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Marten's story and his struggle with cerebral palsy
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28th March 2012


MARTEN BACK ON THE MEND 

Marten's roller-coaster battle against ill-health has continued over the last couple of weeks. After many weeks of solid progress Marten found himself in hospital twice in the last fortnight and also back on supplementary oxygen.

As many of you will know Marten has an underlying problem with his lungs (Chronic Lung Disease) which makes him very susceptible to all sorts of infections, particularly at this time of year. Things first came to a head on Thursday 8th March when, after a course of anti-biotics to fight a throat infection, Marten had to be readmitted to the Children's Ward at Paisley RAH. Marten was diagnosed as having tonsillitis and a chest infection. His temperature had reached 38.9C and he was going from hot to cold. After one night in hospital Marten was discharged to home.

Despite sticking to the course of anti-biotics Marten failed to shake off the effects of his illness. The next Tuesday, 13th March, Marten was whisked to hospital as he suddenly developed a high temperature (38.8C) right after his morning milk. He was immediately put on the home monitor which showed that his oxygen saturation had fallen to just 85% and that his heart rate was through the roof - meaning that he was struggling to breath properly.

As a consequence, Marten was immediately out back on the home oxygen concentrator at 1 litre a minute; to bring his levels back up. When this failed to work we put him directly onto an oxygen gas bottle at 2 litres per minute, after which he came back up to the high 90s in less than a minute.

Back in Ward 15, it was confirmed that Marten's anti-biotics had not effectively combatted the previous problems and that as a consequence he had developed pneumonia in his left lung. All together Marten spent two and a half days (and nights) in hospital before he was released on the Friday afternoon with a new course of anti-biotics. By this time he was down to 0.3 litres of supplementary oxygen a minute - exactly the same amount he was on before coming off oxygen more than 3 weeks ago.

We are glad to report that over the last few days Marten has started to pick up again. His temperature is stable and the cough has gone.He is eating well and showing an interest in everything that is happening round about him. He does seem to have lost some of his daytime sleeping pattern and is very noisy at night, but hopefully this will correct itself in a few days.

Throughout all this Marten missed only 2 days of his ABR (Advanced Bio-mechanical Rehabilitation) programme; although some of his sessions had to be cut to around half an hour a day. After consultation with the centre in Belgium, and a referral to the therapy inventor, Leonid Blyum, we have changed the emphasis of his programme from the chest to the tummy to help strengthen that area. As of tonight (Wednesday 21st) Marten's oxygen requirement had come down to 0.1 litres per minute and we are confident that we will have him off oxygen again in the next few days.

Last but not least. Finally, after over two weeks coming by first class post from the States, Marten's "BabyBjorn XL" arrived. Marten always used to like to be taken around in a baby carrier as it was so much more interesting for him than being in the pram. Unfortunately, as he cannot yet hold his own head, he needs to be in front and his own baby carriers soon became too small (he's nearly 10kgs now). We did discover a new BabyBjorn in Mothercare (mail order only) which would have done the trick for a few more months (takes children up to 12kgs), but we found the BabyBjorn XL available only in the USA - the home of big babies - which goes up to 15kgs or 33lbs.

So tonight's job is to get it out of its wrapper and try and figure out exactly how the special expansion device actually works! We'll let you know.