Goodbye Fixator!

We are very happy to announce that the fixator has been removed! Daniel had surgery on the 13th September. It was so quick that Dr Paley came out of surgery before Shane got back from the hospital cafe to get Max some milk.

We were quite stressed before the surgery because Daniel came down with a cough again meaning he might not be able to have the surgery. He has had three coughs this year, each one starting just before he is due for surgery - unbelievable!! Max also got a high fever a couple of days before the surgery so we were hoping that it was the virus Daniel already had, not a new one. After all the frustrations we had been through to get this fixator taken off, we did not want a cough to postpone surgery meaning we would be back on a plane to London. Anyway, the cough cleared up and thankfully the surgery went ahead!

When we went to meet Daniel in recovery after his operation, he was not very happy at all and cried that he wanted his fixator back on. He has had it so long he probably felt like a big part of him was missing. But once he had fully recovered and we took him home that afternoon, he was up and walking straight away. Since he has had it removed he has been a lot happier, has a lot more energy and no longer has any pain. He is walking and running everywhere and not asking us to carry him or to go in the stroller. He has also seems more fearless. He has started using his scooter, riding to and from nursery. He has also started wrestling Max a lot more, not afraid of hurting him with the fixator. The staff at his nursery have also commented how much happier he is and how he is playing with the other kids a lot more. Whilst we are delighted that Daniel is so much happier and confident without his fixator, it makes us a bit sad that although he appeared to be coping well, there was another level of happiness and confidence that Daniel was missing out on for the last 7 months.

Daniel had his first bath last Sunday and he was in there so long his hands went all wrinkly which freaked him out a bit! He loves it though and most days has a bath twice a day.

First bath in 8 months!

Daniel has to wear a hip brace for 6 weeks but he is coping with that pretty well given what he has had to cope with in the past. Daniel started his physiotherapy today in London. He will have to have 3 sessions per week. It basically involved playing with toys while the physio moved his leg around. She is bringing in a Nintendo Wii in for him to play with on Wednesday. I never remember trips to the physio being this much fun!

Daniel's brace - it was the smallest size that they make so it is a big big but it does the job.

We had a quite informative appointment with Dr Paley on the Friday we flew back to London. Not great news but with the excitement of having the fixator off, our mood could not be brought down. It looks like Daniel's hip has fused which was a risk when we started on this journey. Dr Paley said that because it has fused when he is so young he can adapt to it by using his knee joint and lower back to walk and he shouldn't have any back problems because of it. Dr Paley may be able to defuse it but it depends whether it is hard bone or cartilage. The worse case scenario, if it is hard bone, then he can have a standard hip replacement when he is fully grown.

The second issue is that Daniel also has a condition called Fibular Hemimelia which affects the lower part of his leg. The bones in his lower leg are slightly narrower and also his lower leg rotates inwards which causes his foot to point inwards. This is not a big concern and his prosthetic leg is giving him the stability he needs.

Dr Paley said that Daniel could start limb lengthening when he is 6 years old, in 3 years time which will give him (and us) a break from the fixator. Daniel has to have a CAT scan in 6 months time and we will need see Dr Paley in about 9 months time for a follow up. Dr Paley may also perform another surgery on Daniel's hip in 12 months time to remove the internal hardware and attempt to defuse his hip.

On a final note....it was our third trip to Palm Beach, Florida in the last 8 months. It is starting to feel like our second home but with the sunshine, the friendly people, the great shopping and all the kid-friendly things to do, we are happy to call it our second home!

Playing in the fountains each morning after breakfast

Who needs Disney World when you are 1 and 3 years old?
A trip in the car trolley and choosing a helium balloon each at Publix is just as exciting!

Our mandatory trip to the Turtle hospital.

Typical afternoon in Florida. A daily afternoon nap in the stroller.

Great shopping time for their Mum!

Here is a video of Daniel on the scooter. He started walking with his feet either side on Tuesday and by Wednesday afternoon was riding it so confidently and fast. We are so proud of him!



Posted By Kristen (Daniel's Mum)