Friday, 3 August 2012

Where Connor Is Up To

Connor has been on SR (slow release) Melatonin tablets for 6 weeks now.  The first 5 weeks were a nightmare and things degraded in the extreme.  His anxiety is now so bad that I can't leave him alone anywhere except home, during the daytime, for short periods of time with someone he knows.  In the evening and at night he becomes hysterical if I'm not with him.

Asleep on Daddy's lap.
All that being said in the past week we have actually had some really good nights.  He's passed out in the lounge room by 6:30pm, been transferred into bed with me when I go to bed and slept through to nearly 5am.  I'm thinking that he's starting to be reassured by us being there and when he comes back up into light sleep during the night he's able to go back to sleep.  We have the next sleep clinic appointment in September so I'll talk to the specialist then about her thoughts.  I'm supposed to fill out a sleep diary for that appointment too, so that might reveal something.  Just got to find the energy to get it started.

As for the day time, I'm really worried.  He is due to start Kindy next year and at this stage there is no way I could leave him there.  I've tried him recently at My Time, a program for mum's with kids with disabilities so we can have a cup of tea and chat while the kids are cared for. He's become hysterical and vomited the past two times.
Right now I'm not sure how long he'll have to sleep in with us or how we will work through this anxiety.  I've left a message for a Pediatric Psychologist so perhaps she'll be able to give us some ideas as to what the next steps need to be.

Eyes dilated at the eye appointment.
Other than that we had he's eyes checked yesterday.  Sometimes one of them seems to not move when it's supposed to.  Of course it all seemed fine yesterday, but thankfully the Opthalmologist believed me so now I have to try to take photos of when it's happening to take in to a followup appointment in four months time.  I'll add that to my list of things to remember.

Then in two weeks time we are finally in to the Immunology clinic.  His poo still sporadically burns the skin off his body every few weeks or so forming open sores, so whatever is going on is still a problem.  It's taken us 12 months to get in to see the specialist (there are only two in all of Queensland) and it was nearly 2 years.  The pediatrician was adamant the referral had gone through, but thankfully I followed up and it seems the system at the Royal Children's Hospital has some flaws.  I'm just lucky the registrar at the Immunology clinic took pity on me and used the date the referral was 'supposed' to arrive, not the actual date when giving us an appointment.

Smiling for mummy.
What else, oh yeah, today I talked to the Speech Therapist we were seeing last year and I'm taking Connor to see her in a few weeks time.  His talking doesn't seem to be going anywhere with the limited therapy we are getting at FECs.  Unfortunately their philosophy is to teach parents what to do and then we are supposed to treat our own kids.  I'd say some bureaucrat who's never even been in the same room as a child with a disability came up with that brilliant idea.  Yes teach us stuff to do with our kids, but don't expect sleep deprived, stressed out of our minds, time poor parents to then be therapists for our kids too.  We are struggling just to be their parents for goodness sake!  Anyway, off my soap box.  They moral is we will be starting some extra therapy again soon.

Finally I talked to the C&K Kindy today.  We got Connor's acceptance letter this week.  I enrolled him when he was still a tiny baby and way before we knew there were some real issues with his development.  I have to say I nearly cried when it arrived.  It felt like the last vestiges of the normal life we thought we were going to have had just been destroyed.  It took me back to what my dreams were for him at that stage and how much that has completely changed in the last 18 months.  So I freaked the admin out today by asking if they could support a Fragile X child in their program, that was certainly the longest pause I've heard on the other end of the phone for a while.  :)  She's sending it up to management and the committee and will get back to me.  I'd say the answer will be...'we are very sorry but....'.

So, eyes, allergies, sleep, anxiety, speech, kindy.....yes I think that's Connor for now.

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