Joshua has mobility problems but is able to get around semi-independently, meaning he needs an adult around to correct his wobble whilst walking and to look out for dangerous things. Joshua is a very happy and loving child and he becomes everyone's favourite wherever he goes, he has a good sense of humour with his latest trick of being a pirate and saying ‘ohhhh arrrrh', regardless of the situation!
Sally's development is behind what Joshua was able to do at nine, she has no speech and communicates on a basic level of throwing your hand to what she wants and SHOUTING at you. Sally has only just started to walk but is similar to a toddler, just twice the height so twice as far to fall. She spends most of her time in her buggy but enjoys scrambling around and causing chaos whilst out of it. Sally is a very happy child and is currently experimenting with sounds, often babbling to herself and then letting out a giggle, all very amusing. Sally loves school and everyone in school knows of Sally, often the loudest in a quiet assembly. She has a zest for life I've never seen before and just loves everything she does. Sally has won Mencap's Snap! competition twice and both photographs just sum up Sally's personality.
Medically Joshua is reasonable okay, from some initial feeding problems Joshua now has asthma, eczema and a knee plate (patella) which can dislocate at will without any pain. This is Joshua's party trick and he is continually moving it to the side, it is cringe worthy stuff. A photo of this dislocated knee also helped when the DLA questioned the rate he should be allocated!
Sally is another case when it comes to medical history. Sally struggled to gain weight from birth, had multiple instances of pneumonia, partially collapsed lungs and was generally pretty unwell in her first 18 months and then beyond. She was eventually diagnosed with aspirating on liquids which meant she could not drink any liquids. For the next few years we thickened liquids so they became like thick yogurt, she continued to have chest infections and pneumonia but on a less frequent basis.
In addition, every time she had an infection her temperature would rapidly increase and the inevitable febrile convulsion would follow, more or less on a weekly basis for a number of years. Sally's convulsions, like her, were not the normal type. She would stop breathing for up to two minutes, in one case she choked and I had to give her mouth to mouth. Nurses told us they were scared of looking after Sally as she was so complex which meant that Tracy (her mother) and I had to be present 24/7, whether at home or in hospital. This meant we always had a medicine bag, made sure we were able to drive her to hospital and pretty much based our whole life around not planning anything as Sally was hospitalised every few weeks.
Once Sally reached six she seemed to deteriorate and spent 150+ days in hospital on/off over about nine months. She was aspirating morning, noon and night, often up at oneam being sick for over an hour. After lots of investigation - Sally is very good at confusing the most senior of consultants - a fundoplication and gastro tube was planned. Trying to find a slot for the operation and a time when Sally was well enough was a struggle but a cancellation was available and we went for it. The operation went well but a day later an infection, pseudomonas, really kicked in and rapidly filled both of her lungs. She then spent ten days in ICU on a ventilator whilst they scrubbed out her lungs and pumped multiple strong medicines into her veins. We had a very stressful time trying to get her off the ventilator but Sally is a fighter and beat the infection.
However, the consequencse of the past twelve months had caused her lungs to be in a pretty bad way, with multiple scars and little chance of ever getting rid of the infection. From now on it will be a matter of treating her with strong antibiotics every three months to keep the infection levels down. In addition to this she had also been colonised with MRSA, but thankfully it never got into her blood so didn't come out as an infection. The downside to the MRSA was that Sally was isolated in hospital and not able to play or see other children, something she really missed. A few months later we had a portacath put into Sally to make the IVs easier and less traumatic for Sally. Sally is now fully gastro tube fed and has no food or drink through her mouth.
Good news though, the stress and strains of the operations, ICU and treatment was that Sally had an amazing recovery. She became a little girl again, she's only had a couple of hospital stays over in the past eighteen months, her parents give her the IVs at home and she has put weight on, started to develop mentally and is a complete bundle of joy and happiness. Considering what Sally has gone through she has the most amazing zest for life. She lives for the moment, not having awareness of time at the moment, so just loves each day. She squeals as she arrives for school, squeezes her granddad when he looks after her, has started to pat everything and everyone she can see, loves finding messy things like pasta, oats, water and throwing it all over the kitchen and herself, adores a shower and laughs as she turns the nozzle on you and soaks the bathroom and anyone in the way.
We have had amazing help over the past few years, mainly from charities, and a small group of carers, called Dragonfly, from the local hospital. The schools and hospital have been amazing and spend a lot of time helping us as a family and linking us with professionals. Dealings for official help has been hard work and the request for additional emergency help in May 2006 started in May 2007. I despise having to deal with the social services as we are constantly reminded that everything costs money and they can't provide anything. Only perseverance, the backing of schools, charities and a continually hounding allows us to get any help.
I will be updating this blog and updating you on the current fight to get Sally a wheelchair that suits her and an operation to remove some of Sally's teeth which are severely corroded due to her constant sickness when she was younger. Joshua is due to see a specialist about his dislocating knee which we have been waiting for the past twelve months. Joshua has also just started secondary school which has been a fantastic experience for everyone. The teacher has put an amazing amount of effort into making Joshua welcome, even having a pirate day for the whole school at Joshua's request.