Fixator Removal - Best two words a Paley patient parent wants to hear

 

Today we got the news that after 11 months, Daniel can have his fixator removed on September 10th.  It has been so so long since my last update so I thought I should update Daniel's blog.  I have been using Facebook to update more recently so not using the blog as much.  But, I want to make sure I update it for Daniel to read when he is older and also help other families going through this process in the future.

So, when I last posted at the end of February, we had finished lengthening.  We had to wait a few weeks so that Dr Paley's team could make the adjustments to the external fixator to change the angle of his bone.  One day during Spring Break, we met Tony (the fixator fixer) to make the adjustments.  It was a very long day for Daniel, he had to lay on the table for 8 hours, a long, long time for a 6 year old to sit still.  It was pretty traumatic for him when they had to cut the big bar that runs along his femur with a wire saw but he was so brave and such a trooper during it all.  The iPads ran flat and he tried everything in the candy machines but we got there.

Eight hour epic fixator adjustment

Unfortunately, the next morning, things didn't look or feel right.  We took him straight up to Dr Paley's office for x-rays.  The fixator had collapsed due to a miscommunication as to which type of hinges should have been used.  The fixator was adjusted again but unfortunately we had lost about 2cm of length which was devastating because it had taken us so long and so much pain, sweat and tears to get that 2cm. 

We had to turn one of the sections of the fixator for about 10 days to change the angle of Daniel's bone.  Once this all lined up properly, Dr Paley suggested some further adjustments so we could lengthen again to regain the length we lost.  Fortunately, we were able to turn 4 times a day (1mm a day) so it wouldn't take as long.  The best news was that we didn't need to use the knee bar at night which made a HUGE difference to Daniel's pain.  He wouldn't have been able to stay at school if we had to use it. 

The good news is that we were able to continue lengthening beyond what we lost so we think we ended up lengthening about 10cm! Both Shane and I are still a bit confused as to what length we actually achieved in regard to the shoe lift.  With the changes in angles and stopping and starting, even the PAs had difficulty working that one out.  But at the end of lengthening (for the second time!) in mid-May, his shoe lift was measured at 8cm.

Done Lengthening!!

So since mid-May, we have been waiting for Daniel's bone to consolidate and today we got the news that we can book in removal for September 10.  We are all very excited to say goodbye to the fixator.  Daniel will have a non-weight bearing stage of about 4 weeks before he can resume normal activities.  At the moment we are going to PT twice a week.  Daniel is getting 65 degrees on his knee bend and we are not really getting any more than that despite bending at home and PT.  His therapist is hoping that once the fixator is off, we will have some more gains.  The fixator is like a cage around his leg now which makes it difficult.

Daniel finished First Grade in June, enjoying the last week of festivities. He has had an awesome summer and has not used his walker or wheelchair as his pain has improved.  We use the scooter now to get around.  Next lengthening we will definitely use a scooter again, works so much better than the wheelchair or walker.

My parents and best friend visited from Australia. We went to New York City and caught up with some Aussie friends there. He has been to drama camp, art camp, science camp and Lego camp.  We have been to the baseball which he is really into now since playing it with his therapist, Don, every PT session.  With the Paley kids, we visited the zoo, the Science Center, NOVA nights and a photo shoot for the Paley Foundation with all the kids on bikes. 

He is starting back at school next week with Max who is starting Kindergarten.

Max graduated from Pre-K in June, we are so proud of him. As well as starting Kindergarten next week, Max is starting soccer and swimming lessons soon and we are looking forward to Daniel joining in very soon!  Max has been an awesome little bro to Daniel, he best friend through all this. 

We have all really loved living in Palm Beach and will be so sad to leave.  The generosity of people has been incredible.   We have also got to meet so many Paley patients and feel very much part of a community of incredible families.  I think Daniel will look back at his time here fondly which will help when we return to Florida in 4 years time.

Graduation photo!

Family visit to Universal Studios

This is how we got around NYC

Paley Kids excursion to the Fire Station

Dan and Max at Art Camp

Watching the local Jupiter Hammerheads at the Baseball

Photo shoot with the Paley kids

Paley Kids Excursion to the Science Center

Playing Doctors with a Med Student at a hospital event

No stopping him!

Awesome underwater shot taken by Grandpa

Top photo is first post op x-ray, Bottom photo is today's x-ray

Posted By: Kristen (Daniel's Mum)

No More Turns!

We reached a very important milestone a week and a bit ago so its time for an update!

Since I last blogged, we went from just over 5cm to reaching our goal of 8cm of new bone!  I wouldn't say it was easy.  The hardest part of lengthening is from the 5cm to 8cm.  We are really stretching all the nerves, ligaments and muscles beyond what they should be stretched.  Daniel was able to keep his range of motion at 75 degrees but it was really tough getting to that point.  At one stage, we had two therapists pushing his knee at the same time and one therapist measuring the angle.  As a result, Dr Paley slowed down the rate of distraction daily from 4 quarter millimeter turns to 3 and then down to 2.  While it is so frustrating slowing down because it makes the process longer, it did make a big difference in the pain level for Daniel.  As well as the stretching, we also had to lock his fixator straight each night which was becoming more and more difficult and painful for Daniel to sleep.  Once we slowed down to 2 turns a day, it was significantly easier.

On 28 February, we got the news that Daniel had reached 8cm and we were done with turns.  Daniel was so excited as was I!  Shane and I are both so proud of Daniel and how he has coped and the maturity he has shown through all this.  He is our hero!

We have had a little hiccup a long the way though.  I was noticing that Daniel's femur was getting longer but his shoe lift was not going down which is the exciting part we all look forward to.  After a emotional breakdown when talking to one of Dr Paley's PAs, he booked us into an appointment with Dr Paley.  Dr Paley reviewed his x-rays and told us that it is the angle of his femur which is causing Daniel to hike his hip up so it seems like his leg is shorter.  Luckily, this can be fixed without a surgery.  It will take a couple of hours adjusting Daniel's fixator so that the bone can be bent.  We will have to do turns again but this time to bend his bone.  This process should only take a few weeks.  After that we need to wait until Daniel's bone is full healed so we can remove the fixator. 

The great news is that Daniel has returned to school.  He is attending the local elementary school here and they have been so lovely and welcoming to Daniel.  Daniel LOVES school and really appreciates being able to go.  When I pick him up each day he is bursting with energy and excitement about his day.  He has had two great tutors (Julie and Lisa) who have helped him keep up to date with his school work so he has hit the ground running.  

Since we finished turning and Daniel has returned to school, we have reduced PT sessions to 3 times a week and we do stretches once a day at home (and twice on non-PT days).  Daniel is disapointed though that he can't go to PT everyday.  He has developed a great relationship with his therapist, Don and looks forward to seeing him.

We are also doing pin site cleaning every second day and his pin sites have been great.  Daniel and Max have started swimming again as the Florida weather has started warming up which has been great for the pin sites and for bending his knee and building up strength again.  He is also eating more since we have been able to cut down his pain medication.  He is all skin and bone at the moment!

Some other tidbits since I last updated:

•  The Paley Institute held a conference for surgeons and for physical therapists.  Daniel was involved in both as a case study letting the physical therapists watch his therapy session so they can go back and help treat patients like Daniel. One of the participants is training to be a therapist as well as a Olympic swimmer.  He had limb lengthening the same as Daniel and spent some time with Daniel during his stretches.  It was great for Daniel to see someone who has finished his lengthening and has two feet on the ground.

•  Quantum House gave us tickets to the South Florida State Fair.  We tried our first corn dog and deep friend Oreo.  The Krispy Kreme burger was too much for us though, I can't do donuts and mince meat in the same mouthful!

• The Palm Beach Childrens' Hospital hosted a Superhero Carnival.  The boys had a great time playing doctors with the medical students and checking out the SWAT team's truck.

• We went to the spring training baseball game between Miami Marlins and the Detroit Tigers.  We got to sit right behind the players who autographed a ball for each of the kids.  We chatted with one player who was from Australia!

Posted By Kristen (Daniel's Mum)