Thursday, 23 June 2011

Dude rocks! 1-5yrs

Dude was 2 weeks off his first birthday when he was diagnosed with Cerebral Palsy. The doctor had said not to expect him to do anything. He started seeing a physio and acquired a standing frame and a corner seat which he was to spend time in everyday. Dude started to open his hands allot more and rolled from side to side better. He was given special boots and I was given exercises to do with him each day. I found his first birthday hard as toys for his age just didn't meet his physical side. I ended up with a ball pit. I thought he would like to lay in it and play with the colourful balls. I didn't realise that play balls were hard to get in January. His father and I split a few weeks after his birthday.

Two months after the start of his physio Dude started proving them Doctors wrong. He started to crawl! He couldn't yet sit but crawling meant he could get around much better than with his commando crawl. It only took a few months before he was whizzing around. He likes to be really close to the T.V. and started holding on to the T.V. table so he was up on his knees. He was 15 months old when he accidentally let go and flopped back down and SAT on his knees. He started to sit more and more although this wasn't a great position to sit in. His physio said it was called the 'w' position and would put strain on his hips and knees. She tried getting him to sit in other positions but he just wasn't stable enough to do it.

At around 18 months Dude started to pull to stand. With him now doing this he was tried with a Kaye walker. His physio thought he might have been to young to master it but not Dude, he walked!

At his check up with his paediatrician when he was 20 months old I pointed out that I thought he was a bit odd. He flapped, rocked, lined things up, had unusual fears, made repetitive noises, couldn't deviate from routine, struggled with noise and crowds and had sudden tantrums over what appeared to be nothing which he couldn't be comforted for. I suspected he may have Autism but the paediatrician literally laughed in my face and said that all kids where like that.

At two and a half years old Dude had his first operation. His legs had become too stiff and were stuck crossed over (scissoring). Nappy changes had become extremely difficult so it was decided that an op to release any tight tendons and to put Botox in his muscles to relax them would be beneficial. This is where we discovered that he doesn't like to wake from General Anaesthetics very well and that he had a high pain thresh hold. It was supposed to be day surgery so out on same day. Dude had other ideas, not waking up so ended up spending time on the ward. When he was released we was given a pain management sheet but Dude didn't need any pain killers. It was very hard to get him to stay still and rest. He just wanted to crawl about like nothing happened. The tendon release worked but the botox didn't. Although he could now open his legs and didn't scissor, he did still have very high tone in his legs. We also saw a gastroenterologist as Dude had problems with his bowels from birth. He was diagnosed as having chronic constipation and had never emptied his bowels properly which resulted in an impaction. He was given Medication to clear him and to have regularly. He was also sent for an op to put a probe in his stomach to asses his reflux that he had from birth. This resulted in another diagnosis of Sever Reflux. He was lucky as only his stomach was damaged but his oesophagus was fine. We visited a neurologist as Dude had started having jerks and it was queried that he might have epilepsy. He had and MRI scan of his brain which showed he had a form of brain damage called Periventricular Leukomalacia (PVL). He had huge holes in the middle of his brain, hardly any white matter and instead of his brain meeting his skull it was jagged all the way round. People often ask me if his brain will get better or if it can be fixed. It can't be fixed. Dude was sent for tests for epilepsy but they came back as normal. Dude was changed from just boots to boots and AFO splints. He Had a hip x-ray that showed his hips were underdeveloped and he didn't have much in the way of sockets.

3 years old and Dude started at nursery. He attends a mainstream school. We've had ups and downs with access and support but we're quite happy where he is. I am concerned though as we have nothing in writing. Kids like Dude normal have care plans, statements excetera so that support levels, education needs, access, equipment and therapies are insured. All Dude has are I.E.P's which cover his toileting and physio. He was given the Autistic Spectrum Disorder (ASD) diagnosis. The Speech Therapist had also picked up on signs that he was ASD and initiated the assessments once he was in school. Dude went for more tests about his jerking which was almost always in his sleep, for floppy episodes where he would lose all muscle tone and couldn't even hold his head up and also for some episodes where he would stop breathing. I was told he had Non-Epileptic Mycolonic Jerks and Sleep Apnoea. They wasn't sure if he has Obstructive or Central Apnoea's though. They didn't know why he kept going floppy. Along with his splints and boots Dude now needed to wear a Lycra suit to support his hips and back.
Because of Dudes floppy do's he needed a wheelchair that would tilt as a fixed back chair just meant he flopped forward or sideways and closed off his airways. Dude only does this a average of 1-2 times a week and as we still didn't know what caused it wheelchair services refused to issue him with a chair that met his needs. To top that the chair they had issued was also unsuitable for me. I dislocate very easily due to Eherlos Danlos Syndrome and the handles on the chair were so low down that they put enough pressure on them to dislocate them severely. I ended up on crutches and couldn't weight bare. I contacted social services as I was desperate for help. I couldn't feed, wash or get Dude up and down the stairs. We had a stair lift fitted but I was unable to even lift him up onto it or onto the silly bath lift that had been fitted. Social services refused to help until I told them I'll get a taxi driver to help me into their office and sit there till they did something and that if anything happens to Dude then its on their heads as I contacted them for help. We got carers for 8 weeks when they suddenly dropped them. In the time we had careres I was assessed by adult services and was placed on there critical level as needing help but they said they don't provide the help I needed which was with housework and cooking. Even meals on wheels had been stopped but if it hadn't they would only provide food for me and not Dude. These were hard days. I did eventually get well enough to do all the things again but still I struggle with the housework and lifting Dude. When we had the ''adaption'' done I had asked if they could please adapt the garden so that Dude had access to it. After a battle they put a ramp down to our front grassed area and a 2 meter by 2 meter playing area. He still doesn't have enough access to the garden to play like the other kids. I cant afford the £6k I was quoted to adapt it so he spends much of his time indoors. We was assessed as needing one night a week over night respite in Feb 10. t still hasn't started as there was moving and handling issues as Dude can not self transfer into a car.

He started reception (foundation 2) last September. He's come on so much since then. I love his current school teacher as she's managed to get him doing things that I thought would never happen. In October we saw his paediatrician for our 6 monthly check up. Dude was still incontinent and I was told not to expect him to be out of nappies any time soon. 4 weeks later and (I have to admit, this was mainly down to school) Dude was out of nappies in the day except for whilst out as public toilets were kind of a nightmare. Hes now out of them totally in the day. I'm so proud of him.
I applied to a charity (which I hated doing) to get Dude a wheelchair that was much more suitable for us both. It was decided that he had mixed tone cerebral palsy and they finally recognised that his whole body was affected by both the high and low tones. The new chair meant that instead of having to just lay there on the sofa, missing out on stuff, he could just be tilted in his chair and still go out even if that was just to go to an appointment or shopping.
This year he had  another operation. His legs had become very stiff again and his feet were getting stuck pointing down. He had botox again and serial casting. This meant he was in plaster for 8 weeks but when the last lot came off he had flat feet. He amazed us even more when he decided to walk unaided for the very first time. He now practices lots at home and school so hopefully one day he may get rid of the walking frames for good.

So this is where we are up to now. I'm sure there will be loads more to share with you. I know I haven't shared everything he's achieved or done yet as this post is long enough.
p.s. if you managed to read all of the post, well done and sorry it was so long!

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