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.