Getting back On Track

20th April 2014

DAY PLUS 2203

So it’s been a long time but there has been so such going on in my life it has been so full on.

I have not been able to post as every week something has been happening and I just did not know what was happening all where to start. I must say a big Thank You to my closes Mates and family who have been very supportive of me and being there for my family. My life in no means is ever normal and when it is Normal Trust me in saying this it is not your Normal. My children are my world and this I am very grateful for them even when they are driving me mad I love them just that little bit more to be able to have this as I never knew if I would ever get this or what is ahead. I have learnt to take each day as it comes and enjoy it even if you can’t wait for it end from the fighting kids.

I took my Kids to the Easter Show on Thursday and they Had a so much fun but the best part was watching them on the Dodgems Cars Troy was Driving Zac and James was in his own car and they were all just laughing so hard Zac was nearly wetting himself every time James hit them he could not stop laughing it must of been huge because I had three people come up to me to say is that your boys and there laughs are making us laugh. It hit me and I had a tear in my eyes that in this moment I could of lost and how grateful I am to watch them here and what a Journey we have been through over the last 11 years and what a great day we are having.

I will start with James first so he has been going through lots of things over the last 12 months it’s been very hard he is climbing the ladder though and it breaks my heart to see him struggle so much. He is on only 3 pills a day every day now so not bad now.  He has had so many appointments with different doctors and is not sleeping through and wakes and stays up so much in his head on the Good Side he made a Friend we have had to push him a lot and if we let it go he goes back in his shell which is worrying but we have just been pushing and it seems to be working a little they even have had sleep over’s each house and the parents of the child are so great the boys are starting to build that friendship I just hope it lasts. On the other side James Asthma has been setting off very quickly and he has been having lots of tests and doctors appointment we have been through a WAR in the last 6 months it has been hard we have had Two Cancers Scares with James one just before Christmas and only got the results 1 day before Christmas that it was clear and second one was a tumour in March this Year again which is again clear.Even though we are safe the doctors have said every 3 months he will have to have bloods and tests as this could change and he is not out of the woods totally I am so happy it is not funny, but so scared to death of it happening and so over the stress so all I can do is go on and hope it never happens. James has also been seeing a endocrinologist for a few reasons and goes to him every 6 months to top it off the doctors don’t believe he will never ever have kids they are 98% Sure the Doctor said he believes 100% but he can’t say that till James turns of age to get himself tested this is the side effect of transplant so you have to take the good with the bad here’s hoping they r wrong.  James is doing good in his support class and is starting to like school a little and the best part is we only have the upset morning every now and then instead of everyday.

With our Zac his disorders are getting worse and they have had to double up on medications to help with his anxiety disorder he is not sleeping at all and I am at the end of a rope he will be 7 in September and I have a child that sleeps worse and I mean Worse than a baby but there is not a lot they can do so the doctors have double up on his sleeping medication and the outcome put me in tears as the doctors feel doing this will give him 4 to 6 hours max 4 hours sleep OMG but I went to the chemist to fill the scripts and the News for one of the drug it would cost $7000.00 dollars for 5 to 6 months use with the other drugs included we are looking at around $450 a week in medication on both kids which we don’t have. We have done everything to fight this but can’t win  our chemist has been calling around chemist who would compound the drug into one bigger dose so I will explain in one of Zac drugs he has between 8 to 14 tablets a night YES you read right that many tablets plus he is on another 3 different medications as well so what we want is to make one Tablet only to the right MG but we have not had a lot of luck we have found one in NSW and they will get back to us if they can do this it is a OMG Stress if they can the cost will be half of what it is maybe even a little smaller than half. If this happens we will go down to 6 pills a night so much easier for Zac to swallow plus I won’t have to go through so much yogurt Yes Zac can only swallow the drugs if I buy the squeeze Yogurts I place one pill in and squeeze the yogurt so quick he has to swallow Mean Mum I am but it works LoL and cost so much less for us plus we might be able to afford the mediation. YaY if it happens I might start getting some Sleep Sleep Sleep and hopefully his anxiety starts to settle a little more and I don’t care who wants to judge I have been without so much I have gained weight I am not myself anyone I snap I become so down and upset I have great mood swings from the lack of sleep and to top that off I the stress of all their problems all their doctors appointments and therapy appointment plus I work 5 days a week. Sometimes you need to put your hand up and say ok I give in and I take that help now.

There is so much more to add but I just don’t know where to start and keep going  a lot has stayed the same from previous posts but  I will update again soon it’s just to late plus once Zac Turns 7 in September I think it might be time to turn off the Blog as he is day 2203 now and that I say WoW maybe I have kept this running to long I really Don't Know.

On a Nice Note we are renovating our house and updated our cars from old bombs to nice reliable ones which I have to say is nice to have a nice thing happening. Starlight Foundation has been in contact with Zac for his Make a Wish and the First thing he said to the lady was where you’re WINGS and WAND is if you make Zac Wish you need this. He was in a little Horror that she left them at the office I have never laughed so hard at him.

There are a few that are on my mind in our WAS Group of friends that still fighting the fight and my thoughts are always with you.

Till Next Time Next UpDate

Night

Getting There Slowly... Happy Times

10th November 2012
Day Plus 1676+

It has been a hard few months for me and what written is never to upset or hurt it is my feelings and thoughts. I make no comment that I am perfect or Right this is how it is said to me and I put into words the best I can. As for my whinge below it has to be said Sorry sometimes I need to get it off my chest too but it is not at anyone I just needed it said is all so Don't read and think it is at you because it is not it is all about ME LOL...

I am Grateful for my children and for what I have I never walk around saying that my children are worse never because I know they are not. I never ask for anybody to make comment and I don’t make comment other than this Blog or Face book sometimes.  I will not and Do not EVER speak about my children medical problems to any of my friends other than Best Mate as I don’t want to bore people with the same tale or be the one who has problems to tell or the feel sorry looks if they want to know read my Blog I say plus I really hate when they say they look NORMAL Did I ever say that they Don’t ... I am told I am a hard person not really I just think there are time and places for things. I am told I am hard on people and friends No I don’t take Crap and I will tell it how it is so if you ask me do I like or am I fat I will always answer you the truth No I don’t like or Yes you are Fat No I am not being RUDE I am being a Friend by telling the truth and if you not like it Don’t ask me Simple as that. It is hard to not tell the the truth living inside my world is different to yours and as much as I want to be there for you I also have alot going on. Sometimes Just Sometimes I say WHY ME WHY MY KIDS why because I am human and Normal and even though I am grateful for my children when is enough is enough... I do not wish anything on anyone and I would never want to see a Mother, Father or Grandmother or Children be Sick or watch being Sick.

After almost 10 years in and out of hospitals and Therapy Two Children going through 2 perm Babies and 2 Transplants and Heart and Lung and Kidney and Liver failure ICU Adminission for Months at a time and being told to pull the plug on your Child life and Hold your Child who is Died but thankfully the doctors got back to life and Many Cardiac Arrests Drug overdose from the Hospitals and a child that is drug addicted from  the drugs he was on in transplant and Operations that could not count on mind and my husband’s Toes and hands being the one that had to put the feeding tube down your child nose over and over every time it came out or the nurse that is in tears from doing the Blood test and gives the mum the needle to do because she can do it anymore. Sitting in a HOSPITAL for 12 months my only visiters where my and troys beautiful Family members and my mother and mother inlaws and inlaw fathers sister inlaws but no friends no calls  . People say they understand OMG Please Dont if you not seen it or lived something like it Don't comment or better they say I was in hospital for 2 days OMG I understand well OMG Don't Hate me when I snap I find that Rude Just Rude . People who did not visit but Say I was so busy I wanted to visit or I really should have I dont know Why it must of been a busy time for me but I wonder if there child or children were sick would they expect I visit them well Don't hate me if I don't and Don't turn around and say I should be visiting you.. I do want to help everyone I love I just cant be everywhere all the time and I have to remember that. All the problems they get from side effects of the Chemo Grrrrrrrr and then told your Childs has metal problems not one but Two Thanks Transplant Oh better when they tell you it is from the Transplant... PLEASE Do Not tell me that I should be used to it HOW please explain How or Transplant is finish so you should be lucky Really you don’t think that I am lucky I count my blessing everyday for both my beautiful children but you do not forget and the scares are always there and sometime I wish I had your life..Please dont tell me that I have to get over it move on your talk to someone NO you dont get over the battle the Fight and the Fear life goes on but it is there deep with in... Over it so over it enough is enough and I am sorry but when do my children get the left alone... That is My Whinge for the Day LOL OVER IT!!! Breathe Now Breathe....

Okay!!!

James Got into the IM Support Class we wanted... Yes this is great news hopefully he will settle in well. James Anxiety is going okay still some highs and lows but getting there. Slowly sorting it out Hopeful we will get there one day. James still not doing any sport does not like anything. James Asthma has been not good and they have now perm move him onto Singulair everyday which we have seen a difference in him. James still getting the bone pain and they put this down to the bone marrow regenerating itself. James has put on a little weight and Height Not much but some this is great news for him.
James Had his Anniversary on the 24th October for Transplant 9 years one Big Brave Boy Love him to bits Love Him around the world and back... His Smile makes my day..

We were shown everything in details so here James in a Nut Shell this is not everything but basics...

Diagnosis

Aspergers
IM... Mild to Moderate Intellectual disability
Asthma
Bone Pain
Glasses
Growth Problems
Global Development Delay
Scarred Lungs
Testicle Problems
Anxiety disorder
Sensory Processing Disorder (SPD)

Zac is a different kettle of fish he has been all over the place. We got Zac a weighted Blanket they are not cheap this has helped with settling Zac and Sleeping there has been a very small improvement with his sleeping from this blanket we love the blanket okay Mum does anyway LOL. We got Zac eyes tested turns out he needs Glasses so we brought and paid for them and came back for his 2 months check up turns out his eyes are worse and we need to go up in strength and we have been advised that we may have to go up in strength every 3 months over the next year  but because his eyes are getting worse the lens have got more expensive. Thanks a lot there.  On a Bright note Zac got into the IO/IS Support Class which is good for him but I saw the class and it made me sad for him Glad he gets helps Sad thought both my kids needs these classes and that they just can’t have a Normal. On a not a happy Note the doctors believe Zac has Autism which I am not so happy about and the test is $1200.00 OMG Lovely. I tell you I did not see this Autism one coming oh well so we are waiting to find a doctor to do the test my doctor could sign it off but wants to have him tested as Zac has so many problems he does not want to be mixing it up with them but he said all the other problems still stand so my god this is just added to the stack the stack of problems is huge. I am so sorry but Transplant might have done the Wiskott Aldrich part but it has given me so much more back in return Over it.
Zac had a birthday he turned 5 Yes the big 5 all grown up my little monster is all grown into a Big Monster ... LOL.. I love him to pieces Both my boys make my day everyday..

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
ADD
Deaf in one Ear
C.A.P.D. processing Disorder of the Brain
Sensory Processing Disorder (SPD)
Hypervigilance Disorder
Non Sleeper
Global Development Delay

Moderate to Severe Intellectual Disability
Speech stuttering
Bad Eyes Glasses
OCD Obsessive-compulsive disorder
Anxiety disorder
Waiting on Test but believed from Doctor
Autism

Remember though all these problems my children are Normal, Normal with a difference but normal they Talk and Walk and Run and Laugh and look good too they may have problems but they are no different to yours they just have extras that make them extra special...

To top my week off the boys had bloods they are back and tests are not Bad but not great.

James Blood is-
RCB is Low and PCV Low so waiting on Doctors... His EOSINOPHILS are High but this is okay as he has Asthma and Allergies and we know he has had flare up there so we would see that this would be higher..

Zac Blood is-

Hemoglobin is High and protein is High and Albumin is High and I also believe the Salt is high not sure on the salt trying to take in all info. So we are waiting on Doctors. Zac drinks a lot of milk which is also a lot to be worried about he has around 2 liters a day or 2000mls sometimes more.  Because Zac has had organ failure and he has a small Collapsed lung higher Hemoglobin is not a good at all for him. So now waiting on what the doctor wants to do with him and how to handle as he not in till Monday. Anyways Heres hoping it turns out to be nothing and life can be peachy clean for once I hate when they put you through all these tests and turns out nothing big after they think big… Really you know Doctors are Bad Men LOL Make a Big Deal out of Nothing Just like there down stairs Parts Bahahahahaha Okay Needed that Joke… Sorry Boys!!! Bahahahahahaha Feeling Good Now…

On a Good Note for me I gave up Smoking on 21^st May 2012 which has been 174 days and Yes I still feel like a smoke I do all the Time Oh Hmmm.. LOL. I have also Joined the Gym I forgot to say I gained weight from giving up so trying to get fit again.I also was blessed with a niece in October 2012 she is beautiful.

I’m Tried very Worn Out and Broke the doctors cost a bomb and more but at least we have each other and I’m tried did I say that so very tried LoL. Yep just add Tried Again 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 nightmares.

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 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 and their Children.

 

I have a New Song from Guy Sebastian performing Battle Scars I love this song and feel it . True Though this Battle Scars Lyrics ... The wound heals but it never does That's cause you're at war with love
You're at war with love, yeah.......These battle scars, don't look like they're fading Don't look like they're ever going away They ain't never gonna change This battle...

 

 

 

 

 

 

 

Happy Listening Everyone Great Song Sang by our Aussie Guy Sebastian Battle Scars Ft Lupe Fiasco ..

Be Safe and Be Happy Everyone to Next Time Take Care xxx

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...

22/01/2012
Day Plus +1383

Ok there is not much to say yet... WHY?
Well the urine test came back contaminated the bloods came back good the ultrasound show that is there no major bleeding or infection or blockage but they said that might not be right. The doctors said he is not empting his bladder right. They did a test where they took measurments of his bladder and then made him wee they then took more measurements but it came back showing that he did not empty enough out. The doctors think that there may be a problem there but not sure if it is infection or not. Zac now has been having accidents and weeing and doing very loose stools so maybe there might be some sort of infection there I am thinking.
The doctors have issued more tests to be done and to re do the same tests as last week..
The ultrasound doctor said that his kidneys don't look Great but look ok which is something too..
So fingers and toes crossed it all turns out to be nothing or maybe a infection or blockage..

17/01/2012
Day Plus + 1378

I hope everyone had a lovely Christmas and a Great New Year..
I Hope everyone got there Christmas Wishes and enjoyed there time with there family...
We have added a new member to our family a Dog called Kobi a little Maltese x Shitzu Black and Brown he is James Birthday Gift which he is turning 9 years old on the 24th Jan 2012..
James is going into year 3 this year and he is growing up..

Ok Quick updated I will tell you more when I know..
Zac is passing blood through his urine and been sent off for tests awaiting the results as Zac has been in Acute Kidney Filure twice this could be again it could be a infection or a blockage but the ultrasound doctor could not see infection or blockage but can't say for sure till boods come back.. We are not telling my mother inlaw as she is sick in hospital and don't want to stress her out at this point of time till we need to know more...

Prayer its not the kidney for him please..
Will updated when I know more..

Bye Susan

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

29/11/2010
Day Plus +963

Ok I know it has been awhile I'm slack but heaps been happening.
Zac started child care for couple of hours a week and going well other than the crying everytime I leave I hate that part but LOVE the peace and quiet.
Zac speech is getting better and he is saying more words now which I just love to hear.
Zac has had a few colds and bugs so been fighting them off.
Zac eating is not so good he has stopped eating dinner and is going off breakfast but he loves his milk the doctor is not happy because he is drinking around 1 litre to 1 and 1/2 litres a day of milk and this can cause problems with his iron levels and something else in the blood when your having to much milk and not enough food. So today he was sent off for bloods to test all levels and how they are working. Zac had his CT Scan he ended up on oxygen for a few hours and dropped his heart rate twice no biggie so that was good for once. The results are in and the doctor says There is a small area where his Lung has Partialy collapse this will not heal. The area is small about three fingers wide and across. This area is not a major concern at this point which is soooo good to hear and what they would do for him he is already happening anyways he is on 2 puffers sometime steriods. The doctor said he will need regular scans to montior his lung so he does not get worse. This explains why Zac has a cough and cant get rid of it. If his cough, asthma gets worse or he starts with breathing issue the doctor will issue a emg scan. If the area gets worse bigger this can cause a few Complications or if it gets bad this can be life-threatening. There is a weakness in his lungs so he is more prome to getting colds and chest infections which could add more presser on his lungs which could lead to bigger problems on the lungs.. But the Doctors said his lungs are looking ok other than this small collapse part.
The doctors are going to see James in Feb and we are going to talk about if we should start treatment on James as he is not growing nor really putting weight on he only weighs 17kgs and is 8 in Jan... So fingers and toes cross James grows and Zac lungs stay the same and you know what I really do think Zac will be fine and nothing will happen because I think enough has happened in this family and it is time for some good to start happening..
Zac is still having speech and OT and Physico and early intervention as will start next year more classes of learning for him so hopefully he maybe may get to go to a normal school oh I hope so.
James is getting a teachers aids and a special tutor for next year to help him too.
Poor James is having problems in class and making Friends I wish i could take the aspergers away and make his life easier he gets so upset and cries because he has no friends to play with but he does not play with anyone at school so why are they going to come over to our house. It breaks my heart to see him like this he wants Friends soooo bad it is not funny he just does not know what to do. He did have one boy come over for a play but he does not want to be friends with James now after his visit and I thought it was going so well but James said he wont play at lunch time and When James rang him up he was very rude and hung up on James and poor little James just cried his heart out the next day the child told him not to call him or speek to him he only want to see what James house was like and what we had little SHIT of a Kid... There is another kid at school that is picking on James and twisting his arm back smashing his lunch and swearing at him he is the worse child at school and I wish they would get rid of him I dont care that childs needs to be out of way of hurting children.
Untill next time Be good Smile and Laugh
Cheers Susan

It is all happening here so Bring on Christmas and a Great New Year i Say...
When I get Zac Bloods back I will let you know and I will update on James when I see the doctor.

10/05/2010
PLUS +760

Hi Everyone,

We are still waiting on the CT Scan it just arrive in the hospital but waiting for it to be installed.
No News is Good News though..
James went in his cross country and came 15th out of 70 Boys so proud of him.
James has started back at OT and he is still having problems at school so we are thinking about moving schools next year to a school where there are students there that are totally normal and healthy but there are students there that stuffer learning problems and have Aspergers to like James. We are just not sure what to do any idea I would love to hear them.
Zac is still having mass behaviours problems he just does not understand and when you try to stop him he goes apes, we are waiting for his results on his assessment on his development..
Poor Zac ended up with 8 days of the runs he was so sick he was pooing every 5 Min's for a while as much as I don't like drugs it is a pity there is no drug out there to help little ones to stop them going to the toilet so much.
After Two Bone Marrow Transplant with my boys you think I could keep up but I was so tried and run down it wore me out..
Till Next Time Keep Smiling
Cheers

26/04/2010
Plus +746

Hi Everyone..

Stilling waiting for this CT Scan on his lungs.. Had a few issue last week Zac got a little cold and he ended up sick with both Lungs full put back on more drugs..
Had to take him to the GP Doctor who was upset because he did notknow what to give him because of his lungs.. What a week it nevers end nearly ended up in hospital so greatful we didn't.

Getting a little worried the doctors are all worried about his lungs they keep talking about this Fibrosis of the Lungs but not sure had a look on the internet, I hope it is not it sounds not very good .. So fingers and toes cross they are wrong just wish they would do this scan and hurry up..

Zac had another bad week he smashed all his meds out of the fridge and screamed when I tryed to take him away and tryed to fight me because I was taking him away it was so upsetting and when I tryed to tell him NO and he just laughed and clapped his hands and blew kisses.. He tryed to bite me and head butt me because I was taking him away from the fridge it was so bad and so so upsetting too.. What Kid blows kisses and clappes hands yelling Yah when he is in trouble..
When I know more about the tests I will let you know..
Bye for Now.

Happy Easter...

DAY PLUS + 723
03/04/2010

Hi Everyone,

Heaps has been happening Zac Lungs not the best he is having a Ct Scan as they want to see what is happening, he has had a cough for over 12 months and can't get rid of it. They said his lungs are NOT normal in shape or look he has scare tissue and he has from ICU Life support Lung issues and Fibrosis of the Lungs which we thought this would fix it self but looks like it is a lot worse.. Fingers Cross Please The doctors are worried so I'm hoping they are wrong.
We have also been told it looks like he has Brain Damage too and behind he nearly 3 now and they score him arouond 12 to 15 months..
I will let you know more in couple of weeks...
Please Pray for him..
Sending my Love and Prayers to the boys in transplant now...

See Ya till next time..
BE GOOD EVERYONE...

26/11/2009
Day Plus 595

Hi Everyone,

It has been a while. Umm where to start, heaps has been happening but the days go so quickly sorry for not updating in awhile.
Zac had another operation yestarday they removed his Port and feeding tube and checked his ears out. The operation went ok but he had the start of two Cardic Arrests one in the operation and the other in recovery he is ok. The operation went well other than that. We are off to Sydney again soon next year to see some more doctors Zac hearing is no better and they are not sure if messages are sending and receving to his brian and ear and that is why he is not speaking or if he needs a cocheal. The left does not hear at all and it is nerve damage but the right shows it works so he should speak so they are starting to think it may not work very well at all. We are learning sign with him which he is not doing very well but it takes time. Zac keeps getting sick he has had lungs infections cold and colds and more lung infections and the doctors are not sure why so more tests to come to see what his immune system is doing fingers and toes cross it comes back nothing or nothing bad... Zac may have another operation in 4 weeks if this one did not work well as they removed the feeding tube and hope the hole will close if not he the doctor said Zac will have to have a bigger operation to close the hole which is major tummy operation so fingers cross his hole closes well I do not need anymore operations this year and NO MORE ARRESTS how much can the heart take...
James is still having problems he has two lung infection and ear infection and throat infection and he has had a few down months we are trying hard to get on top of his aspergers but it is hard sometimes to parent him as in when he is playing up is he being normal or not..
Other than that all is sort of NORMAL well for this family anyway.
I hope everyone is doing well I will back in touch soon.
Till Than Everyone be Safe SMILE and Laugh ....
See Ya
Susan

Tuesday 18th August 2009
Plus Day 494

Hello Everyone,
Just a quick note, Zac will be having his GFR on Monday so we find out how well his kidneys are working Fingers Cross.. Still Tube feed but trying to get him off it so fingers cross again.. Zac has a appointment in Sept with the hearing doctor so we will find out what they are going too do I begged NO cochlear just an aid pleaseeeee...
James results are back on his IQ and development test well it is Asperger's ( which is a form of autism ) who would have thought oh well just throw another one at me.. James is ok he can talk and live a normal live just needs help that is all. Back at John Hunter next week for appointments so don't want too, when does it all just stop and life get NORMAL. Just Over it all..
Very Important DAVID McNALLY has now reached 3 years post transplant, Party for David I think ... We are all thinking of you David and we hope that your GVHD clears up soon and you can be pain free and free from all the drugs.

I will let you know the results of Zac's GFR as soon as I get them.. Thanks to everyone who has been sending me emails very lovely of you...
Till Next Time "Smile" ...
Susan

Monday 13th July 2009
Day Plus 458

Hello Everyone.. I have had a packed month I had a baby shower for my sister inlaw at my house and my other sister inlaw also had a baby shower two sisters pregnant together and both having boys and they are three days apart, I can only wish them the best on a safe and healthly babys boys... I also started a part time job just on saturday mornings, don't know how it will go or if it will last but it gets me out of the house and earns a extra bit of pocket money. Which is always welcome in my house. I have had the flu for three weeks and was tested for whooping cough it came back that I did not but I can't help think that I may have as they still placed me on the drugs clarithromycin which treats whooping cough and with in three days a was better and my cough was almost gone. We all have been sick with a bug aswell. I was so sick and both James and Zac had it too that Troy had to come home from work only to see he started to get sick 2 hours later.
We got an letter from the school the other day we thought James was in trouble but he was been awarded for doing so well in school and he is only just started this year Wow. I'm so proud of him my little shinning star.
Zac has been ok still tube feed but he can't seem to knock this cold he has had it for about 2 months on and off with a cough too. Zac is walking now and walking everywhere it is so good to see but he is still not talking any more words only Mum Dad Nan and Bub but Troy believes he said Ball on the weekend but I have no heard it and Troy can't him to say it again oh well it will come. Any idea on teaching Zac to talk would be helpful my friends anything, but I think he will not talk much till they help with his hearing I wish my doctor would pull his finger out and hurry up with an appointment.
I will keep you updated on hiis hearing and feeding again soon till them
BYE and be safe...
Susan

Saturday 30th May 2009
Day Plus 414...

Been awhile everyone...
Time fly's.. It has been a hard month and no Zac is ok I think it has just sunk in I'm home and everything I went through. I have been visiting friends and catching up but I find that hard too there kids are well there kids are doing everthing they should be doing, but don't get me wrong I'm very proud of my boys but I wish sometimes I could just be NORMAL.. and have the normal life. Sometimes I just sit and stare and think what did I do that was so wrong to put my kids through this. Maybe I did nothing or maybe I did but I have to deal with cards I was dealt with. So Zac had his tests done on his development you know on everything and he came back between a 6 to 10 month old . Not bad for a child who spent so much time hospital. Zac is walking holding onto things he wont let go he has been doing it for about 4 weeks now but he shows no sigh in letting go yet..
A very big congrats to Kristy on her baby boy Jai he is so cute..
James loves school hmm wonder when that part will change not looking foward to the teenage years lucky I still have abit to go LOL..
Zac is still tube feeding we took him off it for a couple of weeks but he lost 2 kilos so he is back on tube feeds again gee wish I could lose 2 kilos over 2 weeks now I will take that diet LOL...
Till next time I hope everyone is well and Happy...
Susan

Day Plus 326
03.03.2009

Hi Everyone,
I know I'm a slacker... I have been so busy and would not believe how time fly's. Well first I want to thank Aimee so much for anyone who does not know Aimee she has a beautiful son David who also had Wiskott Aldrich and Aimee you are always there for me, when I need you, so thank you from the bottom of my heart.
First James started school this year my boy is all grown up...(sad) but happy too he he he...
Zac hearing test came back looks like he is deaf in his left ear but right is ok with a tiny loss. Zac is due for his MRI this month 31st and while he is having this they will look at his ears too.
Zac bloods have been all over the place with him dropping his sugar levels who knows why any thoughts on why let me know please.
Zac is crawling now and his talking is no better still mum and dad but who can complain, best part is that he said mum first... he he he...
not much to say I'm waiting on a whole heap of test to still come so fingers cross.
ps everyone my blog has a no copy right so please don't use my photo's or info for any papers or mags or anything else not being rude only that we have had a mag company use this blog and copy my blog which has now printed it all over Australia and New Zealand and there is incorrect info and photos that should not have been used which has coursed a lot of problems here.Please I'm not trying to sound rude, so noone take it the wrong way..

Cheers Everyone I will post again this month once I know more
Susan

Day Plus 272
8/01/2009

Happy New Year Everyone!!! I hope everyone had a lovely christmas and a safe new year... Here's to a healthy Safe New Year!!! Well I have been home now for 6 weeks and loving it, it was so nice to be home for christmas Zac had a great day and James was so tried by lunch he fell alseep for a while... James birthday is comming up and i feel for him as i can't have party for him because of Zac hopefuly soon Zac will be out and about with everyone. James also starts SCHOOL this year oh so sad my baby is growing up but so happy too. My doctor is away on holidays at the moment and I wish he was back, Zac bloods have been up and down he keeps dropping his platelets and his urea has been climbing up. Zac blood pressure is still high and to top off that they found a lump a growth in Zac ear and they have no idea what it is, I'm just staying cool and hoping it is nothing FINGERS CROSS. I can't say on Zac about starting steriods or not as one my doctor is away and two the poo has changed into a green paste. Lovely !!! Zac is having MRI in March to check for damage as his last MRI showed fluid around the brain and shrinkage of the brain. That's it for me now have a good one everyone till next time Have a safe one BYE....




James Last Day at Preschool


Zac

Smiling Zac Zac

Me with Bronte

Margaret Troys Mum (NANA) and James

James and Me Hi Five Zac

Do not copy any info or photo's not to be used by anyone no copying anything from my blog

BEING HOME WITH MY BOYS

11th December 2008
Day Plus 244

Hi Everyone,

Well my doctor is saying he wants to keep his head in the sand a bit longer with puting Zac back on steriods. I have no idea why and it is driving me crazy as I don't want him back on steriods but I also hate seeing him in pain, what can you do...
I see my doctor this week plus a skin prof aswell, so I will update you on what he has to say..
I have been a little worried about Zac, as he has had an ear infection and his skin is very bad. I just hope we are not going to end back in hospital for christmas, it gets so worring when they get sick.

Zac's bloods were ok this week which was nice to see but his kidneys are still up and Liver too so fingers cross they will come down.
Zac is booked in for a hearing test where they are going to put him to sleep as they think his left ear does not work at all, he is also due for his next MRI and GFR plus he is also due for his Lung test too. Well we know what hospital are like so I think it well be some time next year.

Do not copy any info or photos not to be used by anyone at anytime no copying..

Day Plus 235
2nd Dec 2008

Hi There everyone I'm HOME HOME HOME HOME HOME HOME HOME.....
I came home on Day Plus 218 Tuesday the 18th of November 2008....
I have spent 39 weeks and 5 days in hospital all up...

Zac is ok he is still on 10 different drug including blood pressure drugs and sorry been so busy that why no blogs for a while. Zac is getting worse by the day though it looks like his GVHD of the bowel so the doctors are going to talk to me on thursday so looks like back on the steriods. Great!!!
Being home is so nice, it is like coming to a new house. James loves having me home, I didn't tell him I just turned up he was so happy he thought I was a dream. James asked his Aunty if I was a dream... poor little boy...

Zac has still got his button in his tummy and feed 18 hourly but he has been having tiny bits of food and took his very first slip of drink last week but only done it once more than that. But it is bit by bit day by day.

Zac has settled down being home, which I was a bit worried about but nothing to worry about, he is now rolling on his tummy now but can't roll back yet he is also straighting his legs a bit now so when I pick him up he will sometimes only sometimes put his legs straight down.

Bye Bye Now will update you on GVHD...