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