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...