JUST A BEAUTIFUL PIC

ZZZzzz - AFTER A BUSY WEEK...

This pic was snapped by my sneaky mum. She always teases me for being the messiest sleeper she has known - arms and legs hanging out all over the place. On this morning Kaitlin and I were sleeping exactly the same, side by side. Like mother like daughter!

COUCH POTATO TIME

Kaitlin is having a wee love affair with Elmo at the moment. Well a big one actually heehee. She's looking pretty calm in these photos but he usually gets a delighted response and all kinds of crazy talking and expressions when she chills out and watches him on DVD. Here she is just enjoying her Elmo.

SWIMMING LESSONS

Kaitlin and I went to her first swimming lesson with Conductive Ed this week. Wow! A big pool as warm as a bath. She took to it really well, smiling when she got splashed by the other kids. No one went easy on her because she is little which is good. Kaitlin did Ring-a-rosie, Humpty Dumpty and other activities with the bigger kids with myself and Ange helping her with the actions. She held on to a floatie and lay supported on her stomach and practised kicking around the pool. She lifted her head up herself for a while to keep it out of the water! So cool to see and really good excercise. She did lots of kicking practise in different positions, good to relax those legs muscles and get a good range of motion going. It was a day of firsts with her having her first ever shower as well. She thought it was great. The swimming nappies that Granny sent for her birthday were perfect, thanks Granny!X

SUNNY DAYS ARE HERE!

We had the most gorgeous, warm sunny weather on Labour Day.  The Cargills brought their waffle machine around and we all had breakfast outside.  Kaitlin thought it was pretty cool, she sat in in her chair and had a yoghurt, then was entertained by Janelle for a while, played peeka-boo with a big red scarf and then practised standing with Frith,  Just an awesome day.

IT TAKES A VILLAGE TO RAISE A CHILD...

Ain't that the truth!!! I know other mothers with special needs kids will relate. For everyone else - Holy Moley! Usually children begin to explore the world themselves and your interactions become two way. They show an interest in the world around them and as they begin to explore, you feed off their curiosity, and you see the world through fresh eyes and from their interest you can begin to feel a wonder and delight about the simple things in life yourself - as messy and mundane as it may sometimes be to an adult. When you have a child with severe cerebral palsy, things are a bit different. With Kaitlin's "type" it can be very different. She has low tone, which means it takes extreme effort for her to move at all, let alone direct those movements, and then add the mental stuff as well. She is using all of her effort just to try and lift her head up, keep her eyes straight, and do what she needs to with her hands - let alone have cognitive thoughts happening there as well. Very slowly, my beautiful girl is getting there. What is really helping is the input from our extended family. Kaitlin's disability means that because she is concentrating so hard just to keep her body and eyes straight, she has little "apparant" ability to concentrate on what is going on around her. Because of this it is easy to assume she does not understand what is going on around her and "get it". She so does!!!! We have an amazing extended family - to name you all would take ages but you know who you are. To all of you - even if it has been difficult, and you certainly haven't made it obvious to me, Kaitlin is Just Kaitlin. All of you just treat her as one of the gang. You read, sing, play, chat, walk, and teach her bad habits. I don't know, I just see her as my baby and don't see much that different but other people seem to - Bugga! -

It is really exhausting as a mum to be doing ALL of the stimulation when your child seems bored and disinterested, It's not that kaitlin isn't enjoying stuff but because it takes huge effort for her to even show emotion, it can feel like you are flogging a dead horse at times and as a mummy you feel really defeated and uninspired. This is where family come in. Whether it is her great nanna Betty singing, cuddling and doing healings or loaning me books that keep me sane, cousin Elise researching, Nanni Heather reading and singing, poppa j and nanni Wend reading, ear nibbling or propping me up, Helen Tom and kids loving and playing or the Willies making medical appointments and pushing her in the stroller or the McD's buying gorgeous clothes and writing cool letters, uncle G's cuddles, Grandad Chris giving kisses and buying Elmo DVDS and sumptuous bean bags, the Russells and Elleys for all of their support, love, gifts and photos, Nana Russell and Grandad Ray for their unwavering love, support, inspiration and books and dvds, Granny and Grandad teaching about farm life and how to be great people, love from all the Johnstone aunties, uncles and cousins, esp Sammy and Ashley, the open-hearted and accepting love from auntie Heather in Edendale, the stubborness and feistiness she gets from her Daddy and his unwavery faith in her that has helped her survive. This is all what makes Kaitlin Johnstone the little lady that she is and in case I haven't said it lately,I thank you all so much. I have been really slack with the camera lately but here are some photos of KJ with her Great Nan Betty and Her Nanni Heather. You guys have made me the mum I am and Kaitlin the little girl she is and with your guidance and love I feel like Kaitlin can achieve anything. I love you.

SHEEPIE

No self respecting girl from a line of proud New Zealand sheep farmers would not own her own sheepie. And thanks to Auntie Frith and Uncle Richie (don't even get me started on how MAD Kaitlin is about Richie!) the wee KJ now has her very own sheepskin to cuddle, dribble, roll and ni-nights on. Here are some cute pics of Kaitlin and Auntie Frith.

THOUGHTS ABOUT KAITLIN TURNING 2

If any one had told me what was in store for us this time two years ago I think I would have had a meltdown, (oh that's right I DID have a few, lol!!!)

This time two years ago, Wayne and I were engaged, had a one week old baby who was battling for her life on a ventilator in an incubator, and all the excitement, hope and faith that goes with beginning a new phase of your life as parents and a family! There was a healthy dose of fear mixed in there as well as Kaitlin's chances of survival were 10-20%, and there was a chance that if she did survive, she may have learning problems or disability. When you begin the micro-preemie journey, your first focus is survival, it isn't until the life-threatening side of things passes that your attention then turns to "will she be normal?"

Despite all of this I still remember the first time I wrote in her little diary we got to document her journey and we got to sign off "Mum and Dad" What a huge thrill, I still feel warm and happy just thinking about it.

Unfortunately for wee Kaitlin, she had one of the roughest journeys a kid has ever had in Chch neo-natal and survived, but thank god she did! Everything that could go wrong did. Ventilated twice, hole in her heart, jaundice, multiple infections, many blood transfusions, profound apnoeas (ongoing), seizures, chronic lung disease, CPAP (assistance with breathing) the list goes on and on. The scariest thing for me was when she would stop breathing and turn black and get ripped off me and revived. This happened regularly and while at the beginning we thought it was the "norm" in neo-natal, the many hours of research I did on the net and observing other babies in there I soon had the sickening realisation that it was not normal. We saw other babies come and go and we were still in the most intensive care part. We didn't get that period where survival was no longer an issue, and the disability doubts started creeping in. Every day we didn't know if we were going to lose her to a big episode, we didn't know if it was causing brain damage and I became convinced and knew in my gut that things were not going to be OK. The nurses evaded my questioning like skilled matadours avoiding a raging bull. I went from skipping the parts about CP in my premature baby books (I thought it was extreme and of course wouldn't apply to our wee girl!) to reading those parts and everything I could find on the internet obsessively. When I realised that Kaitlin had experienced every single thing that can cause CP (just one of these factors could cause CP and she'd had them all), my heart sank but I still believed that she could and would be a miracle. Wayne and I pushed for an early MRI scan which would show any brain damage. We got called into the family room and a consultant sat us down and told us it looked pretty good and that someone had commented it looked normal, but the neurologist who was overseas would have a look upon his return and get back to us. We were ecstatic! We knew a lot could be seen on MRI and this was the news we had been waiting for. We rang family and spread the good news. When the neurologist had seen her results he called us in and said that her results were far from normal and we should not have been told that they were. He said she would be mild to moderately disabled. I was completely destroyed but decided to focus on the mild part of his statement and breathed a huge sigh of relief because it could have been worse. He explained that he didn't have a crystal ball but judging by what he had seen on the MRI, Kaitlin would need assistance with some things her whole life eg, we probably wouldn't be able to send her to go shopping by herself because she may not understand money etc, but that it was really a matter of wait and see.

I was DEVESTATED. We went down to the river and Wayne put his arms around me and I just sobbed and sobbed and sobbed.

When we finally got her home at 3 months post term after six months in the neo-natal, she was on oxygen and a range of medications. It was scary as hell. Every day I worked with her playing and talking and singing and becoming more panicked about the things she should be doing and driving Wayne crazy with my worry. Every time she was a month older I would look at developmental milestone charts for that age and feel very disappointed and worried, but I think my overwhelming feeling was still one of hope..................

So here we now are at Kaitlin's second birthday, and so much has and hasn't happened. Her first birthday was a real mixture of happiness that we had her and sadness that she wasn't reaching ANY physical milestones. The picture at this stage had gone from mild to looking more like she was going to be severe, and I was filled with grief for her and for us. She was not a very responsive little girl, rarely smiled or made eye-contact and never laughed out loud. I was furious with the neo-natal unit for playing god with a little life and now this poor little girl and the two of us would have to pick up the pieces of a life that without so much intervention wouldn't have been and maybe that would have been better for her. Phew, that was really hard to admit. Wayne's unconditional love for Kaitlin and his pride and faith in her helped me through this time.
Then something happened. This amazing little personality began to slowly emerge out of Kaitlin. She showed real enjoyment and pleasure at things. She smiled often and in response to our efforts. She started trying to move with intent. She obviously enjoyed music. We could see love and other expression in her eyes. Now at two is Kaitlin walking? No. Talking? Well I think so but I'm really the only person who understands her gestures and noises. Sitting? No. Crawling? No. Can she use her hands very well? No - but this is improving. The list goes on. But as time has gone on I have reached a place of acceptance. The goalposts kept moving and moving until they kind of ceased to be there anymore and my priorities for her have changed.

I believe that Kaitlin will do many things. I do believe she will talk one day, I believe she may walk with assistive devices. If she doesn't though, it's not the end of the world anymore. Is she happy? YES YES YES, and that is my measure of success for her now. She is bright, I know she is and I will work hard with her for her to achieve HER maximum potential, whatever that may be, and I will never ever give up on her ability to learn for her whole life. Kaitlin doesn't know what it is to live without cerebral palsy and I don't know what it is to raise a child without cerebral palsy (and it is unlikely I will now, as Wayne and I separated recently), so we just work with what we have. And as we cuddled and laughed and played and got excited at her presents on her birthday I felt much more of the happiness and very little of the sadness of her previous birthday. I wouldn't want to be mum to anyone else. This is one neat kid who is my whole world and I am proud of her and excited to see what she is up to by birthday 3. I LOVE YOU MY BRAVE BABY!!!! XOXOX

FAIRY WINGS

What else is a girl to wear with a beautiful party dress? Fairy wings of course!!! Aunty Wendy and Poppa J completed Kaitlin's birthday outfit with a pair of sparkly pink wings and it took her maybe 1/2 a second to decide that they are F-A-N-T-A-S-T-I-C! Looks like the hats are out as her fashion accessory of choice. She also got a luxurious sheepskin from Frith and Ritchie, a drum which she chuckles at and LOVES and talks to, from the Cargills, lots of beautiful books and clothes and music. Oh and a really cool cake that she actually ate! Lots more photos...too many actually so I'll have to stagger them over the next few posts, stay tuned...........

A special hello to Helen in Invercargill for remembering Kaitlin's birthday and her lovely wishes and caring thoughts, Thank you X

BIG GIRL PARTY DRESS

Thank you to Kaitlin's Granny and Grandad in Brydone who sent her a gorgeous white dress with turquoise and pink dragonflies and butterflies and matching white frilly socks. She looked absolutely darling and was definitely the best dressed at her party! She seemed very pleased with herself. I wanted to put ribbon in her hair but it is curling so tightly that it will have to wait til birthday number 3 I think, or maybe Christmas if we are lucky. I just love her hair - it is wild and adorable. Sometimes she gets her fingers in it and looks really suprised as she twists it around her fingers heehee. She also got fairy wings that matched the outfit perfectly, I will post the pictures and more about our clever wee girl and her birthday in the next post. One word sums it up though really.....SPOILED! (because she's worth it!)

BIRTHDAY PRESENTS FROM DADDY

Kaitlin's Dad sent her some cool presents for birthday number two! She enjoyed opening and trying to eat the jelly bean wrapping. She rolled over repeatedly to play with the wooden shapes puzzle and the gold glitter ball is already an established favourite!!! Opening presents is a tiring job when you're only two though (lol)!! Thank you Daddy, Love from Kaitlin X

BIRTHDAY TREAT

For Kaitlin's birthday her Aunty Frith and I took her to the Multi-sensory room at QEII. It was like a really wicked chill out zone with trippy light effects, fibre optic cables for her to play with, that glowed in different colours and relaxation music, a big coloured piano on the floor and interactive buttons and musical objects for her to enjoy! It was a success, and I would recommend to anyone with a toddler to go and have a go!!! The highlight for me was getting a for real bear hug from her that was tight and intentional. Yay!!

KAITLIN IN KAIKOURA

It was a weekend of fishin'  (not many that were edible!) and lots of attention for the wee girl who lapped it up and slept all nite both nites even though in a porta-cot and a strange place!