Just how much does he understand?

Tonight on the news there was an item about a baby in NICU. Afterwards Phil was helping Isaac finish his dinner, they were talking and long story short, Phil said "you were sick like that when you were a little baby, but you're all better now."  Isaac said to him with a sad face "I fall down." "Yes, you fall down more than other kids, but you're getting better at walking, and you'll be able to do it buddy."  "OK Daddy" replied Isaac.

When Phil told me what happened, I wanted to burst into tears and hug my precious little boy.  It also makes me wonder just how much Isaac knows and understands about what has happened to him.  But it's amazing to see the faith a young child has in his father.  Isaac trusts Phil implicitly, and believes that if Dad says it's going to happen, it will.

As I've said before, Isaac loves going to Champion Centre.  The therapists are fantastic, and they think that Isaac is great.  But I have to ask you, who wouldn't love a little cutie like him?  Computer therapy involves singing and stories, counting, pushing buttons and popping bubbles on the screen.  As if that's not incentive enough, there's usually a reward of stickers for a session well done.

There are always interesting toys to play with and textures to explore in play therapy.

Isaac enjoyed standing to play with this puzzle track.  It's a lot like the car tracks we have at home, only this one is painted in pretty colours.  I am amazed at how well his balance is improving.  It's hard to believe that he's only had his walker for two months.  What a difference it has made.  His confidence has grown, and his brain is learning what is required to keep him up and steady.

Before he got his walker, Isaac often used to practise his standing and balance on the trampoline.  This is great since it's got a rail to hold onto, no falling and breaking your wrist with this one!

Another thing that Isaac has been doing regularly at home since he started at Champion Centre is singing.  And music therapy is all singing. When he getting into his carseat, we sing up, up, up, and then when he sits down, we sing down, down, down, raising then lowerly our voices.

The sound cradle is really cool.  I've never seen anything like it before.  It's stringed like a guitar or harp or something, and when it's played, the sound waves vibrate through the wooden cradle.

Look at the balance and concentration.  Aren't those ribbons moving beautifully?  Not only does this work on on balance but moving the arms across the centreline of the body, both horizontally and vertically.  Think that I've got that right.

Lots of concentration here matching the shapes and colours then getting the shape into the hole round the correct way.

It's not surprising that when Isaac has finished his morning of therapy that he is super tired.  So tired that sometimes he is almost asleep in the car by the time we get to preschool - less than 2km away. When he gets to preschool, it's lunch time, then he goes down for a nap.

A Beautiful Gift From A Beautiful Friend

Yesterday I met a friend for lunch.  We'd arranged to meet a couple of weeks ago but ended up having to postpone.  I almost put it off again as I hadn't been at work most of the week 'cos Isaac had a tummy bug, and I couldn't really afford more time out of the office.  But I just knew that I had to keep this appointment.  I am so pleased I did.

To my utter surprise (and delight) she gave me a beautiful quilt.  I had tears in my eyes when she told me the story behind the quilt. Deb is a fellow Christchurch blogger and will tell the story a whole lot better than I ever could, and her photos are gorgeous too.  Here's Deb's post.  I've just realised that the quilt has lots of the colours that I love in it, which is remarkable because Deb uses lots of bright happy colours and she often uses lots of yellows and oranges in her quilts (I don't really like yellow or orange).  Blue, red, pink, black and white, are definately my colours!

We had such a nice lunch - I really should try to get better at remembering to take photos - the cafe was so cosy and the food was delicious.  We talked and we talked.  We talked about blogging and Deb gave me a couple of helpful tips about my posts.  We talked about the earthquakes - Christchurch had another 5.2 today. Apparently we've had 41 earthquakes with a magnitude of 5.0 or greater since September 4 2010. And we talked about raising a child with special needs, negotiating the corridors of the Champion Centre, and dealing with the uncertainty that it all brings.

I feel blessed to have met such a beautiful, generous friend.

So Much to Process

I feel like I might have been MIA this past week.  There has been so much going on and I've just needed to take some time to process my thoughts and feelings.

Last week Isaac started his Early Intervention program at Champion Centre.  I had a function to attend after work that same day, and decided that I would drive home a different way to normal.  I had heard that one of the main one way streets through the central city red-zone had been reopened, so thought I'd go that way to see how different things were.  Work has been crazy busy - but I'll leave it at that as I'm trying to avoid putting work related info on my blog, due to the sensitive nature of my role in the company.  My weekend was not spent doing the things that I wanted/needed to.  And then yesterday was our (I mean Isaac's) second session at Champion Centre.

I'm not quite sure what I was expecting from Isaac's therapy sessions at Champion Centre, but the first one wasn't how I imagined it to be.  Part of my wave of emotional feelings came from thinking about what could have been with Isaac.  His disabilities could have been much more severe than they have shown themselves to be to date.  I don’t want to compare him with other children with disabilities but in a way I can't help it.  I know every child is an individual who progresses at their own pace, the ones who have special needs even more-so.  I'm relieved and thankful that Isaac can eat and drink, that he is able to communicate with us and can sit up on his own.  His independent walking is improving.

Amazing how we adapt to any situation we're put in, and how quickly we pick up the phrases associated with that situation.  I'm now talking about Isaac's independent walking rather than his walking.  Who knew that I'd want to be so specific about what I was referring to when I was talking about walking?

I was also thinking about what could have been if we hadn't had the complications in Isaac's birth that lead to his Cerebral Palsy.  Phil was probably the one who started this as he was talking about what Isaac will do for a job/career when he grows up.  Whether he will get married, or if his temperament will mean that he won't get to go out with the girl he wants because he is too nice and stands back when another boy likes her.  I hadn't gotten past thinking about how he will be when he gets to school.  Will he be in a regular class, or a special needs class, or a combination?  Is the after school and holiday program that Reuben attends going to be able to accommodate Isaac?

There were a few of the activities that Isaac did really well at and that had me wondering if he really should be at Champion Centre, or whether the other parents would wonder how we'd even managed to get in.  I know that it was done through the proper channels and that he wouldn't have been accepted if he didn't meet the criteria, but still....

I was a bit emotional after I took Isaac to preschool, but needs must and I had to go to work.  After the function that I needed to attend, I drove home via Madras St, which has only recently had it's red zone cordon lifted.  It was quite surreal driving up a road I've driven hundreds if not thousands of times before, but this time there were so many cleared sites I struggled to get my bearings, even though there were street signs all the way (and I am able to read maps!).  I drove past the sites of CTV building (which had the largest death toll in the quake), a couple of churches (one of which is now an artwork site covered with white chairs of all shapes and sizes), car dealership, backpackers and other accommodation, and there are so many that I couldn't tell you what used to be there.

The cordon is reducing and there are more buildings coming down all the time.  Recently the Crowne Plaza (aka Noah's hotel) has come down, and the demo crews have started on Westpac Building (formerly Canterbury Centre - which I used to work in years ago on the 5th floor, used to be able to go up to the 13th/top floor for Friday night staff dinner and enjoy the fabulous views of the city), Radio Network House, Price Waterhouse Building and Forsyth Barr House (originally Robert Jones House - I remember my first job was as a receptionist for the company who built this building - I used to find my way around the city when I first moved here based on what cranes were where.  That was in the late 1980s before the sharemarket downturn).  Now there are so many cranes around the city it is amazing.

So I'm going to skip over the work stuff, and the weekend.  Hmmm, this is turning into rather a long post, but I guess that's what happens when you have a weeks worth of writing to catch up on!

Yesterday, going to Champion Centre wasn't as intimidating, but I still need to ask about a few things, like is it okay to ask other parents about their children's disabilities?  In NICU, that was one of the rules, basically allow other families their privacy and don't look or ask questions.

Already the therapists have picked up on a couple of things that may be issues for Isaac.  Someone mentioned about Isaac overstuffing his mouth when he eats.  I just thought that he was being a typical boy enjoying his food, apparently not.  Seems that the sensors in his mouth may not be registering that he has food in his mouth until it is so full he struggles to get it eaten.  Another one said that she wants to check on his use of his hands.  Not quite sure what that's about, I thought he was doing ok, but maybe not.  And the PT tells me that he doesn't have much core strength or leg muscles.  Here was me thinking that he did have good core strength and strong leg muscles.

I know that I wanted to get Isaac the best treatment possible, and there will be more issues arise.  But it kind of did come as a surprise that they were able to see things so quickly.  Maybe it just means that they're good at what they do.

If you've reached the end of this post, thanks for hanging in there with me!

Mother's Day

I love that my boys still enjoy giving me kisses and cuddles, and even more-so when it's Mother's Day.  We stopped at the supermarket to get fresh bread for lunch on the way home from church.  Reuben had given Phil strict instructions to also get flowers and chocolate.  The instructions even included a reminder that the chocolate couldn't contain nuts (I found out at the end of last year I'm allergic to a variety of nuts).

This afternoon, I even got to have a wee snooze on the sofa, the sun streaming in the window, and after I woke up Reuben and I had more cuddles.  Isaac must have picked up on this when he awoke from his nap, because he kept on insisting on pickup cuddles, too.  We don't do those for Reuben much anymore, 'cos he's getting to be such a big boy and too heavy to lift for any length of time, and once you start, he won't let you finish.  But because Reuben asks for something, Isaac will too.  So today I enjoyed getting lots and lots of cuddles.

Five months old

Tomorrow is Isaac's first day at Champion Centre.  I'm looking forward to seeing what happens there, and the different kinds of therapy.  But at the same time, I'm a little apprehensive.  What if Isaac's disabilities are worse than we thought?  I'm noticing more and more things with his movements that could be Cerebral Palsy related.

I'm keeping a couple of scriptures in the forefront of my mind.

Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Philippians 4:6 "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."

Isaac was a very sick little boy - but God is a God of miracles

I kind of got side tracked the other day when I was talking about technology (the clothes peg thing). . . .so I'm going to finish that now.

With all the options for communicating with people, social media, etc it can get a little overwhelming, but at the same time it can be a lifeline.  Blogs, facebook, twitter, various email addresses (home, work, plus others - I keep a seperate one for my blogging), add to that cell phones (text, pxt, call) and regular phone lines.

A good friend of mine also has a special needs little boy.  He's been fighting for survival since their 20 week scan, and is now 2 years 7 months.  We worked together for a while, but remained friends after we both changed jobs.  We had really been looking forward to our babies being able to hang out and run around together.  Now that Isaac has been accepted into Champion Centre, we might have a better chance of catching up with each other - even if it is at therapy.  Last time we saw each other, it took months for our calendars to sync to enable us to do this, even though we only live five minutes around the road.  So we really rely on technology to keep in touch.

Isaac being transported for his MRI at 48 hours old



What's Around the Corner?

Sometimes I feel like the journey we've been on the past couple of years, is like trying to negotiate your way through a multi-level maze, and never quite knowing where you're going next or what you're going to discover lurking around the next corner.

This week I feel like I've reached a new place, a good place, but new and different.  It's kind of difficult to explain - I'm not sure if it's contentment, increase in my trust in the Lord, change in my medication, a lack of aftershocks or a combination of all the above.

I am amazed at how much improvement we have seen in Isaac in the month since he got his walker (I'm sitting here shaking my head in disbelief as I type).  His confidence has increased, as he is able to interact so much more easily with his peers at preschool.  He is so much more independent, and often leaves his walker behind throughout the day as he moves from one activity to another.  Often when I pick him up in the afternoon, we've got to go looking for his walker, sometimes it will be in the family corner, other times we've found it outside near the sandpit, and occassionally it is near the tables where they eat.

I knew that getting accepted into the Champion Centre was going to give Isaac a heap of therapy the he hasn't been exposed to until now.  The list of different therapies is quite impressive, and if you need other help, you get it.  They are cautious about releasing children from the program, which is reasuring - how a 9 month old with Cerebral Palsy can be released from 2/3 of his early intervention program, I am still trying to fathom.

Isaac at Reuben's rugby practice

We had a meeting with our Family Support worker Friday morning.  Isaac will be attending weekly sessions, and the team working with him will include: physiotherapist; speech language therapist; early intervention teacher; music specialist; play specialist; computer specialist; and an occupational therapist.  I'm picking that Isaac's favourite will be the music therapy. 

There are so many things that I'm looking forward to.  What his reaction will be to the therapists and the therapy itself?  How quickly will we see results?  I know, I'm jumping way ahead here, and shouldn't have unrealistic expectations.  Even though it's all new and kind of scary, it is very exciting, and a wonderful opportunity.

I think the thing I am most apprehensive about is the IP (individual plan).  We haven't done these up until now, and I guess the scary part is that Isaac's disabilities are going to become more, what's the right word, identifiable.  But we will also know exactly what areas he his struggling in.  Even though Reuben is 3 1/2 years older, it can be so easy to forget where he was at what point, and how Isaac compares.  Not that I want to compare, and I know that all children are different, but it would be good to get a gauge on how Isaac is developing and leaning.

Now that we're into the second school term, winter sport is getting underway.  Reuben has had two games of rugby and has been playing really well.  I'm glad that we made the decision to keep him in under 6 grade, instead of moving up to under 7s.  They've had two games, and Reuben is playing really well.  What a difference six months makes.  First game, Reuben scored two tries, then yesterday he scored three and was awarded player of the day.  His final try was a length of the field run.  I'm so proud of him.  He is enjoying playing in his new team and they are a great group of boys.

Reuben at the cross country

It was great to have the day off work on Friday, firstly so that we could have the meeting with Isaac's family support worker, but also because Reuben had his school cross country, so it was really good to be able to go and support him.  The thing that really impressed me was the spirit within the school community.  There were a lot of parents cheering their children on.  Children from year 7 and 8 classes were supporting the younger children, they would run around the course with them, encouraging them and also showing them where the course went.  If there were any children lagging behind, someone would join them and help them to keep going.  The special needs children were all included and supported.  I guess you had to be there, but it gave me a really good feeling about how inclusive and accepting the school is.  In addition to wanting our boys to go to that school, we wanted Reuben to be accepted on the ballot as this would give Isaac a better chance of getting in.  They have a great special education unit, which is an added benefit.  We don't know what needs Isaac will have by the time he turns 5, but it sure is reassuring to know that we have that option.

So does any of that make any sense?  Hopefully it does.  I'm really enjoying the boys at the moment, special family times, and just doing the little things.  They really are a blessing. 

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.

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 . . .

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.