Welcome

. . . in all seriousness, thanks for stopping by! This blog will no doubt evolve over time, and will include all sorts of content. My aim is to let you know what we're doing as a family, how I'm coping as the mum of a child with Cerebral Palsy, and a variety of other things too.

If you are the parent of a special needs child, I pray that you will find encouragement, hope and support within these posts. I'd like to get to know your story too, so be sure to leave a comment.

I hope you'll come back soon.



Friday 27 April 2012

We're in!!!!

It has been an agonising month of waiting to find out if Isaac has been accepted into the Champion Centre.  The first meeting of the early intervention co-ordinators was cancelled, then the next meeting wasn't held due to school holidays.  Finally they had the meeting yesterday.  The result?  Yes, he's been accepted.  Isaac will now get regular physio therapy, Early Intervention, speech language therapy, music/computer therapy and some occupational therapy through the champion centre.

This is such a great opportunity for Isaac.  We've been waiting for over two years for this.  Now that he is that little bit older, I've started noticing more things that "aren't quite right", so have been advocating to get him transferred to there.  Bring on the next stage in Isaac's journey.  Can you tell how excited I am?  This is a really BIG DEAL.  He has an assessment next week and starts the following week.  Now all I have to do is rearrange my work schedule to fit it in.

Something else that I'm going to try, is a regular Wordless Wednesday post.  I've seen this on quite a few other blogs.  Often I struggle for inspiration when taking photos, and don't take nearly as many as I should. But I'm thinking I've got a clever way to "cheat".  I'm going to use the #photoadayMay challenge list. 

This will of course end up being another moving, evolving project but I'm hoping that I will be able to commit to it.  There are quite a few people out there in the blogisphere who are using instagram for their photos, but I prefer to only publish certain photos.  You will most likely end up seeing the photos either individually or as a collage.  But then who knows just how creative I may get.

Don't you hate it when you're writing, and your mind suddenly goes blank, and you have no idea of what you were going to write next, even though it should have just flowed and followed on from what was previously written.  That has just happened.  Arrrrgh!

I thought of this on Wednesday, so I'm actually going to begin next week, and am using the last few days of April's challenge list to get started.  I'm not going to post every day.  There's way too much going on in our lives to be able to do that, and if I was to do it monthly, it wouldn't be often enough and I'd lose interest and probably wouldn't accountable to do it regularly.  You like my thinking?  Not too much to be a burden, not too little to get forgotten.

Hasn't the way we communicate and share our lives with loved ones changed so much, particularly over the last decade?  Hmmm, I can see another post coming from this, LOL.

Monday 23 April 2012

What a great day

It's been a really good day today, and the boys have been fabulous.  I've been having issues with Reuben getting ready in the mornings.  Occassionally he behaves, but more times than not, it is a huge drama just to get out the door  to get to school on time.  Phil leaves for work before any of the rest of us get up, so I'm basically a solo parent in the mornings.
Not sure where I found this, hopefully I'm not breaching a copyright!

This morning Reuben was super good, got himself dressed, had breakfast, etc no problems, no disagreements.  Then tonight when we got home, I had a terrible headache.  Although I hadn't said anything to Reuben, he was being really helpful.  Then we sat on the sofa and practised the sign alphabet.  His class have been learning a bit at school.  After we'd done that for a bit, and spelt out all of our names, he said to me right out of the blue, "Would you like me to brush your hair mum?"  Not something I'd normally go for, but why not it might help my head feel better, and it'll be relaxing anyway.  It was soooo nice and very relaxing.

After both boys eating all of their dinner (doesn't happen very often), I got Isaac through the bath and Reuben had a quick shower.  It was a reward for him since he'd been really good, but only on the condition that it was quick.  Now, yours and my idea of quick, and that of an almost 6 year old boy, are two totally different things.  For a while he has had to have baths because he was taking over 20 minutes to shower.  Tonight he was nice and quick, and both boys were in bed on time!  Again another rareity in our house.

Sometimes it just a combination of small things, that make it feel like a big deal.  Let's hope that this behaviour continues.  What have your little rascals done lately that makes you feel really good?
  
Creative Images

I haven't heard from the Champion Centre yet, so I'll be phoning tomorrow to see if I can get things moving along.  It's over six weeks since Isaac's appointment with the consultant, and we still haven't had an apointment with Speech Language.  I think it's time for me to get that moving along too.

I've added a couple of You Tube songs to the sidebar of my blog.  They have been a source of hope and comfort during some of the most challenging times in my life.  Take a listen, and see what you think of them.


Friday 20 April 2012

Happy Anniversary Baby!

First off, here's the video that I promised you the other day.  Isaac's ode to himself!


Isaac calls himself I-yuk, and Reuben is Boo-bin (he's been upgraded from Baboon). 

The other day I was trying to explain to Reuben what nick-names are.  I gave him a couple of examples - your name is Reuben but it could be shortened to Ben, and Isaac is Zac.  The confused look on Reuben's face was priceless.  He said "But his name is Isaac, Mummy, not Zac".  I couldn't believe what I was hearing.  After Isaac was born, Reuben refused to call him Isaac, and insisted that everyone call him Zac.  Oh, how times have changed.

And speaking of times changing, this day 21 years ago my life changed forever - it was my wedding day!  I can still remember how sore my cheeks were by the end of the day because of all of the smiling.  We were both quite young when we got married, so I guess that you could say we're growing old together.  I've been married for more than half of my life!

We've certainly been through a lot in that time, highs and lows, laughter and tears, memories and moments.  It has been quite a journey that's included relocation, redundancy, buying our first house, having our beautiful boys, the passing of loved ones.  I can't imagine what life would be like without Phil, I don't want to imagine what life would be like without him, and I pray that I won't need to know what that is like for a very long time.

The following verse is one that we both hold very dear - Joshua 24:15 "As for me and my family we will serve the Lord."  We've tried to do that over the years, sometimes more successfully than others.  Now that we have the boys, it is even more important to do this.  I want to set a good example for them.  I know that I have a lot of areas that need work.  Some I have made progress on and others, well let's just say that I have my moments.

I think that I have also found a new project that I'm going to have to tackle at some point. I've only just realised that none of our wedding photos are digitial, so nothing to add to my post (sorry). I'm going to have to scan them all.  Might do a bit of photo shop editing on them too!

Wednesday 18 April 2012

Hoping that no news is good news

I'm still waiting for a decision around Isaac receiving treatment from the Champion Centre.  He had an assessment with his physio at preschool yesterday.  She is really pleased with the progress he has made in the past 3 weeks since he has had his walker.  I still can't believe the difference it has made to his balance.  Sometimes at home Isaac will use his walker, other times he will hold our hand and walk around (he won't let us hold both hands anymore).  He loves to practise walking, and is just so persistant.  I'm really proud of him!  And the things he says, are just sooo cute - "I made it!",  "watching?", "doing?", "going?", and he's just started saying "silly me".

(I was going to add a video of Isaac playing Reuben's guitar, but there are technical issues.  Will post another day.)

I had been starting to get quite down about Isaac's progress.  But I've been reading a lot of blogs over the last couple of weeks, and in addition to be really encouraging, it has reminded me that Isaac really is such a wonderful wee miracle.  We have been so blessed.  Something that is applicable for both what's happened with Isaac and in our city with the earthquakes - there is always someone far worse off than you.

Reuben has been enjoying the school holidays and going to the holiday program (run by the same people who do after school care), but has also enjoyed a 5 day holiday down at Nana's.  Both boys missed the other will he was away.  It's great that they get on so well together.  Isaac went out and stayed at my sister's for the night last Friday, he had a great time playing with his cousin too.  Phil and I had a nice dinner out at our local restaurant.  Then Sunday night we took Isaac to a Tactix netball game.  He had a great time, loved the thunder sticks, and was really well behaved.  Although it was a close game, the result didn't go our way.

 
If you have any suggestions for regular features on my blog, they would be much appreciated.  And if there's any questions you have, leave them as a comment - depending on the length or depth of answer required will determine whether I reply to the comment or us it as the topic of a post.

Until next time . . .

Friday 13 April 2012

2012 Ultimate Blog Party



Sometimes it helps, just to let your hair down and meet some new friends.  In the week or so that I've been blogging for, I've visited a heap of new blogs.  This is a great chance to find new blogs from others on topics that you are the interested in.

If you've arrived at my blog through the Ultimate Blog Party, you're here at a great time!  I've only just started blogging - it's been a little over a week, so it shouldn't take long to catch up on what's going on in our family (unfortunately, the majority of my initial blog disappeared, so I've rewritten most of it, but it isn't as well written as it was originally).



Just a quick intro - I'm Tui, mum to Reuben (aged 5) and Isaac (aged 2, born with Hypoxic Ischemic Encephalopathy Grade 3 and recently diagnosed with cerebral palsy), and married to Phil.  We live in Christchurch, New Zealand, so in addition to the challenges of raising my gorgeous boys, we've been dealing with 19 months of earthquakes (more than 10300 of them!).

How did I choose the title of my blog?  As a kid, Mum sometimes used it as my nickname.  As for the by-line, I thought that maybe I was being kind of crazy in starting to blog, it's always chaos around here (between family, work and ongoing earthquakes), and yet I'm still quite a normal, rational individual (I think I am, anyway).

Wednesday 11 April 2012

What's happened between then and now?

After we got home from NICU, Isaac continued to show progress.  However, we still didn't know what we were going to be faced with over the coming weeks, months and years.  A really important part of his ongoing care was through an early intervention program, which works in conjunction with the hospital to ensure the best outcomes possible.

There are four options for early intervention care in our city.  We couldn't get into The Champion Centre, which is near our home, and has a fantastic reputation.  In fact we only had one option, all of the others were full.  I guess the benefit of the program we ended up under, was that they came to you, instead of you going to them.


Reuben (4 years) and Isaac (6 months)

When Isaac was 14 weeks old, I went back to work part-time.  Sometimes you just gotta do what you gotta do.  So he was in the nursery at the same preschool Reuben was at.  This was great, as it meant that Reuben could pop over and visit his little brother.  Also meant that I only had one drop off and pickup each day.  Reuben just adores his little bro.
He was seen by the speech language therapist and developmental therapists until he was nine months old.  At that time he was discharged from that part of early intervention because he was less than 25% behind a typical child.  I wasn't very impressed, but figured that if there were problems going forward he'd be able to get more help. 

Reuben (4 1/2 years) and Isaac (12 months)



So we did the appointments, and Isaac made really good progress.  When he first laughed, the sound was awesome, and the feelings that it generated were almost overwhelming.  Fortunately he has been able to eat regular food, although he doesn't do well with anything that requires much chewing, and has started talking.

Physically he has made steady, albeit slow, progress.  Watching him learn to roll over, sit, developing through to commando crawling, bum shuffling, and then back to crawling.  It was progress, but  I was starting to wonder if he would ever walk.  I know that I should have been grateful that he was progressing, and we weren't facing worse case scenario. 

Isaac (17 months) at preschool

So, two months ago when we had our appointment with the Neo-Natal Consultant (NICU babies usually get "upgraded" to Paediatrics between 2 and 3 years of age), I decided that it was time that we got some action on Isaac's development.  I went in with quite a list of things that I wanted to have checked out.  Since then Isaac has had an EEG to determine if he is having absent seizures, seen an opthomologist for possible lazy/cross eye.  He drools quite a bit,  I have found that he doesn't like eating food that has to be chewed very much and a lot of his words are difficult to understand.  We are currently waiting on a referral to speech language therapy.

Isaac has gotten to the point where he can stand if he's leaning against something and walks around holding onto furniture.  If he tries walking by himself he is very unsteady.  The issue is that the brain damage he suffered is in the area that affects balance.  He is now seeing his physiotherapist more regularly and got a walker about 3 weeks ago.  This has made an enourmous difference to his walking, balance, social interaction and confidence.  He loves the independence it's given him, and can't get enough of going to the mall.

First day of cruising at preschool with his walker

There are currently vacancies at the Champion Centre.  Tomorrow there will be a meeting to determine if we can get Isaac in.  I'm praying that he will be accepted, as I believe that they will help him to progress even further.

Sunday 1 April 2012

Heaven's very special child

This is for all the parents out there who have been given a special child


Heavens Very Special Child

A meeting was held quite far from Earth
“It’s time again for another birth.”
Said the angels to the Lord above
“This special child will need much love.”

His progress may seem very slow
Accomplishments he may not show
And he’ll require extra care
From the folks he meets way down there

So let’s be careful where he’s sent
We want his life to be content
Please Lord find parents who
Will do a special job for you

They will not realize right away
The leading role they’re asked to play
But with this child sent from above
Comes stronger faith and richer love

And soon they’ll know the privilege given
In caring for this gift from heaven
Their precious charge, so meek and mild
Is heaven’s very special child

This reinforced for me the fact that God was not going to make me face anything more than what He could help me survive.

I have to admit that after Isaac was born, it took me a while (probably close to 2 weeks) to even want to start bonding with him.  Sure, all the tubes and wires made it difficult to get close to him, but I don't know that I could have anyway.  I didn't want to make it any more heart-breaking than it was already going to be, should Isaac not survive - which is what all the indications were.

Yes, I prayed and believed that God could go back in time and protect Isaac's umbilical cord so that there was still enough oxygen getting through to his brain (ie that He could prevent the brain injury from occuring in the first place).  What my faith struggled with was, that if Isaac had been deprived of so much oxygen for so long, could he be healed from the insult that his brain suffered.

When you face something like this, it challenges you - your beliefs, values, faith, determination, basically everything that you are - to the core of your being.

Then there were the issues with PTSD (post traumatic stress disorder), depression/post natal depression, and the uncertainty of Isaac's long term prognosis.  Not mention what the earthquakes have done to disrupt so much of what used to be normal.  More on all these another time.

Thanks for stopping by, hope that you'll come back again.
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