Paley 5k Race

This weekend was an absolute blast. Caleb ended up raising $1,310 for the Paley Foundation. So exciting! Saturday, Dr. Paley had a special event at his house for the people who raised $1000 or more for the foundation. They had lots of fun games for the kids, fun prizes, and lots of yummy food. Dr. Paley's house was beautiful and it was especially nice to see everyone.

This morning, we were up at 4am for the Paley 5k race. I can't tell you how much we enjoyed this. We basically walked the whole 5k but it was an absolutely beautiful day. It was also fun getting to watch all the marathon runners. They were just incredible. The weather was just perfect. We got to hang out with Caleb's other therapist, Mike, and we had a lot of laughs. This will be a weekend to remember.

Before the race, 6:30 am

 

 

Watching the marathon runners. They were all very inspiring.

 

Paley Team in the blue shirts

Hanging out with Caleb's therapist, Mike

 We did it!!

 

 

Jennifer, Caleb's therapist

 

 



 



Saying Goodbye

Today was our last PT appointment at the P.A.L.L.I. Rehab. This was emotional day for both Caleb and I. Caleb had a lot of anxiety knowing that he was no longer going to be doing his PT with his regular therapists. He has really grown to love them all. We received our package for the new therapist and a t-shirt that says, "I survived P.A.L.L.I. Rehab" for Caleb. I was in tears. It really was quite an emotional day. But we are now on to a new adventure. It will be nice to cut down to 3 days of PT per week and it will also be great to be able to stay local. Thanksgiving is next week so we might actually get to enjoy the holidays.

Day and Night

When they tell you that things get much easier when turning stops, they aren't kidding. Turning has been done for the past two weeks, and already I have a new kid. Once the turning stopped, the focus, as it has always been, has been getting Caleb to zero. The amazing part of it all, though, is that Caleb has remained at zero for the last week, and what once was the hardest part of Caleb's day, is now not so hard anymore. Of course, Caleb always gets anxiety when they tell him he has to push his leg straight. It is psychological more than anything else now. I think it is taking him a while to realize that the hard part is now over. It is truly remarkable the changes we are already seeing. We have been working on videos to give to Caleb's new PT, which will now be 10 minutes from our house. Tomorrow will be our last day at P.A.L.L.I. Rehab. Caleb and I both are having anxiety about it. While it will be nice to no longer have to travel an hour everyday to PT appointments, we are really going to miss everyone here. Bitter-sweet : )

Caleb with his regular therapist, Jennifer.

A way to give back!

Hi Friends and Family! I want to express to you my sincere gratitude for all of the support that we have received these last few months during Caleb’s first limb lengthening procedure. These last few months have been the longest of my life (I can’t imagine what it has felt like for Caleb), but in addition to that they have also been life changing for our family and I can’t even begin to explain the ways in which Caleb’s life has been forever changed.

Yesterday, I am happy to report, was our last night of turning! Whoo hoo!! Today, Dr. Paley confirmed that he is very happy with Caleb’s progress and we are no longer lengthening or correcting his foot positioning. We have reached 6cm total in lengthening. We are in the next phase of the lengthening, which is called consolidation. We will be continuing with our weekly physical therapy and Caleb will have the fixator on for the next 3 months, give or take, but the lengthening phase is over. Thank you, God! From this point on, things should be getting easier for him. Thanks to all that have been following Caleb through my blog and/or Facebook these last few months. The support and love has been humbling.  You all have gotten us through a lot!  

On December 2nd, Caleb will be participating in the annual 5k race and even if we are pushing him in his wheelchair, he will be crossing that finish line alongside Dr. Paley, Dr. Paley’s team, and lots of other Paley kids. This is a very exciting event for us because it is our chance to give back to this great cause.

DONATE HERE:

http://www.paleyfoundation.org/2012-Palm-Beach-Marathon/Caleb

According to the March of Dimes™, 1 in 125 children are born with a limb deficiency and 1 in every 10 individuals receives the diagnosis of a rare disease. The Paley Foundation is committed to developing and teaching new techniques to save and reconstruct the limbs of children and adults and eliminating the need for amputation, whenever possible, among those who suffer from rare limb deficiencies and other complex orthopedic conditions.

The Paley Foundation strives to improve the lives of children and adults who suffer from rare and challenging congenital, developmental and post-traumatic orthopedic conditions throughout the Nation and the world.

In carrying out its mission, the Foundation seeks to:

1. Teach and mentor orthopedic surgeons throughout the world in the application of advanced techniques
2. Develop specialized treatments for children and adults with rare and complex orthopedic conditions
3. Advance public awareness of innovative medical procedures for the treatment of rare and neglected bone diseases, limb deficiencies and skeletal abnormalities.
4. Ease the burden on children and families who have sought such care. 

I know there are lots of organizations out there, but I have gotten to see firsthand the miracles that take place at the Paley Institute.  If anyone would like to sponsor Caleb by donating ($5, $10…..anything) we would really appreciate it. All donations go directly to the Paley Foundation.

The last phase of turning

I do regret that I haven't kept up with this blog like I intended to. It seems like these past few weeks have been filled with ups and downs. I really have been running myself ragged. I don't have any clue what has kept me going these past few months. It has been extremely difficult juggling all that needs to be done in a day, including but definitely not limited to; Caleb's daily PT appointments in WPB, doctor's appointments, pin turning, pin care, at home exercises and stretches, managing a household, managing three other children, keeping up with homework, dinner, laundry, etc., etc., etc,. Josh has been instrumental in keeping our household together. He is a bit of a clean freak so the house has not gotten completely wrecked during this time. I really have to remember how lucky I am for this.

These past few months I have thought of my grandmother frequently. While I haven't had her in quite some time (she passed away when I was 13) I have felt her presence more than ever before. I have also thought a lot about a poem that she introduced me to as a young girl, Footprints in the Sand. This poem has been very meaningful these past few months because it truly feels like we have not been alone in all this. We have been carried through this, like the single set of footprints in the sand.

Starting with Caleb's pin change in October, things started to get a bit harder for us all. Caleb wasn't feeling so good, PT was very difficult as Caleb was very tight the last few weeks of turning, the kids all got very sick, with meningitus, no less! But we have made it through. Thank God, I truly feel that the hard part is over.

Footprints in the Sand One night I dreamed I was walking along the beach with the Lord.

Many scenes from my life flashed across the sky.

In each scene I noticed footprints in the sand.

Sometimes there were two sets of footprints,

other times there were one set of footprints.

This bothered me because I noticed

that during the low periods of my life,

when I was suffering from

anguish, sorrow or defeat,

I could see only one set of footprints.

So I said to the Lord,

"You promised me Lord,

that if I followed you,

you would walk with me always.

But I have noticed that during

the most trying periods of my life

there have only been one

set of footprints in the sand.

Why, when I needed you most,

you have not been there for me?"

The Lord replied,

"The times when you have

seen only one set of footprints,

is when I carried you."

Mary Stevenson

Pin Change : (

Tuesday, Caleb had to have a procedure to remove his top pin and replace it with another one in a different spot. My poor baby was just sick about the whole thing. He hates being put to sleep. Here is a pic of the top pin prior to removal, and in my opinion it looked great in comparison to previous weeks......................unfortunately,  the x-ray told a different story : (

 

This is Caleb in the waiting room before the procedure. My gorgeous little guy : )

 

 

 

You can't tell from the picture above, but this procedure was really tough for Caleb. He was hysterical before they wheeled him back for surgery. Josh, again, went back with him while they put him to sleep. I still can't bring myself to go back with him, as selfish as this sounds. I just can't bare to see Caleb being put under. I don't want those images in my mind. The surgery went fairly quickly, about an hour, and I was in the recovery room before Caleb woke up. He had a hard time waking up from the anesthesia. He started screaming in pain and it was very hard to calm him down. The nurse gave him three doses of different pain meds to try and manage his pain and within 15 minutes he started to calm down. We were able to go home within a couple of hours after Caleb's pain was managed and he was able to keep fluids down.

 

 

 

This is 5 days after the top pin removal.

 

 

 

This is a current picture of his fixator

 

 

 

This is the new pin site (the pin closest to the left of the pic)

 

 

 

This was a stressful week to say the least! I honestly don't think I have ever been so exhausted in all my life. Despite the unexpected set-back, I'm happy to say that Caleb is doing great and is almost back to normal. Looking forward to an uneventful week next week. At least that's what I'm praying for!

 

5 cm!

It was a happy day October 12th to finish our first turning schedule. Truly, this has felt like the longest three months of my life. Our appointment with Dr. Paley was scheduled Monday, October 15th, to reassess further treatment for Caleb. Every milestone is exciting as it gets us closer to the end, so even though we knew we would probably be getting another turning schedule, we at least reached our goal of 5 cm. As with all of our other appointments with Dr. Paley, it was another extremely long day. We are completely used to this by now and the kids and I make the best of it. Our PT appt. was scheduled for 12pm and our appt. with Dr. Paley was scheduled for 3:45pm but we signed in at about 1pm and hung out in the waiting room. I believe we saw Dr. Paley at about 6ish. Through x-rays, Dr. Paley confirmed that we did indeed lengthen 5cm. I can't tell you how exciting it was to see his before and after on the x-rays. It really choked me up. In such a short period of time we have accomplished a lot. For the first time ever Caleb's legs almost look even! It is surreal. We did, however, get some unexpected news regarding Caleb's top pin. In previous posts I have mentioned that we have been having a lot of problems with it. It is constantly infected, granulated tissue pops out of the site and it is really loose in the bone. Dr. Paley decided that he needed to change out the pin and put in a new one ASAP. He scheduled it for the next day and I had to explain to Caleb that he was going to have to be put under for this procedure. This was very hard news for him to hear. He is terrified of "going to sleep". We were also given a new schedule to fix an over-correction of Caleb's foot and to lengthen an additional 1cm. This new schedule will be done November 4th. Below are some x-ray pics:

Day Before Surgery: Showing Discrepancy

 



 

5 Centimeters: Both Legs Almost Even

Bone Growth: Fuzzy Area Above First Fixator Ring

 



 

My Little Cuties Waiting To See Dr. Paley

 

We briefly discussed that Caleb will still have a discrepancy at the end of his lengthening. We have always known that he will need additional procedures. Caleb's projected discrepancy at full grown is 10.2 cm. We will shortly have 6cm out of the way : ) Dr. Paley measured Caleb's femurs and mentioned that there is a 1 1/2 cm difference between the two. This was the first time that we had ever discussed his femur. Dr. Paley said that with such a small discrepancy, Caleb will not have to lengthen his femur as we will compensate for the difference through the lengthening of the tibia. This is good news. We did a growth predictor and Caleb's projected height at full grown is 5'11''. Same height as his Daddy. We will discuss our options when Caleb is older. For now, it is so amazingly awesome to have this first part almost over. Who knows, maybe even by Christmas I'll have a little boy out of a fixator. Wouldn't that be the best Christmas present of all?  ****Daydreaming

 

Here are some waiting room pics..........you have to keep busy somehow : ) I love my silly kids

 

 



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.

 

 

Infection, Infection.......GO AWAY!

While some say they have been blessed to have never experience a pin site infection throughout their lengthening, my little Caleb falls at the other end of the spectrum. He has had non-stop infections since about two weeks post surgery. We are hypervigilant when it comes to our daily cleanings but at the same time we are a busy family of six, with two big dogs and two kitty cats. The other day I even found a doggy hair stuck on Caleb's pin. Yuck! Caleb loves to cuddle with his puppy so it is impossible to keep Caleb and the dogs separated. I also tend to think that Caleb's body just does not like the pins and wires. One wire, in particular, has been a great source of pain and discomfort for Caleb since day one. This wire is located in scar tissue where he had a previous surgery for a tendon release and it oozes all the time. Caleb had been on antibiotics since our first  post-op appointment almost a month ago. My poor little guy. His body is taking a beating, for sure.

I truly feel that the hardest part of the lengthening process for us is keeping these infections at bay. He feels severe pain when they get infected, physical therapy is miserable and he cries all night and can't get comfortable. Around two weeks ago Caleb complained of SEVERE pain in his knee and we had to cancel his PT for the day and take him for xrays. It so happened that we were also scheduled for our 1 month post-op appointment with Dr. Paley but it also meant that we were going to have to wait a LONG time for anyone to see him. I had been warned but I could have never expected to be waiting for as long as we did. Our appointment was scheduled for 3:45pm but due to Caleb's intolerable pain in his knee we signed in at 1:30pm. We took x-rays fairly quickly and we stepped out for a quick bite to eat as the office was completely swamped and I knew we would be there for a while.  We were back at 2:30pm and waited as Caleb's pain intensified even more. It was so bad that the roxicet was not doing the trick and I had to give it to him every two hours instead of every four to keep him from screaming and crying out in pain in the waiting room. Would you believe that we were not called back to a room until 7pm that evening? I was so upset and felt that Caleb was really neglected that day. I know the office was swamped and I didn't want special treatment for Caleb but he was in severe pain. Someone should have been called just to check on him to make sure he was okay. I was in tears! This was by far one of the hardest days we have experienced. When we finally did get seen by Dr. Paley he decided to cut back on Caleb's turning schedule which meant that we were now doubling our time for turning. Of course I want this over for Caleb as quickly as possible, but I also want the best outcome for Caleb and the least amount of pain. Slowing the bone lengthening allows for the muscles and tendons to catch up a little better.

We never really could figure out why Caleb had this severe pain in his knee but my Mommy instincts tell me that it was probably infection related as this was the spot for his first infection, at the site where they inserted the 8-plate. Within a week of this appt. Caleb's knee started oozing puss and stitches expelled from the incision line.

As of now, Caleb's knee is looking really great but he has a pin that looks a bit gooey and the wires are still a major complaint for him. PT was so hard for him today and he was screaming his head off. I haven't cried for a while during PT but today, I cried. Tomorrow we have an appointment with a PA so hopefully Caleb is doing well. It is true what they say that it gets harder the second half of the lengthening.

The Brace

Due to Caleb's difficulty with getting his knee straight, we have had to get a special brace for him to wear at night and as much as he can during the day. Again, the main concern with tibial lengthening is to make sure that the knee does not develop a contracture. A contracture would result in the doctors to stop the lengthening process all together so it is very important for Caleb to be able to get his leg straight. The brace is made by a company named Dyna-splint and so far they have been wonderful to work with. This new piece of hardware does come with a pretty price tag of $1138 and because the company is based out of Maryland, our insurance does not cover the cost. Dyna-splint will work with you by splitting the bill over a six month period. Lauren, the rep for Dyna-Splint makes everything very convenient as she comes to you at the clinic to make the brace and to follow up with any other questions or concerns. I have had to call her to the clinic a handful of times because of various minor issues with the brace and she has come before or after Caleb's PT appointment to keep it convenient for us.

Caleb is not at all happy about wearing the brace because, of course, he likes being able to bend his knee, but in addition to that, it is a bit cumbersome and uncomfortable. The brace does allow for a bit of slack so Caleb can bend his knee a little bit but he is just miserable with it on. I have been giving him medication (2mg of Valium and 3mg of the Roxicet) in the evening to make it tolerable as he sleeps. I never ever get used to the fact that I have to give these heavy drugs to my child but the doctors and therapists have assured me that the medication makes this whole process so much easier on the child.  In addition to medication, I have set up a chart in my house that is similar to a 'chore chart' but it also contains additional goals such as wearing brace, strut turns, pin cleaning. Every day, Caleb earns a star for wearing his brace (6 hours during the day and at night when he is sleeping), he earns a star after all of his turns and after his pin care. I also have a few other goals as far as chores and behavior for Caleb and his siblings and at the end of the week, everyone has the opportunity to earn gifts out of my treasure bag. The amount of stars they earn determines the amount of prizes they get. This might seem  trivial in comparison to all of the hard work that Caleb is doing throughout the week, but it has been working for us. I throw in mostly dollar store items or inexpensive items that I pick up along the way. All the kids participate, and they all love it. My advice........GET A TREASURE BOX!!

First Post-Op Appt.

Last Wednesday was our first post-op appt. at Dr Paley's office since the surgery. We didn't get to see Dr. Paley at this appointment but instead we saw his PA, Servando and he went over all the x-rays. I am very happy to report that we have already gained 1 cm in length! Hooray! I can't tell you how excited I was for Caleb. He has been working hard and we are celebrating all the milestones; however small they may be. Here are a few pics of Caleb's x-rays:

To celebrate our 1 cm of growth we made a quick trip to the Palm Beach Zoo about an hour and a half before it closedg. We raced through the park but we did have some fun and I have promised Caleb that with every centimeter he gets a special trip to the place of his choice. He has been excited about that! I'll post some pics of the zoo once I get them off the camera.



A Time For A Little Fun

We were very excited to be invited on a boat over the weekend as a way to unwind and let loose a little. We had a wonderful time and were so grateful for the invitation. We enjoyed the beautiful weather, caught some fish, and even saw some dolphin!



 Nora and I were having fun and playing it up for the camera.

It's amazing what a little fun does for the spirit. We ALL needed it.