23^rd May 2012
Day Plus 1505

Okay so I’m bad it has been awhile since I updated the blog okay it gets better I only remember because a really great Mate rang me today and asked about the Blog and I thought I better update it LOL. I tell no lie I have been so flat out I have had not one minute to myself to breath let alone to sit and write out everything that has been happening.

It has been a busy few months for us, everything going on good and bad never stops really.
I turned the big 33 LOL in March and I am going to try to give up the smoking today is Day 3 Oh God here hoping I don’t Kill off to many of my friends LOL...
Zac Blood in the wee cleared up took a few months still not sure if infection or not doctor will keep eye on him closer still not emptying bladder all the way so will watch it but prob nothing top much.

Zac has had more Testing and his overall scoring for his development is the 1^st percentile and 0.01 of Percentile, I was told 0.01 is the lowest we set a new record beat That LOL... I will explain the chart is up to the 100^th Percentile which you would be a genius, the 50^th Percentile would be average from 5^th to the 95^th Percentile they don’t really do anything thing much for children you have to sit under the 5^th percentile. Which means in a nut shell out of 100 children all at the same age where your child sits? Zac sits at 0.01 of a percentile and 1 percentile The Lowest.

We are in FIGHTS with the Educational Dept to place Zac in a IO Support Class: Moderate Intellectuals Disability or IO/IS Support Class: Moderate/Severe intellectual disability to place in one of these classes is hard they only take 6 to 9 students, so even though I have all the support from everyone does not mean I can place him in one and there are not many of these classes around which makes it hard. The only other issue will be a normal class next year and dear I hope the teacher can cope. So Fingers Cross for us we can place Zac in one.

We went and met with the doctors a couple of weeks ago as everyone who knows me I hate labels on kids and think Doctors are too easy to stamp a label then to work at the issues first. Lazy half the Doctors are these days. Sorry but they are... We were shown everything in details so here is Zac in a Nut Shell this is not everything but basics...

Diagnosis
Small Section Permanent Collapsed Lung will not heal could very much get worse and the whole lung Collapse.
Fibrosis of the Lungs
Reactive airway disease
Asthma
ADHD
Deaf in one Ear
C.A.P.D. processing Disorder of the Brain
Sensory Processing Disorder (SPD)
Hypervigilance Disorder
Non Sleeper
Global Development Delay
Speech stuttering.
It is also believed that Zac has anxiety disorder and Obsessive-compulsive disorder (OCD) and signs to having autism. Now I can believe the Anxiety and OCD but not the Autism so we are waiting a little longer to see how Zac goes and if not settled or better than test him. But remember he is normal if you saw him or chatted to him he is ZAC WILLIAM RUGLESS and he is Normal and cute just a couple of little issues...
We are due to go for more blood results soon and check out all his immune levels and LFT’s and Chem.

Zac is growing good on the plus side and we had all the safety stuff put on the stove and Oven No More Fires Mind you he tried to flood my house the other day I was not impressed and could have well you know. Zac has had a Cold now for 6 weeks and still sounds not good on the chest but he has done well not getting worse well the cough has a little. On the plus side his speech is a lot more clearly and he is getting one on speech therapy every week to help with his stuttering which is going well.

 James well he is going okay he is a little happier he loves his new teacher but is very behind so the school is having James tested for a Special Support Class called IM Class to help him. The Doctors have changed his Meds for his asthma to a stronger tablet called Singulair to help reduce his asthma attacks. Hopefully it will work.

James anxiety has been up and down and sometimes going really well and others all over the place so I’m hoping if he gets a place in the IM Class he might settle a little more well Fingers Cross. On the Bright Note I have not had to go pick James up over his Aspergers Melt Down for a little while fingers cross it stays that way.

Okay so I’m Tried and Worn Out and Broke the doctors cost a bomb but at least we have each other and I’m tried did I say that LoL.
Sometimes I think which I know is so wrong of me that how come some people go in hospital get fixed up and walk out no problems to follow on No Nightmares to go through No Nightmares to sleep through but every week there is always something new for my boys I would not wish it on no one but over it over worrying over the Lung the kidneys over the nightmares. Why did both my boys have to go through it just over it all but Hay SMILE Right SMILE because there is always so much worse in this world and so much worse happening right now and I don’t really have the right to be feeling like that when I have my Boys?

To My Lovely Beautiful WAS Friends I hope for you that things improve and some normal starts for you all Transplants Goes quickly and well and GVHD goes away settles down Bloods stay good Our children stay healthy and happy so we to can have great family lives with our beautiful children.

Sending out my Heart Soul and Thoughts to some special WAS Mums Paige and Bee. Sending out a Big Congrats to Jaqui and Max for coming out of isolation Enjoy my Friend…


Time for me to go Till Next Update I hope everyone is going Good and Healthy and Keep Smiling...