A long overdue update....

We have progress appointments with Dr Paley or one of his team every two weeks.  I keep meaning to update this blog but keep delaying it because we have an appointment coming up and decide to wait until after that appointment to be completely up to date.  We had our progress appointment and x-ray today so no more delaying, I am updating the blog!

Daniel's x-ray from today

Daniel's x-ray looked all good today and we have achieved about 5.5cm in length so we are getting closer to our goal of 8cm!   We are behind about a month because we had some issues with Daniel's fixator not distracting properly.  After a few weeks of Dr Paley's staff having a go at fixing it, Dr Paley had to look at it and it took him about 5 seconds of looking at it to solve the problem.  So, we got back on track.  Today, because Daniel has lost some range of motion in his knee, down from 80 degrees to 70 degrees, they have decided we should slow down lengthening from 1mm a day to 0.75mm a day.  This is pretty normal as we are now in the really difficult stage of lengthening.  Hopefully we can stay at this rate and we should be done lengthening in about a month's time.  

Fixing the Fixator

Daniel's muscles (quadriceps and hamstrings) are getting really tight, you can see how tight they are by looking at them.  The knee bends (or belly bends as the kids call it) are still the toughest.  His muscles are so tight now that it takes all my strength to be able to bend the fixator to get a good range of motion in his knee.  Daniel really loves his therapist, Don.  I asked Daniel if he likes going to PT and he says he does which is a huge advantage.  Some kids throw up before they go to PT because they are so anxious about those belly bends.   The pain these kids go through with their belly bends certainly inspires all the adult patients who witness how brave and strong they are.

Soccer in the hallways for PT with Don, John and Tony

Daniel has to wear a knee bar at night to keep his leg fully extended and this is quite painful.  Although, Shane came up with a genius idea a couple of nights ago which has helped a lot.  For Paley patients - we use a cable tie and tighten it very slowly over about an hour until it is tight enough to put the knee bar in.  It means he gets to sleep with no more screaming and over an hour of massage. He takes some pretty serious pain medication which also helps a lot.

Daniel has started attending an after school program at Max's preschool three times a week.  He loves this as he gets to play with other kids his age and get some time away from all this lengthening business.  It also gives me a couple of hours free time to get some shopping done or grab a coffee.  He is also continuing tutoring three times a week but is begging me to go back to school.

Christmas concert for the After School care kids (second from right)

To give you an example of a day in the life of a Paley patient and his family:

7am - Breakfast and get Max ready for school.  First turn on Daniel's fixator.  Give Daniel his supplement** and his pain meds ready for home therapy.

8am - Take Max to school

8:30am - 9:30am - First session of home therapy - includes warm up with heat pack, electrical stimulation and massage.  Muscle strengthening exercises.  Stretches - foot stretch, abductor stretch, hamstring stretch, hip stretch, two quadricep warm up stretches and ending with the belly bend.  We have to three reptitions of each stretch for 30 seconds each.

10:30am - 11:30am - Pin site wound cleaning - includes disenfecting the bath, epsom salt bath, removing old bandages, cleaning wounds with antibacterial soap, removing debris and gunk from each pin site.  Allowing to dry before re-wrapping with new bandages.

11:30am - 12:00pm - Lunch time, second pin turn, supplements and pain meds for PT.

12:15pm - 1:00pm - Travel to PT at the hospital

1:00pm - 2:00pm - PT with Daniel's physical therapist

3:00pm - 5:00pm - School work with tutor or after school care (pick up Max)

5:30pm - 6:30pm - Third pin turn, dinner, take pain meds for next home therapy session

7:00pm - Get Max to bed.

7:00pm - 8:00pm - Second session of home therapy, final pin turn, supplement, valium for muscle spasms caused by knee bar, story, brush teeth.

8:00pm - 9:00pm - Slowly insert knee bar until fully in, hoping he does not wake in pain.

Weekends are pretty much the same except we don't have PT at the hospital but we have to do three home sessions which is actually harder because we feel like we spend all our time on PT and pin care and not much time for normal weekend activities.

Lengthening is really tough but we have had some pretty wonderful experiences over the last couple of months that make it much more bearable.

Dr Paley presented Daniel's case to a room full of doctors.  I was so proud of Daniel standing up the front showing these doctors his fixator and his x-rays up on the big screen.  If Daniel can teach other doctors to help other children with orthopaedic conditions, that is a pretty amazing feat for a 6 year old.

Daniel and I raised over $1,000 for the Paley Foundation in the annual Palm Beaches marathon.  We were invited to a party at Dr Paley's house to celebrate our achievement.

Collecting coconuts from Dr Paley's beachside home

The next day, Shane, Max, Daniel and I walked in the marathon.  It was an amazing experience walking with such a big group of Paley patients.  We were so proud of Max who walked 5km and didn't once complain.  We pushed Daniel in his wheelchair but he walked for the last part which was lined with people cheering him on.  It was very emotional for both of us.  After the race, there was a breakfast for the Paley team and we got to meet other families who we have known for several years over Facebook and email.  We really felt part of a wonderful and strong community of families who are going on the same journey as us. 

We have experienced first hand how charitable people are in Florida.  Although we are not staying there, we have been able to attend events at Quantum House (similar to Ronald McDonald House).  We had Thanksgiving and Christmas dinner there.  Breakers Resort cooked Thanksgiving dinner for all the families and a family cooked Christmas dinner for us.  We were invited to attend the Help-Portrait event where photographers give us a free family photo shoot.  This is a global event that occurs on one day all around the world.  The Boys and Girls Brigade invited all the Paley patients to the Hilton and gave all the kids presents and cooked dinner for us.  The hospital held a Christmas event for all the kids and they got to fill their sacks with presents and have a photo with Santa.

Santa visiting the Childrens' Hospital

Christmas Day at Quantum House - Generous people donated presents including a handmade blanket

Dusty from Disney Planes visited the kids for Thanksgiving

Once a month, the Psychology PhD students at the local university host a session for all the patients and their families.  They provide us with dinner first and then we break into a parents group and patients group and talk about a different topic each month, for example, pain management, stress, being away from home over the holidays.  It is great to talk to other parents who really understand this process and the kids really enjoy it, including Max who comes along too.

We have had some visitors to Palm Beach since we have been here.  Our friend Steph and our nephew Mark have stayed with us.  We also had a visit from my parent's friends, Jenny and Neville.  We haven't had a lot of time for socialising but we spend time with other Paley patients which is great as we can talk Paley patient lingo, share what we have learnt along the way and they understand how time limited we are and that we need to get home or we won't get our last home therapy session in before bed time! I think we will really miss this when we go home (although we can't wait to see our family and friends again!).

Pass the parcel with other PFFD Paley patients

So there you go, a very lengthy and long-overdue update.  Thanks everyone as always for your support, we couldn't do it without it.

Posted by Kristen (Daniel's Mum)

** FYI Paley patients - The supplements Daniel is taking were recommended by Dr Paley - www.bonehealthnow.com