am happy they do it this way as it is very hard to keep children still as they put the catheter in their backs. It also saves Caleb from the unpleasant experience.

Then, we were off to the second floor, Dr. Paley's floor, to do x-rays and meet with Dr. Paley and his PA, Servando. We signed more paperwork and continued to wait in yet another waiting room until they called us. Poor Caleb, he was going crazy at this point. It wasn't until 1:30pm that we were able to speak with Dr. Paley and the PA. Mind you, he was running on empty with only a cinnamon roll in his stomach that he ate at 8am. We went over the surgery which is going to be scheduled for 8am tomorrow but we have to be at the hospital at 6am. This goes without saying but we will have to get in bed extremely early tonight. I have been informed that they anticipate the surgery to last between 5 1/2- 6 1/2 hours. This was really the hardest thing to hear. This will no doubt be a very long day.

FINALLY, we were free to go. Caleb was in tears at this point from boredom and hunger. We had lunch at Whole Foods, scarfed down soup and fruit,  and discussed that we were going to go to the movie theatre to watch the new Disney Movie, Brave. Which is fitting for my little man, as tomorrow he will have to be VERY brave.

Saying Goodbye

This week has been a blur!  Emotionally, physically, I am at my max. I'm scared out of my wits!!! Of course, insomnia has crept in : (

Tonight, I dropped my little girls off at my mother's house. She will be taking them for the next 2 weeks as we focus on Caleb. I am so grateful that she is taking the girls, I realize I wouldn't be able to do this without her, but it was bittersweet. It was so incredibly hard to look at my girls and say goodbye to them. Isn't that crazy? At any given point throughout the day/week I am begging for a break. 4 kids = Complete Chaos!! Yet tonight, I felt like I couldn't imagine a minute without them, let alone the next two weeks. I'm missing my babies!

Fibular Hemimelia

A little info about fibular hemimelia and Caleb's treatment:

Fibular Hemimelia occurs 1 out of every 40,000 live births which amounts to 100 babies born with FH in the United States per year.

There are many degrees of the condition. Some children have either partial absence of the fibula while others have complete absence.

Classic presentations of FH usually show a bowed tibia and dimpling on the skin on the tibia.

The affected limb is shorter than the other. The limb length discrepancy varies from minimal to significant.

The foot is abnormal in children with FH. Many children are born missing toes and the foot is not positioned properly under the leg so it usually 'bends' outward giving it a crooked appearance.

Many children with FH may also have problems with their hip, femur, and/or knee.

*In Caleb's case, his fibula is completely missing but he has all five of his toes. Caleb's limb length discrepancy at this moment is 7.2 cm. His projected LLD at fully grown is 10.2 cm. His knee has a minor deformity stemming at the base of the femur which has resulted in knock-knee. Knock-knee is a condition where the knee turns inward..

Treatment:

The main concern with FH is foot stability. To address this concern, Caleb will have a very complex superankle procedure in which soft tissues connecting to the ankle will be released, in addition to tibial, ankle, and heel bone reconstruction to align the foot correctly under the leg. The foot will be kept in position with wires attached to an external fixator. This surgery will occur simultaneously with the lengthening surgery. The Taylor spatial frame will be used for the foot correction and the lengthening. This external fixator will have to be adjusted (or turned) everyday.

Caleb will be in the hospital 3-4 days. To help minimize pain, Caleb will have an epidural placed in his back for the first 2 days. The anticipate that the hardest day for Caleb will be when the epidural is removed. During this time, Caleb will have to learn to manage pain with oral pain medication and I.V. meds if applicable.  The length of our hospital stay is dependent on pain management.

The second part of the surgery will be bone lengthening. In order to lengthen the tibia, the tibia bone has to be broken so that there is a small space in between the bone for new bone to form. Everyday the pins are adjusted, lengthening the bone, with our lengthening goal being between 5-7 cm. Lengthening begins after we leave the hospital and I will be taught to properly turn the pins and clean the pin sites. Caleb will be turning pins at a rate of .75mm per day. This phase of the lengthening takes between 2-3 months. During this time our primary focus will be physical therapy, pain management, and infection. Caleb will have to go to PT (physical therapy) everyday at St. Mary's in West Palm Beach. While bone can grow at a rate of 1 mm per day, muscles and ligaments take longer to stretch. PT sessions are extremely important to help compensate for this.

The last part of the surgery is to address Caleb's knock-knee. A plate and screws will be attached to the inner part of Caleb's knee to help it from turning inwards. This plate will stay in Caleb's leg for a year and will have to be removed later on.

After the stretching phase is complete, the next phase is consolidation. during this phase the fixator still remains but the turning of the pins stops to allow for bone consolidation. This phase is equal to the time it takes during the pin turning.

The last phase is casting and it lasts about a month. This allows for the bone to harden. I'll be looking forward to this day, as the fixator will come off!!

Caleb's Story

                                     
As I think back to the day I found out that I was pregnant with Caleb, I honestly can't remember a happier day.  I remember beaming in my kitchen as I read the POSITIVE pregnancy test. I already had another child, my first little boy and partner in crime, Zackery Robert, who at the time was six years old. I still smile as I remember how that year on Zackery's sixth birthday he made a wish for a baby brother as he blew out his birthday candles. Not very long after his birthday......Voilà! A new baby was on the way! We always told Zackery that Caleb was his special baby. And he believed it, too. His wish came true and he told everyone that he was responsible for the baby on the way. He was so ready to be a big brother and I was so ready to hold a baby again.

Between the 7th and 8th week of pregnancy I was involved in two car accidents, one being somewhat minor, while the other accident my car was completely totaled after someone slammed into the back of my car on a rainy day. This accident left me with severe whiplash and I was stuck in bed for almost a week. Other than the whiplash, I felt that I was okay, and the pregnancy seemed to be progressing normal.

At around 18 weeks pregnant I was sent to a perinatologist for an ultrasound, something that was routine for my Ob-Gyn, and at first glance the technician was able to tell that we were having a boy! We were ecstatic! I stared at the ultrasound screen in amazement as they measured the babies head, checked his heart and organs, and measured his bones. I was in heaven watching the the baby move around and I was completely oblivious to the fact that the technician was picking up on something abnormal. We eventually saw the signs on her face that something wasn't right and we were told that we needed to speak with the doctor. Anyone who has ever gone through an incident like this knows that this is the most heart shattering experience a  parent can go through. As my husband and I sat in the doctors office waiting for her to give us the results, a million thoughts were going through our heads. We had no idea of what to expect.

This was the day we found out there was something wrong with our baby's leg. The doctor had no idea what the deformity was but she suspected club foot. She assured us that it was common and very easy to fix through casting. As we dried our tears we focused on the fact that the baby was still very healthy and began planning for the baby.

The first time I ever heard the word fibular hemimelia was in the hospital after my son was born. As his defect was very noticeable, they took him for x-rays to discover that he was born completely missing his fibula bone. We were given numbers for specialists in the area and within a week we were scheduled with an orthopedic surgeon in our area to have a look at our precious baby's leg and foot.

*As far as the two car accidents I was involved in, every doctor I have spoken to has reassured me that this was most likely not the cause of Caleb's deformity although I have always had my doubts. It was during Caleb's critical period of development that they occurred, so the timing seems more than a coincidence although I will never know.


Caleb was a perfect baby from head to toe, every inch of him. The first ortho that we went to looked at Caleb's foot, took some x-rays, and told us that we were probably going to have to amputate his leg. I was hysterical! As I looked down at my baby, all I saw was the most perfect little leg, a little crooked perhaps and maybe a little shorter than the other one, but there was no way I could ever amputate it.
This is where the journey began!

After that first doctors appointment we researched like maniacs to find anyone anywhere who was specialized with Caleb's condition. Believe it or not, FH is extremely rare and most ortho's will see a handful, if that, of cases in their entire career. That is why amputation was suggested for Caleb.  Most orthos have little or no experience with FH so amputation is almost always suggested instead of treatment. Knowing what I know now I realize that amputation in some cases really is the better option. Prosthetics are pretty incredible these days and some people would argue that it is easier than undergoing a lengthening procedure. But in our case, I wanted the option. I wanted to find a doctor who had experience with Caleb's condition and then make a decision as to what we were going to do.

I can't remember how many doctors we saw and/or contacted regarding Caleb, but it was a lot. We were driving all over the place getting third, fourth, fifth opinions and then finally we learned of a doctor out of Baltimore who specialized in FH and treating limb deformities. His name was Dr. Dror Paley. In my heart I knew that if limb lengthening was going to be the route we were taking, it would only be by a doctor with extensive experience with the condition. I was prepared to pack us up and go to Baltimore for Caleb's treatment, but the next step was finding the right time to do the procedure.

The most important thing I have learned in my life is to follow your intuition.  I have always trusted my gut and looking back I see that I have always made the right choices, even if I didn't know it then. In regards to Caleb, I knew that rushing to surgery would have been a mistake. No one knows your child like you do, not even the most skilled surgeons, and I knew Caleb wouldn't be able to handle the surgery at such a young age, despite doctor's recommendations. Dr. Paley's team typically performs the first lengthening at around 2 but ultimately it is always the parents decision if they want to wait. I am truly glad we waited and I see now that it was the right decision for our family. I know that Caleb wasn't ready.

Two years ago we got the best news that anyone could ever ask for.......Dr. Paley moved his practice from Baltimore to West Palm Beach, a mere 1 hour drive from our home. I'm glad I followed my gut because we didn't have to go to Baltimore for treatment, Dr. Paley came to us!!! God's miracles are awesome if you are able to recognize them.

As Caleb's surgery is just 2 short days away on July 11th, 2012, I can't help but feel anxious that in 6 long months this will be behind us. I think we are ready for it as a family, and I think Caleb understands why we have made this decision for him. It will be a long and difficult road so keep us in your prayers during this time.

Getting the hang of it

I have to confess that I have never really considered myself good with words, or writing them down for that matter.  In addition, I am useless with anything that has to do with computers. Getting this blog up and running has been a bit of a challenge. But here it is.....and I am proud of myself indeed : )

The purpose of this blog is to share our little boy's journey with Fibular Hemimelia. As I expect most people won't know what this disease is,  this blog is being set-up for family and friends to get a better understanding of what Fibular Hemimelia is while also keeping everyone up to date with Caleb's progress. My greatest hope is that this site can offer insight for those families just beginning their journey with Fibular Hemimelia, as it is, and will be, a long journey.