So Zack went to hospital for his appointment with the neurologist about his epilepsy. We hadn't seen a few of the familiar doctors and nurses for a while (which is a good thing as it means Zack is behaving himself) but this meant we had a good half hour of, oh my he's shot up, look at the hair, look at the hair, it's crazy.
Even his neurologist commented on his hair, oh and most importantly how good Zack's posture was. Yet another professional stating that his posture had improved. More proud mummy moments.
We discussed that he is now only on his Vigabatrin and that he has been on it for six months and we were concerned that it might start affecting or damaging his peripheral vision. Since Zack's eyesight has much improved we don't want to take the chance of making things worse. So a new plan was agreed that we would wean him off the Vigabtrin. If his seizures go up, that is, he starts having more than his usually, barely there 3 - 5 a day, then we introduce a drug called Lamotrigine, which has less side-effects.
We are now in the process of weaning him off his Vigabtrin over a course of two months. I can't see him being medication free but you never know, stranger things have happened. It was also suggested to us that we could cross over the medications, take him off his old one and introduce the new one at the same time. But how will we know if he really needs it if we don't give him a chance to be medication free?
I guess here we are again in unknown territory and only time will tell. At least we got lots of very happy with Zack and things are good for him and very pleased, so that's nice. Oh his paediatric consultant came and said hello and gave us a thumbs up (I think this means good and well done from him).
All in all a very good day. Then came what shall be known as car doorgate.
Oh my god. I have injured my child. Yes I am mortified.
Thought I would pop out to Tesco with the Pants to get a few bits. Surprise, surprise no parent and child places left, (well there's only eight and for God's sake most of the people that shop there have kids so come on, by the way I would never have said that, six years ago, I would be cursing those parent and child spaces).
So we park in a normal spot and it's a tight squeeze, and it starts lashing down with rain, I go to get Zack out of his car seat and out of the tiny gap between the car and the door, when he drops his head forward and, whack, he bangs it on the car door.
Ten second delay then desperate screaming from Zack. You know you get that feeling in the pit of your stomach and you feel sick, magnify that by at least a 100. I get back in the drivers side with Zack who now has tears running down his face and take a look. Oh God, there is blood, he has gashed his eye. Oh God, his eye is swelling up. I am no longer a good mummy. Five minutes later Zack has stopped crying is back in his car seat and we are going home.
A call to Dan equals me in blind panic. Do you think he needs to go to A and E? Will his eye ever go down? What do I do?
Two hours later Zack is laughing in his little room. His eye has gone down. He just has a scratch. It only bled a couple of dots mopped up with a tissue paper. Today it's almost healed. Okay, slight over-reaction. I still feel like I let him down. He still loves me. Dan still reminds me he fell down the stairs with him. Oh yeah I recall, may be I'm not so bad after all.
Lesson learnt, when getting a child with special needs out of a car seat be super, super careful with their head. Just because they have good posture and head control doesn't mean you can get cocky.
This isn't my blog, it's Zack's. Zack arrived here seven weeks early, he had no heartbeat and wasn't breathing. He suffered catastrophic damage to his brain, he has cerebral palsy, problems with his hearing, vision and feeding. Our lives are both challenging and extraordinary. He is a gift. I hope that for whatever reason you find yourself reading this blog it can go some way to help those in the same situation and some way to remove the cloak that covers parenting a child with disabilities.
Saturday, 19 June 2010
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2 comments:
Special needs or not, we've all been there Linzi. At two years Ashley walked through an open patio window with an 8 inch drop to solid concrete - which met the front of his head with a seriously loud thud. Bruise the size of an orange for a day or two - no long term harm - except to Mum and Dad who felt rubbish for a week.
File under 'the joys of parenting'and look forward to the next chance to feel terrible. :0)
Thanks Nigel. Feeling less guilty already!
However, I think Dan seems to have raised the stakes in self inflicted injuries........it has not been a good weekend.
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