Jacob's Journey with PFFD

Batman pays Jacob a visit!

Rachel — Sat, 29 Dec 2007 18:44:01 +0000

Wow October 2007 Batman arrives at the Hackerman Patz house in his Batman mobile to visit the kids. How cool is that! Jacob was so excited to meet Batman!

Update December 2007

Rachel — Sat, 29 Dec 2007 18:23:07 +0000

Jacob and Rachel flew to Baltimore on the 16th of December from Denver. Jacob had surgery the following morning to remove his fixator and a pin was placed at the top of his femur to stabilize it. Two hour later the surgery was a success and a removable cast was applied to Jacob’s leg. Dr. Paley gave us the thumbs up to return to Colorado the following morning just in time for Christmas. The cast is removable so that Jacob can shower which is very nice. We are all home as a family and enjoying the snow including sledding out our front door! The cast has to stay on until the 8th of January and then therapy starts again, slowly at first, to regain full movement of Jacob’s knee. Right now he is at 60 degrees and he will ultimately be at 100-110 degrees, by June 2008.

Merry Christmas and Happy New Year from the Colorado Katz Family! Jacob is wearing the cast under his pants and you wouldn’t even know it! The best present of all this year is a longer leg for Jacob! We thank God for blessing Jacob with a longer leg!

Update November 2007

Rachel — Thu, 15 Nov 2007 20:46:08 +0000

We all made it home after a four day road trip from Baltimore to Denver. Jacob is now back at school in first grade. Jacob attends in a wheel until the end of January. The kids at his school have been great! Jacob leaves school at 2:30pm so he can then attend physical therapy at Childrens Hospital Physical Therapy department in the afternoons. At therapy Jacob is regaining his full range of motion in relation to his left knee and hip. Jacob was at 42 degrees with his knee bends when we stopped lengthening and now he is at almost 55 degrees. This is awesome. He should regain about 5 degrees a month until his fixator comes off and then more rapidly after that. We just found out that Jacob will have his surgery to remove the fixator mid December and then he will NOT be able to weight bear at home or school for another month which would bring us up to the end of January. Physical therapy then continues to regain full movement of his knee and hip until June 2008. We are so proud of Jacob and we can all see a light at the end of the tunnel!

Update October 2007

Rachel — Thu, 15 Nov 2007 20:17:03 +0000

After four months of lengthening Jacob reached 3 inches of bone growth! We are now able to drive back across country to Denver as a family. Jacob’s fixator will still stay on for a month or so to allow the new bone to harden. We are excited to be going home!

Save a limb ride

Rachel — Mon, 24 Sep 2007 00:07:14 +0000

The 2007 Save-A-Limb Ride was just held in September. The ride is a fund raiser with the goal to save limbs from amputation and to preserve joints. To learn more about the event please click on the link Save-A-Limb Ride.

Rennaissance Festival Maryland

Rachel — Sun, 23 Sep 2007 20:40:19 +0000

We have approximately one month left in Baltimore to finish the lengthening. Jacob and Jessica and I are still here until we can re-unite with David and drive back across country to Denver, Colorado. This weekend the kids and I decided to go to the Maryland Renaissance Festival to do something fun and to take a break from the weekly hospital visits. The festival was awesome!

Pirate Jacob riding a pony.

Jessica and a baby medieval creature.

A knight on horse back riding in the jousting arena.

Fairie Princess Jessica

Pirate Jake

Fare maiden mamma.

Update September-Shoe Lift

Rachel — Wed, 12 Sep 2007 20:33:18 +0000

Today is a great day! Jacob was fitted for his very first shoe lift.

Jacob, Nurse Pam and Jessica are very happy.

Mom and physical therapist Kim are very proud. Jake has gained 5.5 cm and he will keep going with the lengthening to hopefully make it to 8cm.

Update August-Dr.Paley visit

Rachel — Tue, 14 Aug 2007 09:05:20 +0000

We just passed the half way point. Jacob saw Dr. Paley yesterday (shown below) and Dr. Paley measured 4.5 cm of new bone growth! That’s great news as Jacob is over half way towards our goal of 8cm.

Jacob is having some trouble with his knee bends. They seem to be the most difficult part of this whole process. The past few weeks his knee Range Of Motion (ROM) has been about 50 -55 degrees. If it drops below 45, we will have to stop lengthening. Dr. Paley has insisted that we get 65 to 70 by our next appointment in two weeks. Obviously, we don’t want to go home without achieving our goal of 3 inches, so we are working closely with th PT staff and have devised a plan that seems to be working. First, Jacob is on a sticker plan, where he earns stickers for varying degrees, like 60 would be 3 stickers. 25 stickers and he gets a cool toy, like an action figure. The other key to our success with knee bends seems to be “Return Of The Jedi” Jacob watches the movie right at the end when Luke defeats Vader, and the new death star is destroyed. It really motivates him, so who am I to argue with “Jedi.” Today Jake achieved sixty and we were thrilled, because if Jacob keeps it up, we won’t have to do knee bends twice a day. Believe me, it isn’t fun! I will upate soon on our knee bend progress!

Land & Pool Therapy

Rachel — Sat, 21 Jul 2007 09:04:13 +0000

Every day Jacob attends land and pool therapy at Sinai Hospital in Baltimore Maryland. At 1:00 pm Jacob starts with an hour of land therapy with Kim and her team to stretch all his muscles. Every day Jacob’s leg is becoming longer and he has already gained an inch of length. The exercises make sure that the muscles are stretching to keep up with the bone growth. It is important that his knee bends are 45 degrees or more through the entire lengthening process or the lengthening process has to be stopped. Right now Jacob is able to bend his knee between 65-75 degrees each time. That is is pretty good but the knee bends it is painful so one one hour before physical therapy we give Jacob pain medication to help him through it and he squeezes putty.

Next Jacob takes a quick shower to remove his bandages and clean his pin sites before being lowered into the pool for pool therapy from 2:00pm until 3:00 pm. Now he is ready for the pool.

Jacob with his pool therapist Jeremy and all Jakes pool buddies swimming under the water.

Update June-Surgery

Rachel — Thu, 28 Jun 2007 09:02:37 +0000

Jacob and his Mom & Dad, and sister Jessica set off on a road trip across country from Denver, Colorado to Baltimore, Maryland in early June 2007 to start Jacob’s journey towards having a longer leg. The surgery was carried out by Dr. Dror Paley at Sinai Hospital on the 15th of June. Mom had to put on special clothing to go into the surgery room with Jacob to help anesthesia. Jacob thought Momma looked like she was going to visit the moon! Four hours later Jacob’s surgery was a success and Mom and Dad were right there by Jacob’s side as he woke up in the recovery room, while Grandma Candy and sister Jessica waited in the waiting area. Jacob then spent the next three days in the hospital recovering from surgery.
The first few days were the worst dealing with the pain, but in no time Jacob was up and about on his walker with the help of a physical therapist even before he left the hospital. Our family spent ten days after surgery at the Hackerman- Patz House, which is a place specifically for families to stay while undergoing treatments requiring extended stay. This was a wonderful experience for all of us including seeing Jacob meet other children with shorter limbs. Jacob could see that the other children were pushing themselves around in their wheel chairs and walkers, playing video games, and participating in crafts and other activities. This was a very important mental step for Jacob and helped him to start healing and embracing the challenge of the lengthening procedure which had only just begun.
Every week day Jacob visits the hospital for one hour of land therapy
and one hour of pool therapy and then pin site care to change the dressings. A total of three and a half hours per day. On weekends Mom and Dad (David and Rachel) are responsible for changing the dressings and carrying out the physical therapy.