Tuesday, April 29, 2014

It's been a year, but...

It's been more or less 12 months since Connor's first attack of Rumination Syndrome. At the time we had no idea what the problem was. All we knew was our child was extremely ill and nothing seemed to help. We tried changing his diet, cutting out certain foods and introducing others. We tried Gaviscon and special waver-tablets that they give to kids going through chemo. Nothing helped. He was tested for every allergy and every disease, including leukemia. Everything came back negative. The doctors shook their heads. He saw at least 6 different doctors but none of them knew whether it was physical, social or psychological (I now believe the latter. Which doesn't make it less of an illness.)

Three times he was hospitalised. The final time I took him to Princess Margaret Hospital for Children and refused to leave until he was admitted. Meanwhile his sick bag filled and filled until, finally, it exploded.

They admitted him on the spot.

24 hours later (or 3 months, depending on how you time such things) we had the diagnosis. Rumination Syndrome: no cure, no real treatment. Try chewing gum. Try breathing exercises.

Nope, they didn't work.

Finally around January, just as we, as a family, had learned to live with the illness and make adjustments to our life, we started to see a slight improvement. Day by day we noticed some lessening of attacks. 40 became 30, became 20, became 10. From attacks every day we started to see the odd day missed. This was mid-February and Lee and I were starting to raise the possibility of Connor returning to school. Mid-March we started to see records broken.

3 days clear.

5 days clear.

A week.

The only thing we could put it down to was time and maybe, perhaps, Chamomile Tea. It was something we'd tried about 2 days before the first signs of let up and even now we notice it gets worse if he doesn't have the tea for a while (such as when he's been at his Nanna's).

Vomiting would recommence in between but for shorter periods.

Two weeks ago Connor enjoyed 9 days straight before he started again and even then it was only once a day for 3 days.

We could handle this. If Chamomile Tea was the answer then we were happy to make it an ongoing part of our life. The school was contacted and yes, they were only too happy to take him back.

No conditions. Connor is now accepted as having a disability because he's registered as such with Centrelink. It's amazing the difference a legal label makes.

Guess which 9 year old is super-excited about his first day back at school tomorrow? It's been a horrible, awful year, but this is the light at the end of the tunnel.

Yesterday, Lee and I took Connor to meet with the teacher who'll be picking up Connor's schooling. She's a young thing, early 20s, sweet, kind and everything I could have asked for. In fact, she's everything I did ask for. I put in a request for a teacher who is understanding of Connor's illness, who will make allowances for it, will be patient, will understand when he has to run from the classroom without explanation. The teacher was allocated and came to the meeting loaded with ideas on how to handle Connor. Our boy will be given a card which he'll place on the table when he has to leave suddenly. This way he doesn't have to put his hand up, but she'll see at a glance why he's left. No other child will know what this means, just Connor and his teachers.

Yes, teachers. He's been allocated to an assistant (there is another child with needs in the class) and she will give him any help if there are problems. He's also being given a blanket, beanbag and pillow and a 'chill out' area, so if he feels too sick to continue, he can lay down, then return when he feels ready. The theme this year seems to be "Let's keep Connor at school." This time last year they called me at the first sign of vomiting and told me I had to pick him up. In the end I gave up and home schooled. The feeling this year is very different. They asked me how many vomit sessions constituted a mum-call. I decided on four, usually because this is the point where Connor starts to feel weak.

We've decided to break him into the system slowly, one day this week, one day next week, two days the following...etc. Today Connor told me he wants to go two days next week. I'm more than happy to let him self-pace the return.

I am so pleased and happy with this result. Meadow Springs Primary School is an amazing place and I'm incredibly happy with the education and care my children have received there. The staff are nothing short of wonderful and deserve all the recognition in the world. The consideration they are giving our boy is second to none.

Below are some photos I took a few minutes ago. They show Connor getting ready for his big day. I'm as excited and as nervous as a new mum watching her baby enter their first day at Kindy. Yes, I'm scared. What if it all goes wrong? What if Connor hates it and wants to go back to homeschooling? What if I return to my normal life, only to have him get sick again.

Well, it's a no-brainer really. I'll hold Lee's hand and make the decisions as they need to be made. We've got through this together, as a family and we'll go through the next chapter in the same way. Because that's what we do.

Hat into bag, just like any other school kid.

Vomit bags into bag. Not quite like any other school kid.

"Tomorrow is going to be the best day ever..."

"I'm so excited, Mummy. Can you tell?" Umm, yeah, I sort of gathered.

My happy, beautiful boy, returning to life as a 'normal' school kid. (Ignore the messy bed. That's how Connor rolls.)

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