Monday 27 August 2012

Marcia Braden

I've had a new website recommended to me with lots of interesting FXS information on it.  It's a website by Dr Marcia Braden, a Dr in Colorado who deals with education and psychological issues in FXS children.

Website: http://marciabraden.com/

There are a heap of awesome articles on her resource page (http://marciabraden.com/?page_id=104) and I particularly liked the one about FXS females (http://marciabraden.com/assets/2012/03/UniqueFemales.pdf) as I'm just in the process of coming to terms with Merryn's diagnosis.

I hope you find it as interesting and useful as I have.

Saturday 25 August 2012

Sleep Update

I'm always quick to report the bad sleeping, but I've not been so quick to report the good.  Maybe I was worried I'd jinx it.  :)

The little cherubs have actually been pretty consistent for a few weeks now.  Both wake once during the night (with occasional nights where they sleep through, but not on the same night of course) and then sleep through to between 5 or 6am.  Actually Connor is the 5am riser, Merryn wakes then, but if I go in and breastfeed her she will go back to bed for another 1-1.5hours.
Passed out on his couch before being transferred into bed.

Overall I'd say Merryn is doing a wonderful job, she is still having nights where I need to breastfeed her to settle her, but mostly we can just pat her back to sleep for those midnight wake ups.  Considering she eats like a horse all day long, I think some nights she is genuinely still hungry.  I don't know where she puts all the food!

The little man usually goes for a roll around the bed at some point during the night.  He groans and rolls and kicks and is generally disruptive.  Sometimes he resettles and other times I have to get up and get warm milk and melatonin.  Of course there are still the nights where nothing works like last night.  We've been up since 3am....actually I've been up since 3am.  He went back to sleep about 5:30am, just in time for Merryn to wake up for the day.

But this is a positive report, so I will just be grateful that this is not the norm anymore and try to have a nap sometime today.  :)

Tuesday 21 August 2012

Connor and Kindy

I had the most fantastic meeting with the local Kindy director yesterday.

It came after a fabulous week where Connor really showed he's not only ready for a Kindy environment but I think he needs it.  He was mimmicing the older boys at his cousins birthday party on Sunday, up jumping on the trampoline with them and climbing up the tree house.  And he's had play dates over at his aunts house and gone down to the park with the carer.  It all shows that with the right approach we can overcome his anxiety and he can really enjoy being out and about with others.

So when the Kindy director told me they were happy to use special funding to get an extra teacher in, they would support him even though he won't be potty trained and they would work with us to get him happy and comfortable in the environment, I was stoked.  It means Connor can go to Kindy and get all that extra input I think he's craving and time with other kids, but in a supported environment.

I think next year is going to be a huge year for my Connor bear and probably his mummy too.  :)


Connors Allergy Testing Results

Well it's taken over a year of waiting to get in to see the children's immunologist and guess what.....he's allergic to nothing.  Her assessment is his system is dumping when he's stressed, or tired, or unwell, which means everything goes through too fast to be processed and comes out still very acidic.  This is what is burning his bum and also making him feel unwell so he doesn't want to eat.  His body is probably putting a heap of hormones into his system at those times and it's making his whole system go out of whack.

Ironically this all makes perfect sense to me as that's exactly what my body does.  I've been diagnosed with Irritable Bowel Syndrome so I have lots of issues with my digestion etc etc (I won't go into the gory details).  It means there is no treatment really, but it also means I understand what is going on and I should be able to see when it's happening and be prepared.  It also means the sooner we can get him potty trained the better, so at the least he's not sitting in acid whenever it happens.  Now that's going to be a challenge.

Thursday 16 August 2012

Merryn's Cognitive Assessment - Part 1

We've done the first part of Merryn's Cognitive Assessment and she did great!  In fact she was still going strong when she got bored with the whole process and we had to call it quits.  This week we are going to finish the assessment off and the FECs team will do a report for us.  The downside of this is she is unlikely to qualify for FECs support and the upside is she is unlikely to NEED FECs support.  :)
Playing with the truck.

The therapist did say he could see why I had concerns about her in regard to anxiety and her delayed speech however.  He said her ability to communicate was markedly behind where it should be.  I'm taking Connor back to the Speech Therapist this week so I'll talk to her about booking Mezzy in for some for her also.

Overall I'm really thrilled though.  It looks like she is going to be OK intellectually and while that still means we will most likely have an emotional rollercoaster, it will be easier to ride if we can talk to her about it all.  Go my baby girl!  :D

Saturday 11 August 2012

The Child Psychologist - 1st Appointment

I had my first appointment with the child psychologist to talk about Connor's anxiety this week. I need some advice on the best strategies to work through the night time terrors, which have resulted in him now sleeping with us, and the separation anxiety, which means I can't leave him anywhere but home for short periods with a Carer.

Luckily for me the psychologist does home visits as both kids were asleep when she arrived. Connor hasn't had a daytime sleep for months but he's got a bit of a cold so he passed out on his bed unexpectedly at lunchtime. He proceeded to sleep the afternoon away which meant she didn't get to see him. Merryn did wake up though and caused havoc, as she does. :)

And the upshot of the appointment? Well it's going to be a long softly, softly strategy. After hearing all about Connor she agreed he wouldn't cope if we tried a firm approach. So for night time we will keep letting him fall asleep on his little couch in the lounge and sleep with us. The plan is to bring his toddler bed into our room and set it up beside our bed, then over time he will move into his bed and we will push it away from ours. I will also talk to Honey (sleep clinic pediatrician) about melatonin dosage, I'm thinking it needs an increase. During the day I have to keep challenging him so he can start to understand I always come back. But be careful not to push him too hard.

All of this is going to take time and patience and Jill is going to see us again in a fortnight to keep helping me with strategies. At least I have plan to move forward with now. We have Kindy starting next year and Andrew and I would like our bed back at some point (Connor takes up a lot of space and rolls around the bed groaning and thrashing multiple times every night, so he's not fun to sleep with).

Tuesday 7 August 2012

The Ophthalmologist

I mentioned in 'Where Connor Is Up To' that we went to the Ophthalmologist last week, I thought I should mention a bit more about that.

Last year I took Connor for an eye checkup as part of the process of getting him assessed for therapy. We got lucky and found an optometrist who actually has some Fragile X patients and knows about the possible complications FragileXies can have with their eyes. At the time I had no idea there were any so it was a real eye opener. Sorry, bad pun intended :). Connor had an eye turn which was coming and going sporadically so the Optometrist told us to keep an eye on it (the puns just keep rolling) and come back in six months if it wasn't getting any better. These things can correct themselves sometimes so it's worth waiting to see at this age. The other option is surgery so you want to be sure. If it isn't corrected though it's possible the brain will just stop using that eye altogether so it has the potential to be serious.

Earlier this year I took him back because it seemed to be getting much worse and got a referral to see the Ophthalmologist and last week we finally got in. Of course they couldn't see what I was talking about (isn't that always how it works) but they did believe me that I'm seeing something at home. The fact that Connor was kicking and thrashing on my lap while I tried to keep him still certainly didn't help the examination. Connor hates his face being touched so any sort of eye, ear or throat examinations are just torturous.

He ended up having three different people try to see the turn, plus eye drops to dilate his pupils so they could check the back of the eye. As far as they could tell in the microseconds they could see into his eyes whilst he wailed hysterically, it looks ok.

So now I have to try to take photographs with the flash. If the dots from the flash line up in his irises then they are both working together. I thought that was a neat trick. Only problem is getting the pictures. I foresee many blurry pics of Connors face being taken in the near future. :)

I hope it all ends up being a storm in a teacup. I don't like the idea of surgery for him and if glasses are needed he will never wear them. But we will see what the next four months bring and keeps our fingers and toes crossed.

Saturday 4 August 2012

The Light List

I have been terribly down for a while now, it's hard to find a light at the end of this tunnel. That being said there really are lots of positive things that I should pause to acknowledge. These are the things that keep me going and give my life meaning:
- Connor and Merryn, they are exasperating and frustrating and exhausting and special and surprising and absolutely wonderful....depending on the time of day. :)
- Andrew, who spends a lot of nights up with kids too, who is my partner through the good and bad and hasn't once thought to run away.
- My kids giggles and cuddles.
- My sister, who is on the same journey (almost identical down to the Fragile X son) and knows me better than anyone but loves me anyway and listens to all my complaints.
- My friends, who send me messages of encouragement that make me cry and lift my spirits and make me realise I'm not alone in the world.
- The respite people who now come to my house during the week, having them is starting to make me feel more human again.
- The councellor who is helping us work through it all.
- The therapists and specialists and health professionals we see who are very understanding of mummy's who are on the edge and help us as much as they can.
- The other mums I meet who also have special needs kids, everyone of them is so dedicated to their kids and so willing to fight the fight, they keep me inspired and give such great advice.

In a week I speak to countless people as we go to appointments and various activities and it would be a rare day that I come across anyone who isn't nice. We are pretty lucky to live where we are and have what we have.

I just have to try to remember that on the crap days, but now I have this list to refer back to. :) Love and light to everyone.

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.

Thursday 2 August 2012

Where Merryn Is Up To

The past few months have been very busy and very stressful. I have finally been working my way through the process of getting Merryn into the 'system'.

She loves hats.
Paperwork has been submitted for Centrelink assistance (the biggest benefit of which is getting a Health Care Card to help with medication expenses), ECDP was applied for (the same special playgroup Connor goes to), the Disability Services - FECs application was made (to get therapy), I put Merryn's name down for the SDU (where Connor's Developmental Pediatrician is and they also do developmental assessments) and I'm about to do the phone call for Better Start (to get funding for ongoing private therapy). It adds up to hours and hours of forms and phone calls and interviews, not to mention lots of waiting as things get processed and we get put on the end of huge waiting lists. Thankfully it's going pretty well so far, although that's mostly because I've got some help from the Social Worker at FECs who has taken pity on me and my addled brain.

Merryn has now been accepted into ECDP so she officially has playgroup every Wednesday. FECs are doing her intake assessment in a few weeks time to see what services they think she needs right now. They'll do a cognitive assessment at that time as well which will be interesting. We're still waiting for word back from the others, but that is to be expected, you usually have to wait 6 to 8 months to even get an acknowledgement from any of these services.

In the meantime Merryn is doing well. She now waves and says bye at every opportunity; if she's leaving a room, if you're leaving the room, if someone stands up. :) It's very cute. Other than that she's doesn't have words, but she certainly makes a lot of noise. She's also walking around, climbing up on things and generally into EVERYTHING, I have to keep an eye on the little monkey. She's has a very mischievous streak and will often pout at you when told she can't do or have something. Overall she seems to be developing at a quicker rate than Connor did at that age, so I'm hopeful she will not be as impacted as he is.

Wednesday 1 August 2012

Being Undermined

My mother has now been living with us for 9 months. For many reasons (personality clash, history, she's a nut bar) this has been a nightmare, but of all the reasons right now at 2:50am in the morning, it's the way she's messed with my sleep training Merryn.

Firstly we couldn't move Merryn into her room because mum was there. Then we did (when she moved out, supposedly for good, a few months ago) but when she came back a few weeks later she went in with Mez because we had nowhere else to put her.

So now she gets Merryn out of her cot and doesn't follow any sort of strategy, let alone the responsive technique I'm trying. So Mez is now totally confused and back to screaming for hours if I try to pat her and leave her to sleep in the cot.

Thankfully my mother is moving out next week, but now I feel like I'm back at the beginning sleep training this baby! Thankfully I have at least night weened her but sheesh is it frustrating!

Ooh silence...it either means Merryn is finally asleep, or that woman has her out of her cot again. Bugger it I don't care, I'm going to bed, Connor will be awake soon so I need some sort of nap before facing another day.