2nd Lengthening

April 19, 2005 Week of 4/24/2005 Week of 5/1/2005 Week of 5/8/2005 Week of 5/15/2005
Week of 5/22/2005 Week of 5/29/2005 Week of 6/5/2005 Week of 6/12/2005 Week of 6/19/2005
Week of 6/26/2005 Week of 7/03/2005 Week of 7/17/2005 Week of 7/24/2005 Week of 8/28/2005
September 19, 2005 October 21, 2005 January 18, 2006 July 13,2006 February 08, 2007
August 07, 2008 March 16, 2009

!! Sinai Hospital – April 19.2005

Dr. Dror Paley, Dr. John Herzenberg, and Dr. Shawn Standard are doctors at the International Center for Limb Lengthening at the Rubin Institute for Advanced Orthopedics at Sinai Hospital in Baltimore Maryland.

Zoë had her second lengthening surgery on April 19, 2005. The surgery started at 7:00am and she was in recovery by 1:30pm.

The anesthesiologist, Dr. Monika Agree, called me on my cell phone every 1.5 hours to give me and Irene updates – this was a huge relief. Marilyn Richardson Muller, the Pediatric Patient Care Coordinator spent time with us and the other families during the morning letting us know what was happening in surgery.

Dr. Paley came out about 12:00pm to tell us that Dr. Standard was just finishing up with the knee bar and lower rings. Dr. Paley also told us that they inserted a rod in her femur to add support during and after lengthening since about 40% of the patients get a fracture after lengthening. He told us that Zoë should be out within the next hour or so.

Zoë had an Orthofix external fixator and a rush rod placed in the center of her femur. The external fixator is drilled through 6 places in her femur and 3 places in her tibia.

Zoë after surgery.
First Pictures of the Orthofix device.

Zoë was is her room by 3:00 PM and rested comfortably with an epidural in all night.

The next day, Zoë was still very sleepy and groggy. She was complaining that her eyes hurt and she could not move her head. Irene also noticed a major case of foot drop.

We alerted the nurse and she called the anesthesia department. The Anesthesiologist instructed the nurse to lower the epidural from 10 to .4 and then finally to shut it off.

The epidural was off for about 6 hours before Zoë started to respond and her foot drop stopped on both sides.

Dr. Paley and fellows came to visit that night and remarked on how well everything looked. He instructed us to begin lengthening on Sunday April 24, 2005 at a rate of 4 turns per day. He also told us to insert the knee bar on Sunday. Zoë was permitted to walk and put weight on the leg as tolerated.

An anesthesiologist came at 10:00pm that night and removed the epidural. Zoë screamed at the tape removal but never noticed the epidural tube being removed. He also added a pain pump with Morphine and instructed Zoë how to use it.

Dr. Agree came by at around 10:30pm from her shift in another part of the building. Dr. Agree spend a few hours with us and explained Egyptian mythology and even taught Zoë how to create origami!

The next morning Zoë ate Sushi for lunch!

Zoë eating Sushi for Lunch

Zoë did so well that the Physical Therapist came by to make sure Irene and I knew how to do the exercises at home and we were release from the hospital. I signed a lease for an apartment that morning and we moved in.


The Therapist came to the room and had Zoë exercise her knee and instructed Irene on the exercises that she will need to perform every day in addition to the therapy at the Sinai Rehabilitation center.

The Sinai Rehabilitation program is run by Anil Bhave and has been awesome. The therapist are excellent and know exactly how to treat the patients with external fixators.

The Therapist gave Zoë a special pillow to keep between her legs while sleeping or resting.

Pillow for keeping legs apart
Zoë therapy in Hospital

Video In the Pool#1

Video in the Pool #2

Video in the Pool #3

Video in the Pool #4

Video in the Pool #5

Week of 4/24/2005

We started distraction (turning) on Sunday April 24, 2005. The rate is 4 turns per day or 1 millimeter per day. We were also instructed to insert the locking knee bar on the same day.

On Tuesday we noticed that the device that holds up the knee bar moved and was at a strange angle. We contacted the Physicians Assistant, Christopher Fisher. He met us in the clinic and corrected the original bar. Chris added a second bar to the lower pin to support the knee bar and prevent it from moving.

First Follow up

x-ray with knee bar in.

On Wednesday, Zoë started complaining about knee pain. We moved our appointment to Thursday and met with Dr. Standard. Dr. Standard added a new knee bar that can be adjusted and advised us to place the knee bar in and move it a couple degrees down if she complains of pain and gradually move it back up as tolerated.

New adjustable knee bar

Zoë is walking with the walker and Dr. Standard advised us to keep the Knee bar in / out every 2 hours, while sleeping, and while walking. Zoë also had a splint made to kept her foot flexed while resting or sleeping.

Week of 5/1/2005

We all came back to New York for Greek Orthodox Easter (5/1/2005). We spent time with all of our families and had an enjoyable weekend.

Irene returned to Baltimore on Monday with her mother and Zoë.

Zoë started at The Sinai Rehabilitation Day Hospital program on Monday (5/2/2005). She spends Physical Therapy sessions on land and in the pool. The therapy is vital to making sure that the muscles and nerves stretch along with the bone. It is very painful with the knee being exercises. Zoë is able to bend 90 degrees.

Zoë bending her knee during exercises.

On Tuesday 5/3/2005 Zoë started complaining of burning on the top most hip pin. The nurse investigated and per instructions, Zoë had to start on antibiotic immediately. An infection can spread or infect the bone and is one of the biggest risks in the external fixator and lengthening process.

Physical therapy is getting more painful. Zoë wrote a song / poem during therapy to distract her mind during the pain:

“Can you feel the sadness deep in my bones. I feel that way because I’m all alone, All my friends are there at school when I’m here…

Because…I get all of the pain. There truly is no difference between my tear drops and the rain. I know the day will come when I have my fun!- I will run away with it and forget that I had the pain to begin with.

When something went wrong it doesn’t mean I am not strong”

Zoë came home on Thursday night so she could attend a few family events this weekend.

Week of 5/8/2005

Zoë had a pretty rough week at therapy. She started going to therapy in the morning instead of the afternoon and Pool Therapy and Pin care immediately afterwards.

Zoë had a few episodes of pain late at night on Wednesday, Thursday and Friday. Irene gave her Tylenol and had to give her Roxicet (Codeine) on Friday Morning at 3:00am. Zoë also hyperventilated during pin care on Thursday because of the pain.

Leda and I went to Baltimore on Saturday and our friends with our God son and his sister and brother came down to visit. We had a very enjoyable time at the National Aquarium in Baltimore and the Port Discovery Center in the inner harbor. Zoë’s spirits were high especially with the visitors.

Week of 5/15/2005

2nd Follow up

‘Zoës X-Ray showing 2.2 cm gap.

On Monday 5/16/2005 Zoë had her second follow up with Dr. Paley. As you can see from the x-ray above Zoë got 2.2 CM of length already! This is almost an Inch (1 Inch = 2.54cm). Zoë was able to get 95 Degrees of knee bending in the pool during therapy.

Zoë on the underwater treadmill at therapy.

Dr. Paley told us to reduce her Shoe Lift (currently 6.5cm) down 1 inch.

Zoë shoe before and after 2nd visit.

Zoë picked up the modified shoe on Tuesday and was so excited. They almost look even!

Zoë started with the tutor at the Day Therapy program. The teacher gave Zoë homework the first day.

Therapy was easier this week and Irene kept them busy after therapy with trips and projects. Irene and Zoë also attended Bingo night on Wednesday at the Hackerman-Patz house located on the Sinai hospital property and provides temporary residence to patients. Zoë won Leda a stuffed animal.

Irene and Zoë returned to New York for the weekend.

Week of 5/22/2005

Irene, Zoë and Irene’s mom went back to Baltimore early Monday morning. Zoë was having a lot of pain in her thigh. Mostly muscle.

Zoë attended a group therapy session on Tuesday night organized by the Sinai Rehabilitation program. It was for children over 8 years old and was helpful for Zoë to discuss her feelings.

Zoë is still experiencing muscle pain every night. We give her Tylenol to stop the pain.

On Wednesday May 25, 2005 Zoë was given her report card on the one month anniversary of her going to therapy. Her therapist, Moshe, gave her a 100%. She was thrilled.

They all came back to NY on Thursday to miss the traffic for the Memorial Day weekend. On Friday Irene, Zoë and Leda went to the Mall and bought a new pair of sneakers for Zoë.

These are the first pair of shoes in Zoë’s life that will not need to be modified!

Week of 5/29/2005

Irene and Zoë went back to Baltimore early Monday morning.

This week is Zoë’s Birthday week. Her 10th Birthday is on Wed, June 1, 2005. Irene celebrated Zoë’s birthday by bringing cupcakes and croissants to therapy. They also made goodie bags for all of the children in therapy. Zoë’s therapist, Moshe brought in a box of donuts to surprise her, she was thrilled.

Zoë’s Birthday hat she wore all day on June 1, 2005.

Leda, Irene’s mother Dorothy, and I drove down to Baltimore to have dinner with Zoë and Irene. Zoë wanted to eat Crabs for her Birthday so we went to Phillips in the inner harbor.

Zoë cracking Crabs for her Birthday!

The last turn of Zoë’s screw on her birthday was the last turn we could make. The screw was so tight I thought I broke it!.

The next morning we went to therapy and asked Tony to check it out.

Tony had to replace the original screw. The screw only turns about 4cm and we had reached it. Tony got his tool box and locked down the top part. He then had to back off the screw that I had tightened and removed the piece. Tony replaced it with a new longer screw, luckily he found one that had the locking tab.

Tony checking Zoë’s screw.

Changing Zoë’s screw. It’s not really painful. Tony was making Zoë laugh because she was screaming and he did not even touch her.

3rd Follow up !!!

‘Zoës X-Ray showing 3.8 cm gap.

On Thursday 6/2/2005 Zoë had her third follow up with Dr. Standard. As you can see from the x-ray above Zoë got 3.8 CM of length already!

Zoë Therapy report showed:

Hip PROM Flexion abduction: 30 Flexion: 95
Knee PROM Flexion: 90 Extension: 0
Ankle RROM Dorsiflexion: 15

Dr. Standard said she did not need to wear a shoe lift on the shoe. She has been wearing a internal lift that goes under her heal and raises her leg about 1 cm. Dr. Standard said she was a model patient. Our next appointment is on June 16th at 2:30 PM.

Leda, Dotty and I left for New York after dinner.

Irene and Zoë left on Friday night to come home for the weekend. Zoë and a few of her best friends and cousins went to Medieval times to celebrate her birthday.

Week of 6/5/2005 !!

Irene and Zoë to Baltimore early Monday morning.

They all came back to NY on Thursday to miss the traffic on Friday night and plan Zoë’s birthday party on Saturday June 11, 2005.

On Friday June 10, 2005, Zoë made a surprise visit to her 4th grade class. The students were happy to see Zoë. Zoë stood in the front of the class and showed everyone her fixator and explained the device, the procedure and what she does at therapy.

Zoë explaining her surgery and therapy to Mrs. McFadden‘s class.
Zoë brought “Lemon Sticks” from Baltimore for the class.

Week of 6/12/2005

Irene and Zoë went back to Baltimore early Monday morning.

Zoë started to experience pain on her skin more than the usual itching and tightness that she normally feels. The skin is really starting to rip in a tear drop shape around her thigh pins.

On Wednesday Night Irene and Zoë went to the Hackerman – Patz House and made a craft for Father’s Day.

Zoë and Irene met a boy named Seth that we knew from Dr. Paley when Zoë was 3 years old. Seth was having a lengthening and is now back for another lengthening. He told Zoë he remembers her and her sister singing all the time. He recalled his favorite Zoë song as ” I’m too sexy for my ilizarov, too sexy for my ilizarov” that she used to sing to the tune of the Right Said Fred tune.

4th Follow up !!!

On Thursday 6/16/2005 Zoë had her third follow up with Dr. Paley. She is now at 5cm of length. The Skin irritation is normal and is expected. The Muscles, Nerves and skin all need to stretch. This get more painful after 5cm. Her knee bending is between 85 and 90 degrees.

We are to keep up the turning and go back to clinic in 10 days. Next appointment is scheduled for Monday June 27, 2005.

Zoë’s Xray showing 5cm gap.

Zoë doing a handstand in the pool at therapy.

Week of 6/19/2005

Irene and Zoë went back to Baltimore early Monday morning.

This was the last week of the Tutor. Zoë completed the remainder of her lessons and was happy that there would be no more homework!

On Wednesday Night Irene and Zoë went to the Hackerman – Patz House and played video games and sang karoke.

They came home on Friday to visit Zoë’s grandfather who is in the hospital and to celebrate his 74th Birthday.

Week of 6/26/2005

Irene, Zoë , Leda, and Dotty went back to Baltimore early Monday morning.

5th Follow up

Monday, June 27, 2005 – Clinic was crowded today. We had a 12:30pm appointment and did not see Dr. Paley and staff until almost 5:00pm.

Dr. Paley was very pleased with Zoë’s Therapy report. She is getting 85 degree bending. Dr. Paley said he has never had a patient that got this degree of bending at this amount of length.

Zoë is at 6.3cm today. We are still going to go for 8cm and We asked if it would be possible to go more that this. Dr. Paley said he once got a patient to 13cm but it was very hard.

We will go back on July 11, 2005 for a follow up.

Zoë’s Xray showing 6.3 cm gap.

On June 28, 2005 we notified the landlord that we will not be re-newing the lease after July 21, 2005.

Irene and everyone came home on Friday for the Forth of July weekend.

Week of 7/03/2005

Zoë grandfather (Papou),Eugene Ferranti, died on the morning of July 2, 2005. We did not return to Baltimore for the entire week for the viewing and funeral. Irene did Zoë’ therapy every morning that week.

Week of 7/10/2005

6th Follow up

7/11/2005 – Irene, Zoë, Leda and Dorothy left for Baltimore early Monday Morning for Therapy. I went to work in the morning and then left to go to Clinic. Irene signed in around 12:00PM and I arrived about 2:15pm for our 2:45 appointment. Clinic was packed. This may have been the busiest we have ever seen it. The RIAO was closed on July 4, 2005. Each doctor must have had 50 patients in the waiting room. We were rushed into xray at about 4:30pm and instead of the 2 usual x-rays, one standing and one side view, Zoë was asked to lay down, a small film was placed at an angle under her leg and that was all. We were not put into an exam room until after 5:00pm.

We did not see a resident, Dr. Paley walked in and said the bone looks great, asked if we were still distracting (turning the screw) and was surprised to hear us say “yes, 4 times a day”. He said oh that’s ok. we will probably stop next visit. Zoë will have approximately 8.8 cm and that was our goal. Dr. Paley asked what Zoë’s original discrepancy was estimated and I said I think between 19cm and 23cm. He said great we will stop at 8cm and then stop the growth plate for the rest of the length. I reminded Dr. Paley that before surgery this was not an option but he said he wasn’t sure. We left feeling very confused.

Zoë’s Xray showing 7.4 cm gap.

Week of 7/17/2005

Irene, Zoë, Leda, and Dotty went back to Baltimore. The pool was closed down for maintenance and Zoë did not have to start land therapy until 10:00am. They spent the week taking video of Therapy so we could continue here in New York and moving out of the apartment we had rented in Baltimore.

On Wednesday, July 20, 2005 We vacated the apartment in Cross Keys and came back to New York.

On Friday I spoke with George, one of the PA’s. I expressed concern that Dr. Paley did not have the first part of Zoë’s cart from Kernan Hospital (The previous place for the Limb Lengthening Center). He said he would look up information about Zoë’s estimated discrepancy and what the estimate gain was with all of the Surgeries. He Called back to tell us that he spoke to Dr. Paley and that he was ordering a Standing Full Leg study x-ray to use as a baseline for a new calculation.

Week of 7/24/2005

7th Follow-up

On Monday July 25, 2005 we had a clinic appointment at 2:45pm. We left New York with my Mother, Fran, who came for the ride at 9:00am. We arrived at the hospital at 12:30pm. We ate lunch at the Hospital Cafe and signed into clinic. The clinic was backed up over 3 hours when we arrived. Many of the people we sat with in the waiting room had 9:00am appointments and still did not get called for xray!

We were called for xray at about 3:30pm. I asked about full leg study and they confirmed that it was ordered. We were in the exam room at 6:00pm. The longest wait we have had so far.

Dr. Paley came in and told us he was concerned about the bend in Zoë’s Tibia (Bone in the lower leg under the knee). We asked what he was talking about and he showed us on the xray that the bone was bending and will cause Zoë’s knee to knock into the other leg. Dr. Paley said we should come in tomorrow or Wednesday for a surgery to correct the bend. The surgery would entail a new section of fixator put on below the leg, a few more pins going into the bone and a nerve tissue release.

He then suggested a growth plate staple which would accomplish the same thing but take longer and would not be done until the device comes off. For this surgery they place 2 screws in the growth plate under the knee and add a plate. This prevents the growth plate from moving while the other side continues to grow. This effectively causes the bone straighten slowly as she grows.

He told us to pick which one we preferred. We told him that we do not know what all the details are to make a snap decision. He said it was 6 of one half dozen of the other. I asked Dr. Paley if this was his child which one would he choose, He said it did not matter, both were an extra surgery and they are both very successful.

He further examined Zoë and said he would do the staple when he takes off the fixator in October. We will watch it for a few months and then remove it when it is straight, approximately 6 months to a year after the surgery.

X-Ray showing Zoë’s final length 8.6cm. Also note the bending Tibia below the knee. This will cause Zoë to have another surgery.

Week of 8/28/2005

8th Follow-up

On Monday August 29, 2005 we had a clinic appointment at 11:00pm. We left New York with my Mother, Fran, who came for the ride at 9:00am. We arrived at the hospital at 10:20am.

We were called for xray at about 12:00pm. We did a standing leg x-ray but had to take a second because the first one did not come out.

We were called into the exam room at about 2:30pm and waited. The resident came in and Zoë described stinging in the outside leg starting from the bottom pin in her femur and extending to below her knee. The Dr. examined her foot for nerve damage but did not see any. Zoë also described pain on the inside of her leg above her knee when she does therapy.

Dr. Paley came in and told us that she should have the fixator off in 3 weeks! Zoë’s bone growth was excellent. He removed her screw bar to dynamize the bone. He said we should not expect any pain or adverse conditions. This will compress the break and make it stronger.

I asked Dr. Paley about the staple and he looked at the x-ray and then thanked me for reminding him. He said he did not think she would need it. We were dumbfounded. He re-examined her leg and dictated a surgical note with the staple.

The therapist from NY, T.J., asked if Zoë could remove her knee bar for leg strengthening exercises. Dr. Paley said absolutely and that Zoë should have it off and weight bearing as tolerated. Zoë told Dr. Paley that she was worried her leg would bend backwards because she saw a patient in the hospital with her leg bent backwards. Dr. Paley assured her that this would not happen but that she should take it easy at first.

Zoë told Dr. Paley that she played Tennis at the US Open the week before. He wants us to send him the pictures.

X-Ray showing Zoë’s length 8.8cm. The bone is almost all filled in. The screw rod in the xray (right side where arrow points) is removed in this visit to “dynamize” the bone.

September 19, 2005

fixator Removal

On Monday September 19, 2005 we were scheduled for the removal, exactly 5 months to the day it was first put on. Irene, Zoë, and I drove to Baltimore on Sunday and stayed at the Radisson. We had diner at the Cheesecake Factory and went to Pre-Op at 8:30am on Monday morning. She was scheduled for surgery at 10:30am. Dr. Paley informed us about the “Staple” and they took Zoë to the back with Irene. The surgery went fine. The first soft cast broke in the recovery room while it was fitted. After the second on was fixed on her, we went to clinic on the second floor. While waiting for Dr. Paley, Zoë need to go to the bathroom, unfortunately because of the blood and mess we had to re-dress her leg and soft cast in the exam room. Dr. Paley told us to come back on 1 month for her follow-up. She was not to put any weight on her leg for 2 weeks and then transfer weight bearing after that until the follow-up. Also, no therapy for 1 month. We left for New York at about 5:30pm that night.

Zoë getting ready for removal surgery.
Zoë after surgery on the way to clinic.
Zoë’s pin sites immediately after surgery.
Zoë relaxing on couch with soft cast on.

October 21, 2005

9th Follow-up

On Monday October 21, 2005 we had a clinic appointment at 11:00pm. I was on a business trip to India so Irene drove down to Baltimore with her mother (Dotty) and Zoë.

They took 2 x-rays, one standing and one side view.

Her left leg measured 1.8cm over her right leg. Her femur still has to fill-in over the rod. Zoë also had a large hemotoma on the side of her knee by her pin site. The PA came in and treated it with Silver. if the hemotoma does not clear up, in will need to be removed when he removes the staple. We should schedule the removal of the staple in January.

She is to start therapy again 3 times a week for the next 8 weeks.

X-Ray showing staple (it is actually 2 screws and plate) that was put into growth plate to straighten the bottom of her leg.

January 18, 2006

Staple removal

On Monday January 18, 2006 we were scheduled for the staple removal. Irene, Zoë, and I drove to Baltimore on Sunday and stayed at the Hackerman-Patz house. It was fantastic. We had diner at the Cheesecake Factory and went to Pre-Op at 8:30am on Monday morning. We were bumped for surgery and waited until 10:30am for prep.

Dr. Paley’s resident came it to greet us in Pre-Op. He told me that they were going to remove the staple from the left leg and add a staple to the right leg! I told him this was unexpected. He got Dr. Paley on the phone in the OR and I spoke to him. Dr. Paley said that the last x-ray showed some bowing on the right leg and that it would be the same as we had in the left leg. I asked about removal of the rod, Dr. Paley said he would check it when she was in OR.

Zoë wanted an IV anesthesia instead of liquid. They had a very hard time finding a vein. They poked her in about 4 places and could not get it started. Zoë started panicking and the Dr. made a decision to give her catamine to knock her out so they could start the IV get her into surgery.

The Surgery went fine, Zoë had some vomiting after surgery and wanted to sleep. She was very out of it probably because of the catamine. I lifted the blankets and was shocked to see no incision on the right leg or new incision on hip for the rod. The resident came in and I asked what happened, he said she did not need it and Paley would explain in clinic. I begged her to stay awake until we went to clinic and she could sleep in the car for the 4 hours to get home. She tried her best and we were released to clinic. At Clinic Dr. Paley said new x-rays taken in OR showed that her right leg was fine, in the old x-ray her leg was probably turned, that is why they always check it in OR. The rod was fine and should stay in until next lengthening. We do not need to go back for follow-up for 6 months.

July 13, 2006

1st Follow-up after surgery

On Thursday July 13, 2006, Irene, Zoë, and I drove to Baltimore. We saw Dr. Paley at 10:30am. We took one x-ray of Zoë standing.

Dr. Paley reviewed the x-ray with us and said that Zoë’s tibia was at a 98 degree angle. Normal was between 90 and 95 degrees. He said she would need a staple in her tibia to correct and would have to be in for approx 1 year. We would need to do it within the next 1 year to 18 months to ensure that she was still growing. (Girls stop growing about 18 months after their first menstruation).

I asked Dr. Paley what happened to the first staple and he thought it was in her femur. I asked him to make sure he checks and he asked the resident to take a note.

We spoke about the upcomming save-a-limb golf outing and the save-a-limb bike ride.

Dr. Paley called Chris and left a message about us scheduling a surgery to add a staple. We asked him about the rod and he said he could remove it when he does the staple.

When we got home I checked this web site and saw that Zoë did have the staple in her tibia. Irene and I sent Dr. Paley an e-mail and asked him to check his records and get back to us. He e-mailed us a few days later and said that her femur had grown into her valgus and the surgery was still needed.

February 08, 2007

Zoë scheduled for surgery on Feb 09, 2007 for Staple

On Thursday February 08, 2007, Irene, Zoë, and I drove to Baltimore. We saw Dr. Paley at 1:30pm. We took one x-ray of Zoë standing.

Dr. Paley reviewed the x-ray with us and said that we would not have the surgery. Dr. Paley wanted to wait until all other corrections and lengthening were complete so we would not be “Chasing our Tails”. If Zoë has an ISKD or any other lengthening, there is a chance that the tibia will rotate and need to be corrected again. Zoë has a 5mm discrepancy, she was only 1mm in July. At this rate we may not need an extensive lengthening like the previous 2. We canceled her surgery for the next day and will see him in 1 year, We were all very relieved and left Baltimore for New York.

August 07, 2008

Zoë Appointment for Follow-up

We made an appointment for Thursday August 07, 2008 because Zoë was in Washington, DC for a Leadership Conference (jrNYLC) and Thursday was the last day. Irene and I stayed over in the inner-harbor because Zoë had to be picked up at the Science Center by 8:30am.

We had a 1:30pm appointment. Dr. Paley was out of town so we saw Dr. Shawn Standard. We took one x-ray of Zoë standing, the hospital now uses digital x-rays.

Dr. Standard reviewed the x-ray with us and said that her tibia bending was getting worst. The intern said that he was concerned that her ankle joint was twisting because of her tibia. Dr. Standard was not that concerned with it and said that based on her age and the formula she should not have much more of a discrepancy. Here current measurement from this x-ray is 3.4 cm. About 2.5 of which is from her Femur.

Zoë complained about hip pain on the outside of her hip and pain in and around her scars on the lower outside thigh. Dr. Standard recommended stretching exercises because her muscles are tight on her thigh and side of her leg.

Zoë has a scar from a muscle release from her first lengthening that has always bothered her. Originally the scar was on her panty line on the inside of her thigh but now it is much lower and still caused her pain.

Dr. Standard gave us a prescription for a 2.5cm (1 Inch) show lift and recommended that she not use a shoe lift when she plays sports like volleyball (her favorite!).

We also needed him to write a letter to the school because she always tests positive for Scoliosis due to her hips not being equal height without a shoe lift.

Dr. Standard said that since she is still growing, we could attempt another staple and try to correct the tibia but he felt that adding another ring to the last lengthening and making another bone cut would be better. With her current discrepancy, we could get 2-3 cm on the femur and 1cm at the tibia and she would be done lengthening in about 1 month. I asked about having her tibia on the left longer than the right, Dr. Standard told us that you can have the knees up to 3 inches off and still not cause any problems.

We agreed that unless she is having pain from the bowing of her tibia (knee, ankle or hip) we would wait until she is done growing and correct all bowing and length. Dr. Standard also advised us that they would release all her scars that are tethered to the bone on her shins and remove the deep scars on the inside and outside of her thighs.

We will go back for a follow-up in 1 year.

March 16, 2009

Zoë Appointment because of Lift too Small

Zoë was noticeably walking on her tip toes on her left side even with a 2.5 cm lift attached to her shoes. She was still having hip pain but not as intense as in October. We drove to Baltimore on Monday Morning for a 12:30pm appointment with Dr. Paley. Zoë had her x-ray while Irene and I visited with Marilyn (see above). We spoke to a resident and then met with Dr. Paley.

Zoë explained that she was getting uncomfortable with her current lift and asked about a higher one. The x-ray was taken with 4cm blocks and she felt better standing on them.

Dr. Paley had Zoë walk up and down the hallway a few times. He said he is always puzzled because Zoë feels better higher. Dr. Paley reviewed the x-ray and said her discrepancy is about 3cm now and should not get much worse.

Dr. Paley noticed that her femur angle is very straight and suggested that the hip pain and comfort with the increased lift may be due to muscle stress on the pelvis and femur. He recommended an osteotomy of the femur to correct the angle of the femur.

The bowing of her tibia is also very noticeable but the angle of her ankle is 80% so it is better than in August.

His recommendations are to correct the Femur angle and gain a centimeter and the tibia osteotomy which will give a centimeter or more and then lengthen the tibia to get get her even.

Some of Zoë’s growth plates are still open so Dr. Paley wants to wait until June 2010 before we schedule any surgeries to ensure that Zoë stops growing.

We went downstairs to visit and say hello to Erin, Moshe, and Anil (Physical Therapists). We also had the pleasure of meeting and talking to Mrs. Rubin who was having physical therapy for a knee replacement. We thanked her and her husband for their wonderful center, the doctors and staff.

X-Ray showing continued bowing of Tibia.