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!!