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.