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!!!