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.