This Year was all about me, I wish it wasn't.

Well I had just been told I had what they called Benign intracranial Hypertension, what the. The neurologist put me on medications which were horrible but I took them I had too. The headaches subsided but for some reason my back was just giving me still alot of trouble I saw that many different people chiro's physio's, etc etc fricken etc, none of them could solve this problem or figure out why I was in so much pain. Neither could I. I couldn't stand I couldn't sit nothing would help anti inflamatory's nothing. I still had to go back to see the neurologist in the city and he then referred me on to another neurologist that was a lot closer, I started to see him every six month's mentioned to him about my back he said next time if it is still the same we will get a MRI done of your spine. Six months were up still the same no change. He organised it and off I went, Mum and Jack in toe. I hated the first MRI  I had but this was just as bad, this time they had to inject a dye well they decided to do it half way through, and when she injected it it did not go into the vein it went into the tissue OMG that is sooo painful. Well thank god that was over with. They always ask the question when are you going back to see your Doc, I think I was due back in a couple of Month's. 

Well  I was glad that was over with, hope I don't have another one of them. The next day I got a phone call from the Neurologist office could you come in tomorrow, Hmmm what's this about I was thinking I remember I said to a friend I have probably got a tumour or something, Joking about it she said don't be stupid. So off I went back to the city to see him. Went into his office, he said how are you going, much the same I said. Well I am sorry to tell you that you have a tumour in your spine, it is quite large you will have too see one of the Neurosurgeon's I will refer you on to someone and it will have to be removed. What the I thought to myself you have got to be joking. I went back down to meet up with my Mum and Jack who were having a lovely time in the garden, as I walked towards my Mum I bursted into tears all I could think was, I am not going to be around for my kids and my husband, and I am going to leave my Mum and Dad they have already lost one child how could this happen.  Now I just had to wait to see the neurosurgeon to see what happen's next.

Keep on going on

Nick had been at the early intervention program for a couple of years, it was time to look for school's for him and one came to me through another person. It was a special school. I was right to go and have a look. It was an eye opener for me children with high needs wheelchair's and I thought to myself does Nick belong in a school like this one, to me he didn't fit the category but in fact he did. He started the next year in the 4 year old early intervention. It was sad to leave the other one it was a safety net for me, but it was time to move on. He did extremely well at his new school. I would love to send my other children there but they don't fit the category for a special school. The kids the teacher's the aids are wonderful. Nothing was to hard for them and always willing to listen and help if I needed it. The kids are treated with dignity and respect some things that are a miss in main stream school's I find. Nick started Prep the next year and No 2 Son started 3 year old kinder. This is when I started to become quite unwell, it would take two years to find out what the problem was. It started with Migrane's I would be shopping bang migrane I would wake bang migrane, then my back started to play up. I couldn't sit I would have to lay down on the floor to watch TV I would be walking the floors of a night because my leg's where spasming so much, I would go see physio's, chiro's osteo's they couldn't fix it. To the Doctor's time and time again, CT scan's nope nothing. Then my doctor suggested I go and see a Eye Specialist. I went he checked me out then told me the disk's behind my eye's where swollen, I should go and see a Neurologist. I went to see him, well we need to do some test's. Brain Scan and Lumber puncture.  Bloody hell I thought to myself. The Brain scan was horrible, cage over the head in a tube geez. Then off for the lumber puncture, that was even worse especially when you hear the Doctor outside saying good luck for your first time OMG are you serious. I wanted my husband to stay but NO he couldn't that was one of the worst situations I have ever had to endure. After this they came and told me I had blood in my spinal fluid and too much Protein. They thought I had an aneurysm in the brain. I had to stay overnight and have an angiogram the next day where they inject the dye horrible process it was like hot flush going through my veins Yuck. Anyway they said no you don't thank God for that. I had what they call benign Intracrainial Hypertension which is fluid on the Brain Tablet's would help this the side effect's where horrible. But this was still not the Problem. I will get to that next time.

Back Home again.

Well back to the Norm again. Home and back to the little fellow and taking Nick to early intervention. He was in his second year. All I can say is this place was great, they gave me a little more insight and different ways to communicate, but Nick did well at getting his message across to us and he found his own ways of getting what he wanted a chair would come in handy, if he wanted something he couldn't reach. So we had to get pantry locks and fridge locks, but he always managed to get the fridge open even if I couldn't the locks worked better on me I think. Nick had a lot of test done at this time, by Doctors watching him all just to tell me he has developmental delay, what does that frickin mean I already know he is delayed. One doctor had told me as he get's older it may become more apparent which really make's more sense to me now. I dreaded going to the childrens Hospital or to any appointment's because Nick just never wanted to wait for anything. Waiting to see doctors is a long process. Nick would just start screaming or running around with me after him. I could never sit and read a book to him his attention was zero and because he could never focus on one thing for a second my mind would just spin. When he started screaming and carrying on mainly because I didn't want to miss the doctor calling us. I would be trying to get him to sit with me oh NO didn't work off he would go. I hated the attention of people looking at me, with those looks on their faces. I was sure in my own mind they were thinking oh shut the kid up. As time went on I really didn't care how much he cried and screamed, the more he screamed and carried on the quicker they seemed to get us in for our appointment and out. Which worked out better as I didn't have to wait so long.

It was around this time, when our family got the terrible news that my husband's Father had a massive heart attack and had passed away. He loved his grandchildren unconditionaly and always had time for both of them. He is so missed by all of us. I only wish he had of been around to see them grow up but I am sure he is looking down on them. I know he would be very proud of his son as I certainly am.

We try for a holiday....

Since we had Nick we had not been for a holiday, so we thought we would try and go for a long weekend up to Albury. No 2 son was just over one and Nick 3. We collected him from the early intervention and off we went. Nick was not good at sleeping in different places other than his bed, so I thought I would have to give it a go and try not to live in the same box every day. So off we went, long drive ahead of us. It was great to get away it had been three years since we had even ventured away from our own home. We finally got to our destination it was really nice place. We thought we would go and get some tea, fish and chips was the go. We found a place to eat and the next thing we knew. Nick had been sick all over the footpath oh shit... Because he had been at the early intervention and Nick love's sensory things his hands must have been in the rice which was uncooked rice and that is what was coming out ohhh Yucky. I thought of well, it may be just  a one off thing but no it was not. Vomiting all night long, we decided to go home the next morning it was just all a little too much. He was really quite unwell, gastro bad. The next day No.2 son had got it and the poor little man was so sick. Luckily we didn't get it. I think it was a week later and Nick was unwell again. My  instinct's tell me not gastro. I think the shunt is blocked again so back to the hospital and with the other little man to contend with as well. My parents and parents in law step in to look after No. 2. We both stayed until the surgery is done and make sure every thing is ok. I stay in the hospital with Nick and my husband goes home. Nick  was really good, I thought cause he was a little older he may not be as compliant as he was when he was a baby, but no he was a good fella having antibiotics injected and test's done. He was my brave little man. He also slept  well considering how busy and loud hospital's are. I know I never sleep well because when he's a patient I am in a way too. It had been three years since the shunt had blocked but I am glad I got him to the hospital before those blinding headaches happen. So far so good.

Early Intervention Program Start's

Nick was only two when he started at the early intervention. It was just like kinder, I guess this was all new to me as I had never been in this position. I had to stay with him while he was here because of his age I guess. With a new baby as well. I was still feeding No 2 bub so my Mum came with me to give a hand if need be and as I never liked to pop my boobs out for everyone to see. I would go into a private room to feed him. It was all routine they would play outside for a while and have circle and then do some activities. Which Nick did not want to participate in, he always wanted to be outside, and when they wanted him to sit to an activity or do circle time then would come the tantrum's. I can't remember how many time's I tried to get that little bugger to come in. I would just pick him up pop him over my shoulder and off we would go. This is when I started to notice, he was quite delayed as the kids there varied in degree's to very mild to needing a lot of help. I had no other kids in my life to compare. Also the older No. 2 got and he was developing well and chattering the more apparent it was becoming. Toilet training was not happening and still no talking just a hell of a lot of babble. When he was at the early intervention he was never interested in what any one else was doing never wanted to sit and try any activities no matter how hard you tried. Most of the other children were at least a little interested. It was really hard to come to term's with that.

Baby No. 2 and his Big Bro....

I had just had my second bub, he was a good baby to start of with. I think the first month was good the second not so. Colic had set in and Nick had decided when I was feeding or changing Nappies he would help himself to the fridge or the pantry. I couldn't watch him every second, what ever he could find he would get it. I was in the kitchen one day and he decided he would pour a whole container of cordial all over my carpet oh my goodness. I'm sure I said a few choice words. He also got into lots of different things locks were good but he always managed to get the fridge one off. He could work out if he got a chair he could get into the freezer. He also liked to hop into the cot when Jack was sleeping. When I was busy so was Nick doing something he shouldn't be. Jack decided to have his crying spell from 7 till about 10 at night the only time a had to myself. My husband was doing an arvo shift at this time he was there one week but not the next he was always a great help when they were babies. I had enough one day and I said to him you look after him I'm sick of this. So off I went and from then on no problems he had just let him go, and after that no more problems. I just couldn't stand the crying. I had to stop the crying but he just ignored it and that is what he needed. After that I didn't really have anymore issues with his sleeping. Thank goodness. Nick had started at the early intervention program, but more on that next time.

Here comes Baby No 2

I was nearing the end of my pregnancy, I had to go up to the early education place to speak to them about Nick. I had made the appointment, went up and sat out the front thinking am I here at the right time or the right place my usual worries, this was a big turning point for myself as I was quite shy. I pulled myself together after this and never looked back for Nick I would do what I had to. Meeting New people, who care's. I thought what can they do. So I got out of that car and off I went. I had held myself back from a lot of thing's but never again when it came to him. I would push myself no matter how hard I thought it was. So I met with them and enrolled him for the next year it. 

He had just had his second Birthday still no speech, some tanty's but apart from the no speech and toilet training going no where. His development was a little behind. The pediatrician said that his development may become more noticeable as he get older, I really didn't know as he was my first.

I was nearing the end of my pregnancy and Nick was being a little trying at times. He would get into the fridge and pantry help himself to anything. I was due in about a week and well this little one wanted to come a little early. I do remember it was a Saturday Morning, and My husband was going to work to do some overtime. I started to go into labor that morning. I suggested he stay home which he did. By the time we decided the contractions had stopped, so he went to work. I rang my Mum and told her what was happening and she and my dad came.They took Nick out for a while and my contractions started again. They were pretty mild, nothing to worry about. My sister in law had dropped in on her way home. I was sitting at the table and it was getting a little worse. I rang my husband told him to come home I gave it a little longer, we decided to go down to the hospital we saw the nurse and they said no you have got a while to go. Go home and rest I was like WHAT anyway did what they said. I got home Mum was staying over Nick was already in Bed. I decided to have a shower. When I came out the pain was getting pretty bad by that stage. I was sitting on the couch saying OOOHHH I can't do this, my Mum was asleep in the chair she woke and said well you have no choice. I stood up and it was like oh NO. I think this baby is coming now. Both of them said not here. I said to my husband get me down to the hospital as quickly as you can. I got into the car and my water had broken. I was just in a state at this point and so was my husband a 10 minute drive turned into 5.  He rushed into the emergency room from what he told me he just yelled my wife is having a baby. I do remember saying to him just bring them out to me. He was a shade of white you don't normally see on a face. They came and grabbed me and got me onto a bed and No.2 Son was born with one push within 2 minutes of them bringing me in. He was a beautiful baby boy we named him Jack. I was only in for a couple of days and being a Mum for the second time It was a little easier, but things were becoming more difficult with Nick.

Time Goes by....

Nick was growing well. Every time I went to the health center she said he was growing really well. I think he is going to be a big boy. As far as I knew he was developing ok, at this time I was getting terrible pain in my stomach and one night thought I was going to have a heart attack. I took my self down to the hospital. I had an ultrasound and showed I had Gallstone's oh NO. I went to see my Doctor and she sent me off to see a surgeon, who said you need to have your gallbladder removed. I thought ok I had never had an operation before and thought it's got to be better than having this pain it was SO painful. He put me on the waiting list and within 2 weeks I was in having it out. I was out of it the next day, but recovered quite well. I had been home for the weekend. I woke up the next morning with a very sore stomach were one of the incisions was and some ooze coming out and my husband said oh you stink. I took my self back down to the hospital to find I had an infection so they put me straight onto antibiotics. 

I was unable to lift anything heavy and had to stay with Mum and Dad cause I wasn't able to lift Nick. Nick did not want to sleep while we were there but did eventually. My husband was doing shift work at this time so we thought it would be easier for me to stay there during the week. It was good, but living with Mum and Dad again after being in my own home. I don't think I will be running back to live with them. I love my parent's but love my freedom more. Mum got up to Nick, she was great. She wondered if there was any thing wrong with his hearing. She thought he couldn't hear her when she was talking. Maybe you should get him checked out. So I did. His hearing was fine, she kept on at me I think she thought he wasn't developing as he should be, and I would get quite defensive at times saying there is nothing wrong. I had already gone back to work at this stage. Mum was looking after him one day a week and I worked on the weekends as well. She kept saying maybe you should get him checked out he should be doing more, he takes no notice of what your saying or he's just not interested he just ignores you. As he was my first, I didn't really know what was the norm. He was about 16 months when I found out I was pregnant with my second baby. Mum kept on about his development and I dug my heels in NO he's ok. Once he got to about 2 I decided  maybe she was right and had him assessed. I took my concerns to the health center sister and she referred us to another person. They said yes he has a developmental delay. I was like how do you know at two.  He was not speaking as yet and that was the sign for me. I think he should be at least saying something. So we got him in to an early intervention program. Which would start the next year. I was having a good pregnancy with the second baby no problems at all considering Nick's was not a good one towards the end.  And here comes baby No: 2 stick around for this one..........

Back to the Hospital again

So I had just been told that Nick had to have another surgery oh Bugger. My husband and I again sitting in the waiting room looking at each other like what the. I think it took about an hour before we went back to see him this little person with now a bigger scar than before but by all accounts he looked good. This time we were in a ward and I had to sleep on this fold out chair not comfortable at all and my Husband was there as well no private room this time. He came through it really well, and we were learning to live with the prospect that this may be a continual thing. We were only in for about 4 days this time.

We arrived home and things went on just as normal Nick was growing and doing well doing all the things that all babies do, was a very busy time lots of doctors appointments going here and there and no signs of any problems with the shunt thing's were looking good felt like I was back to my old self. I think he started do crawl about Nine month's and sit up a bit later. Standing at about 11 months. He had his first birthday that was a great day he was full of smiles. He walked at about 15 months. He was a pretty good baby and too me on all accounts he was developing ok. However my Mother thought otherwise, as always she was right. But I will get to that soon.

Home at last

Finally we got home. I was so happy to be in my own home. A little unsure with a new baby, and the situation of the shunt. My beautiful dog Rusty was at the gate wagging his tail, we hadn't seen him for a week. He was like our baby, but he was outed a little now poor bugger. Nick had come along really well. Was time to go back to the health center for weighing and measuring again. The health center sister was so happy to see us and I was too. I thanked and thanked her and she said I am just so glad he is ok. Yes he's doing well he has put on lots of weight and grown his head was same as before and she wanted to see us on a weekly basis for a while. That was fine with me we came to know each other quite well. Life went on as normal but a new little person had been thrown into the mix. Not long after we were home he started to cry a lot more and at times I could not settle him. One night he just decided to cry and cry it was in the middle of the night and I being a first time Mum and with the thought's in my mind is it the shunt decided to drive down to My Mum's at 3 in the morning. She says to this day, she thought it was a helicopter in the front yard. I had drove up her drive way and parked right outside their bedroom window with my lights in their window. She had come stumbling out saying what is wrong, he won't stop crying I don't know what is wrong with him. She took him settled him and said to me it's ok I think it's just wind, but I can't stop thinking is it the shunt. She said, has he had any of the symptoms that they told you he may get, I said no. Don't assume it is the shunt he's a baby and baby's cry quite a lot at this age. Ok I said. I did do this on a couple of occasions drop in on Mum and Dad, but they didn't care they knew what was going on in my head. This is when parents come in handy they just love you no matter how much you over react. 

Things settled quite a lot I didn't over react when he cried for an hour.I still had been going to the children's hospital every couple of months for check up's. I was a little concerned that were the shunt was at the back of his head felt like there was a little fluid sitting there. The Neuro said we will do an xray to make sure it is in the right place and it all looked good. I had been told I also may want to go and see a pediatrician which I did and had to see him every six months my first visit to see him was when Nick was about 4 months old. He still had the bulge at the back were the shunt was and I told him I don't think it's right. He rang Nick surgeon while she was in surgery and she said come back in and we will have a look. She said yes it actually is not sitting right it was draining but it's won't be soon, oh here we go again he was only 4 months old at this stage. Another Surgery bugger

Christmas Continues on anyway..

I had just been told my beautiful little boy had to have surgery. I was in a state of disbelief at this time. They had him up in the Nursery in a humidy crib. He had been crying, but because he was about to have the surgery I couldn't feed him they had given him this big Blue dummy which he sucked away on. They told me the operation usually takes about an hour. We went with him down to the room were they go before surgery to put drip and stuff in poor little man, I went in with him while they put him to sleep, oh tears just streaming down my face my poor little baby. We were then directed to the waiting room, they said go have a coffee and something to eat, I went down but couldn't sit, I wanted to go straight back and wait. Well this was the longest wait of my life it seemed like hours. I was also breast feeding at the time and they suggested that I go and use the breast pump first experience with this too ouch, but was better than my boobs exploding. I think by the time the called us it was about 2 hours. Finally he was out and we were in the recovery room with him he was really good but ready for a feed. He had a bandage on the back of his head other wise you wouldn't know. We went back up to the nursery, they had organized a room for us to stay in was nice two bed's and bathroom. They would just call me when I needed to come and feed him but I spent most of the time with him anyway. They told me to go and get some sleep and they fed him with expressed milk, I wasn't happy I wanted to be there, little did I know I would be sleep deprived for a while and would really have been thankful for that.

It was christmas day we were still in hospital Mum Dad my brother and his wife brought the turkey and rolls, and we made our own christmas it was really good. Nick continued to get through the surgery well and was doing good we came home New Years Eve. They told us we had to come back in 3 weeks for check up also told us what can happen with the shunt. The shunt can block which means the fluid will build up again and they will have to put another one in or it can get infection all the same sort of symptoms, headaches, he could be very sleepy he could also vomit. So with all those things on my mind we came home. Life continues with a few up's and downs but I will explain at another time

My Son's first Christmas

We headed of to the Children's hospital, It was December and two days before Christmas. It was quite a hot day and I don't think we had air con in the car at that stage. Nick decided that he would cry all the way there and being a new Mum it was a little distressing to say the least. I think we stopped a couple of time's and both of  us a little anxious not a good mix. We arrived at the hospital letter in hand. I never opened letters doctor's had written in those day's I dare say now, I do. If I want to know something, I either open the letter or open my big mouth. We headed for emergency that is where they had told us to go. I went up to the desk where I saw the Admission's and then the Nurse I gave them the letter and they told us to sit down. This was my first trip to the emergency but we didn't have to wait they sent us straight into a cubicle and next thing doctor's were all around him and again I was thinking what the Hell. One of the doctor's said we need to send him up for a MRI. I think I finally asked the question what is it I have no idea and no one is really telling me what they think. The Neurosurgeon will talk to you very soon.

We think he has what is called Hydochepalus,  there can be a few things that can cause this. Brain Tumor is one, webbing in the duct, and other things I can't remember. Hydrochepalus means that the fluid is building up in the Brain because it doesn't have the right avenue to get out something is blocking its passage out. We need to do a MRI or CT Scans as soon as possible. This also means he will have to be put to sleep.

Finally after the Ct and then MRI the doctor came explained that it was Hydrochepalus she said what we will need to do is operate and put a shunt in. Oh No I was thinking to my self  he is only three weeks old. If we don't do the operation it is not a good outcome. So we went ahead with it. Myself and my husband said whatever needs to be done do it. I asked the question what caused this. She explained that he had webbing in the duct's which had blocked the flow.

A shunt is a small tube (catheter) that drains extra cerebrospinal fluid from a ventricle in your child's brain to another area in the body. There, the fluid is either reabsorbed by your child's body or passed out through the kidneys.

I just was in total shock at this stage thinking my poor little fellow what a start to his life.

One of my most Difficult Moment's

So I can't remember how I got to the hospital or how my Mum got there. But we were down at the local hospital, waiting for the doctor to come and check on my new son. He was three weeks old at this stage. He came in had a look at him read the note from the health center sister. Measured his head checked him over all those things they do when they are babies, asked me a million question's. He said we will take him for an ultrasound. He was getting a little hungry as he had got over his sleepy jaundice stage and was feeding a lot better. They called us for the ultrasound she put it on his head moving it over and over it seemed to take for ever. Nick was not happy, I think he cried throughout the whole procedure, the whole time I was thinking what the hell do they think is wrong with him. She had finished what she needed to do and sent us back to the cubicle. Finally I was able to feed him and settle him a bit. Next thing I knew there was about ten doctor's in the smallest little room all looking at him very intently, chatting quietly to each other. I was sitting there looking at them all, thinking are you going to tell me something or WHAT. Then they all walked out, not even a word to me. I wanted some answer's I wanted to yell or scream but still I just couldn't. Then the doctor came in, he said I think he has fluid on the brain, the best hospital to take him to would be the Children's hospital in the city I have rang them and told them that you are coming. I then rang my husband who came straight to the hospital. He wanted answers but I really did not even know myself what was going on.

Little did I know a very good friend of mine was upstairs in maternity enjoying the most wonderful experience and I was having my worst.

My Mum had to drive my car home at that stage I had a big Ford XE Model Mum couldn't figure how to push the seat forward she is short and I am quite a lot taller than her not a good look I would say. 

So we headed off to the Children's Hospital..........To be continued

Being a new Mum

I had just given birth to my first son. He was the most beautiful baby I think I had ever seen. I am sure all Mum's say the same thing. I Had my first ever experience in hospital which was interesting. The most trouble was the breast feeding, I can remember buzzing for a Nurse and asking could you help me please I'm not really sure what I am doing, her answer to me was your a Mum you should know and of she walked. In my head I was thinking what the but I said nothing. We were in hospital for about 5 days Nick had quite bad jaundice and had to be put under the lights. The doctor said to me, you may have to go home and we will keep him here a bit longer. Um no way was my thought's on this I will be sitting on that couch waiting. He had his blood test the next day and things were fine. So we went home. Dad came to pick his son and wife up from the hospital. We got home which was nice Rusty was there to greet us I think he missed me wagging his tail barking as we drove up the drive way.

 I put Nick into his cradle and he slept and slept. The next day the health centre Nurse came for a home visit to weigh and measure and check him over. All was fine but he hadn't gained as much weight as she would have liked, she sat and showed me tips on breast feeding and also suggested I wake him every 3 to 4 hours as the jaundice makes them a little sleepy. I also had to go up to the health centre to weigh him to make sure I was feeding correctly. In the morning I woke after getting up every 3 hrs. I took him to the health centre and she said wow he has gained more in one day than he did in a week which he continued to do at a very steady rate, she said see you in a couple of weeks all looks great.

So things were going great in the two weeks, the only thing I noticed was his eye's looked a little funny. Mum said I think it is just wind. So the two weeks were up and I went back to have him measured and weighed, he had put on quite a lot of weight had grown length wise and she was measuring his head she did this about 3 or 4 times, she said to me his head has grown quite a lot since I measured him last. It might be a good idea to take him to the doctor's or to the hospital. What do you mean I said, what is it. She said I don't really like to say. I was thinking to myself well what could it be. So I will take him to the hospital if you are concerned at all. She said let me know how you go.

I went home and Called my husband and said if anything happens I will let you know as he was working. I then called my Mum and she said I will come with you, you don't want to go by yourself.  This honestly was one of the hardest moments in my Life but I will continue at a later time.

My first Son

I have decided to write this blog, as a friend I knew had written so openly and honestly about her life's up's and down's.

I have called this with a roll of a dice cause you just don't know what you are going to get. My first blog wow. Where do I begin. This will be mainly dedicated to My biggest treasure my son Nick. I fell pregnant with Nick 2 months after we got married. Oh what a pregnancy, I gained lots of weight not a good pregnancy, but every test and ultrasound said the baby was very good. I had to be induced as my Blood Pressure was a little High, and so Nick was  born. A very quick labour for the first one 3 hrs from the time they put the drip in my arm. All was great, never ever had I had such a feeling of Love and Protection over this little baby, we called him Nicholas Simon after my Brother who had passed away they where both born the same Month but Nick 3O years later.

That was the easy Part.     I could continue but it's school Holiday's  LOL