Brave :)

07 May

Tiptoes was a bit about David so now its Josephs turn.

Joe’s birth was traumatic, an emergency Caesarian literally at the last-minute with me on my hands and knees blanket thrown over me and being wheeled to the theatre with the surgeon’s hand somewhere you don’t want to know and the doctors/nurses asking me to give a verbal yes so that they could carry on and save our lives with me screaming and crying 😦  then when he was born he was whisked off to SCBU because his head was on the rather large size for a newborn. It took me a while to come out of the anesthetic and I had to wait a little to see him while they checked he was ok. They couldn’t find anything but because of the Caesarian etc we had to stay in for a few days which was good because it took 24hrs for the shock to hit me (that we both could have died or even just one of us).


During his first 4/6 months he had to go in regularly so that they could check for problems to do with his head/brain and he had to have a scan at about 6 weeks for which they put him under anesthetic (scary) to see what was going on inside, we also had a 24 hr stay at about 12 weeks because he kept holding his breath for far to long and would have to be nudged to breath out but they wouldn’t find anything wrong. I felt very guilty when he was around 6 weeks old I noticed he had some webbed toes (guilty for not noticing them before) but I think it was everything else that was going on!  Well as you can imagine it was a scary, sleepless 6 months but all seemed ok and he finally grew out of the breathing thing too. For a while things where ok but at two and half years he had to have an operation to seal a tube that is supposed to seal when the baby is still growing inside you that leads to the testicles which caused his to swell to the size of a tennis balls. When they where operating they found he also had a hernia in his lower abdomen and sorted that out at the same time.

With all that going on he was growing and doing the things he should at about the right time and he was a very quiet relaxed baby/toddler. When he started reception class he was shy and quiet but seemed to like going. He found somethings hard because his coordination was not that good but he was always willing to try. As in Davids case he was doing ok at first and his first school was great with him but as you know from my previous blogs we had to move and at his next school he wasn’t so lucky. Joe was shy and quiet and would shrink into the background at school and it took a while to find out that he was being bullied and pushed around for being different ! He didn’t like playing football and chasing games he preferred drawing and making things. It gradually got worse, he became unhappy and frustrated and his work suffered. He didn’t want to go to school and as with his brother David he would say he felt ill so he didn’t have to go. As he got older he did find the courage to bite back sometimes but he wasn’t able to manage it very well.  He to became touchy at home with me and his brothers but he too would be a different boy during the longer breaks from school.

Christmas 2008 I noticed that he had a swelling by his nose but wasn’t sure if it was just me, he’d had a bad cold so I thought maybe it was his sinuses.

Before Op

After about two weeks it seemed to be getting bigger so I took him to the doctors and within a couple of days we were in Brighton‘s children’s Hospital to see their Maxiofacial surgeon. He had to have scans and x-rays and they found a mass behind his nose which was also making the inside if his upper mouth swell up. The following Tuesday I took him in to have an operation to remove this mass which was very worrying because they didn’t know what it was until they got in there. They had to go in through his gum by removing a couple of baby teeth, it took a couple of hours and they found two cysts the size of golf balls which they removed. The Maxiofacial surgeon was pretty sure it wasn’t cancerous which was a great relief but he thought it could be something called Golin’s syndrome which I knew nothing about. Two weeks later he had to have another op to remove another cyst from his lower jaw which was about the size of a pear drop. All through this Joe was a star and I promised to take him to see John Barrowman(his favourite actor/singer) in concert for being so brave as soon as I could. (that’s for another blog) 🙂

English: British actor John Barrowman saluting...

John Barrowman 🙂

Since then Joe has had to have lots of check ups and has a brace fitted to fix his teeth because the cysts had moved all his secondary teeth which hadn’t come through yet out-of-place. They have moved to the side an towards the ears (the x-rays of this are amazing to see ) but he is getting there and still being very brave putting up with it all !

Besides all that we moved too and the first secondary school he went to here was terrible for him, he was bullied and even kicked in the face on the bus. The school did exclude the boy concerned but we where not happy to leave him there and he was still having problems with socializing with his peers and getting quite defensive by now.  Somehow the schools seemed to think or put across that it was him causing the problems and we still didn’t know that there was an underlying factor so we moved him again and told him that he had to be very carefull what he said and how he acted with the other kids. Well again it went pear-shaped within 2/3 weeks and again he was being picked on but this school realised on watching him interact that there maybe another factor in all this.

Now Joe (as well as David) is being home educated, it’s not easy but he is more relaxed and happier which is great. We have a lot to learn about ADHD/ASD etc but we are learning fast. We managed to deal with other stuff so we’ll get through this too 🙂


1 Comment

Posted by on 07/05/2012 in Uncategorized


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One response to “Brave :)

  1. joe

    25/08/2012 at 9:05 pm

    i have a new operation soon to make my teeth straight (scared) but i won’t be alone


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