We're famous!

Not long ago Dad wrote to the Craniofacial Australia Foundation in Adelaide regarding our history and progress. The editor included the story in the latest newsletter.

You can see where my love of writing has come from...

It takes a village

November 25th marked Joanie's yearly review and yes our wins continued from my last blog as she passed her review with flying colours. The Surgeon was more than impressed with her development and head shape and classified it as "normal" which is awesome! Jb freaked out when she was in his office though as she must associate that room and Surgeon with a time of pain . Will be interesting if she still freaks out next year when we visit in the new PMH? Will the Surgeon regardless of the environment still make her anxious?

At this stage the Doctor didn't think further surgery would be necessary but saying that  if one day Joanie feels she would like her scar to be reduced or her forehead ( which in a small section is slightly concave) to be rounded she could have surgery done. This would be in her teenage years at the end of her head growth and regarded as "elective/ cosmetic" surgery not essential like her first surgeries. Only time will tell .

Unfortunately my wish of hassle free flights didn't come true. Well the flights down weren't bad, in fact some of the crew took a special shine to Joanie and one Japanese flight attendant took Joanie to the cabin to show her how to make origami which she really enjoyed. Koby sucked on his dummy and slept for the majority of the flight. But the flights back to Broome was nightmare worthy.

The three of us were a bit coldy the day before our flight so it was to my frustration but not surprise when we woke on the first morning in Perth Koby's eye was stuck shut with some gunk and what was later diagnosed at the GP with conjunctives itis. Joanie picked it up the next day and the both of them and myself cold worsened.  Joanie has been pretty lucky as despite her having a rough first year she seemed to skip a lot of the kids colds and flus that many little ones get . Despite her cough and sniffle she was a happy toddler in Perth and loved staying and Gg and Ju Ju's house. Koby had a few hairy nights sleep  and took to sleeping draped on his mummy.

So the day of the return flight I was very nervous , and for good reason as Joanie was very grumpy and her ears were giving her grief  so it was a very un relaxing flight. At one point she pushed me off our two chairs and fell into a deep sleep leaving me to walk up and down the isle with a sleeping Koby. A lovely lady came up to me and said she was trying to catch my eye and offer her an empty seat next to her on the other side of the isle from Joanie, She was in a row of three so we weren't on top of each other, I accepted graciously and had a peaceful 30 minutes nursing Koby and watching over Joanie as she slept.  Poor Joanie's throbbing ears woke her up and she was groggily in pain, that same beautiful lady offered to take Koby for me so I could sit with Joanie and stroke her forehead and shhhh her . This went on for the rest of the flight, leaving that life saver holding my infant ( I prayed she wouldn't get sick from Koby but at that stage he was over the worst of his gunky eye). When I asked the lady if she was a Broome Resident as I'd love to arrange to drop her off some mangoes and fish she said she was visiting her daughter and no gifts were necessary as she would like to think someone would help her daughter if she was in the same situation as myself and travelling alone. So thankyou lovely traveller if it wasn't for you I possibly would've had a melt down. I am guilty of taking on too much at times and forget that it takes a village to raise a child, so I shouldn't feel awkward in the future in accepting help from others.

Big shout out to my ill ( more than likely from us) Mummy who took the Broome Chest Ward under her wing and fed us up on comfort food! I hope you are back to normal soon xx

Our Perth home, getting some TLC from Gg and Ju Ju

Dummy Spits and Games ON Thrones

If you read my hinting status report on facebook you may be wondering what I was on about and what Shaun and I have won.....well for those who don't have young kids you may be let down with an anti climax as no we haven't won a car or a trip to the Maldives but we got Koby to  sleep most of the night ......with help....from the dummy! I'm sure its pretty mundane for most but a win for us as Koby has gone from being not a bad sleeper to quite nocturnal . I was reluctant to use the dummy as Joanie wasn't a big fan of it (only used it briefly  for a few months) plus I wanted to avoid having to wein him off another thing, but desperate times come for desperate measures. I'm no doctor but I suspect his change in sleeping pattern was also because he couldn't roll easily in his grow bag in the cot and the rolling helps him release gas . When he's on his tummy rolling on his beautiful quilt (Thank's Aunty Jani) on the floor he's at his happiest and there's a lot of tootin' going on so little boy is de gasing himself haha. There's also been a turn from the Dry to Wet Season so we have only recently put our air con on. We are quite tough compared to others up here and have our air con only on 26-28 and he only has a light muslin cloth or light grow bag . We are of the opinion that we don't want them too used to the air con as they will be doing heaps of camping with us!

A very happy Koby on his beautiful custom made quilt

Not the best quality photo but I love the faces xx

Jb's Throne!

So the Dummy+ Air Con  = better sleeping pattern was a win for Koby and us but there has also been another win for Miss Red.....she's a big girl and now going to the ol' WC by herself!!! Again this might be TMI ( too much info for my older readers haha)  but a huge milestone for the older sis and been a long time coming. I have gone from toilet time being a very private thing and time that I get a quick break/ rest to it being a huge event and getting commentary when our big girl goes ( gross but funny) I'm now just trying to get her to understand its a part of life and not something she will forever get a reward for .

Hopefully the wins will continue as Joanie has her yearly review in Perth coming up on Friday and we will get to speak to the surgeons about her progress  , fingers crossed they still believe no more surgeries are required . 

Oh and I'm hoping for "winning " good behaviour from both of them on the plane as I'm not looking forward to taking an infant and toddler alone on a plane , hoping Jb's love of planes will mean she is in good spirits and that Koby is restful . 

Happy Birthday to my wonderful husband for tomorrow X

Balancing Act...

Tuesday marked Master Koby's 4 month birthday, WOW! Can't believe that time has gone so quickly!

Koby is a very happy boy most of the time unless he has a "pain in his pinny" which is happening less and less with assistance from a magic potion in a bottle! He's very smiley and chuckles when we bounce him around. He has a very strong upper body so has been doing little stints in the bumbo chair and today he started rolling back and fourth so much he almost made me sea sick!

It really is different being able to enjoy the standard infant milestones without the grey cloud of surgeries hanging over us as with big sister Joanie. I hope we didn't miss anything due to being a bit sidetracked with Joanies' medical schedule, I think we still tried to dedicate time to the regular developments but maybe others may disagree.

As discussed in my last blog "Herding Cats" the kids have made it challenging to get to appointments in a "punctual manner" that's putting it mildly ....however, I have had a few wins with this battle lately and am getting to more and more gym dates at the local and very accessible gym.

I've never been a mother to preach to other mums on how to do things but I do believe if you're someone who has enjoyed going to the gym in the past ( or even who has always wanted to go to the gym but decided against it due to kids) I think a gym membership ( or something similar that offers a creche) should really be considered! My local gym has been fantastic for my situation, it has a great creche so I can relax and know the kids are in a safe  , fun  environment whilst I get some "me" time in a group class ( not brave enough "yet" to hit the main gym this time round) . I have also encouraged a few other mums from Joanies' mothers group to bring along their kids to play with my little rugrats which has been an added bonus! Anyway if you can possibly afford it , give it a go as it may be the time out you and your kids needed!

I have reluctantly just returned to the work  force to do some hotel reception work. I enjoy the work but do feel as if it's too soon to return and am only doing it to get bigger day care rebates for Joanie to eventually go to Day Care  ( Shaun and I have had a difference in opinion on when to start her there) and to be able to afford the expensive living costs in isolated Broome Town. I'm working casual shifts that start once Shaun finishes his Maintenance Management work . We work at the same hotel that we've been connected to for over 10 years so its like putting on an old coat I suppose.

Monday night we all met Mr "Super Dooper Moon"  (? the official scientific name right?)  well I'll be honest and admit I didn't go out and see it as I was dealing with two Silly Super Moon Sprogs and was up and down to them all night,  this was made even more frustrating as they were perfectly behaved a few hours before when Shaun went fishing for two nights , I should've guessed it would be Murphys Law  + Super Moon and they would turn into Gremlins once he'd left! I was in struggle town the whole next day but tried to kick on and not feel sorry for myself at home.. I forced myself out the door to take Koby to see his mates at the mothers group. I'm glad I went as the hostess and the other mums were so welcoming and it's lovely to see Koby interacting ( well lying next to ) other bubs around his age .  There  was also another little boy around Joanie's age who she loved to play with ,  he shared his toys so beautifully with her and they enjoyed each other's company . Sleep who needs sleep? I thought....Joanie doesn't...i perked up with a lovely coffee and carried on after the mothers group to run some errands...we were running on empty but still go to the post office and supermarket.

In the afternoon my dear friend invited me and the kids to her house for a swim in their magnificent pool......well the wheels fell off and Joanie turned into "Red Gone Wild" and no longer remembered how to share and carried on like a pork chop ( a sooky pork chop) and got very upset about the prospect of sharing her frogs (or ponds as she calls them) with her mate Ritchie. Well my relaxing swim and catch up was cut short as she couldn't build a bridge about her frogs playing with anyone other than her so I embarrassingly took her and Koby home early. Guesse sleep isn't overrated after all? Shaun has since returned and is now on night shift with Koby for the next few nights so I can recharge a bit for my three shifts this week.

If I had my time over again with my first child I would listen to people when they said "sleep when they sleep" even though it sometimes got my back up when that was recommended ( probably more than anything because I was over tired and irritable) I wish I could get that time back that I chose to clean instead of sleep! When you have two or more kids chances of naps have decreased even more, chances are your older child wont sleep when the infant does if at all so first time mums I would sleep any chance you get! Will the sky fall in if the floors don't get mopped till tomorrow? No ( hey I'm still telling myself this ).

Being a parent is a real balancing act as you have to find time around the kids for yourself , adult time with your partner , work , house work , something always gets neglected and it's often the time you should be spending on yourself , not enough , but I think my general life balance  is improving , hopefully  the balancing act is only going to get better and better! 

Herding Cats

My biggest day to day challenge with the two rug rats is getting them out the door on time for playgroup dates , classes and get together s. Some times it feels next to impossible,  I think it's like "herding cats"  Very frustrating as I used to always be a punctual person prior to kids!

The first time I heard the expression "herding cats" was back in 2009 when a group of my extended family took our Grandparents along with us to Bali. At that point in time they were quite fit and mobile and very switched on. 

We were on our way back to Perth after a successful family holiday when my parents asked Grandma and Grande to sit down and take a rest while we do a bit of final shopping to empty our purses of any remaining Indonesian Rupiahs. It was only 10 minutes later when Mum asked  "Where did Grandma and Grande go?"  the rest of the morning was a blur of family splitting up into pairs scouring every section of the Jakarta Airport for the two Octogenarians. Eventually my cousin Annie and I started lining up in the big que to the pokey departure lounge while Mum and Dad carried on their frantic search. 

"There they are!" exclaimed Annie and Grandma and Grande had made their own way through the hustle and bustle of  raucous Aussie tourists , past the intimidating armed Customs Officials on the other side of the metal detectors in the departure lounge. When asked what had happened they both indicated they were concerned of the time and forgot they were asked to stay in one spot and made their own way to the lounge. Once we were all reunited someone exclaimed ( i can't remember who, probably a good thing too) "It's like bloody herding cats!!"

Family and awesome staff at the Amori Village in Ubud Bali 

Well my kids are similar to those seniors on that occasion. They don't always register what is asked of them and make their own way when they're ready, otherwise you often have to carry them out to the car kicking and screaming. Well Joanie is the kicker and screamer and Koby is the Poo Shooter who always waits to the last minute to have a "poonami" and make us even later!

I really admire parents who get to outings on time and would like to know their secret! I've tried everything, from preparing the night before, laying the kids clothes out and prepping the nappy bag even on the odd occasion down to the tupper ware containers of snacks ( this is something I'm not as good at often resorting to throwing bananas and sultanas in the bag at the last minute). 

I'm hoping to get to a stage when Joanie doesn't protest at the idea of going out, its nice that she is attached to her bedroom and toys but its as if she has separation anxiety about going out without at least a bag of some of her motley crew. 

She loves all her toys but she has had a few special favorites for some time including her collection of small bouncing balls, duplo blocks, turtle puzzle pieces, wooden peg people and her latest favorite are these plastic frog bath toys. Now can you imagine a pretty curly red haired girl , in a floral dress and love heart sandles with a Blue Back Pack with a Shark on it  ( she picked it out at Best n Less) full of this random selection of toys? It is in my defense, an improvement from a larger Styrofoam box that we had converted into a car full of her toys .Shaun had once compromised with her to take this in the car rather than a huge tub of blocks ! Now the  backpack is only half the size again.  I'm dreaming of the day she could pick just the ONE toy!

Jb and her cousin Chloe playing with her DUPLO in Perth

Koby ( hair style by Jb) playing with his mobile

You never know , Maybe Koby will go against the grain and be a minimalist not a bower bird collecting lots of sparkling toys  otherwise I may have to upgrade from Eddie the Mazda to an ugly mini van!?? 

Big Smoke little Smoke

I grew up in the big smoke, well some may argue Perth isn't a big smoke/ city compared to others in oz but it certainly is compared to little ol' Broome Town.

Joanie and Koby will have the best of both worlds and be based under the beautiful skies of the Kimberley with frequent trips to the Perth, city of lights , their second home.

 

Koby and Mumma Eri outside chillaxin' under a Broome Boab tree ...

There mightn't be as many shops/ cinemas/ arcades for the older teenage kids ( which I admit is a problem and can lead to crime through boredom) but there is certainly a lot to do for babies, toddlers and kids in Broome,

 

Joanie has inherited her mum and dads love of fishing, she jumps at any chance she can get to hop in her dads boats ( even if just in the driveway) and she is the proud owner of her own pink fishing rod.  Shaun had the tip of her fishing rod wrapped in tissue and tape for some time to avoid it scratching the home walls, it looked similar to a white tampon which certainly had peoples eyes wobbling when they came to visit! Once she learnt how to play safely with the rod inside ( yes I know it sounds ridiculous) her dad replaced the interesting wadding with a plastic fish on the end and now they often pretend they are bringing the fish in with a tremendous fight onshore. On a recent visit to spend some time with my Graunty (great aunt) and her gal friends at a local hotel Joanie even brought her fishing rod to dunk in the hotel pool! Not what this stylish, feminine lot may of expected a young two year old girl to have as her favourite play toy.

Jb playing in her daddies dinghy,,,

 

Here's hoping Koby shares her love of fishing , but , we will be just as proud if he would prefer reading or acting , dancing or art? You just never know how your little one will develop...

 

A recent development for Joanie is her love of planes! Jb has become an avid 'Plane Spotter!" My mum claims this would've made her late Pop very proud as he was a amateur pilot and if he were still alive would've loved to share her love of planes.

I have since learnt that if I'm having trouble getting Joanie to leave the playground or Town Beach Water Park all I have to do is say..."Lets go see the Big Planes!"  in a flash she stops what she's doing  and helps mum push little Koby to the car. We then go and wait for the planes to arrive and depart in the car park at the small aircraft section of the airport. Joanie cheers the planes in and out and gets beyond excited!

 

This school holidays one of the Camel Companies has been kind enough to do some camel feeding sessions with the local kids a few mornings a week. I thought Joanie may like this! After much talk about feeding the baby camels over the days leading up to the event we got there and she was mortified! As you will see in the photo it was me who ended up feeding the gentle camels some carrots as she looked very un impressed.

Looks like Mum is more of a fan of Zamal the Camel than Miss Jb....

 

You know you're living in regional Australia when in the school holidays not only do they have camel feeding sessions they have petting zoos in the local supermarket with snakes, blue tongue lizards and baby crocodiles! Again I took Joanie but again she was only marginally more impressed. I refuse to believe she'd prefer boring guinea pigs and ducklings!

 

For the Junior Stanleys , in this moment in time, the little smoke suits us to a T.

We're Back.......But now there's four!!!

I've been dying to get back into writing again, especially with great blogger idols around like Constance Hall (I wish I could write half as well as her!).  Constance has motivated me to get back into it so I have a hobby that gets me away from the sometimes stir crazy-ness of looking after little people.

 

It's been over a year since my last post and Miss JB has developed into a very happy and healthy two and a half year old. If you didn't know she had such a rough first year - you would just assume she had no complicated medical history.  We now only require yearly check-ups with the surgeon at Princess Margaret (next one being end of this year) and luckily there has been no side effects from the two surgeries, all has gone 100% to plan.

 

July 15th we welcomed the handsome Koby Farr Stanley into the world and he has proven to be a wonderful addition to our clan! Joanie absolutely ADORES him , though she does sometime squeal a little too loudly in his ear with delight and gives him some huge boa constrictor hugs which makes me a little worried for his safety! She loves helping me with his nappies and giving him bottles and just watching as he babbles and smiles and develops more and more each day.

 

Shaun and I were adamant we wanted to try for another baby and sibling for JB despite there being a 50 % chance of the same "craniosynostosis" gene being carried on in our next child . We even looked into using IVF to eliminate that gene, however, we fell pregnant before going down that path way and it turned out well in the end. I know we would've pulled together and coped had Koby shared Joanie and my condition, but it was a relief knowing we didn't have to go through seeing our precious children in pain again. Some may say what we did was risky and selfish , but when I see the love shared by JB and Koby I know we did the right thing.

 

Now we enjoy the normal developmental milestones of an infant without the grey cloud of surgeries hanging over our head. I do reflect often on  this though when I see things that Koby does so easily that  JB found so difficult, such as tummy time and holding her head up.  Shaun and I look at him with  proud but surprised eyes, we just can't believe how strong he is!  I'm sure he will also be much quicker with other stepping stones such as rolling, crawling and walking;  all tasks which require balance and upper body strength, things JB had to work so hard at to develop. But  JB will probably shine at tasks that Koby will find hard. No other two year old could love the outdoors and fishing as much as she does!!

 

We are extremely fortunate to know Joanie's early challenging days are behind us now and my heart goes out to those parents who have hospitalised and/or seriously ill children that will remain that way for a long time or possibly for their entire lives. It is terrible to see your child seriously hurt or ill ,  but all I can say to those with sick or injured children is don't ever give up, children are way tougher and smarter than us adults give them credit for.

 

Now Shaun and my struggles are that of the more common variety, the things that most parents have to deal with - juggling the day to day life with a new born and toddler! All I can say is I'm proud I have no grey hair and am not a chain smoker from all the times Miss Red has pushed my buttons!

I'm fairly sure I'm right in saying I permanently have suitcases under each eye from all the broken sleeps Mr Koby Farr has given me but I know I can speak on Shaun's behalf saying our hearts have never been fuller and we couldn't imagine life without those two little gremlins!