Almost at the end of turning

Not that we are counting or anything, but Caleb has only 16 days left of his turning schedule : )     Chances are that we will probably continue to lengthen and get another turning schedule as he will only achieve 5cm of growth at the end of this schedule and we would like to get 7cm. It is still exciting to almost cross this milestone, though. As John Robb, Dr. Paley's PA once said to us.....5cm is the goal with Caleb's lengthening......everything extra is bonus points. We would love to get an extra 2cm even if it means we would be turning for another month and a half. Once Caleb is finished with the turning stage, we will then be in the consolidation phase, and PT will be cut back to 3 days a week. During the consolidation phase Caleb is still in the fixator but we are no longer turning struts. His leg is starting to look really long these days. It's kinda fun to see the progress that we are making. I even think he looks taller! Technically he is getting taller........ 4cm to be exact!! We had our 2nd appt. with Dr. Paley two weeks ago. Our appointment was scheduled for 8:45am but we got there around 9ish. You really have to come prepared with a whole lot of patience when you have an appointment with Dr. Paley. We didn't get to see him until almost 4pm. My kids were just about bonkers by the time we left.

There were a lot of new patients in the waiting room that day with their babies asking all kinds of questions to us 'seasoned' mom's and sitting there waiting to just catch a glimpse of Dr. Paley. I guess he is sort of a celebrity in our world......the limb deformity world.  I actually felt like things were starting to come full circle. It was really just yesterday that I was sitting in their seats.....so full of questions......and scared beyond belief. Here we are today, and minus a few bumps in the road, Caleb is doing fantastic. I wish I would have known that then. Dr. Paley's team is the best........you have to trust in that and get ready for the long road ahead, but know it will all be okay.

Caleb's first fall : (

Today, Caleb had another terrible day in therapy. It was very painful for me to see him in such pain  and it took a LOT for the therapists to get his knee straight. I feel just terrible for him that he is taking such giant leaps backwards, especially since we were doing so wonderful the last couple of weeks. Today, we were scheduled with a therapist that we had never worked with before and right off the bat she noticed that Caleb's top pin looked infected. She suggested starting him on antibiotics right away. Caleb in this past month has been having a lot of problems with this top pin site. First, granulated tissue pops out at the pin site so it is yucky and gunky most of the time. Second, the bone at this pin site is getting loose, a somewhat normal symptom of prolonged exposure to the fixator. Dr. Paley and the PA's haven't been concerned with it as of yet but today it looked especially nasty. This could be the reason for the setback. It is possible that Caleb has had an infection brewing. We will see by the end of the weekend if there is any improvement after he gets a few rounds of antibiotics in him.

To make matters even worse, Caleb took a nasty fall on the tile this evening. One of my girls got the floors pretty wet after her bath tonight and as Caleb was getting ready to take his bath he slipped and cracked his body hard onto the tile floor. I didn't see it, but I heard it. It was a bad one. My poor baby was screaming for a good 30 minutes. My husband broke down in tears and I tried very hard to keep it together. Honestly, this was the last thing his poor little body needed. We are praying that Caleb starts to improve again. His spirits are down this week and he is feeling pretty bad.

The ups and downs

With the last 2 weeks being smooth sailing for Caleb, I haven't had a whole lot to write about on this blog. Caleb has been doing terrific in therapy, getting full leg extension with his knee almost every PT session, and infections have been pretty much kept at bay. Unfortunately, Caleb has had a bit of a set-back stemming from an injury over the weekend. I can't help but feel a bit guilty. Last Friday, some friends of ours joined us for a poolside BBQ and we let the kids hang out in the pool for the evening and Caleb got to have a bit of fun. Perhaps we were there a bit longer than we should have been and as it got dark, a big kid smashed Caleb's fixator into the side of the pool while they were swimming. Of course, it was an accident and the kid felt really bad about it. I probably should have taken Caleb out of the water as it got dark since it is harder for other kids to watch out for him. Unfortunately, his leg has been in pain ever since and therapy has been miserable. He is having a hard time getting his knee straight, only getting it to -12 degrees (0 degrees is a perfectly straight leg, -12 degrees is 12 degrees away from being straight). Caleb had to miss school one day this week and he is having a hard time walking. This is the first time we have had to use his walker since the beginning of the surgery. It is so frustrating to back-track. We have done xrays to check for anything suspicious but everything looks okay. I hope this will be behind us soon.

 

 

Remembering some of the happier fixator moments : )

 

Chuck E. Cheese

 

Build-a-bear

 



The Miracle Workers

With today being September 11, I sat today and contemplated the significance of such an important day.  I will never forget the tragic events that changed my life forever 11 years ago, or forget about the family friend that lost her life to cancer 12 years ago, and although these events are getting further and further away, the wounds still feel somewhat fresh. But instead of being sad today, I made a conscious effort to think of all the things that I am grateful for. I will never forget the acts of heroism that I witnessed on September 11th or the fact that I got to witness human kind at its very best on that day and the days following. I also have my mother-in-law to thank for making 9/11 a happy day as today is her 60th birthday. Happy Birthday, G-Mommy! We are 2 months post-op from Caleb's July 11th surgery and I couldn't be more proud of my amazing son and all of his hard work. Of course, we would not have been able to do this without the love and support that has poured in from so many.  We have been blessed beyond belief.

With that said, I feel it is fitting to express my sincere gratitude for all of the physical therapists miracle workers that have been working with us since Caleb's surgery. The PT's are the most caring and loving individuals I have ever had the opportunity to meet. Caleb and I look forward to spending time everyday with the people that we have built relationships with these past couple of months. Honestly, Caleb LOVES therapy and LOVES all the therapists!! We have spent some time with almost all of them and they are all fantastic.....different in their own ways......but equally wonderful. I cannot say enough about our regular therapist, Jennifer. Since working with Caleb, she has really motivated him to work hard and try his very best. I enjoy seeing them work together as they really do make a great team. It takes a special individual to do what these therapists do on a daily basis. They have to push everyone to their absolute limit, yet they do it in such a compassionate way. God puts miracle workers on the planet......people who dedicate their lives to helping others. Walking into the doors of the Paley Institute you are literally surrounded by these people. It really is a special place.

Caleb has been so inspired by his therapists that he now wants to be a physical therapist when he is older. It puts such a smile on my face to hear him say this. I tell him, "Go for the gold.......be an orthopedic surgeon like Dr. Paley!" (lol) but he tells me he doesn't want to cut people open....he wants to help people after their surgeries. God love him. This surgery has indeed changed us all forever. So much positive can come out of a negative situation.........

Caleb working hard in PT

My little Nemo

Tonight my husband put on Little Nemo for my 2 year old daughter and we sat down and watched it together. I obviously LOVE that movie and there is one line that always reminds me of Caleb's experience with FH. It's the part in the beginning of the movie when one of Nemo's friends inquires, "What's wrong with his fin?" and another friend comments, "He looks funny!". Nemo's dad, Marlin,  replies, "He was born with it, kids. We call it his lucky fin". Marlin and Nemo in that moment of the movie seemed so proud of that little fin, as I have always been so proud of how my little Caleb has always accepted his 'little fin'.  I can remember all those times when someone asked Caleb and I why he walked so funny, or why he was 'limping'. People were never rude or mean, just curious. When Caleb was a baby, his limb length descrepancy was minor and sometimes I even thought it was not really noticeable, but as he has grown we have also seen his descrepancy grow and this last year we knew that we had bought ourselves enough time before the surgery had to be done.

Today, Caleb's fixator is quite the spectacle wherever we go. I think this does take getting used to. Some people are almost rude and stare at Caleb's fixator without making one second of eye contact with him or even just giving him a nice smile. Others come up to us and ask sweetly how he hurt himself over the summer and Caleb always replies, "I was born like this". People never really know how to respond to this answer, but it saves a lot of conversation time with lots of strangers : ) Of course, he wasn't born with a fixator, but because of HOW he came into the world, he has to now wear one. I always appreciate when people come up and talk to us instead of just gawk. His fixator is a curious thing and I would expect people to want to know what happened to him. I just like when people treat him like a normal kid and take the time to actually talk to him.

We made the decision that we wanted Caleb to start school during his lengthening, but he only goes for 2 hours each day. We have been blessed that the school was so willing to work with us and it is so great that he gets to have a little 'normal-ness' throughout the day. Of course, I was a little nervous how kids would respond to him and even more concerned with how he was going to handle the extra attention but I am happy to say that kids are so wonderfully accepting at Caleb's age. The first day of class I walked him in and instantly kids started asking him "Caleb, what happened to your leg"?! I asked the teacher if I could explain to the class what had happened to Caleb over the summer just to help relieve some of the pressure off of him from having to explain to everyone what happened to him. I explained that Caleb was born missing a bone and that over the summer we had a special surgery to help correct  his foot and leg so that he can soon stand up tall and have two legs that are the same length. And that was pretty much it. Once the kids were told about Caleb's surgery, they left it at that. Hardly anyone in his class talks to him about it and honestly I'm not even sure if they even notice his fixator anymore. He has a fixator cover on his leg so they can't see any pins and wires. I feel we made a great choice as far as timing for this surgery since I think kids are pretty tolerant at his age. As kids get older, I would imagine that they tend to get more self-conscious about themselves and might have a harder time being 'different'.  About a week ago I opened up Caleb's backpack and found the most precious thing I have ever seen......a picture that one of Caleb's friends drew for him.

 

 

Notice the GIANT hug and Caleb's fixator.

 

 

This drawing completely made my day and it will probably be framed at some point. It reminds me just how accepting and wonderful little kids are.