Replacement pacemaker surgery

This special girl of mine is due to have her first pacemaker replacement surgery this coming Monday (18 June 2018).

I remember the day of her major heart repair surgery at 18 months old - the day we heard that unfortunately she will be reliant on a pacemaker for the rest of her life.

The implantation of her current pacemaker had a shakey start to life with quite a few complications around the site healing - and two months later she went back into theatre to have it all sown up and sorted out properly. Since then, its been a visible box that lies just under her rib cage. Its pretty unsightly and doesn't add much favour to her already visibly scarred chest. I'll be getting some before and after pics together!!

But its 7 years later and technology advances...and she's alot bigger. So i'm trusting that the device they implant now is much smaller and lasts longer! 

Being much older, she's pretty anxious and needy in hospital, so those realities of a heart related procedure with her just being much more needy don't sit easy with me [never mind the four month old that's around too]. Baby Nicola will be joining us too during our time in hospital - though dad will spend the night with her and I"ll spend the night at home with the other two girls.

Trusting God for a smooth procedure and experience...

Potty Training & Down Syndrome

Oh how I was dreading it. Katelyn was turning 5 and she hadn't even been walking for 6 months - I kept on hearing potty training, seeing potty training but I just couldn't face it.
Then we heard she required open heart surgery again. Yet another pit in my stomach and another delay.

Eventually, after the heart surgery and as the summer was starting, I decided it should be time. I read blogs, bought books, read LOTS about potty training and special needs, added myself to every facebook support group I could find.

Then, 8 months later, as I was meant to get going, my father was in hospital, my youngest keeping me up all night, still trying to handle work...I had zero energy for it all. I thank God for fabulous friends of ours who gave us a little potty stool that had worked well for them. The only energy I had was to put it in the bathroom and leave it.


On days when I was at home and had capacity, I just left her with nothing on and tried to take her to the potty as much as possible. She started becoming quite difficult and resistant though. The 'Intense weekend / few days plan' that I thought I would go for was suddenly seeming not so ideal, as she became more determined not to do what I said.

Over the course of the summer holidays [about 4 weeks], I tried my best to just NOT put a nappy on [besides nights of course]. I'd try my hardest to catch her before she did anything, or start learning her facial expressions. There were many accidents, but while we were on holiday, i decided to just let it go.

After she had settled in at school for the year, I asked her teacher if she'd be open to her coming with no nappy to school. They were very supportive, but concerned that it would be slightly impractical of course.

I am aware that this is not how it goes down for everyone, but there was something in the 'letting it happen' thing that just worked, it was like there was something that just clicked for her that she figured it out, as opposed to me forcing her into a routine and a habit.

I'm so grateful. Its a reminder that God knows what we need. I have NOT had the energy for potty training, life has been overly full these past 8 months and look back with huge gratitude to God for his faithfulness.

To my daughter on World Down Syndrome Day

I have no doubt that when you’re older you’ll think this day is all about you. Right now it seems you think the world revolves around you J But this day is about so much more than you – it’s about me, your father, your family that love you so and everyone else that your life touches.

Down Syndrome has taught me to open my eyes wider, to accept everyone as valued and purpose-filled.

We know that Down Syndrome means some challenging realities for us and you, but we also know that you are an incredible blessing to us and we are completely madly in love with you [how did you get us so wrapped around your little finger???]. I was nervous to love you when I heard of your diagnosis yet now I am fiercely and proudly in love with you.

So…it’s almost your birthday…that day is all about you – but today is celebrating all that Down Syndrome has brought to me and many others.

Sisters

Katelyn is a big sister. Little sister Jessica, is having to learn really quickly how to handle her overly enthusiastic, come overly emotional older sister prodding, poking, pulling...I'll leave it there!

early days...

As I watch them together, I pray for a very special relationship. Its been a real answer to prayer having another child. I hold this little one each day with an extra squeeze acknowledging this incredible gift we've been given. Then I hold Katelyn with an even bigger squeeze - wishing I could talk things through with her, chat to her in detail about what Jessica is doing, asking her what she's thinking - but instead, we have lots of deep hugs and simple words and I'm trusting that that is just what she needs right now.  

so sweet getting onto her level

Katelyns' new way of smiling ;)

I think we can say it....she's walking!!!

I cannot describe the joy it brings me to see my little girl taking steps around the house.I think she's taking enough steps for me to officially call her walking!!!

After almost 4.5 years, to now hear footsteps around, to see her standing in the doorway waving goodbye to me, to suddenly have her at my side - has to be one of the most wonderfully rewarding milestones we have reached with her. 

There are lots of aspects and challenges around her walking still - but that will not steal my excitement or make me less proud. The delight on her face in her new found freedom brings deep joy to my heart!

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.