last night Pete went in to check on the kids as we always do before we go to bed. He saw Jordan down the other end of his bed asleep covered and i mean covered in vomit. He had vomit all over his pillow and through his bed. I ran the bath and undressed him he just sat there with a real blank tranced out look on his face. His expression didnt change while he was in the bath. We put him in our bed and he just layed there staring into space. I was actually really concerned if anybody knows Jordy they know he doesnt sit still for even a second and here was this child wide awake and just laying there.
He laid like that there for about an hour not moving not yabbering heck i don't even think he was blinking. He did keep gulping and we were scared he was going to vomit again.
Next minute he sat up gave me and Pete a kiss and started yabbering and playing.
In all my years of parenting I have never ever seen a child recover so fast.
We let him stay in our bed for another 30 minutes (2.30am by this stage) then we popped him back into his bed.
He fell straight to sleep and woke up good as gold this morning.
Weird weird child

We had the physiotherapist ring the other day. She had 12 families to ring to sort out how where to put each family in regards to waiting lists.
She said Jordan is on the urgent list.....I didn't think he was that bad.
She also mentioned that a occupational therapist will be coming out to the house. She asked me about Jordan regarding his crying (which he doesn't do) and the trances he goes into. She said she was a bit concerned about it all.
Fark its so hard to take in just over a month ago I had a little boy who had a wee bit of trouble with certain things but we were just a happy normal family. I have our own house 3 children and the token labrador with a loving man. I had the perfect life. When i was young all i ever wanted was what I have go. I had no dreams to become a prime minister or a doctor I just wanted "the American Dream" family.
I know I still have all that but now we have that distant black cloud hanging over us all the time.
I KNOW there are families worse of than us. But this is MY family.
To many people Jordy doesn't look all that bad and i swear some people just think I am a neurotic mum. I see Jords every day and a mother knows her child best.
Anyways there are more appointments coming.
Christmas day was fantastic busy but fantastic. Jordy took at least 15 mins on every pressie but we let him do it himself. He got a huge elmo ball pit which he loves hehe he got a rocking horse which he hates but he will get used to it.
Mum rang this morning she is getting my cat put to sleep. He is a seal point siamese and is just beautiful. When I left home I left him at mums as it was better at the time for him. I still go round and see him and give him lots of snuggles and love. He is 18 so i have had him for such a long time. I know its best for him and all that crap but that doesn't help the fact i have a huge lump in my throat that won't go away and my eyes keep watering. Brydee the little minx keeps running up to Pete and goes "dad dad mum Fwying) ...aka crying.
Right better start packing as we head away on holiday on Monday.

We went to a "early xmas day" yesterday. brydee ran off with the older children and was having a ball of a time playing with the kids. Jordy could'nt keep up so he sat by himself all day just holding a ball. I didn't say anything to Pete but it ripped my heart out. Brydee at Jordys age used to run after the older boys and copy what they were doing.
Pete sister was watching Jordy and said to Pete "well I don't think he will be a soccer player as he can't kick a ball" she wasn't being mean just stating fact. It made me start to think will he be capable of doing ball sports is there a chance if he gets a knock to the head will it make him worse????
So many questions.
I'm not in a good space at the moment at all. Working long hours and getting on average 4 hours sleep a night. Combine that with Jordy and a partner who doesn't talk and it doesn;t make a very good combination at all.
I feel that I am surviving just by a thread...

Holy crap freaken cow!!!!!
Was sitting here having a quick look at my emails on the laptop whilst Brydee and Jordan were playing with the dolls. When i felt the most tremendous pain on my foot. I looked down and jordans mouth was connected to my big toe.
Oh my lord the pain was horrific and the more i yelled the harder he chomped laughing the whole time.
Little menace!!!!!!!

I have woken up to a blimmen migraine. I have taken pills but i NEED to do my online shopping today. Woolworths webpage is taking so long to load. I also have Shakayla home sick from school ARGHHH
It was the social club xmas party at work yesterday (i work in a bar) and I had to work but Pete took Bry and Jordie down. Kayla was at a friends house.
Jordie loved it he was a bit shy to start with but made friends with all the ladies hehe. Bry sat drawing for ages and she conned one lady to draw pictures with her for 45 mins.
santa arrived and Brydee was so excited but went all shy when Santa spoke to her. He ame and sat down with her and spoke to her. She was shaking with excitement.
Did I also say it is absolutely pissing down with rain.
Its also "that" time of the month. So i feel like utter road kill.
Brydee is watching Santa claus 2 and Jordie is in bed asleep. Shakayla is watching Grease in my bed. Once i have finished the shopping which is still taking forever to load i might take Bry to bed with me and have a wee sleep.

Well silly me left my laptop open today whilst i went and put the kiddies clothes away. I arrive back in the loungeroom and darling Jordy had taken 7 keys of my laptop....argh.
I told him he was a naughty boy and he knows not to touch my computor. He put his head down dropped his bottom lip and was looking up at me through his eyelids.....he looked so sad i didn't have the heart to tell him off any more. So i sat him on my lap and tried to explain to him that the laptop was mummys and he has his own musical laptop so he then proceeded to try and pull the buttons of his laptop.
Seriously Brydee never got into anything like that she never pulled the cds out or had a fascination with buttons and anything electrical. I was talking to mybubbarox and she was saying her youngest is the same it must be 2007 babies arghhhhh

Well we have been trialing Jordy on a bit of dairy he has had no rash which is great. But this morning he did a poo and it has peeled all the skin of his testacles...poor wee man. The poo was really really runny so I'm not sure whether it is from the ice-cream he had yesterday or a wee tummy bug. I let him crawl round this morning with no nappy on but had to put one on him to goto bed. When he woke up his wee penis and testacles were a deep red but not bloody looking.
He seems happy enough with it.

We got the letter today from the hospital about his last appointment.
It basically goes through what was discussed in the clinic. I think i have been holding onto the little bit of hope that he doesn't have cerebal palsy but it is written on paper now he does. The letter also goes onto say he will be sent for a mri, hearing tests and his referrals to Beacon House, Early Intervention and dietician.
Also goes onto say that she thinks his delayed gross motor skills and oromotor skills are linked.
I actually feel quite down about it all. My child now has a label which I know in the grand scheme of things doesn't matter but he will never be "normal". He will always need some sort of help.

Well I hit rock bottom at 2am this morning. I couldn't sleep and I had a total meltdown. I was so close to just walking out and just walking to nowhere in particular. I felt as if the world was on my shoulders. I wrote a mega huge letter to Pete telling him I couldn't cope anymore with everything. Its not only Jordy its the new job, its christmas, its everything. I told Pete that i couldn't cope with him not talking to me about everything and how we don't do things as a couple anymore. I suggested us getting a movie out the other night and he said that he didnt want to as he couldnt be bothered. So we sat in the lounge with him watching soccer. I know he copes in his own way but we still need to be a couple.
I ended up falling asleep about 6am on the couch.I left the letter on the table for him. I woke up to him cleaning up and I was sort of scared of how he was going to react to the letter...the daft twit hadn't even seen it. So i ripped it up before he could. We did however have a huge talk and seemed to have settled a lot between us.
The girls stayed at my nannas last night so we only had Jordy. We took Jordy and Murphy (dog) down to the beach today and had a nice afternoon just talking.
Needless to say i feel like a pile of crap today but am making a effort to cook tea soon. Chicken stuffed with capsicum and bacon with a huge salad and strawberries and icecream for dessert.

Jordans montage

http://www.youtube.com/watch?v=RA2TNb3iAXI

Aww what a softcake I am. I have just finished doing Jordys montage. He has changed sooo much since he was little. Such a wee show off as well he loeves smiling for the camera. I truly am lucky to have him as a son.

Non eventful day today (which is great). I took the kiddies down to Eastgate shopped for a bit and purchased our secret santa pressies then went upstairs and had a sandwich and a play on the playground. Gave Jordy a mouthful of ice cream out of my iced chocolate. hehe i think i have converted my son as we presumed and were told he was allergic to dairy he has never had dairy.The pead told us to start trialing him on dairy. I gave him some ice cream last night and nearly wet myself laughing at his ice-cream shudders he didnt know what to think but he loved it....and didnt react!!!!

The pead has just rung and spent 20 minutes on the phone to me. His tests are "nothing" really to worry about. A few things are elevated but nothing serious at this stage. His blood had clotted so was hard for the blood people to take very accurate tests but she assured me they are all very trained.
He will need more tests done and she said that to continue on with the games we play ie incy wincy spider, twinkle twinkle little star as they all help with the muscles.
The enzymes that were up in his heart also relate to the muscles which is why it was elevated.
We are still waiting for the "scary" test to come back.
She said he "could" of had a stroke in utero hense why he is delayed but will be doing a brain scan on him. I also mentioned about the fall he had when he was younger and she said in no way would that have caused it.
She also said i'm in tune with Jordy and am a good mum to him "polishes perfect mum badge" hehe
She was absolutely fantastic in reassuring me that nothing bad will happen to Jordy and his CP is only mild YAY.
Once the physiotherapy is underway hopefully he will start to improve.
I am so glad she has rung I have been worried sick thinking the worse from the blood results grrr my gps for worrying me.
I do think this has to be the best news for a long time. HEHE she also said what a handsome wee man I have "polishes proud mummy badge".
The support that I have recieved on here and on the msg boards has been fantastic and it really does help to cope knowing we are not going through it alone.
So thank you all.

BANNED FROM TRADE ME

There have been a few posts regarding me being banned from Trade Me. I got banned in late June for listing my montages as it is a service. I emailed trade me and got reinstated and promised i would never list them again...I didn't. BUT I did post in the employment thread saying I was looking to look after children through Porse, if they were interested they could contact porse....and wham bam I was gone. I rang up TM and they said I was advertising a service. I said thats what everyone does and do in employment. I asked if I was being reported and she said they have to take every report seriously.
They wouldn't reinstate me.
I used Petes trade me name and that was disabled with an email saying he has contact with "kaylabumbis" and it is far too much of a risk for me to have contact with the boards...pffft not like i was going to bomb them or anything.
I then started using a friends tm name under her permission and that got disabled too....I am done trying.
I do miss all the support and lovely ladies on TM.

I had my work do last night so all the kids stayed at mums. Jordy was in the portocot in the lounge. He slept right through the night yay. I just got of the phone to mum and she had just put Jordy down for a sleep but he is sitting up singing away to himself.
At the moment i am on hold to the hospital waiting for his results argh......
Just got a recorded message saying they were unavailable....bigger argh. So i rang my GP nurse she mentioned something about his lead levels???? I have made an appointment for him tomorrow to talk with my GP. My nurse also said to ring the hospital back so I have and they flippen disconnected me.
Hehe I am typing this between phone calls.
I am ringing them back again.....how dare they cut me off.
This is ridiculous what do I need to do to speak to his pead? This is my son we are talking about. I just want some answers.
Right just got of the phone his pead is in clinic this morning so not able to talk to me. I have left another message for her to call me.

Hehe and today is mine and Petes 7 year anniversary. Off out for tea at the Halswell Quarry for my workdo....hehe all paid for.

Mybubbarox aka kelly just arrived over with her wee girl Alexis (17 months). Jordy was in his highchair and she was telling him off for not eating she kept poking a hot chip in his mouth and yelling "eat" she would then get his drink and try and put that is his mouth and yelling at him to drink. Jordy was not impressed his wee lip started to turn down. Kelly and I were in hysterics with her.
I also had a friend point out today that the reason that Pete isn't coping with Jordy having CP is that he dropped Jordan on his head when he was younger. I had completely forgotten about it. We did take him to afterhours and they said all was fine, but it could be playing on Petes mind. Food for thought eh!

Well.
What a weekend. My brother Jamie his fiancee Janice and my sister Danielle took all 3 children to christmas in the park on Saturday. Janice said that Jordy didnt stop eating. hehe i saw a video he took and he was ramming chippies in his mouth.
They got home about 11ish and both Brydee and Jordy crashed.
Yesterday we went out to the motukarara races. There was no chance at all of us getting sunburnt Brydee spent the day putting the roll on sunblock on everyone. She even put it on the soles of her feet and on the inside of her lip.
Jordy didnt want to settle last night we put him to bed and he cried, now he never cries when we put him to bed. I left him for a bit and then got him up and gave him a cuddle. I put him back down again he started crying so i put him in bed with us. he spent the next 45 mins crawling round like a worm. That boy never sits still. He made a great game out of giving Pete huge openmouth kiss then he would give me one. He laughed and laughed. The only problem was Jordys sense of aim isn't the greates so we were getting the kisses on our cheeks, chins, noses and eyes and their was dribble from here to Africa.
Jordy then started smacking the wall with his head. He just kept on smacking the wall. We tried to distract him by playing "round and round the garden" so then he thought it was time to play "row row row your boat" he grabbed onto petes hand and mine and started rocking and singing ooowe oooowe ooowe oooowe ooowe...too cute. I put him back to bed and he crashed within minutes and didn't wake up until 9.am this morning.
I still havn't heard fromt he peads....ARRRGH

Its the little things that count....

I went to change Jordys nappy today i took it off him and rolled it up. He immeadiatly sat up picked his nappy up and knee walked over to put it in the bin. He did stop 3 times and he did get his finger stuck in the bin but he did it!!!!!
He then came back over picked his pyjamas up and proceeded to put them in the bin as well LOL.
One step at a time eh.
Shakayla, Brydee and Jordy are of to christmas in the park tonight with my brother while I work.
hehe rather him than me.
Right I am out to tackle our garden today. Brydee is already to help so should be fun.

I was looking at my old pictures last night and noticed that Jordy had his hand raised in so many photos. Plus it isn't only his right hand i took a picture of him on Sunday and his left was like it as well.
Now I know what it is I am so conscious of it. Whenever i see his hands like it i massage them. I don't know if i am doing any good or not but it sort of helps my mind to cope.
I was changing his bum before I sat him up and he was cuddling me I was looking at him thinking you poor wee man when he gave me his enormous grin. He doesn't know what is going on. He thinks all is normal.
At the moment he is knee walking around with a plush soccer ball hanging out his mouth.
I also noticed he grunts a heck of a lot.
he isn't stupid he knows what he wants and he understands me.
Pete still isn't talking about it. He is quiet at the best of times.
Jordan also has a complete fascination with anything electrical ie, cellphones, remotes, cameras,phones,. If he finds them he takes of with them like a bat out of hell. He loves balls. He will get a ball bring it to me I throw it and he will go and get it...this will go on for hours he just keeps fetching.
He cannot sit still. He won't sit down and do a puzzle or play with toys. He is like a bumblebee flitting here there and everywhere.
I have heard the Champion centre is fantastic so hoping they will be able to help with Jordan.
CP is normally caused by something that happened at birth or in the womb.
I cannot pinpoint when it happened. He was very jaundiced at birth, he did have a csection forcep delivery where there were big bruises on his head and he was also on a bubble cpap mask after he was born.
I wonder if i can ask for a copy of his medical notes.

cont

I rang the pead today and am waiting for her to ring back. She was going to ring back before 3.30pm....im still waiting.
I suppose if she hasn't rung it can't be too urgent but those enzymes results are worrying me.
I spoke to my gps nurse today and she said the electrolytes and chloride relate to his kidneys but she didn't want to elaborate too much.
She said the pead will explain it better.
Jordy has a bit of a cold at the moment, I have been watching him like a hawk!!!!
hehe I had to giggle at Brydee today I asked her if she would like a ice block she said yes so i gave her a lemonade popsicle she saw me take a magnum out and decided she would quite like to share mine.
So we sat on the deck she would give me a bite then she would have 4 i got the giggles watching her....and she ate all the chocolate on it.

A new day

I had Rach aka Rosenshan come over today her eldest has CP.
Talking to her was a breath of fresh air. She helped clarify so many things. As soon as she saw Jordy she got goosebumps and said he has the classic look of CP kids. She said that he will probably need a brace as his right leg really turns out.
Jordy charmed her with his big blue eyes and smile.
I really don't feel so bad about it all.

cont

I got some of Jordys test results back today.
he has raised levels of chloride, electrolytes his thyroid is raised and he is anaemic. The one that is worrying me is the raised enzymes in his heart. My heart dropped when i heard that. I have to ring back next week. I'm scared.
Pete is so quiet over it all i ask him what he thinks about it and he says "well we just have to deal with it" yeah i know that but i want to know what he is feeling.
I know Jordy isnt anywhere near as bad as what he could be but he still has damage to his brain.
Thats a lot for a mum to deal with.
I feel so helpless I want to start helping him as soon as possible but i have to wait for an appointment etc etc

life really sucks sometimes.

Jordy got discharged from the dietician last month. We had his paed appointment yesterday Pete and i really thought he would be discharged from the paed as well.
His weight was 9.65kg so he had lost 300gms in a month. The paed kept looking at Jordy funny and asking me to do things with him like getting him to throw a ball and trying to make him walk. She also noticed like we have that his right foot turns out. She also mentioned his hand that just hangs there. She asked me what i thought about Jordan. I was honest with her and said i have always felt there was something not quitre right with Jordy but i couldnt put my finger on it. I said how another paed had mentioned CP and she said thats what she thinks Jordy has. She also mentioned another disorder but i can't for the life of me remember the name of it.
I was talking to mybubbarox this morning and said how i can't help but blame myself for him having it. I wondered whether the polyhydramnios had caused it hehe she told me not to be silly and that i hadn't caused it. Thanks Kel!!!
At this stage we don't know how bad Jordy is but we will get through it. Its not the life i want for my son but we will cope. I keep thinking of this poem and it seems so true.

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

* * *

today

Do you ever question why we were put on this earth. After following wee Kyahs journey i have started to ask myself this. One little girl not quite 3 changed so many different peoples outlook o life. How can one little child accomplish this?
If one child can achieve this imagine what the world as a whole could do.
Kyah has changed my life. I am more tolerable with my children. I take more time out to just play and be silly with them. Life can change in a minute.
I got a phone call this week from a good mate of ours who said his brother who Pete went to school with and played soccer with was in a huge car accident and now potentially will never walk again. Such a huge waste of such a gifted young man.
So much sadness.
Soemthing a bit funny but naughty hehe
Jordy spilt a larghe packet of split peas over my kitchen floor i walked in and saw it and said "for f8cks sake" wee Brydee pipes up with "ucks sake Jord"... I had to walk away then tell her mummy was naughty as she said a naughty word.

About time for a new post.

After finally remembering my right email address and password i am back online.
Shakayla is now 11 and a typical tween. The attitude sucks!!!. There are times when i still get the glimpse of my sweet wee girl. She is fantastic with the younger two and she loves them to bits. I don't think she has ever argued or had a go at them. She is shocking at helping to do chores but we have been making her to dry the dishes at night.
The other night after tea she washed and dried the dishes, cleaned up, folded washing and got the kiddies ready for bed all without being asked...i was blown away.
She still thinks her head is just there to look pretty. Last night at 11.30pm i went to goto bed and checked on her like i normally do and she had her lamp leaning up against the mattress it had started to burn a hole in the mattress and was smoldering. Needless to say i was so relieved i went into check on her and decided i will change the batteries on the smoke alarm just incase.
I went on school camp with her a few weeks ago. A freaken 4 hour walk through mud and sand was the first day. The second day i got bitten by the horse that i was leading.... has sort of put me of camps for a while.
Dear sweet brydee is so well behaved. She loves helping to do chores and helps with the washing, dishes and general cleaning up on a daily basis. She is still very much a daddys girl and loves curling up in bed with us first thing in the morning. She still has her Lala (elephant) who gets pulled around everywhere. She loves Dora and she can't wait until Santeeze (santa) comes. I am so looking forward to christmas this year as she finally understands and the magic will come back into xmas. Shakayla hasnt believed for a few years now so it is all so new again.
Brydee can't say Jordan she calls him Dore. Her and Jordy get on so well and play together all day.
Jordan.... well where do i start. He is finally walking at 18 months. I didn't think he would ever get the hang of it. He has been discharged from the dietician and has nearly hit 10kg. he is still under the paeds and has an appointment next week. I got his hair cut the other day :( he had a head full of blonde curls. He now looks like a little boy. He can hardly speak. He can say ta, dad and that. But he will get there. He is just slower than "normal" kids. He loves to sing in his monotone voice and bop away to music.
Yesterday we put the xmas carols on and sang and danced for over an hour. Both of the wee ones loved it and had the huge open mouthed smiles that just make you melt.
I am now working 3 nights a week. It is hard as i miss the kids and Pete heaps but its extra money honey. pete is fantastic with the kids i really couldn't ask for a better partner in him. he thinks nothing of doing all the housework and having everything perfect for me. he is one of lifes true diamonds.
Right i have rambled on a bit i now have to go and get ready for them and then i might wrap some of the xmas pressies. We have already gone for a walk today to look for bugs...weird child that i have loves bugs.