SERIOUS STUFF

Hey everyone. The reason I have been (uncharacteristically) quiet is that we had to take the wee munchkin into hospital on Tuesday. She had a LOT of blue spells on Monday, was grizzly and off her food and vomiting and we thought she might have a bug or be refluxing again. We have been there since, and while we were expecting them to say that her stomach wrap would need to be tightened and that she had a bug, we were not expecting the subject of a feeding tube in her stomach to be brought up! However, very long story short is: The doctors believe that feeding Kaitlin orally at the moment is life threatening for her as she seems to be struggling to co-ordinate her breathing and swallowing. The biggest threat to Kaitlin's life is that she will breathe food into her lungs, get pneumonia and end up on life support or die. This is common with cerebral palsy and they think it is only luck really that this hasn't happened yet considering how she feeds. Sometimes she eats perfectly, but sometimes she just doesnt cope. Unfortunately we would have benefitted greatly from a speech and language therapist to teach us how to teach Kaitlin to eat, but there is not one down here until September. So....after agonising and researching and discussing with specialists, talking to other parents and weighing up pros and cons, we have reluctantly made the decision for Kaitlin to have an operation to put a tube in her tummy to put medicine through, and to put food through ONLY on the days she is not coping or when she is sick. Another reason for doing this is that every time she gets a cold or is unwell, we are unable to get food and fluid into her and we end up in hospital on a drip. The problem with this is that she has had so many needles in her short life that they are simply running out of sites to put a needle, and it is traumatic and painful for our wee girl. With a feeding tube, even if she is unwell we can keep her well nourished and hydrated at home. No hospital, no needles. Anyway, thats just a brief summary. They have sent me home tonight to have a rest. Kaitlin and I are flying into CHCH on Monday with a nurse escort and she has surgery on Tuesday . We will then stay on to party with the rellies as planned when she has recovered and fly home to Southland on the 17th unless she has complications. Wish us Luck, and can't wait to see some of you soon!

KAITLIN AND HAPPY CAT

These two are best of mates. Not that Happy really has much say in the matter. She knows that to get any attention from me she needs to be where Kaitlin is I think. She sits guard when Kaitlin is sleeping during the day, comes in and says good morning to Kaitlin first thing when we get up, and puts up with some vigorous patting as I am still working on teaching K "gentle touches." Kaitlins face lights up when happy sits on her legs and pats her, it is adorable.

SICK TODAY

Here is Kaitlin trying chocolate for the first time last year. She definitely belongs to us.I don't have any cute new photos to post of the little monkey because she was really grizzly yesterday. Today when I got her up she was very hot and sweaty and after the first bottle of the day she puked all over herself and the couch. Off to the bathroom for a nice warm bath and lots of soothing from mum, into clean clothes and into bed with daddy for some get better cuddles. She was all smiles as daddy stroked her head and mummy came in to check on her, so I thought it was safe to make a phonecall. Uh uh, no way! I heard a little cry and arrived in the doorway to see her powerchuck milky-milo all over MY side of the bed. Poor little girl, so off for another bath, clean clothes and more cuddles. My angel is now fast asleep after keeping a bottle down (fingers crossed) and I'm off to wash about 4 blankets, towels, sheets, flannels, clothes, pillowcases...Ah the glamorous life of a home executive:-) I'll leave you instead with photos taken last week of Kaitlin and her Johnstone cousins and Granny and Grandad. Kaitlin pulled faces in every photo. Uncle Heath would be proud!! :-) x

AHHHHH THE WEEKEND

This was our Saturday. Bliss!!!!!!!!!!!!!!

SCHOOL IS FUN!

I truly don't think I had witnessed real struggle, determination, patience and perserverence until we began attending Conductive Education. When you see little children with disabilities spend hours of hard tiring work and effort to try and do even the littlest things that we take for granted, like clap their hands or roll or sit it is inspiring but heartbreaking at the same time. People typically develop motor strength and skills from babyhood in order of neck/head, trunk, arms and finally legs. Without the strength in the neck and trunk, it is impossible to roll, direct your hands, sit, or progress to the next stages of development. As a general rule, if a child has no head control by age 2, and cannot sit unaided at 4, then the prognosis for walking has traditionally not been very good. Conductive Education doesnt see cerebral palsy as an illness to be treated but a problem with learning and believes that everyone can learn. So the rolling grasping, sitting etc that other kids learn to do naturally, we teach to our children through hours of repetition and music. This has been of enormous benefit to many children with motor disorders and it is inspiring for Wayne and I to see the children who have been attending for a number of years maximising their potential. These kids are not "normal"even after years of therapy, that's impossible. But they seem happy, motivated to try, and are all performing above what doctors predicted for them and that gives us hope. A lot of the children who were told they would not walk are walking, the same for speech. We don't expect a magic cure but we do see that this is the only place for Kaitlin to be to reach her very best, whatever that may be. Her teachers and the other parents are so optimistic and positive. (well us parents have the odd meltdown but it's nice because we can take turns and be there for each other). It is this sense of hope and positivity and nothing is impossible that I love. Not just that, but the conductors do not just teach our children they LOVE them. They make learning enjoyable and rewarding and build the childrens self esteem, and they give us parents encouragement and valuable tools and knowledge to take home as well. We are still working on the head/neck/trunk control with Kaitlin. Her progress is slow, but it is there and the smallest achievements are cause for celebration. We see improvements all the time. And her enjoyment of the classes and beautiful smiles when she does something right are awesome. Here she is doing her thing

CATCHING UP WITH FRIENDS AFTER THE HOLIDAYS

It was so nice to see the other kids this week and watch them interacting with each other. In the top photo, wee Grace (4yrs) is baby mad! She wouldnt take steps so Judit dangled Kaitlin in front of her as incentive. This worked brilliantly with judit rolling backwards on a stool with Kaitlin in her arms and Grace following them on foot so she could smother Kaitlin with cuddles and kisses. Kaitlin thought this was hilarious (not that you can tell from this pic), and Graces mum wants us to stay 1/2 hr after Kaitlin's class to do it again.
Here Jack is kissing Kaitlin on the hand hello, and in the bottom photo, Kaitlin and Olivia were laying on the floor and Kaitlin was touching Olivia's hair and under her chin and both girls were giggling. It was really sweet.

FLASHBACK: THIS TIME LAST YEAR

I had to put up these photos taken of our girl this time last year, just because they are so very cute!

TEN TINY FINGERS AND TEN TINY TOES

Hey judit, here is the picture of Kaitlins tiny feet that I was telling you about!

GIRLS JUST WANNA HAVE....HATS!!!

For some girls it's shoes, others it's handbags, but when you're this little and quite bald, hats are the perfect fashion accessory. "FABULOUS DARLING" I can hear Kaitlin's Aunty Frith shrieking with delight! We think so too. x

"CELEBRATE GOOD TIMES, COME ON"

Sleepin 9 to 5 dum dee dum dee dum dee dum dee!!! I can't stop singing this morning. Maybe it has something to do with the fact that this little beauty slept all night! From 9 to 6 to be exact, but thats not how Dolly wrote the song. What a good clever girl. This happens about once every 2 months and when it does it can rain and howl outside and it doesnt matter what is happening anywhere else in the world, here at the Johnstones the sun is shining, the birds are singing, it's goin to be a great day, and I think to myself "What a Wonderful World". Right on Louis Armstrong.

BACK TO SCHOOL

Tuesday was the first day of term 3 at Conductive Ed. Check out the undisguised enthusiasm on the face of this child would ya! Well it was pouring with rain and freezing cold, but at least Kaitlin was very snug and looked very smart in her clothes knitted and sent by her Great Nan. Thanks Nana Betty! Check out the cute ladybird lunchbox. (It's a shame she wont eat ANYTHING I put in it) but at least its pretty. Conductive Ed is four days a week now instead of two, with one of those days for swimming. This is fantastic! Although Kaitlin is a bright wee spark, her physical development is really slow (still very floppy and finds it hard to control movements), so if we are going to prove those experts wrong and have her walking and talking, eating well and semi-independent one day we all have to work hard. Luckily her conductors Judit and Gyorgi sing a lot and well and make learning lots of fun and Kaitlin enjoys it, which is the main thing, but it is also helping her be the best she can be and she shows tiny improvements all the time and that is huge too. She has two little buddies there, Brooklyn and Kahu. They are gorgeous boys and try so hard too. I love watching them all together. I'll get a good photo of the three of them and put it up.

CUDDLES!!!!

Wow, we've come a long way! In those early days our cuddles were terrifying, for Kaitlin too I think. A confusion of wires, tubes and needles, she was a three nurse job to get out of the incubator and settled into our arms. I will never forget how fragile her skin and tiny bones felt on my chest and under my fingers. I wanted so badly to hug her tight but I was too frightened to move and overwhelmed with emotion and awe. The closest I could come to rubbing her back was running my little finger down her tiny spine. Then Kaitlin would decide she had had enough and stop breathing so three panicked nurses would try to hide their panic and get her back in the incubator to revive her.

Fast forward 21 months and cuddles are sooo much better now. We absolutely love cuddles in this family and try to have them as often as possible, usually with lots of tickling and rolling around too. Now Kaitlin wraps her arms around my neck and rests her head on my shoulder and whispers secrets. Heaven. Even if I do have to avoid the odd (accidental?) punch in the nose or kick in the tummy! Was she ever really that tiny and delicate?

LIKES AND DISLIKES

Okay so this is the look we get when Miss K is not at all amused about something. Actually this is a pretty mellow not amused for our Kaitlin. The "Look" gets pulled out for a variety of reasons. On this particular occasion Kaitlin was waiting in her armchair in her bedroom for mum and dad to remake her bed after she power-chucked in it. Nope, she wasn't amused. I am also at the recieving end of this look when I move towards Kaitlin with a teaspoon of solids, sing and dance when she's not in the mood (she loves it - really!!!), or try to take photos when - you guessed it - she's not in the mood! She has a lot of moods, I don't know where she gets it from heehee. Kaitlin has heaps of likes including her cat, cuddles with mum and dad in their bed, music, trees, conductive ED (well most of the time), chocolate, salty chips, kicking over her bowl of food or mums dinner, swimming (I took her swimming in a big pool for the first time last week and she loved it!). Oher loves include crazy dancing, books, tickles, wind, the sound of rain, holding hands, waving her magic wand. bells, fairies her family and her teachers at conductive Ed. Speech can be difficult or impossible with Kaitlin's type of cerebral palsy because her mouth tongue and breathing muscles are very weak. We feel very encouraged by the fact she says "mum"da""ba"(bath) "va"??? and does the baby sign for bottle which I just love. So even though she doesn't speak like other children her age she makes her likes and dislikes very clear to us. It's really funny because if we take her anywhere she is as quiet as a mouse but here at home she is so rowdy. She shows that she loves something by smiling with her whole body and wriggling her arms and legs and chuckling. If she doesn't, well, we get the "Look"or she holds her breath and turns purple, or she yells. So we get the message.

Activities or things that get this reaction are pretty limited really, tummytime, tummytime and tummytime. What is the best thing we could do for her physically? Tummytime. Hmmmmm.

Solids, sleeping and long car trips are up there too, but other than that she's pretty cruisy.