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)
