What a whirlwind!

Wow what a crazy couple of months!  We have bought and moved into our new house, had about a million appointments for the kids, organised Connor for Kindy for next year and done lots of visits to prime him, and organised Merryn for one day a week of day care.

So where do I start......Well the house is fabulous and the kids are loving it.  They can now wander in and out of the house and yard at will (it's not too many steps down into the yard and it's all fenced and safe) and they love the new trampoline.  Connor is developing some serious leg muscles!

The sleeping went seriously downhill over the past few months and Merryn's eczema got so bad that she was scratching till she bled.  No surprise that we were getting no sleep at all with her and she went from night weened to breast feeding all night again for comfort.  During that time Andrew was in all night with Connor who has taken to pulling his bits out and weeing all over the bed.  Andrew and I were averaging about 3 hours of sleep a night and a pair of walking zombies.  Thankfully things have turned around on that front now though.  We got into a dermatologist for Mez who has oils, creams and a treatment and management plan that is working.  Within a few days of starting the treatment she started to sleep better and the eczema cleared up almost overnight.  I was stunned and thrilled.  And both Andrew and I are out of Connor's room and only go in to help him get to sleep if he gets distressed.  This has all just come about in the last week though, so I'm not getting my hopes up it will continue just yet.  Call me a cynic, but have 3.5 years I know better.  :)

Merryn has had some more assessments and has come out as average across the board!  She is on the low side of average for her communication, but never-the-less the results were awesome!  She is doing really well, other than the fact she is soooo stubborn and has taken to have temper tantrums where she throws herself on the floor.  I hope she grows out of this phase soon!

We have been going down to Connor's new kindy for an our every week to get him used to the teachers and environment.  He seems to really like it down there so I have high hopes that he will be ok if we transition him in gently next year.  I also got the carer to do a few days in at ECDP without me.  That went really well, so I think next year at ECDP should be fine.  I can't believe it's all coming together!  6 months ago I didn't think he's even make it out of the house.

Once I realised I could get some assistance for child care I made some enquiries for Mez to go to day care once a week while Connor is in kindy.  It's all organised for her to go in on Fridays and the day care is next door to the kindy so it will be really convenient.  I'm going to start her there before the kindy term starts though because I think I'll need to ease her into it.

The other main development has been around Connor's words.  He now says done, bath and car and is consistently using the more sign.  He fills in heaps of words when we sing Wheels On The Bus, Baa Baa Black Sheep and a few other songs, but that is more phonetics than actual words.  He just loves making sounds with music.  I have to make some enquiries at a local place that does music therapy.  I think he would love it.

So that's a bit of an update on us.  I'm off to write Christmas cards, I'm sooo not ready for Christmas, but at least I got the tree and some decorations up.  :)

No Sleep and Red Bottoms

I'm back to the diet theory again.  Yes I know I go around in circles with these things, but seriously, the kids had some junk food at lunch time yesterday and by yesterday arvo they both had red bums.  Then last night Connor was up from about 12:30am until way past 3am and Merryn was pfaffing around from 9pm until midnight and then had a few little wake ups from then until 6:30am.  All in all Andrew and I are walking zombies and I don't think the kids feel that great either.

I have been so tired and swamped that I've allowed things like tinned spaghetti and BBQ shapes to feature too often in a regular week and I think it's having an impact.  We are still careful on the dairy, but I don't think that's enough.  All this means I need to get out the FODMOP (http://shepherdworks.com.au/disease-information/low-fodmap-diet) book and plan a week out.  It requires time and organisation, which are two things I'm struggling with, but somehow I've got to make it happen.

I'm hoping I can come up with a list of stuff that is good, then make things up on the weekend.  Then all I have to do is pull things out of the fridge or freezer when snacks and meals are required.  This will reduce the times where I'm trying to prepare food and I'm too tired to think and/or the kids are yelling at me.  Now to get it happening!!!

Anxiety and Sleep

The sleep clinic pediatrician said something interesting at our last appointment.  She said kids/adults with anxiety can often have sleep issues.  She isn't an advocate of using anti-anxiety medication on kids under 4, but she did feel that Connor was going to be a likely candidate for it.

I have had an inkling for a while now that he was going to need some sort of medication for his anxiety but I hadn't realised it could also help him with sleep issues.  While I won't be rushing into giving him that sort of stuff, it is certainly food for thought.

In the meantime the sleep clinic Pediatrician has sent Connors files through to the Child Psychologist.  She said she will chat to her before making any sort of recommendations for further medication.  I think Connor is going to start to rattle soon.

Merryn's Turn To Burn The Midnight Oil

After Connor's efforts on Sunday night, little Mez didn't want to be out done last night.  I gave up after 2.5 hours and called Andrew in around 1am.  I found her in bed with him about 5am.  She wore him down until he gave up in the interests of a few hours sleep.  The poor love stumbled out of here at 7am to go to work.

These kids have stamina, I'll give them that!!!

The Circadin Experiment

The slow release Melatonin tablet is called Circadin (http://www.circadin.com/). It is supposed to mimic the release of Melatonin into the body overnight so you can get natural sleep.

Connor's fabulous reaction to the Melatonin drops in the early evening have been miraculous, but his continuing issues during the night have meant we have been trying the tablets as well. At our last sleep clinic appointment we discussed what was going on (wake ups that last for hours and disturbed sleep) and we decided to try a week of double dose, a week of single dose (which is what he's been on for a few months) and a week of nothing, keeping a sleep diary to record results. We are a week into double dose, it's 3am and I've been up since 1am with boofhead (no I'm not feeling in a kindly disposition to him right now). So far my conclusion is its not working. The Dr said she suspected that might be the case and if so we are basically screwed. As in nothing is going to work, he will always have sleep issues and we are going to have to suck it up (not how she actually worded it).

I'm thinking of putting a lock on his door at night, sound proofing the room and moving back into my room about now.

*sigh*

Well Merryn is awake so I'd better go. Night!!!

More!

My boy said 'more' yesterday! Clear as a bell, and at the same time as he made the sign. Andrew and I stopped and looked at each other to be sure we'd just seen and heard it right.

It's the little things that make my day. :)

Merryn's Eczema

Last night was one of the worst nights I've ever had with Merryn.  She went to bed OK, but was awake by 9pm.  By 10:30pm, both Andrew and I were getting cranky with each other from the stress of her constant screaming and Connor had been woken up in the process.  If you went in and cuddled her or patted her in the cot she would settle to sleep, but 5min later she was going nuts again.

In desperation I went in to our bed with Merryn and Andrew went in with Connor.  Connor settled for Andrew but I was up nearly the whole night with little miss.  She would cuddle up and go to sleep for 5 or 10 minutes, then suddenly wake and start thrashing around, and that was with two lots of Melatonin by this stage.  I got to the point where I got very upset with her and eventually she fell asleep for a few hours before dawn.

It wasn't until the sun came up that I realised what had been going on.  Her entire body was covered with the worst eczema that I've ever seen on her.  For some reason overnight it had gone crazy and the poor little love was so itchy she was jumping out of her skin.  Did I feel like the worst parent in the world or what!!!  I have absolutely no idea what caused such a huge reaction, which is quite concerning.  So today she's had and antihistamine liquid, been covered in moisturiser and quarterzone cream and been wearing a full body suit to stop her ripping her skin off.

I really hope it all works in time for us to get some sleep tonight.

Merryn's Screaming

Over the past month Merryn has gone from being easy to put to bed for her daytime sleep and in the evening, to a screaming banshee. No amount of breastfeeding, cuddles, leaving her to settle, back and forth or any other technique known to man or beast works. She just goes nuts.

I'm about ready to tear my hair out. Whilst she's never been a good sleeper, I could always count on getting her down and having a few hours respite. Not anymore, it's a battle royal for every sleep and often I don't win or its takes an hour or more.

I discussed it with the sleep clinic Pedeatrician and she has prescribed Melatonin. I hope it works, I'm going nuts with all the shrieking and screaming.

Singing The Words

Connor has started to sing!

He has always loved music and I have used singing as a way to calm him since he was a baby.  In the past few weeks though he's started to do little motions with songs (like the wheels on the bus) and he sings the tunes with nonsense sounds.  Occasionally he even uses real words like Beep, Beep and Baa, Baa!!!

I'm sooo thrilled, something has made a connection in his mind and helped him make a leap.  I've asked the therapists about music therapy and they are looking into what is available in our area.  Connor always has music playing on any toy or device (iPhone or iPad) that he is using, so I'm not surprised to see him respond to a musical approach.  I'd just like to figure out a good way to use it.

New Communication Strategy For Connor

We are trying a new application for the iPad to help Connor communicate.  The app is called Sounding Board and the Speech Therapist has recommended we try this approach because the PECs and sign language attempts have been largely unsuccessful.  Although Connor does use one or two of the cards, he ignores them mostly and won't use any but the few he really likes.  This has made it impossible to expand on it and use it as a communication system.

The idea of the app is you take photos of things like toys, food etc and attach the sound of your voice saying the word to them.  Connor can then tap on the picture to ask for things.  We can also create icons for words like help.  He is responding well so far, so I just have to keep practicing with him.  The hope is he will respond more to this technique as he looooves his iPad and it also makes sounds.

*cross fingers*

Child Psychologist Update

We have been doing quite well working through all the anxiety stuff.

The daytime is progressing well with Connor having play dates over at his aunty and even spending all of Play Group last week with the Carer while I went off to another appointment.  Apparently he was concerned and looked for me but didn't get upset or vomit.  BIG improvement, next years is looking very promising.  The efforts being made to give him more confidence are paying off very well.  I'm so relieved.

The night time hasn't progressed far but we have made some forward progress.  He no longer goes to sleep on the couch out in the lounge room, we can put him in his bed with his milk and he goes to sleep by himself.  I have to go in and sleep with him (his bed is now a queen size bed to make it more comfortable) or he will wake up screaming hysterically and run down the hall looking for us about 9:30pm.  After that it takes hours to get him settled and back to sleep and then there is no guarantee it won't happen again a few hours later.

The psychologist is really happy with his progress and has said to keep doing what we are doing with the night time and not try to move out of his room too quickly.  Hopefully by the time he's 18 I'll get to move back in with Andrew.  :)

MiNDFOOD

We were featured in a story in the September edition of MiNDFOOD along with two other families who also have inherited genetic conditions.  The stories of the other two families made me cry.  As always I'm just so relieved that we get to keep our kids and don't run the risk of them dying of this condition.  Just click below if you'd like to have a read.

Merryn's Cognitive Assessment - Part 2

The whole assessment has been completed.  They ended up doing a full Bayley Assessment (a series of measurements to assess cognitive, fine and gross motor skills and receptive and expressive language).  As I mentioned she did really well in the cognitive section.  The results for fine motor skills were good too.  The other three sections were below average though and bordering on very bad. Basically she isn't great at understanding what is being said and she can't tell us what she wants (other than by screaming at me, which she does often).  She also has trouble with things like stairs because her gross motor skills are delayed.

The upshot of all of this is she will need speech therapy and physiotherapy to help her learn language and communication and help with her gross motor skills.  It's a much better result than Connor but it does mean we will be going to therapy for Merryn too.

The therapist has said he is happy to assess her in 6 months and see where she is up to as well.  Because she is so young it can be difficult to know how she will develop, so he's happy to keep an eye on her for a while.  I think that sounds like a great idea.

I guess I'm pretty happy with the results.  The fact that she is intelligent will hopefully mean we can work through the communication stuff.  Then the only other area I'm really concerned about is anxiety and depression.  But we will just have to wait and see about that one.

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.

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.  :)

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.

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

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).

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.

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.

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.

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.

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.

Ellen Barron Family Centre (take 2) - Day 4

When Merryn woke up at 6:30am after the worst night we'd had all week I felt like the whole week had been a waste of time.  We were going home the next day and she had spent the night doing exactly what she does at home.  Waking frequently, not responding when you try to settle her and grizzling and crying for long periods of time.

She seriously loved that frog!

We headed down to breakfast after having a chat with the nurses who reminded me this is a process that has forward and backward progress and that if we are 'consistent and persistent' it would eventually pay off.  Easy for them to say, they haven't been at this game for 3 straight years *grumble, grumble, why are there no magic bullets, grumble*.

With breakfast over I was pulled aside by the Dr again.  She had been having a think about Merryn and since she knows Connors Developmental Pediatrician she volunteered to talk to her to help smooth the way. I thought it was nice of her to offer and obviously she had been thinking of us and our situation so that was nice.


I then headed out with one of the other mums for a walk down to the shops.  I figured after the past few days of disastrous daytime sleeps I would try to really wear Mez out and put her in to bed later.  We had a lovely time and got back in time for a quick bite and then in to bed.  She crashed with no complaints and I got to relax and have a nap.  After last nights efforts and the walk this morning I really did need it too.

Once Mez got up we wandered down for a snack and headed to the playroom.  It was all becoming a bit of a routine, but in a nice way.  It was all very easy and relaxed.  I started to think about having to go home and wasn't at all looking forward to it.

A girl on a mission!

Dinner, bath and bedtime all went really well and by 7pm she was fast asleep.  I headed down to the kitchen for a milo and chatted with some other mum's.  It was the last night there so I wanted to see how everyone was going.  It was a mixed bag in terms of what had been achieved over the week but everyone was hoping with more practice at home they'd be able to get it all sorted out.  I think the Centre should send a nurse out to everyone's home in the week after and do a quick check of the environment and see how everyone is going.  The controlled environment is fabulous for teaching the kids good habits but the reality of home is not nearly so perfect for most of us.

I had a fairly good night, well better then the night before anyway.  She woke every 3 or 4 hours but wasn't too hard to settle.

The next morning I had us all packed and ready to go by 9am.  I wanted to get home before it was time for her morning sleep and I had mum all lined up as my chauffeur.  Unfortunately my car boot hadn't been closed properly since Monday so the battery was flat as a tack.  Luckily a friend could come and get me!

I Hate Him

Since the respite Connor has slept in bed with me every night.  From the last night he started with night terrors and would come out at about 9pm and just scream hysterically until he finally passed out.  So now some nights he starts out in his bed, some nights in the lounge room, some nights he just comes in with me.    Sometimes he stays asleep most of the night but usually there are hours when he's rolling around moaning or screaming or he just sits up and wants to play.  Putting him in his bed just makes him scream hysterically.

There is no escape.

Three years of no sleep and I'm just about ready to kill myself.  There doesn't seem to be an answer, he's on slow release melatonin now, he doesn't sleep during the day, I've tried every technique known on this planet.  At the end of the day he is broken and I have to figure out how 3 hours of broken sleep is supposed to keep me alive.

Respite

Obviously I've not been blogging recently.  It's been a pretty insane time since I got back from Ellen Barron. I finally cracked under the pressure last week.  Merryn was screaming at me after another long night and nothing would settle her.  I lost my temper and screamed back, put my hand over her mouth for a few seconds and basically just fell to pieces.  I was so tired, I just wanted her to stop.  I desperately wanted to lie down and sleep.  I don't know if you can understand getting that tired that you can hardly stand up anymore.

Merryn asleep.....ahhhhh

I finally got her calm enough so I could lie down, pulled myself back together and it wasn't until a few hours later when Andrew had already gone to work,  and the kids were both up and had, had breakfast that I really thought about what had happened.  I called Andrew and my sister and started crying and my sister said it was time to call the the psychologist at the FECs team and ask for help.

Don't get me wrong, I've been telling them all what's been going on and that I'm beyond exhausted for a while now, but apparently it takes a mother to tip over the edge to get anyone to do anything about it.  The following night the respite arrived.  For 7 nights straight I have a carer from 10pm to 6am.  I get to go to bed (with earplugs in) and I don't have to get up to the kids at all.

Connor in the hammock at his birthday party

It's wonderful.  I only have one night left of it and I'm dreading having to go back to the way things were.  I should feel nice and rested after the last 6 nights of 6 to 7 hours of consecutive sleep but I don't.  I feel like I've been run over by a bus.  I explained it to Andrew as moving through porridge.  I think the problem is I'm so far beyond sleep deprived that I really need a lot more sleep than that to fix the damage.

Tomorrow I take Connor to the sleep clinic and will be talking to them about slow release melatonin.  I'm hoping that will stop the nights (3 or 4 per week) where he wakes up around 2am and runs around the house playing until dawn (nothing I've tried so far seems to work in keeping him in bed).  He then passes out around 5 or 6am and sleeps for 3 hours.

Merryn has been getting better. She only wakes a few times during the night and is fairly easy to settle now.  I do need her to get into her own room though, which I can't do until my mum moves out as she seems to sleep much better when she's not in with us.

So as always I have plans afoot to try to fix the problems.  Lets just hope these ones work.

Apologies

Just a quick note.

It's been a few weeks since we left Ellen Barron and I've not finished writing up the days and not done many followup posts.  The day after we got home I got sick, then the kids went down again and Andrew eventually followed.  Hopefully we are coming out the other side now and I can get back on track.  I'm hoping to finish the Ellen Barron posts today and then get back to my normal posts.

So sorry for the delay and bare with me.  There is lots to tell and I want to share it i.e. Connor's muscle tone, the developmental process to eating (and where Connor is up to), teaching the kids nose and mouth.  There have been some aha moments and I think we might be turning a corner with getting me a bit more organised.....now that would be an achievement!!!  :)

Ellen Barron Family Centre (take 2) - Day 3

The second night went well too.  After going straight to sleep at about 7:30pm, Merryn woke at 10:30pm for a breastfeed, got patted back to sleep quite quickly just after midnight, slept through to 4:30am and had a breastfeed and then didn't wake for the day until 6:50am.  That meant I got a few really good blocks of sleep and felt like I'd been hit by a truck as I'd not had so much sleep for a very long time.

A few minutes after I picked Mez out of the cot the nurses knocked on the door, so they must have noticed she was gone (did I mention there is window in the hall so they can see into the nursery?).  We did the usual rundown (I haven't been bothering to call them much during the night as it's been going so well) and Merryn and I headed down for breakfast.  As usual Merryn mowed through a few courses of fruit and toast and cereal putting the other kids to shame.  I don't know where she puts it.

It was time for play in the playroom then.  Merryn loves it and I got to sit and chat with other parents.  All you have to do is ask how their night went and the conversation flows from there.  I'm always amazed at the things people have been going through with their kids and it's not just first time parents either.  There are people in there with 3 or 4 kids and it's the youngest one who has the 'issues'.

Merryn looooved the Frog puppet

Just before 10am Merryn was showing sleep signs so we headed in for the morning sleep.  Disaster!  The same result as yesterday, screaming that escalated to vomiting.  I was really not happy and decided I needed to rethink our strategy.  I put her in the Ergo and went for a walk down to the local shopping centre for a coffee (actually a Soy Chai Latte because I can't have caffeine or dairy).  Then we headed back to Ellen Barron for a quick lunch (she was so tired she could hardly eat)  and I got Merryn in for her sleep just after noon.  Not surprisingly she feel asleep instantly and slept for 1.5 hours and I got to have a nap too.  Bliss.


Merryn had just woken up when the Doctor came for a chat. We talked about Merryn's Fragile X and where we were up to with getting her assessed and finding her a Developmental Pediatrician.  Which basically is at the beginning, all I have done is have her tested so far.  The Doctor recommended we try to get her into the same Dev Ped as Connor.  I hadn't thought I could do that because she is with a Developmental Team but the Doctor assured me she could do that and it was worth asking about.  I'll chase that next week when we get out.

My sister, Shelley dropped in for a quick visit with a few things I needed and we took the kids (her 3 and Mez) to the outdoor play area so hers could go nuts while we chatted.  It's always good to talk things through with Shell.  She knows exactly where I'm coming from, both as a sister and also because she has an Aspergers and Fragile Xy of her own.  There is definitely something a bit hinky on the genetics side in my family (wish we'd known that a few years ago).

The afternoon flew by with snack and playgroup time, which Mez loved and actually got up and had a dance (you know that little bob babies do, it's soooo cute)!  She went down to sleep really well about 6:30pm and then the night was on.  She was up every few hours, she was grizzling and really hard to settle, it was an absolute shocker.  Felt like what it's like at home.  I was horrified, were we really going back to the same old ways!!!

Ellen Barron Family Centre (take 2) - Day 2

Sleep in, yaaaaay!!! The little poppet didn't stir until 8:15am after her 5:30am feed so I just lay in bed and enjoyed it.  I was a bit in shock that she slept in so late actually.

I rang the nurses to let them know we were still alive and they came down for the morning debrief then we headed down for brekky and Merryn ate half the kitchen, as usual.

It was almost embarrassing how much she ate when sitting beside the other parents trying everything to coax their kids to even eat a few bites.  Some parents come in to the centre for eating problems and one poor little baby (6 months old) would hardly have 500ml of milk a day and was about to have a nasogastric tube put in if things didn't turn around.  My Merryn shrieked at me if I didn't feed her fast enough and ate 2 or 3 courses every meal.

Merryn enjoying a snack in the dining room

I headed up to the first class (Responsive Settling) of the day after brekky, but only lasted about 15min before Merryn started getting cranky and showing sleep signs.  Seriously, it wasn't quite 10am!  I let the nurses know we were going in, fed her and started trying to settle her (with a nurse by my side).  It did not go well.  She screamed and shrieked until 30min later she puked.

I'd been told to watch for sleep signs, I'd done that, but it had completely failed to work.  The nurses said often when kids haven't been getting enough sleep they do a lot of sleeping when you get them into a good routine, so her wanting to sleep again so soon in the morning hadn't seemed strange.  Still, it hadn't worked and despite her STILL seeming very tired, I gave up and played quietly with her in our room before heading down to lunch.  The idea of Responsive Settling is about listening to your child and understanding the difference between a cranky baby and a distressed baby.  I felt she was getting way too distressed and needed to reset after our first attempt.

When I put her down at 12:20 after a breast feed, she went instantly to sleep after 10min and me only going in once to quietly tell her to lie down.  She then slept for 2.5 hours.  Very civilised.

I did another debrief with the nurse before having a sleep myself.  Every morning and afternoon there is a debrief and we decide if we are on track with the plan.

On my way out of our room later that afternoon with Merryn, I came upon the mum across the way in tears and the sounds of her 6 month old son screaming from inside their room.  It reminded me of my days with Connor in Ellen Barron.  After standing and trying to reassure her for a few minutes I left her to go back into him and went down to the nurses station to mention to them they should have someone in with her.  It was only the second day afterall.

Merryn and I had a lovely time at playgroup.  She started out very shy, but was soon in amongst it all and loving the singing.  The afternoon and evening were just lovely and ended with my putting Mez into the cot and her smiling up at me before falling to sleep without a sound.  Oh my!

I spent some time writing some notes about the gems of advice I was starting to get.  Every nurse does things a bit differently, which you can either get frustrated by, or just use it to your advantage to develop your own style.  Mez and I are just refining ours.

One of the exercises I did with the nurse today was when she asked me what three words I would use to describe Merryn (they do a bit of a psych profile on you using some sneaky little questions *grin*).  They words I came up with where, Joy, Mischievous and Strong Willed.

Ellen Barron Family Centre (take 2) - Day 1

Merryn in the play room

After the two weeks from hell I was relieved and excited to be checking back into the Centre. My only concern was Connor, he has been having panic attacks if I leave him with anyone else.  I'd left him with his grandmother and my sister at her house in the hopes he would be fine with familiar people in a familiar environment.  My fears were realised about 20 minutes after we had checked in when my sister called to say he was hysterical and getting to the point he was going to vomit.  I suggested she try taking him home (I owe her a case of wine for all she did for me this week) and see if he would calm when in his own house.  A few hours later she rang to say it had worked.  So now it appears, if I want to leave him it can only be when he is at home and someone else comes and stays with him.

In the meantime Merryn and I were settling right in.  She went down for her morning sleep with not too much fuss (about 15 minutes of yelling) and I got all the usual 'admin' done with the nurses and unpacked.  Unfortunately I'd been up since 1:30am with Connor so what I really wanted to do was sleep while Merryn was sleeping.

After lunch we went to have a play in the play room until Mez started to show signs of being tired then I tried for her afternoon sleep.  I say tried, because it was a complete disaster (even with the nurse there assisting) as all of my attempts at getting her in for an afternoon sleep have been for a while now.

Andrew and Connor came up and saw us after dinner.  When Connor saw me he put his little hands together in front of his chest and he just quivered with excitement.  It was so adorable.  The kids had bath time together before Andrew and Connor went home.

I was very nervous about how the night was going to go but it pretty much went to plan.  The idea was to stop breastfeeding her to sleep all night (with the exception of a feed if she woke around 10pm) and of course no co-sleeping.  I had done ok trying to stick to the plan in the past two weeks so I was hoping we could work out the 'kinks'.  It took 15 minutes for Merryn to go down for the night (not surprising considering she'd been awake most of the day), she woke at 10:30pm for a breast feed and went straight back to sleep, and I was able to pat her to sleep quickly at 12:30am.  At 5am she woke and I figured it was the start to the day so I gave her a feed, but instead she went back to sleep and didn't wake until 8:15am!

It seemed like a very good start.

About Ellen Barron Family Centre

I realised I haven't really talked much about what Ellen Barron is really like, so before telling you all about our week there, I thought I'd paint a picture.

The facility at Ellen Barron has been custom built on hospital grounds.  There are rooms for up to 20 families and it has a large dining area with microwaves, fridges, toaster, sandwich press, kettle and sinks.  They provide lots of snack foods and breakfast stuff and meals arrive in the fridges for lunch and dinner.  There is also a play room and outdoor play area for the kids and three lounge areas where they do classes (how sleep works, nutrition, parenting, stress management, circle of care etc.) all through the days or for you to relax if you get a chance.  Each room has it's own bathroom and separate room for the nursery (with the most enormous cots you've ever seen).

It is a fabulous place and has been really well thought out.  As well as the facility itself it is staffed with nurses who are assigned 'pods', so you  have two or three nurses looking after five rooms for the first few days when we are all going out of our minds and the babies are going nuts (by the last night they scale it back to only a few nurses for the whole centre as you are supposed to know more about what you are doing by then).  Each morning and afternoon one of your nurses goes over how things are going and makes sure the plan is on track and discusses if we need to change our strategy.  There is also a doctor and a pedeatrician who check the kids over to make sure they are all ok health wise.

http://www.health.qld.gov.au/rch/professionals/cchs_rsp.asp

Back In Ellen Barron Family Centre

Checked back in to EB yesterday morning. It's going fabulously and I almost feel the one night in and two weeks out is an advantage as both Merryn and I are far better prepared to really take advantage of it.

I have heaps and heaps I want to say but typing in this app on my iPhone is painful so I'm making notes and might have to do proper posts when I get home.

Suffice to say I've had the best nights sleep I've had in years probably and I got a nanna nap this arvo too. Luxury! I love this place. :)

Connor Update

Getting the X-Ray

In the end Connor had the drip in for about 6 hours.  It would have been longer but he ripped it out of his arm. We never made it up to the ward as they didn't have any rooms, so we spent nearly 24 hours in emergency instead.

Thankfully once the antibiotics, Nurofen and numbing gel (for his throat) took effect he started to eat and drink again.  If he hadn't we would have had to move up to the ward and he would have been back on the drip.

We are now home with the antibiotics, he's been absolutely dreadful at night, but his old self during the day.

41 Degrees

Trip number three to the ER in five days. Despite assurances last time, Connor wasn't getting better and the drugs just seemed to be working less as we progressed.

This time I came up with Connor and Andrew stayed to wrangle Merryn. After hours of waiting, poking, prodding, an X-ray and a number of Doctors the final verdict was upper respiratory tract infection and pneumonia requiring a hospital stay and antibiotics.

Connor has been cracking it all night about having ears, throat and chest inspections, I'm not sure how well the drip is going to go.....

40 Degrees

After the visit to the emergency room Connor continued to have temperatures and lie in my lap groaning and grizzling.  By lunchtime Sunday I was convinced the Dr had it wrong and he really did have some sort of infection and we needed to take him back in.

All four of us trooped up to Emergency and waited the 2 1/2 hours to get in to the Dr.  I'm glad we did.  His temp had reached 40 Celcius by then and he does indeed have an infection.  The Dr said his eardrums had probably perforated in the past few days from the pressure and his tonsils are red and swollen.  

They gave him a dose of Pain Stop and within 10min he was leaping about like a maniac.  He was his normal self.  In short he's been in terrible pain and the Panadol we've been giving him hasn't been enough to control it.  He's now on Pain Stop for a few days and should stop having temps by Tuesday (or we need to take him back in).  It's going to take a few months for his ears to properly recover and we need to get him checked by the GP in a few weeks.

So after the week from hell, I'm hoping (I seem to say I'm hoping a lot) this week is going to calm down and both my kids will get more sleep and feel better.

Merryn's Week Since Ellen Barron

Overall this week has been an improvement from where we were up to before we had the night in Ellen Barron.  Merryn has slept in her cot every night and been settling (for the most part) without breastfeeding.  In fact on Saturday night she had one wake up at 11:30pm, when I gave her a good feed and then she slept through.  I was soooo thrilled.

Of course she then followed that up with waking every hour last night and screaming at me hysterically.

Around 9:30pm last night she was going absolutely nuts and I just curled up into a ball on the bed and felt like we'd achieved nothing at all.  Then Andrew tried his usual technique, which didn't work, and mum was trying to come in and try hers, and I woke up to myself and got back in the game.  I did the first three steps, lie down, good girl, sleep time, and then rubbed her back and shushed her and she responded to me.  Within 15min of in and outs she was fast asleep.

Lesson learnt.  I need to use the techniques I've learnt and maintain control (over myself, I can't control the rest of them).  Last night, after the long week and stress we've had, I was in danger of backsliding.  I'm really glad I didn't.  It was still a long, long night and I was up and down with her.  But we didn't loose ground and are still laying a foundation for when we get back in.

39 Degrees

Andrew ended up taking Connor into Emergency around midnight last night with a temp of 39 Celcius. It meant they didn't get home until 3am(apparently he has no infections just a virus so we have to ride it out). During that time Merryn kept waking and was cranky and hard to settle so I resorted to some old bad habits. It resulted in hardly any sleep for either Andrew or I last night so we are both the walking dead today and cranky as well. It's certainly not happy families here today with two zonked parents, Connor grizzly and burning up and all over me, and Mez cranky. The plan of a day out cycling has gone out the window and it's more about musical beds as we each take turns trying to nap. I just hope tonigt is better.

My Sick Boy

This week just keeps rolling on. Connor woke up coughing and having problems breathing which meant he was hysterical. I was already dealing with Mez again by then (about 10pm) so Andrew tried to calm and settle him. Eventually we did a swap (after Connor had vomited all over himself, Andrew and his bed) and after cleaning up the mess and breaking out the serious drugs for Connor I got him to sleep while Andrew got our girl sorted. The little man was passed out until 5am after those few hours of mayhem, but woke up and vomited all through his bed, so I had to clean him up and pull him into my bed where he passed out again. I think the stress, discomfort and mucus is making him sick. He has a tendency to vomit when he is overwhelmed and unwell. The little girl is feeling unwell but is definitely not nearly as bad and only woke three times letting me resettle her back in her cot each time. I'm so proud of her. I hope Connor is feeling better soon!

Musical Beds

Last night was good and bad.  The bad was I only got a few hours broken sleep again, the good was Merryn did really well and spent the night in her cot.

Merryn woke at 10pm, 1am, 3am and just before 6am.  I fed her at 10 and 1, but I only did the 1am feed because I was out of it I had fed her before I realised what I'd done.  She settled within about 20 minutes everytime, so I'd call that a success.  When she woke up just before 6am I fed her and then came out to the lounge room and promptly fell asleep.  Andrew woke me asking where she was (she was playing in Connor's room) and I realised I couldn't stay awake so I knocked on mum's door and thankfully she took her for me so I could go and lie down again.

Connor woke at 3am.  Despite medicine, cuddles, a nappy change, milk and firm instructions to stay in bed and sleep, nothing worked.  By after 4:30am I was completely out of energy and ideas so I went back to bed and within 15 minutes he was standing by Andrew's side of the bed.  With a little help he was up and over Andrew and in the middle of us.  I was terrified he was going to wake Merryn and start jumping about but after a few minutes he just cuddled in with me and went off to sleep.  I think it was about 8am before he woke up.

It's like I'm just getting Merryn into her own bed and Connor is moving back in with us!  I'm hoping we can get through these colds and then perhaps both will start sleeping a bit less restlessly.  I choose to be optimistic so I don't go completely insane.

I still have another appointment with the Mater Sleep Clinic for Connor and another go at Ellen Barron with Merryn so even if the next few weeks don't get better I've got plans and options in place.  I find that helps to keep going, knowing there are still things to try.

The Day After We Got Booted

Well it's been a pretty rough day with the kids.  Both are sick, so they are cranky and Merryn is showing she is more than capable of having a temper tantrum, which is a new discovery.  We did go to playgroup this morning, which the kids loved, but we had to leave early as they were both so tired.  Connor then refused to have a daytime sleep and Merryn only had about an hour.

I'm absolutely wiped out after last night and really not looking forward to tonight.  It's 7pm, both the kids are asleep, I'm going to watch some reality television and then hopefully get some sleep before the festivities begin.

Wish me luck!

Ellen Barron Family Centre - Day 2

The day started at 7:10am......Woohoo, sleep in and what a fantabulous night!

A fashion parade in mummies shoes and undies

We had a morning meeting with the nurses about the previous night then headed down for breakfast, where the little poppet didn't eat much, and then went to the play room for a little play.  By the time we'd done all that it was about 9:30am and Merryn was starting to show signs of getting tired.  Time for our first effort of a daytime sleep using the new techniques.

As with all the previous efforts there was a nurse there with me but I was making the decisions about when to go in and what I wanted to do.  It only took us about 20 minutes to get her down and settled and then I sat with the nurse and we had a big chat.

One of the things I've noticed is that all the nurses spend a lot of time talking to you about how you are doing and what it's like at home and what you have in the way of help.  They are very obviously making sure the whole family is coping and digging into the reason why you are in there with your baby.

Mez slept for 3 hours for her daytime sleep, which I was completely unprepared for.  I messed around and played some games on my iPhone and made some phone calls before I realised I could actually have a nap myself.  Awesome!

After her sleep we headed down for a late lunch and it was after this that things went downhill.  On the way back up I mentioned to the nurse she wasn't really eating much that day.  The nurse suggested we take her temperature just in case and it turned out she was 37.2 degrees celsius.  An hour later it was 37.5 and the administrator had decided we had to be confined to our room and head home as soon as Andrew could come and get us.

I was really torn.  On one hand you can't sleep train a sick baby, on the other hand she had been picking things up so well and going home was just going to mean more endless nights of being up with the kids for me.  But it wasn't up to me anyway, so by 6:30pm Andrew had us home and I was putting Mez to bed.

The nurses have assured me we will be back in Ellen Barron in a few weeks time to have a full week with them.  I just have to try to do my best with the start we made.  Unfortunately last night reminded me why I had wanted to have dedicated time to Merryn and I got about 2 hours broken sleep as I bounced between 2 screaming (sick) kids.  I can't wait to get back to Ellen Barron!

N.B. I did manage to keep Mez in her cot until about 5am, despite all the mayhem, which actually made it easier for me to spend the hours with Connor in the middle where he refused to sleep.  I also didn't breastfeed her every single time she woke up, but settled her with pats and shushing.  Small step in the right direction I hope.  *cross fingers*

Ellen Barron Family Centre - Day 1

After dropping my boy off (he was quite upset about it which broke my heart) Merryn and I checked in. The whole process took most of the day, even though we arrived at 9am, as there were lots of forms, settling in and getting the tour, the paedeatrician check up and planning for the week. Mez seemed to not mind at all but she did stick close to me at all times.

Merryn in the play room

Putting her in for her afternoon sleep took about 1/2 an hour, which actually isn't too bad for her. But I used lots of cuddles and breastfeeding to do it and that will be the last time we will be allowed to do that.  We finally finished the planning about 4:30pm, I can't believe it took so long, just in time for play time, dinner, bath and bed.

I was very, very nervous going into the night, I didn't think it was going to go well at all.  Merryn surprised me.  The plan was no co-sleeping, breastfeeding or cuddling or patting to get to sleep.  Mez was to go cold turkey in a cot with me coming in and out to her and putting my hand on her if she needed it.  Of course it wasn't that perfect and I did pick her up twice, but she did sleep in the cot all night, she only had one feed at 11:20pm and she only woke at 11:20pm, 1:30am and then 5:45am (when she went back for another hours sleep (that was a surprise!).  There was some screaming and hysteria, but it wasn't for hours on end like it usually is.  They must have something in the food here.  :)

So day 1 is down, 3 more to go.  I hope it keeps going as well.

Social Worker

I had the social worker from FECs come by for a visit today. I had mentioned to them I was drowning so she came out to see what the go was and what can be done before I go completely mad.

All in all it was an encouraging meeting. She is going to take all her notes back to the office, make some phone calls and see what respite and help she can organise.  I'm not getting my hopes up, but at least someone is listening. At the end of the day what I really want is for my kids to sleep. I hate even asking for help. But in recent times I've realised that for the benefit of the kids and myself I have to get help while we are sorting that out.

*cross fingers*

Oh What A Night!

In total I think I got about three hours broken sleep last night.

The night started with Merryn waking every half hour from 9pm to midnight. From then I was getting nowhere getting her back to sleep. Andrew took over at 12:30am as I started to loose my temper and got to the point I could hardly stand up anymore. He finally got her down at 1am and I passed out.

At 2:30am Connor woke up. I tried to settle him but it was one of those nights when he just wanted to be up and playing. Prior to converting the cot that would have meant hours of screaming but now it means he wombles around his room and even escapes out on forays around the house. He climbs up on his change table and goes through his books and turns on his musical toys. It was actually much easier to cope with. There was no hysterics and everytime I came and put him in his bed he was quite happy to lie down and cuddle into his blanket. About 4am he finally went back to sleep.

4:30am Merryn woke up screaming her head off. I was out on the couch, because I could't get back to sleep from Andrews snoring, so it wasn't until he came and woke me up that I realised what was happening. Thankfully I was able to settle her quickly by breast feeding her in bed and I got to sleep until 6am when both kids bounced up ready for the day.

I can't wait until next week when I go into Ellen Barron with Merryn!!!! I know it won't fix the Connor stuff but I can cope with that if I can get her sorted out. Both of them tag teaming is just cruel.

Moving Connor to a Bed

We have talked about converting Connor's cot to the toddler bed for a little while now, but everytime we did we decided it just wouldn't work.  We figured he was still waking so often during the night that he would end up wandering around the house and would get even less sleep than he does now.  Not to mention I would then spend all night putting him back in bed.

On Saturday we finally did it!  Worst case scenario it would go so badly we'd be converting it back the next day, so why not.  Not long after Andrew started converting the cot he called me in.  Connor had decided to help daddy and was operating the rachet screwdriver to loosen the screws so the side could come off.  It was so utterly adorable that I took a short video of my little handyman at work.

I should mention we've put a removable bed rail along the length of the bed with a gap at one end so he can get in and out himself but not fall out.

That night Connor was so tired (after a big day out and no midday sleep) that he was crying to go to bed.  We tucked him in with his blanket as usual and crossed our fingers.  He passed out immediately and on his first wake up cried for us to come in but didn't get out of bed.  The second wake up he made a break for it (he was obviously a bit more awake that time) but Andrew collected him and got him back into bed after some cuddles.  I found him the next morning with his door ajar and his feet hanging off the bed, I suspect he'd checked out the hallway at least one more time but decided to go back to bed.

With night 1 pretty successful we decided to stick with it so last night we left his cot as a bed again.  This time we heard some suspicious sounds after a while and when I went in he had climbed up on his change table and got himself stuck.  During the day he can usually get up and down, but I think in the dark he got a little scared.

Connor and Merryn sprung climbing the change table

I put him back to bed, wrapped him in his blanket and this time he went off to sleep.  He woke about 10:30pm but once again just cried out and I went in.  About 1am Andrew found him asleep on his bedroom floor wrapped in his blanket.  We hadn't heard a clunk or cries so we think he just got himself out and and decided the floor looked like an interesting place to sleep.

All-in-all I think it's a brilliant success!  He's not got himself wound up or upset at all and that's probably because he can just get out of bed whenever he wants.  But he's letting us put him back to bed with no protest.  Of course it's only been two nights so far!  The best bit about it is he gets himself up out of bed and starts to play in the morning, meaning I don't have to wake up to grizzling and crawl out of bed to get him up at sparrows fart in the morning.

I am very, very proud of him, he's being such a big boy.  :)

Broken Nose

List night I thought Connor had broken his nose!  He was doing a lap of the lounge room, at pace, in excitement of his imminent bottle and bed time ritual, when he slipped over and fell on his face.  Much screaming and hysteria ensued.  Normally he is actually very good when he hurts himself, so if he get really upset we know he's really hurt himself and take it seriously.  Nothing Andrew did could calm him so mummy took over and finally managed to get him into bed curled up with his blanket.

Note stripe across his nose.

30min later his started crying hysterically again.  Not being able to calm him we bought him back out to the lounge room, gave him some Panadol and after about 40min put him back to bed.  Less than an hour later he was crying hysterically again.

We finally decided we had to get serious and broke out the Pain Stop.  Neither Andrew or I like to medicate and this stuff is pretty full on.  We got it to calm Connor enough to fly home from holidays on the plane last year (he had a panic attack on the flight up and was hysterically trying to get out into the aisle and get out of the plane in flight).  It works a treat in calming him and puts him to sleep, but it's not something you would use regularly (I've heard rumours about parents who do though).  Thankfully it worked and he finally went to sleep and stayed asleep.

This morning I woke up and fearfully went into his room, wondering if I was going to see a black and blue nose and need to go to emergency.  Thankfully it looks like a bruise that goes across his nose is the only sign of the fall.  This kid is taking years off my life!  :)

The Lack of Respite and Resources

Both my sister and I have suffered from severe sleep deprivation for a number of years now because our kids don't sleep.  Now we have a diagnosis and are linking in with services we have been asking for what sort of respite we could get.  The problem is there is no money in the Australian health system for children with disability.  Everything is being run on a shoestring budget, the waiting lists are usually 6 to 8  months long and kids are getting therapy once a fortnight if they are lucky.  It's fine if you have money, you can pay for it all privately at around $140 per session, but for those of us who can't afford that we just have to muddle through the system and hope it's enough.

And the kids aren't the only ones treading water.  We can't afford to put Connor and Merryn into daycare.  Not that I actually want to, I love my kids and I chose to be a stay at home mum so I could be with them while they were little.  I am of the belief you don't bring another person into the world and then send them off to other people to raise (yes I know a lot of people disagree with me on that point).  But with the long sleepless days and nights I have, it would be nice to have a few hours a week where someone else could watch the kids while I have a nap or heaven forbid, go out and have a coffee in peace.

Unfortunately we aren't a severe enough case to qualify for any respite at all.  There is such little money in the system for respite that even someone like my nephew who is FXS, has been tube/peg fed since 3 weeks old, becomes hysterical when taken out of his house, and has to be fed tiny amounts every 2 hours (if he is given proper size feeds he has fits and passes out) is only severe enough for 1 hour a week.  My sister is mentally and physically exhausted (and I'm not far behind her) and our government is cutting funding from disability services so they can get the budget in surplus!  The people we are talking to want to help us, they can see we need help, but they can't do anything about it.  They have to wade through a sea of paperwork and red tape and justify every tiny movement they make.

So today I'm going to my sisters house and we are going to try to do an OT session of our own for the boys.  We'll make cups of tea to stay awake and we will see if we can find a way to treat our boys ourselves.  What else can we do, we certainly can't just stand by and wait for our government to get of their hands.

Just Keep Trying

Talking to my sister yesterday, her FXS boy is about 9 months younger than Connor and inevitably the two get compared. She was despairing of all the things her little man still doesn't do and it made me think about Connors development.

I have often despaired of Connor being able to do things. He was nearly 2 before he even touched food or ate more than a purée. He would vomit rather than touch anything with texture and we didn't even mention craft with glue and paint. After nearly 6 months of therapy and playgroup he's a different boy. Now you can't get the paint brush out of his hand, he's gluing projects together, climbing up the slide by himself, putting milk away in the fridge and climbing up onto his change table for nappy changing. He's following complex instructions like 'pick that toy up and go into the lounge room' and opens the car door and gets up into his car seat all by himself. Yesterday he even went and got the broom and starting 'sweeping' the lounge room.

We were told early intervention was the key with these kids and yesterday, talking to my sister, I realised we were already seeing the truth of that. The combined wisdom of the OT's, Speach Therapists, feeding team, nutritionist and peadeatricians has guided Connor forward and shown me how to help him as well. But most importantly is has shown me not to give up. Just because Connor couldn't do something one week didn't mean we didn't keep trying. When faced with a tunnel 12 months go Connor freaked out and wouldn't go near it. Now he happily climbs through all by himself grinning madly at how clever he is.

We don't know what his future is or how far his development will go and it's certainly much harder to gauge with him still not speaking a word. But I have to remember that he constantly surprises me and that his enthusiasm and curiosity can take him a long way. I shouldn't despair, I should just remember how far he has already come and never give up.

Meeting Some Other Mums

My sister and I met some other mum's with FXS kids yesterday.  I had been talking to one mum on Facebook and we decided to meet up for a chat.  My sister and the other mum, who's son is newly diagnosed, came along too.  I had both my kids and my sister had her 2 year old.  The other two mum's had their kids in daycare.

It was fabulous.  I hadn't realised how much more effort is required to socialise with people who aren't FXS families.  All four of us have kids around 2 years old so it was lovely to be able to say how we really felt and have validation from other people who feel the same way.

We all have feelings of why us, grief (over the loss of the children and lives we thought we would have), confusion (trying to fight through the system for help), fear of the future (how our children will end up and how we will cope), isolation (friends and family have pulled away and left us very alone) and hope (that a cure will be found for our babies).  These aren't feelings that other people seem to be able to understand.  We are supposed to just accept what is happening, not dwell on what 'might' be and above all keep the embarrassing little cherubs out of sight.
I know personally I've been ostracised because Connor is loud and crashes around and he doesn't interact with the other kids how he's supposed too.  This causes the other kids to either reject him or get upset that he's around.  Whereas I'd really like the other parents to just accept he's different and teach that to their kids, they have chosen to keep their kids away from him.  It's no wonder we live in a society that is so judgmental when kids are being taught these lessons by the example of their parents.  It makes me very sad for Connor and fearful for his future.  He is a wonderful, loving, beautiful boy.  But what if I'm the only one who ever sees that?

The four of us didn't stop talking the whole time we were together.  We not only talked about our feelings, but also how our partners are coping (or not), what we are doing for our kids and gave each other advice and contacts.  Needless to say a playdate with all the kids is being organised.  We hope to catch up regularly from now on.

Oh and one other topic came up that was rather interesting and kind of scary.  None of us had any idea we had FXS in our families and one mum asked us all if we'd had any signs before our kids were diagnosed.  Strangely enough we found similarities in our mothers.  Both in behaviour and 'personality'.  I hope it's not a sign that is how I will become.  I feel like it's something we should somehow let the researchers know about, but I'm not sure how we'd do that.

Well I should go and get Connor to eat his breakfast.  He's Wombling around in his pyjamas ignoring it (Merryn has hoovered her's down as usual).

Summer 2012 Newsletter

The Fragile X Association of Australia Summer Newsletter has now been released. It has announced the new DVD I've been talking about as well as a few other things I thought sounded really interesting.

 - Clinical Trial in Adolescents with Fragile X
 - Fragile X Research Symposium Brisbane
 - Article: “What we know or need to know about Fragile X premutation – a brief account”, by Dr Danuta Z Loesch
 - The story about 22 year old Hugh (it made me laugh and gave me an insight into the possible future for Connor)

If you want to have a look the link to the newsletter is: Fragile X Association of Australia Newsletters

Little Miss Merryn can Boo!

As all parents do, I play games with my kids and peek-a-boo is a favourite (singing songs being the undeniable top of the charts).  For a while now Merryn would cover her face with her hands to peek back, but this week she's started to say Boo as well.  It's kind of more of a B and very little oo, but I know what she means.  She has such an intense look on her face as she is doing it which is followed by delighted giggles.  It's soooo cute!

It's even more wonderful to me because Connor still doesn't do things like that.  I've been told (and read) that FXS is very different in girls and Merryn's Boo seems like a good sign to me.  Of what I don't know, but it seems good.  :)

Fragile X Awareness DVD

The Understanding the Fragile X Syndrome DVD has now been uploaded online, you can view it below through vimeo.

Understanding the Fragile X syndrome from Fragile X Association on Vimeo.

Merryn's Sleep

Our little princess continues to be a challenge in the sleep department.  I know all the things I'm supposed to do to sleep train her, but I've got no reserves left for the fight and she seems to have stamina to burn.  So I went to the GP the other day and got a referral for the Ellen Barron Family Centre.  I've talked about them before, they tried to help us with Connor back in the early days.  It usually takes months to get in to see them but I got a call back the day after my form went in and they said they will get us in, in a few weeks time.

I'm really relieved.  Andrew and I are struggling to keep up with both kids at night and if she screams for too long then it wakes Connor up.  He wakes up often enough all on his own without help and these days if he wakes up it's usually for the rest of the night (I think because he's getting much better sleep early in the evening from the Melatonin so he has more reserves to fight going back to sleep again).  The result is I give in and she sleeps in bed with me waking me up every few hours to resettle her.  Not a sustainable solution, but if I don't then she yells and screams for hours.

So it's boot camp for Merryn and I.  Connor will stay home with daddy and hopefully they will have a quieter and more sleep filled week with us out of the mix.  And of course I hope by the end of it Merryn will be sleeping in her cot at night and having proper daytime sleeps (she maybe sleeps for 30min twice a day if I'm lucky).