Tuesday, 21 June 2011

Theres something wrong with my baby!

I knew from the moment Dude was passed to me that there was something not quiet right. I didn't know what, but his legs looked funny. As if they had been stuck on wrong. His father had told me there's nothing wrong. Doctors and Nurses on the Maternity Ward said that there was nothing wrong.

At his check before we had been discharged his left ear wasn't showing signs of picking up any sound. They had said this was probably fluid and to return in 2 weeks for another hearing test. We went back and sure enough it had been fluid. It had cleared and he passed his check. Phew, I was pleased.

We had several visits from Midwifes and Health Visitors. No-one suggested there maybe any problems with my baby. I still had concerns about his legs. He screamed ALL the time. only stopping if he was swung gently in his moses basket. I had to stop breast feeding him after 4 days because he just had too strong a suck and had caused allot of damage to me. He wasn't getting any milk because he was sucking too hard. I felt awful that I had given up, but we were both crying. Me because I had to feed him and him because he was starving. He started getting jaundice, wasn't really weeing much and was constipated so I knew he HAD to go onto bottles.

He didn't react to things you would expect him to and over reacted to other things. The Midwife did his heal prick test, warning me he may scream. He didn't. there was no reaction. He stayed still in her arms. She joked 'oh your a hard boy. You off for a tattoo next week?' He startled so easy to noise though. A cough, a sneeze, sudden laughter, the hoover, any loud or sudden noise resulted in him throwing his arms back and crying.

At 4 days old his Uncle and Aunt came to see him. They thought it was cool that he could hold his own bottle. He often had his arms tucked up to his face, never unclenched his fists unless he was asleep. All they had done was prop the bottle up with him in this position.

3 weeks old and I had him at the doctors already. He seamed to stop breathing whilst he was feeding. I was also concerned about his bowels as it seamed quite difficult for him to go. I was told to give him more water ( I was already giving him lots). Dude spewed whilst in there and the doctor asked if he had just had a bottle. I told him it was a good hour ago. He asked if he did that lots? He did so he said that he wasn't stopping breathing, he was breath holding because he had reflux. We was prescribed gaviscon to put in his bottles. This kid was smart though. He refused ever bottle with the gaviscon in it.

At his 8 week check the Health Visitor decided to check that the creases in his legs were symmetrical. I told her she would be lucky to get his legs down to check. They were always tucked up to his chest and i found it hard to get them flat. She struggled to get them down and initially thought they didn't match. She released them and pulled them down again. this time they did. She hadn't got his right leg down far enough the first time.

At 6 months I really knew something was up. He never opened his hands, his legs were now down but he was often as straight as a board. He couldn't grab his feet like other babies and changing his nappy was like trying to bend a plank of wood. I told the Health Visitor that I thought something was wrong. I was sure babies could at least roll about by this age. I asked her when a baby should have control of their eyes as he seemed 'cross eyed' allot. I was having difficult with weaning as he choked of everything as well. She assured me he was ''normal'' and that he was just a lazy boy but did refer him to have his eyes checked as both myself and his father have lazy eyes.

At 7.5 months we was invited to a group 8 month check up. All the other babies were sitting. All were crawling and some were even pulling to stand. My baby however just laid there. dead straight, pointy toes but could roll to his right halfway but needed a gentle push to get to his back. he couldn't roll from his front to his back though. They weighed him, then tried to measure him. They couldn't because his feet just wouldn't bend flat. The Health Visitor again told me he was just lazy and to come back in a month if he still wasn't sitting. We did this 3 times. Both at 8 and 9mnths I was told hes just lazy. There was nothing wrong with him. On the third time we went to see the baby doctor as well as he still wasn't able to do anything. He said, 'I don't think theres anything wrong, but I'll refer you to a consultant to put your mind at rest'

All Dudes family were saying to me, 'he probably has tight ankle tendons, they just release them and he'll be fine' I on the other hand was thinking more down the lines of Cerebral Palsy. I was pretty certain there was more too it then 'just' tight tendons. The kid was now not sleeping, hardly ate, sometimes going a full 6 weeks on just milk. He gagged on everything. Drowned on milk. Never opened his hands or grabbed his feet. If he had a toy I had to force his fingers open enough to wedge it in.

2 weeks before his 1st birthday, with his father in hospital due to liver problems from alcohol abuse, Dude was seen by a paediatrician and a Physio Therapist. It was noted that his toes were splayed and his legs rigid. Dude's father asked 'is it serious doctor?' his reply was 'Yes Quite. I think he has Cerebral Palsy but cant be sure till he's seen the rest of the team.' I was relieved. He didn't tell me anything I didn't already suspect. I was actually happy. His father called me 'cold' and 'morbid' because I was happy that my baby had just been diagnosed. He didn't get that I was happy because I KNEW there was something wrong and no-one had listened. A whole year to be told 'yes your right' and I now knew exactly what was wrong. It didn't change Dude. It just meant now I knew what to do with him and most importantly WHY he was how he was.

Dude was sent to the Child Development Centre where he saw a whole team of people. They noted that his legs where rigid though now he could commando crawl. He still held his hand's in fists but no-one would acknowledge this. He was diagnosed with Spastic Diplegia Cerebral Palsy. He had increased tone in his legs and increased and retained reflexes. The next few weeks saw our house fill with specialist equipment and our calendar filled with appointments.

I was about to discover how hard it is to have a child that was Differently-abled!

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