Results are In!!!

10th October 2011

DAY PLUS 1279

Zac assessment is in for the year, I really hate them in a way how they can just put it down in paper and walk away and leave the parent to just read it and deal with it. NICE!!! Not!!!
Zac results were not the worst and not the best that was for sure. Just to remind you last year Zac was 3 years old and the report came back with a processing disorder and his all over age for development was 21 months old in short. This year Zac is now 4 and his all over age in development is 2. It is good he has made a small improvement but the fact is last year here was 15 months behind and this year he is 2 years behind might not sound big but it is it shows the gap is getting bigger not smaller. The result show he has a processing disorder of the brain which they believe is Central Audio Processing Disorder C.A.P.D. and the results show he also has a Sensory Disorder and Hypervigilance Disorder plus Zac has a small stuttering speach problem and is deaf in one ear. Hypervigilance Disorder symptoms can lead to Post Traumatic Stress Disorder PTSD and is highly associated with many Anxiety disorders and Obsessive Compulsive Disorder OCD. I'm waiting on the psychiatrist to find out if he has OCD and a Aniety Disorder and PSTD as the O.T believes he has. So in a nut shell they have just added a few more labels and everyone that knows me knows I hate Labels on children so we will see. I have no idea what is going on other than he need more treatments and Zac is very behind. The Hypervigilance is a main reason he does not sleep so at least we know why he is not sleeping. It means he is waiting for threats and how to stop himself from being hurt from the threat, we think this may explain why he turns on the oven and stove and causes fires we believe he is doing this as he see me turning off and he may think it is on and wants to turn it off but turns it on instead. He is scared of loud noises and strangers and this is all linked with Hypervigilance Disorder.

We are also toilet training Zac and he is going ok in 2 months he has done wee's on the potty 5 times not bad at all, so the schools are trying to help too. Hopefully this time he will get it as we have been trying for over 12 months now.

Zac is still not eating dinner and just wants milk and they believe this is from the tube feeding he eats some breakfast some mornings and some lunch but just wants milk we are still going through 1.5 litres of milk a day and night last week we were creeping up to 2 litres so I pulled back to stop that. Funny he loves Chips and Lollies and chocolate LOL.

Zac is been quiet well since April 2 cold flu's one chest infection and a virus and a poo bug and one bad cough but all in all he has been ok.

Winter is always so bad but this year for Zac good this could be good sign.

James has also been a little ill to a little better 2 colds and 2 sore throat infections and 2 lymph node infections 2 small asthma attacks and one poo bug. Winter always is hard in my house glads it over that is for sure.

James is having lots of Highs and Lows so the doctors are running some test and waiting for the results to come back, which I will update as soon as I know.

James Aspergers is the ok and under control but he has been having a few melt downs getting up set over nothing but something to him having big melt downs. i have been rang 2 twice in 1 week to pick him from school because the teacher could not deal with his melt down. He took a week off school because we just could not get him out of bed he would just sleep all day and get upset. To be honest it is hard sometimes and I just wish I had all the answers to help him and a magic wand would be good too.

James school work is still behind but we have a tutor for him now every Wednesday and I know he love her which is great I was so scared he would not like her and we would have to search again. I am still the most proudest mummy though he just tries which is all I ask and it makes me smile so big. I don't care if he is not going to be a doctor just as long as he is happy is all I want.

James was in a school Musical he did eye of the tiger and he had changed his mind he was not doing it and the night before he said he would and he was GREAT and you could see he had fun. No big part but hay my boy does not need a big part he plays the biggest role to me and my husband.

James is still getting leg pain and aches and the doctors believe it has to be something to do with his transplant something about the bone marrow re-generating itself can cause really bad pain but the doctors are looking into it to get some concrete answers.

James is doing Karate and is on Yellow Belt doing very well and enjoying it on and off he has his weeks like any kid does. I love going to watch him do his thing you should have been his face when he passed his yellow belt and most weeks he gets student of the week too, so it is not just mummy speaking he is doing quiet well.

Please Keep in your Prayers and Thoughts and Support to my WAS Friends that have been through transplant and going through the side effects that are having Transplant and have had transplant they to all need your support. Thinking of you Bee and Max and Lukas and Lisa and Paige and Caleb and to EVERYONE else the list is long and Kisses and Hugs to everyone sorry to anyone i forgot to mention it really late and I'm so tried. Remember Medical Miracles don't always happen

To my Dear friends Sussan and Warren and your beautiful son Brendan. Brendan you are always in our hearts and will be greatly missed everyone who got to meet you will be a better person for knowing you forever and always Loved 27.03.1996 to the 17.09.2004.

Please remember to Hold and Hug your Children and spend that extra 5 minutes with them they are special and need you. They are your Miracle to your life.

Remember to Smile People because there is so much worst out there and even if you think you have hit rock bottom you can only go up now so it can't be that bad. There is always someone worse off then you. Smile at the person you walk past because maybe they just need it, i know i do sometimes and sometimes a good smile is what can get you through the day to pass the nightmares at night.

Cheers and Take Care

Susanxxx

14Th April 2011
DAY PLUS +1100

Lets see its been a full on couple of months!!! we will start with James..

James...
James has had two addmission into hospital with some sort of virus that effects the lymph Nodes in his tummy his liver was a little enlarge and over the last nine months his eating has been poor to not eating. In the last 5 to 6 months he lost 5kg he is has now gained half kilo and sitting inbetween 19 to 20kg and he is 8 years old... The doctors have said that if he drops another one to two kilo they will stick a nose tube down and admin him to force feed him. That has scared him to death the poor little boy and he is trying so hard to eat.

The School held a meeting about all his time off already this year it makes no differents that I have doctors letters stating that he had a bone marrow transplant and was born premmy and he has Med problems nope not one bit.. The school also knock him back for a teachers aid even though James has Aspergers and is IM too but hay we have had 3 doctors test James for Aspergers and IM and all say he has it the school even did the test last year but they have said this year we think he is fine and he is a above grade student and does not need a teachers aid and we dont agree with IM or Aspergers anymore. I felt like a some dumb ass mum walking out of the meeting but one week later the tests are back and all marking for this term are in and the school called me in for another meeting this time to tell me James is so far behind that they are going to have to go back to year one work with him and if he does not get that then back to kindergarden work. There was no sorry to me only that it was only now they could see the problem and OH he needs a teachers aid and a aid for his socialing as he does not social with other kids Bloody School and there councilor has tested James and believes and backs me that he has 100% Aspergers and is IM and Maybe we want to look at a different school for him... So I rang the ED Deptarment on the School and they are BIG BIG BIG trouble Oh yeah Love It!!! You see I should have only needed the one result from the first doctor that SIGNED a Legal Report stating my child has Aspergers and is IM and that should have been Heaps to get him a teachers AID... 3 Years later and I finally am getting some bloody help now I have to fill out all the paperwork again and re apply and because the year has started I may have to wait awhile for a teachers aid to pass for the funding...
James has been having the worse melt downs and to be truth ful I'm so over it so tried of the outbursts it wears me out somenight. His Asthma has been playing up in 3 months he has had 2 attacks and 3 start up little ones the other night I thought we would have to call the hospital and get him in there...
James has started a mathletic and spelldrome computer program for him with his learning problems too.

Zac
Were to start!!! Hmmm Thinking.. ok so his last lot of bloods showed his levels are down in vitiams and his platelets were a little down but ok 150 still fine though. His tests have come back this year showing no improvement in his delayments so he is still highly Globe Deleveopment Delayed but I dont agree I see the improvement stuff them I say.. He is having early intervention now 2 days a weeks for 2 hours a day and the speach is worried about him and has got him in DADHC which is age and disability services as a Urgent so hopefully we will start to get some extra help. They are worried about his speach and undestanding and he does not sleep and his bad bahaviour and she feels he is a little Obsessive Compulsive in some things not many though I dont Believe the obsessive Compulsive I only see that in maybe one or two things not a everyday thing.. Who Knows... Zac got another cold and another chest infection it last 5 weeks to clear and he still has little there but nearly all gone now
Zac is still having around 1 to 2 litres of milk a day and not eating much food but hay at least he is having milk they say...

Well i hope everyone is well and happy and doing Good
Till Next time
See Ya
Susan

13th January 2011
Day Plus +1008

I hope everyone had a great christmas and good New Year.

Zac Bloods are back it shows a Vitamin Deficiency and Vitamin C Deficiency we have place him on a Vitamin Deit to see if we can change this and we will re do bloods in 4 weeks to see if there is change. If not any change not sure what they will do still in talks as this could start to effect his liver again and cause some more problems. Zac Skin has been flaring up bad again ...It just never stops.

Zac starts back at early intervenation in Feb 2011 too very happy for him to be getting some good help.. Zac is still having speech and ot and physiotherapy too. Zac behaviour is not so good he threw a a steak knife at his couz the other day and laughed he has no understanding of good and bad witch makes things hard.. Zac has been pretty much the same still running nose and cough due for another lung Xray in Feb 2011. Zac sleeping is no better if not worse he is now going to bed around 7pm back up by 10pm and not going back to sleep till 3am to 5am back up by 6.30 to 7.30am I just wish he would sleep. The doctors are talking about putting him on drugs to calm him down but I'm not too sure about this as they have enough drugs. Zac Drugs intake in down to 5 Drugs now Woo Woo...

James is not growing and the doctors are getting worried about his growth so they are letting him go till Feb 2011. If he has not gained weight he will have to start growth hormone shoots, so here hoping he grows and puts weight on.... James is still getting bone pain but they dont know totally why other than they think it has to do with the bone marrow growth.. He has being having a few ups and downs of late when will they come up with a magic pill with Aspergers.. He gets a teachers Aid this year YES so happy and a Tutor to help him. So So So Happy about this.

On another note we are thinking and sending all our love to our Aussies QLD's People who are caught in the Floods.. To All my Family and Friends there be safe look after yourselfs we can ReBuild anything but we cant Rebuild YOU so be Safe...

I Hope Jacob's Family does not mine but I'm sending out to you and your family a big Hug Lots of Love and prayering that Little Jacob is back on this feet in No Time and you are back to Normal Life again.... You can see Jacobs Journey on my Blog..

Till Next Time
Take Care Everyone and Be Safe... xxx