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.
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
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