Preschool Challenges

A friend of mine, who is studying Early Childhood Education, sent me the following message:

I'd like to tap into your experience and expertise in having children with what is now called "diverse needs." For my studies I'm writing a paper on inclusive practice in early childhood education. I was wondering if I could ask you to reply to me and tell me what you've found to be challenging or beneficial in your experiences with your little ones in preschool.

Any info you can give me would be great! Even if it's just a quick reply, I would be appreciative of any insight you can share with me!!

This got me thinking, and her a more detailed response than I think she was anticipating!  It's also given me the content for another post...

We had issues at the very beginning with Isaac's enrollment, due to him having had seizures when he was in the NICU. I went back to work when he was just over 4 months old. Was very upsetting, since they knew exactly what had been going on since the day of his birth, and Reuben had been there for the previous 2 years. Anyway Isaac hadn't had a seizure since the NICU, but they had to sort out their procedures for what to do in the event that he did have a seizure.

Fire engine at Kids Karnival

About a month after he started he had a cold, and started to refuse his bottle. This was expressed milk, so exactly what he was used to. I always joked about my boys having Tui on tap! (the beer..). It got to the point where he was going for his full 6 hours without any food/fluids. In the end the SLT at the hospital suggested using a sippy cup, because she didn't want him to continue getting feed via a syringe (I told preschool to get the food into him any way they could and I suggested a syringe, because I knew he was fine taking his meds via a syringe).

Apart from that, Under2s at preschool was fairly good.

Fishing from the balance board - making great progress!

 I think that I really noticed the differences, etc when he moved through to the preschool. He was moving about by bum shuffling and crawling. Which in itself wasn't too big of a problem, but when he was out in the playground, the teachers would get him to head instead about 5 or 10 mins before kai time, etc so that he had time to get in there before all the other kids came in.

I'm trying to make this as useful as I can for you, but I think it's going to make me cry. I'll try to keep it to preschool, because there were downfalls in early intervention, and it was only because I kept pushing and advocating for him that he finally got the additional support of his walking frame.

And the rolling walkie thingie...

Now that he is walking independently (Yay, Isaac!!!!) I'm noticing other things. Although cognitively he is at or ahead of his age, physically he is still struggling. The other week they had some mini balance beams (that's the best way I know how to describe them) in the classroom, and had the children running and jumping over these. For Isaac to step over these by himself would be a struggle. He can manage the tracks of a ranchslider, or small steps without having to hold on. But these were a good 10cm off the floor, probably 10cm wide, and in the middle of the room with no support for him to hold on to.

Another day they had the obstacle course outside. Isaac is a determined wee boy, and I would consider myself a fairly tough mum, in that I get him to do as much as possible for himself. But when there are things like obstacle courses and the like, I'm not sure what kind of affect it has on Isaac and his self confidence. He knows that he has a disability, and that he's not the same as other kids his age.

When he was about 18 months old there was an article on Campbell live one night, about a baby that had been in NICU, intubated, etc. And Phil said to Isaac, that he used to be sick like that when he was a little baby, but he's not sick any more. Isaac, with sad puppy dog eyes, said "But I still sick, I fall down all the time." It made my heart break. But it also told us that he knew what was going on, and that he wasn't the same as other kids.

Now that Isaac has turned three, he will qualify for an ESW at preschool, one morning/afternoon per week. Just waiting for that to get sorted, hopefully not much longer.

The current challenge is toilet training. I know this can be a challenge for lots of parents, but when the boy is wobbly on his feet, this provides added challenges. Guess I'm going to need to work more with his therapists, to get the information and strategies, and then pass those on to preschool.

___________________________

Isaac's ESW (Education Support Worker) starts on Tuesday, I'm really excited as she is someone who spent time working with Isaac last year.  The ESW is assigned by Champion Centre and reports back to Isaac's therapists and us on a regular basis.

Champion Centre has to fund raise large amounts of money each year to continue providing the fabulous service that they do.  Last weekend was their annual fair where my boys had heaps of fun: ice creams, bouncy castle, face painting.  Afterwards, I had heaps of fun playing with photos editing apps on my phone.

same photo

different looks

layered looks

all at the click of a couple of buttons

Christmas/Summer Holidays 2012/13

Christmas is always a fun time when you have little ones.  The one just gone was no exception.

We had a family gathering at our place with Phil's family, then I took the boys down to Mum's while Phil got organised for our camping holiday.

I made a big decision, and decided that Isaac didn't need to take his walking frame.  So Phil packed the van, and we headed down to Timaru.  There is a carnival at the Bay every year, including an amazing fireworks display on new years eve.

We had a great area for camping, away from a lot of the traffic.  Uneven ground and shingle drvieways, were a challenge for Isaac, but by the end of the week, he had mastered them.  Reuben mastered his challenge of riding his bike.  I'm so proud of both boys.

A friend of Reuben's camped there for a couple of nights, and the boys were all out playing spotlight on new years eve before we went down to the carnival.  Both Reuben and Isaac had new flashing shoes, so we were able to see exactly where they were during the game.

A lovely relaxing time was had by all!

Momentous Occasions 1,2,3,4

I was meant to write this next post on Christmas and our summer holiday.  Promise, it is coming, but I have way more exciting things to share about today!

Last week was one featuring numerous momentous occasions.

Isaac hadn't used his walking frame since before Christmas, so we gave it back to the Physio!  This means that Isaac is officially walking independently.  It was a surprisingly emotional moment, and I was soooo proud of my little guy.  I guess it felt like the end of an era, with unimaginable possibilities on the horizon.

Feeding a friendly duck on the front lawn

Later in the week, we were invited to speak at a NICU staff training meeting.  It was great to see some familiar faces from the time that Isaac spent in the unit. And to have Isaac show off his walking and speaking skills.  Some of them remembered how sick he had been, and were almost stunned at how well he is doing.  It's also quite amazing the extra bits of information you pick up when talking to people.  A year ago, I found out that Isaac had been one of the longest resuscitation that had been performed in the NICU.  This time, I found out that a contributing factor to Isaac's outcome was because one of the neo-natal consultants was present in theatre when he was born.  He was able to get top of the line care immediately after his birth.  She had to use the oxygen at a much higher pressure than is normally used, which did compromise his lungs.

Check out my new glasses

Yep, I'm a showoff!

Next up was getting Isaac glasses.  He's had a slight squint (cross-eyed).  We'd been to the ophthalmology department at the hospital a number of times, and finally before Christmas they decided that he needed to see the specialist.  Upon seeing the specialist in the new year, he recommended that we get glasses for Isaac with the intention that it would correct the squint.  It was really easy to sell him on the idea of wearing glasses, as I wear my a lot of the time, so Isaac was quite happy to be just like mummy.

Bubbles and water wars

And last but not least, Isaac's third birthday.  We celebrated with a "bubble" party and had a mini water theme park set up on our front lawn.  It makes a nice change, to have a birthday party in the mild of summer - Reuben's birthday is middle of winter, so we always have to plan for an indoor activity.  We had a great time with friends and family celebrating with us.  It's amazing to think what we've been through in the past 3 years and what a blessing our boys are.

Watch out 2013, here we come

It's hard to believe that 2013 is here already.  I feel like I have been incredibly slack, reading hardly any blogs over the last couple of months, and writing no posts of my own.

In my defense, there has been a lot of things going on over the past few months. I was struggling with the necessary change in mindset between working in a high performance sport environment, and then being at home with a child who has physical disabilities. The company that I work for was in the process of restructuring.  I decided, since I'd been there for 5 years, that it was time to look at moving on.  After numerous applications and interviews, I secured a position as financial administrator at the Cochlear Implant clinic.  I've been there for a couple of months now, it's been a steep learning curve, but I'm really enjoying it and am slowly getting my head around everything that this job entails.

We've been having problems with Reuben's behaviour over the past few months.  I was getting really bad - hitting, kicking, biting, swearing, name calling, throwing things, etc.  I was finally able to get some help to put some strategies in place to help me deal with and diffuse the behaviour and the anger.  A lot of kids in Christchurch have been having problems due to the ongoing stress from the earthquakes.  I wan't sure if that was what caused Reuben's problems, or if it was because he was a 6 year old boy, or because he had a younger brother, or if it was because he had a sibling with disabilities.  Probably a combination of all of the above in varying degrees at any one time.

I went to a session at school that was put on with clinical psychologists talking about what to do with kids that have been suffering from ongoing stress.  It was an okay session, but I was pretty down by the end of the session,  To be honest, if it was just the earthquakes I could handle that because I know that they're not going to be forever.  But it really highlighted to me that Isaac's disability was going to be ongoing, like for the rest of his life.  Not quite what I was hoping to get out of the evening.

I've been talking with various people who read my blog, and it has been really encouraging to hear some of their comments.  One couple in particular, we met at the mall one weekend.  They said that it was great how not only did we get Isaac out and about, but also that we were open with other people about the experience we were going through.  Now, any of you who are reading this at the moment who have special kiddies, will know that as a blogger you don't put everything you're going through in your posts.  But I'm pleased that I'm able to give people a bit of a glimpse into our Tutti Frutti life.

One of the additional benefits that I've received from having Isaac at Champion Centre, is the connection that I've been able to make with other mums.  I never realised how isolated I was until I hooked up with a group of champion mums (past and present) who go out to dinner and socialise once every six weeks or so.  It's great being able to share experiences and concerns with others who are on the same page and a great excuse for a night out.

What's Isaac been up to, I hear you ask.  Well, let me tell you just how fabo this little guy is! Each week at his therapy sessions he works really hard.  So hard in fact that he can hardly keep his eyes open on the two block drive from Champion centre to preschool.  The therapists and teachers all say how much of a pleasure it is to see him each week.  He has worked so hard and progressed so well, that he is moving to a different session when classes resume after the summer break.  This year he will be going fortnightly instead of weekly.  There's some down sides about that - not being with friends and teachers that we know and no computer sessions :( But on the plus side - meeting new friends, new challenges, new teachers.

We had some new front steps installed.  The rise was too deep for Isaac and he struggled to walk up them by himself.  Now, although they come out a lot further, each step isn't as deep and with that combined with the handrail that got installed at the same time, he can now walk up and down the front steps by himself.  It also means that he can go out and play with Reuben or the neighbours without the need for me to stop what I'm doing to help him down.

Mid December Isaac had an appointment with the Paediatric Neurologist.  He'd been referred by his neonatal consultant, who had also said that she'd be passing him on to the developmental paediatricians. When we met with the neurologist, he said to us that since we'd been referred to him, there wasn't much point in seeing the developmental paediatricians too.  So he would take over managing Isaac's case.  Sounds like a good plan to me.

Over the last few months, Isaac has been relying on his walker less and less.  The week before Christmas, I decided that he didn't need to take it to preschool.  Most of the time he's dump it anyway, and we'd have to go looking for it before we went home.  Going to the mall has started to be easier (and quicker) if he holds my hand, or walks independently if there aren't many people around.  Result - he hasn't touched his walker in  4 weeks!

Bye for now, I'll be back soon with more on Christmas and our summer holiday...

I'm baaaack!

No, I didn't drop off the face of the earth, I've been finding things a bit tough going recently, hence the lack of posts.  A dear friend told me a couple of weeks ago how long it had been since my last post....
Starting with the anniversary of my Dad's passing.

We've been having some behavioural issues with Reuben.  He's fine at school and his after school programme.  But at home, well that's another story.  Hitting, kicking, biting, throwing things, breaking things.  Poor wee Isaac gets terrified when Reuben gets like that.  I get bruised.  But I'm not giving in, I will continue to discipline him, and not allow him to behave with such disrespect! Mum has spoken, you have been warned!

Work has been difficult, restructuring which is going to take a total of about six months to complete, in addition to other things which I am unable to talk about here.  So I've started having a bit of a look around to see what other opportunities are around.

After I got over the flu, I've ended up with the hundred day cough which seems to be doing the rounds in Canterbury at the moment.

On a positive note, we've hit spring big time.  And I've started getting motivated to do some baking with the boys.  Been doing something each week, and because we've got a convection microwave, I don't have feel guilty about heating the whole oven just to cook/bake one thing.

I have missed international Cerebral Palsy day which was also the second anniversary of the first of the earthquakes - September 4th.  We've had over 12000 earthquakes in the last two years.  But we did just have a stretch of 10 days where there were none at all - it's a bit surreal that a statistic like that is a milestone!

Isaac has been a star.  He's making fantastic progress with his walking.  He is only using it at preschool intermittently, and occasionally at the mall.  His motor control for feeding is improving.  He now has a special raised chair that he uses at the table.  I was initially a little wary, thinking that it would create more mess, but actually it's been okay.  Balance is getting so much better and the exercises that he's doing at champion centre have lead to him being able to jump off his chair (when I hold his hands) knees bent and everything.  Yeah, I'm a proud Mama.

The next few weeks are going to be hectic. Why is it that all the apppointments end up happening within a couple of weeks of each other? Isaac has his first IP this week.  I'm kind of nervous about it, but at the same time quite excited.  He has come such a long way in such a short time.  Optometrist appointment which we've had to wait 3 months for.  Appointment with Paediatrician - I think she is going to be impressed with our little guy. OT home safety assessment, and Lifelinks assessment (my best advice for people is to get into the system as soon as you can, that way you can access as much funding, etc as possible). Add in some interviews, a couple of staff leaving lunches, pamper day, Silver Ferns test.

We were really fortunate to be able to get our house insulated with batts (under floor and ceiling). It has made such a difference and although we've past the worst of winter and headed into spring, I think that we're going to notice a difference through summer and into next winter - YAY for saving money on Pellets for the pellet burner!

If anyone knows how to do a circular or oval crop, please let me know.  It's something that I haven't had time to figure out - or maybe I don't have the correct software.  We're not allowed to put photos of champion centre staff on the net, so I've improvised.

A group a mum's from champion centre have started getting together for dinner once every month or two.  Last time was the first time that I'd been, but I figured if I don't do it now, I'll wimp out later too.  I got my friend Cushla (also a Champion Mum) to come with me.  We had a great time meeting new people and eating great food.  Some of the mum's are graduates, so they know what we're going through. It is crazy how ordinary people end up going through an extraordinary journey for their child.  

I have been amazed a the courage of parents I have met online from around the world.  There are a couple of people from the UK and Australia who are raising awareness of the newborn cooling which Isaac had at birth.  I watched a story on tv tonight about an amazing father with a child who has cerebral palsy, it was really inspiring.

Until next time, and I promise that it won't be so long

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. 

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 . . .

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).

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.

Where to Start?

Where to start?  I've been contemplating writing a blog for a while now.  Finally I decided, why not?  The worst that can happen is that no-one will read it.  Who knows what is going to end up on my posts, but fit's going to make for an interesting journey.

I love my boys - all 3 of them.  You know it's weird, but I never thought that I'd be a good Mum.  With everything that we've been through over the past few years, I think that I have changed my mind!

Reuben was born in June 2006, when we were living in Napier.   My Dad, who lived in Ashburton, was diagnosed with colon cancer about a month before I got pregnant.  He passed away, when Reuben was 5 weeks old.  The really sad things is that Dad never got the  chance to meet his first grandson.

As a baby, Reuben suffered from reflux, colic, and urinary tract infections.  Not exactly plain sailing for a new mum with no family around for support.  By the time he was 6 months old, Reuben had been to 2 funerals, a wedding, a 21st and had travelled as far north as Auckland's North Shore, and as far south as Timaru.  We even took him camping in the Coromandel for our Christmas holidays.  He was a fairly well travelled little man.

In March 2007, we decided to move back to Christchurch.  Most of our family was there
I've found out that somehow the rest of my post has been deleted, arrgh! Even though it posted ok in the beginning :-(
Here's some of the rest of the story...

Having had a normal healthy pregnancy, we were completely unaware of what was about to happen when baby Isaac was born.  It was Wednesday 27 January 2010, 1 week past due date and the first that we knew that there were any problems, was during a contraction when his left foot appeared.  I have written this account merely to give you the opportunity to find out in more detail what we have been through.

I had been having middle contractions during the morning, and as my midwife was at the hospital with another client, I was seen by the locum midwife (whom I had seen a couple of times during my pregnancy) for a scheduled appointment, just after lunch and everything was fine.  Later in the afternoon, the contractions intensified, and I felt uneasy about something, so called her back.  I had text Phil, to ask him to pick Reuben up from preschool on his way home from work.  But a half hour later phoned him and said for him to come straight home.  I phoned preschool to let them know that someone would be picking Reuben up, but didn’t know who or at what time.  The midwife and Phil arrived at our place within a short time of each other.  It was at this point that Isaac’s left foot presented.

As soon as we realised that it was a foot, Phil was instructed to phone for an ambulance. The midwife called for backup from another midwife who was just around the corner.  Poor Phil, he was getting instructions from left, right and centre.  Bring gear in from midwife’s car, phone my sister to pick up Reuben, get Reuben’s car seat and back pack out for my sister, hold my hand during another contraction, etc.  The ambulance arrived, but parked on the street, and the crew carried their gear up the long driveway into the house.  When it was established that we needed to get to hospital, they were walking back to the ambulance to get the gurney to bring up and take me out, but the other midwife went out and told them to get the ambulance up the driveway pronto (or words to that effect).  I was able to walk out and climb into the ambulance between contractions.

As we were about to pull out of the driveway, the driver and midwife were discussing whether we needed to be travelling with lights and sirens (apparently, they are only allowed to travel with lights and sirens in life and death situations).  So, in peak hour traffic (5:10pm), it took 12 minutes for the ambulance to get from our home in Parklands to Christchurch Women’s Hospital (CWH) with lights and sirens.  When we arrived at the hospital there was still only one foot out, but by the time that we got up to the operating theatre, both feet were out.  This meant that they were no longer able to perform a caesarean and the baby had to be delivered naturally.

There was a myriad of people in theatre including Consultant Obstetrician and Registrar, Anaesthetist, Neonatal staff, plus Midwives.  Within 5 minutes, we got to the point where baby’s sacrum had been delivered (the lower part of the spine where the tail bone is – basically his bum was out), but he got stuck.  It is at this point that the cord would have been compressed, and we don’t know how much oxygen was flowing through.  After a large episiotomy was performed, and things were still not progressing, the decision was made for a general anaesthetic to be administered so that a forceps extraction could be done.  However, there was difficulty with the general anaesthetic, and problems intubating and getting me stabilised ready to proceed further.   Another Anaesthetist was called in to help at this time, as well as the Consultant Neonatalogist and Consultant Anaesthetist.

12 minutes later, at 5:43pm, Isaac William Brewster was born, weighing 4.140kg (9lb2oz).  He was pale and floppy and was immediately intubated.  Then he was taken to Neonatal ICU Level 3 in a critical condition, where he was put on a ventilator but also required CPR and several doses of adrenaline.

In the interim, Phil had arrived at the hospital and was waiting outside the operating theatre.  When the baby was born, Phil was told that they didn’t know how long he had to live; it may be just minutes or as much as a few hours.

Isaac was diagnosed with severe Hypoxic Ischemic Encephalopathy (HIE) grade 3 and placed on the criticool machine, where he was kept in a hypothermic state (33.5^oC compared with normal temp of 36.5 ^oC) for 72 hours in an attempt to reduce the impact of the brain damage which he suffered.  This is a new treatment protocol which has only been around for a couple of years and was researched here in NZ.  Up to 60% of babies, who suffer this level of insult, do not survive and those who do are often severely disabled, can be deaf or blind, and require wheelchair and other support, as well as full time care for feeding.

He was also placed on a brainz monitor that has 4 small probes inserted just under the skin on the head, to monitor brain activity and seizures.  A nasogastric tube was inserted for feeding, catheter and two other umbilical lines for blood pressure monitoring and fluids, plus a probe on his foot to measure oxygen saturation, pulse and heart rate.  He required medication to keep his blood pressure stable, anticonvulsants for seizures, as well as antibiotics and various nutritional inputs.

The next day (Thursday), we decided that we needed to name our wee man, as we hadn’t done so up until that point in time.  When we told Reuben that we were going to call the baby Isaac (meaning “he will laugh”), Reuben looked like he was ready to burst into tears and told us that the baby wouldn’t like that name.  So we told Reuben that he could the baby Zac, which was much more to his liking.  However, now, if anyone refers to Isaac within Reuben’s hearing, they will be “corrected”.

That night his breathing had improved to the point where the doctors extubated him and he was on nasal prong oxygen.  However after 3 hours he required reintubation and support from the ventilator.

At 48 hours, Isaac had an MRI scan to determine the distribution and severity of the brain damage.  Just transporting him there and back was a logistical hurdle - all of his tubes etc had to be put on “extension leads” because of course there can be no metal in the MRI machine, and he was kept “on ice” so that his body temperature would remain low for the two hours that he was not on the cooling machine.

When the results of the MRI came back, they showed some brain damage (focal alterations in the head of the left caudate nucleus and more posteriorly in the basal ganglia).  But brain damage can work a bit like a bruise, where all of the impact is not initially visible, and as the results weren’t as severe as anticipated, he was to be rescanned at approximately day 7.

His body was slowly warmed back to normal temperature from 72 hours.  On February 2, he was removed from the brainz monitor.  We also got our first cuddle that day, what an incredible feeling that was.  The following day, he was taken off the ventilator and breathing on his own with nasal prong oxygen.  As he did not have any gag reflex and was not swallowing, regular suctioning was required to remove secretions from his mouth.

Day by day we noticed small improvements in Isaac.  The next day he was beginning to cough to clear his mouth, but still required some suctioning.  He was feeding two hourly via the nasogastric tube.  The follow up MRI scan showed no progression of the initial impact on the brain.  So now it’s a case of wait and see what Isaac is and isn’t able to do.

Gradually Isaac’s muscle tone is improving, and he is becoming more alert.  Isaac passed his newborn hearing test, but will be followed up due to the nature of his birth.  He is feeding less often with increasing volumes.  By 13 February the nasal prong oxygen is removed and he is breathing completely on his own.  Three days later, he has begun to breastfeed.

At 3 weeks 5 days, on Mum’s birthday, Isaac is discharged from hospital!  What a milestone, and he has completely amazed the hospital staff in the process.  Although we still have a long road ahead, the long term prognosis is nowhere near as dire as initially expected.  Each milestone will be eagerly, yet apprehensively, awaited.  We continue to see improvements in him, and if you didn’t know his history, you couldn’t tell by looking at him, what a traumatic start he had to life.  Isaac really is a wee miracle.