We are really counting down the weeks in the fixator this time! It has been a couple of tough weeks but we are crossing off the days. Last week, Daniel had a pin site infection. His leg was swollen, the pin site was oozing yellow and green fluid (sorry, too much information?) and he was really tired and generally not a happy little boy. The difficult thing is that we had to keep up his painful exercises every couple of hours, it was heart-breaking. We dosed him up with strong pain killers and valium to get him through his physio sessions.
This weekend, the pin site infection was a lot better but for some reason, he was finding the exercises really painful. His legs would shake and he would cry out with even the smallest movement. We emailed Dr Paley, who asked us to get an x-ray. Our local hospital is great and we just turn up at Accident and Emergency and they give us a copy of the x-ray on CD so we can email it to Dr Paley. Dr Paley's response was, "It looks great". A huge relief! We were both really stressed that it his hip had started to re-fuse again. He seems a lot better today and was tolerating the exercises really well. One of the difficult things with a 3 year old is trying to understand why it is hurting and how much of it is related to anxiety.
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| Daniel's latest x-ray that looks great! |
Dr Paley has been great through all this. I don't know too many consultants, or world leading at that, who respond to our emails so quickly over the weekend and Easter holidays. When Daniel had the pin-site infection, Dr Paley responded to our email in less than an hour. Shane was able to speak to him on the phone from Accident and Emergency and Daniel was on the right antibiotics that night.
Daniel has a great team of physiotherapists (thank you Andrea, Jeanne, Belinda, Anna, Jenny and Rachel) at the Portland Hospital in London. Daniel has physiotherapy five days a week for an hour. The first 45 minutes involve two physios playing games with him (what 3 year old wouldn't lap that up?) and the last 15 minutes involve the dreaded stretches. Daniel amazes us though because even though every session ends in tears, it is all forgotten at the next session.
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| Physio session with Emily (Dr Paley's physiotherapist) |
So a typical day in the life of the Rigby's at the moment:
7:00 Breakfast and Medication (need to eat to be able to have the medication which has not been easy because Daniel has not had the best appetite).
7:30 Ten minutes of stretches with Daddy (this involves moving his fixator at the hinge to get his hip to 90 degrees. We do 3 big stretches to 90 degrees and about 10 minutes of small movements).
8:00 Daddy takes Daniel up to nursery
10:00 Mummy visits nursery to do ten minutes of stretches in the staff room.
13:00 Mummy picks Daniel up from nursery but before we leave we do ten minutes of stretches.
15:00 Ten minutes of stretches at home before we leave for physio session
16:00 Physio session at Portland Hospital
18:00 Dinner and Medication
19:00 Pin site cleaning with Daddy
19:30 Ten minutes of stretches with Daddy
20:00 Bedtime
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| Hip in straight position. Daniel has to have a bar bolted in to keep his hip straight so it doesn't get stuck in the wrong position. |
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| During exercises we take the bar off and bend the bottom section upwards as much as we can. |
Some non-medical related snaps of the boys enjoying Easter!
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| Max and his Easter Eggs! |
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| Daniel and his Easter Eggs! |
Posted By Kristen (Daniel's Mum)
