Friday, 31 January 2014

I Love Swimming

Katelyn loves swimming. I have a water baby!



...and in a month...hopefully i'll be posting photo's of her swimming and floating on her own (with some floating assistant of course!!)...

The first school year

I better get a quick post in there before its the end of Katelyn's second school year!

For what can be a very daunting day for many, I knew inside that Katelyn would adjust to being dropped at school rather easily. She's is incredible with people and very easy and trusting of others. It helps that at school there is absolutely no shortage of love.

One on one time in action - she gets 45min a day one on one time, what a spoil!
Katelyn enjoyed school - and for the first year she progressed continually and didn't seem to hit any developmental plateau's like she had before - everything just slow and steady. She struggled with her health, and at a stage was only making it to school every odd week for a few days before she came down with something else.

Unfortunately after a bad chest infection in Autumn we knew we'd have to change our strategy - as the impact on our family having her sick every second week wasn't worth the few days she went to school.

She got healthy over the winter school holidays, and we kept her at home for most of the third term. What an impact it made having her well for 2 months. She flourished, was so happy - so it helped justify the decision! Her doctor started giving her immune boosting injections every 3 weeks, and ever since those settled in, we've had a relatively healthy ride. She was healthy for a wonderful family holiday at the beginning of spring and managed the full fourth term with only a few days off.



Happy at the Christmas concert! First time she's ever kept something on her head - amazing what school does!

Its been quite an adjustment having a girl at school 5 days a week (especially when school is not just down the road!). But the biggest adjustment was definitely for me. Learning to find our feet in amongst people who don't know us, don't know her and for many, don't know much about Down Syndrome - particularly as the year went on and the other kids developed so much around her. I feel it allowed us a process that we needed - allowing the thoughts, feelings and emotions to take us first to Christ, making us more united as parents and really just more totally in love with Katelyn than ever before.  

Saturday, 24 August 2013

2 beautiful years...

This day will always be a significant day for us. Our entire focus for the first 18 months of Katelyn's life was getting her to her Open Heart Surgery day. It took us what felt like an eternity to get there and when we got there it felt like life stopped for a while. I read back to those blog posts now, am reminded of the intensity of that time, but my overwhelming memory is the incredible grace that carried us through.

The operation and her slow and rocky recovery have affected her physical strength so much and we still continue the journey towards getting her walking. Its slow, but we are getting there. We continue to have pacemaker checkups every 6 months but her heart rhythm has come back on its own and her pacemaker is there 'in-case' its needed.

What an incredible 2 years its been. Despite her physical challenges [and loads of sickness in-between], the change in her has been phenomenal and its been wonderful watching her develop, communicate through signs, go to school and do big girl things.

It seems as though we started walking out from under the black clouds on this day two years ago and that even-though the grayness was hard for a while, now it feels like we are standing in the sun. I'm so incredibly proud of this girl and eternally thankful to God for his never-ending grace.


The two years in pics...

24 August 2011


7 days later she went back into theatre and had a permanent pacemaker put in.

1.5 months after coming out, she back into hospital to be re-opened and restitched up.

6 months later....

Still haven't really grown into my pacemaker much...but as cute as ever!
1 year later....

scars starting to get a bit better...and slowly filling out around my pacemaker



 18 months later...

18 months later I start to become more physical, doing weird and wonderful things...doing my own version of crawling

Pacemaker still very much there...but I'm getting much bigger anyway!

2 years later...
 Her scar isn't the greatest, but when you've been cut open three times while your wound was trying to heal, i can't really complain!

Now...just loads and loads of happiness and smiles!!! What a joy she is...



Dads reflections

My first little addition to my wife’s reflections....when Carol mentioned to me yesterday that Saturday (today) would be 2 years since our little fighter’s heart was fully repaired, I could not believe it. We then scrolled back and had a look at some photos of her during her surgery time, and oh my word, it really got us quite choked up – there were more machines, pipes & drains than Katelyn! Her little body was so lifeless during those ICU days. We both agreed that if she was to undergo that now that, we don’t know how we would handle it & we would be in a far worse space. It is so clear that this little munchkin of ours has not only come so far herself but she has edged her way deeper and deeper into our hearts and minds.

I am not going to lie, this journey to date has not been easy at all, and we have plenty of challenges and struggles with Katelyn but to say that she has crept into my heart & grown on me is an understatement. Something that we often say to each other is “Shame love, she has so many challenges...” - the thing is though, she is such a fighter, so brave and courageous, that against all odds, she continues to astound us. Katelyn does struggle to do the most simplest of things that we all take for granted, but this does not stop her repeatedly trying again. When most of us would have given up, she keeps going!

When I look back at that lifeless body in ICU and how she was when we eventually took her home, I realise how far she has come.....her communication via sign language & even the odd word, her eating, her swimming, her singing & dancing, her pulling herself up & her general getting about.....and she even sleeps a bit now.....J

I have been working from home for about a year now I think, so I have had the privilege of seeing my special girl quite a bit.....one thing that I always look forward to is when she wakes up from her afternoon sleep & before heading down the passage to Barney......or lunch......she pops her head around the corner into my office just to say hello.......actually probably just to make sure that I am working! The joy of seeing that smiley face every day is really a blessing!

As coined while she was in hospital, Katelyn will always be #ourlittlefighter – she has an incredible spirit & such tenacity; I have learned so much from her already and look forward to all she has teach me in the future!

Tuesday, 19 February 2013

Reflections

I recently read a book sent to me from a family friend in America. A good and perfect gift - Amy Becker. It was very surreal reading a story which almost feels so similar to our journey in so many ways - their Christian faith, their firstborn, their fears and sensitivities being a special needs parent.  

Subsequently, I read this blog post Reflections - posing questions around how to deal with the ups and downs, emotions, feelings.

Reading about other people's journeys helps me to reflect on ours to date, to grapple with emotions, connect and get a glimpse into the lives of those who are walking similar roads.All this a gentle reminder - to take time to reflect, to allow myself to be where I find myself and to remember that I'm not alone. 

Wednesday, 13 February 2013

Development Cycles

I have written before about the interesting development cycles that are associated with Down Syndrome. I don't think you'll find it in any medical papers (or maybe I just haven't read enough!), but most people you speak to tell you about it and most parents I've spoken to have experienced them. Maybe its only something that's associated with the first few years...will be interesting to find out.

Instead of a continually escalating development cycle like you would find in a normal child, who's always learning something new whether it be around physical, fine motor, language or social skills. The Down Syndrome cycles seem to follow long 'plateau' periods and then sudden 'development' periods. We were in a plateau period for about 6 months last year. It's incredible challenging and frustrating. Not seeing any changes, nothing seeming to be improving...but it also makes a development period even more rewarding. We seem to have been on a developing cycles for the past 2 months or so.

Katelyn has picked up so many new signs, is communicating using sign-language (as opposed to just signing a few animals) , seems to be understanding so much more...and...is starting to stand a lot! Its a wonderful period to be in - so rewarding to suddenly see things changing.

Katelyn just loves it when I play the piano

She's so enjoying time on her trike. Its great that there's finally a bike of sorts that does work for her.

Post swim cuddles



Friday, 26 October 2012

Need more stimulation mom...

She is growing up. Quickly. 

I totally under-estimate her, I am realising slowly that she's not a baby and doesn't want to only play with rattles! I'm having to get my act into gear and treating her like a child who can comprehend things, pick up things, adapt to things, play with sophisticated 'toddler' toys. Its been a long time coming - and maybe with the busy-ness of life, I've known this for a good few months but haven't really put anything into action. 

Because she's not physically changing like a normal child would and would naturally move towards new and different toys, exploring things that she wants to explore...the 'watching her grow up approach' - I'm having to 'guess' along the way of what she would be doing and trying to make where her mind is going come alive for her. Attempting it..should I say! 

But her friends are teaching her (and me!) along the way. So its time to find her a bike / trike / something that moves that will work, to find some 'clever', real-life scenario toys, get her drawing, play-doughing, talking (ok babbling more), learning animals, signing more..

Lets hope some fun 'playing' pictures to follow :)