Jb's first Christmas!

They say there's only one thing better than being a kid at Christmas..................Having a kid at Christmas!

 

Jb may be under one years old but she was a delight this Christmas, she picked up on the Christmas spirit and was very jovial!

 

Jb, Shaun and I had yummy croissants and fruit for breaky, unfortunately then Shaun had to work so Jb and I went to an orphans lunch at our friend Tawna's -It was EPIC with oysters Kilpatrick, Japanese oysters, prawns, pearl meat,  roast meats, vegies, gourmet salads, cocktails you name it! Miss J had many swims in the pool and stayed very chilled out despite not having an arvo nap.

 

After lunch we opened presents together with Daddy and then Shaun and I had some Chrissy Dinner ( thank you Tawna for the luxury left overs) and Great Aunty Merome's special steamed pudding DEVINE!!

 

Can't wait till Jb's next Christmas when she's even more aware of what's going on. Shaun has decided to put in to have next Christmas off as he was disappointed not to spend the hole day with us.

 

Next ...........Jb first New Year.....well she wont be counting down but it will be a lovely treat starting the new year off with our little angel!

 

BTW Went to the Paediatrician yesterday and she said not to worry Jb will crawl and walk eventually she's just going to be a bit delayed as gaining her head/ neck strength took a bit of extra time so it will be a bit of a domino effect with delayed crawling and walking. Jb has very strong upper body strength though doing planks, push ups and commando rolls all over the house to get around. She is almost there just keeping us hanging!

 

I've let you with some festive photos

Christmas Breakfast

 

Jb and I hanging around the Pool on Christmas Day

 

Christmas Lunch Elf style!

 

Our Christmas Angel opening her presents

It's begining to look a lot like Christmas

Christmas tree is smaller and "softer" this year incase a little elf pulls it on herself!

Out and about in my pram!

Jb first selfie! Teeth and all!

Reading with Miss Red xx

Long time inbetween blogs...

It's been too long between blogs! I never intended for this to be daily blog but definitely more frequent than this . I will continue to blog for as long as I have worries/ thoughts/ ideas that need to be downloaded and to "de-clog": the old brain!

 

Things have been ticking a long well in Broome, I've had a few ups and downs which was to be expected but mainly JB and I  have taken to life back in Broome like ducks to water.

 

We were only back in Broome a week or so when we went to the Christmas Markets in China Town. It was a great night except we had our first Broome experience with curious people commenting on Joanie's different appearance, for those of you who follow me on facebook you were probably aware that I was affected by this and took a while to come to terms with people being "only human" and feeling the need to question things. On facebook I shared a link for another blog that I could relate to written from the perspective of a mother who had a daughter with a significant birth mark on her face.  The mother wrote suggestions on how to deal with remarks from different groups of people. I felt it very helpful. At the markets there were a few instances where I could of used her tips had I read it prior to this outing. An old work colleague came up to greet me and then was mortified when her young daughter asked why Joanie had such a big head. I explained to the little girl that she was still recovering from a big  operation and that it would all settle down in time. Kids will be kids and question things frankly, I understand that , it still hurts but I understand it. I think what often makes it more upsetting is the parents reactions to their children's comments. I believe parents should be calm and not tell them off for being curious but explain to them  that the child/ adult hasn't been well and that she's on the mend . When parents tell their children off it embarrasses everyone and makes the patient  or person with the striking illness/ marking/ abnormality/ disability feel ashamed.

 

My dear husband and I  handle things differently when it comes to remarks or odd body language about Joanie.  Shaun bumped into someone he hadn't seen in a long time at the market, a lovely lady who was very sweet with JB but a bit taken back by her heavy brow. Shaun instantly went into detail about her condition, operations etc where as I would rather keep the finer details to discuss on here or with close friends and family. . Shaun is very protective and likes to explain why she looks a little different to anyone and everyone. where as I would prefer to keep conversations light and fluffy and details brief. Neither method is wrong but we  have since agreed to come to a compromise with information shared, I feel hypersensitive about comments and uncomfortable about discussing in detail when out and about as it feels so close to home and brings back memories from my childhood. 

 

On that same day , in the morning we had a totally opposite situation when I took Joanie to the public swimming pool with the mums and bubs group. I felt totally at ease as I always do with these lovely ladies and kids and comfortable to discuss our experience with Joanie should it come up in conversation. I think I am relaxed and chilled about the topic in this environment as it's never the main focus and I don't believe it should be.

 

Since our return little Miss Red has been full steam ahead with producing TEETH she now has six and some more on the way.  For a while there she was a bit irritable as they were coming up and down but she is now back into feasting on all types of solids including a variety of fish , steak , vegies and her constant fruit ( yes Ju Ju she is still a fruit bat!)

 

As if someone upstairs was reminding us that Jb hasn't FULLY recovered on Tuesday I took her to the ER at the hospital for her suture wound to be checked. I felt it was probably a bit of over kill but went regardless as there was a section that kept proving to be a problem with healing, scabbing heavily then coming off and looking very tender and angry ( sorry if too much info!) The staff assured me it wasn't infected and to keep on monitoring that area and bring her back should it get worse.  I felt the Broome Hospital Staff were helpful , however, I did write an email to PMH with a few queries, hopefully I will hear back soon.

 

 

A big shout out to everyone who has had December Birthdays so far including Jb's awesome cousin and our nephew Jake, beautiful Aunty/ cousin Sacha and handsome and ever talented  Gruncle Brian with his big 70th!! Another special mention to my parents who celebrated their 40th wedding anniversary, so many special milestones its a shame we can't be with everyone to help them celebrate!

 

Hope everyone is getting into the Christmas Spirit I know it's a bit hard to when nasty situations like the Sydney Siege having occurred but I believe it gives us even more reason to hold our loved ones tighter!

 

Jb showing off her new teeth!

More Photos are coming! 

 

Bittersweet Goodbyes

Well we are back in steamy Broome and its great to be a family together again, Shaun is delighted with Jb's progress and how she's grown up. I am also very grateful to see how much work Shaun has done around the house, the decks have been polished and the front garden  has been worked on (just to mention a few things). It was , however, quite sad to leave particularly when family are unwell. I really wish we weren't so far from Grandma during her recovery from her stroke, I loved seeing how she perked up when her young name sake entered her room at Joondaup Hospital . I look forward to seeing her in January and am sure she will be regaining more and more of her speech by the day.

Back tracking, the night before we left, Mum and Dad took Jb and I to a lovely restaurant at the end of the street , Juniper Bay it was surprisingly very impressive and Miss J behaved brilliantly. I can't thank you enough Mum and Dad for being wonderful hosts and supports - I am a lot stronger and well rested because of all your help over the last two months.

Little Miss Red was the best she had ever been on our flight back home, only negative was she was wide awake for the majority of the flight which meant I had to do my best clown impersonations and entertain her for most the flight. Poor little girl  finally drifted off to sleep for 30 minutes and the crew then announced we were about to descend so i had to wake her up to put her in her kid seat belt, that was the only time she got grizzly, A nice story was a particular stewardess took us under her wing and  arranged for us to have two seats so Jb wouldn't get bumped and gave us lors of extra pillows which put a protective mum's mind at ease. We also swapped stories about PMH , she explained that as a little girl she had to stay for numerous months, such a lovely lady, really appreciated her caring nature.

Since returning home, Jb and her Dad have wasted no time getting reacquainted and they have been having a blast,. Joanie loves it when her Daddy picks her up and she locks on and doesn't let him put her down!  They have already started their daily bush walks and she has had her first meal of Mangrove Jack ( see before and after photos) on Monday, she loved it!

Another great news flash is that Joanie had her first all night sleep (Sunday night) since before her Operation and she has been continuing to have her day naps!

Onwards and Upwards!


Visiting Grandma in hospital....you're doing so well Grandma! 

Before we head out to dinner with GG and Ju Ju all frocked up!

A Gastronomic Dinner for our final night!

See you soon Gg  and Ju Ju, final coffees at the airport

Daddy showing Jb a Mangrove Jack that he caught in local waters

Joanie enjoying the Mangrove Jack for dinner and sliding back into life back in Broome!

When life gives you lemons make lemonade ( well lemonade for Jb and perhaps G and T for me)

I chose the title of this post as I think it goes along well with the funny video below plus it's fairly fitting since discovering Joanie's condition till today.

Shaun and I were given the unfortunate news of  Jb having my condition , we took that news and were proactive organizing help from an exceptional medical team at PMH and now life is getting sweeter and sweeter each day. Of course it's been very hard to be away from Shaun but on the positive Joanie has experienced the support from family and friends from around the world and even though she's not even one years old I feel like she's grown as a person and has really enjoyed meeting some of her support network in Perth. 

Unless anything changes over night tomorrow I will be ringing the PATS ( Patient Assistant Travel Scheme)  to book our return flight to Broome to return home to my beloved husband and Jb's Daddy Mudcrab!

Perth you've been awesome, our home away from home and thanks again to our Perth supporters!!

Happy Birthday Daddy love Baby Bronco!

Today is my daddies birthday, sadly Mummy and I can't spend it with him but i wanted to share some of the things I love about my daddy with you.

I love it when Daddy pulls into the drive on his scooter and toots the horn at me at the door. I get very excited to see Daddy , he does too!! Daddy gets me out of my walker and takes me  from my walker at the door  to my high chair to have breakfast together. I look forward to this time of day when daddy takes a hard earned break away from work with me  and mummy.

I love it when Daddy and I watch IFISH  on tele together, I sit on his lap and we both enjoy watching the man on the tele catch and release big fishies all over Australia

I love it when Daddy takes mummy and I on big drives on bumpy roads around Broome and we stop at rivers, creeks or beaches and sometimes Daddy and Mummy go fishing. Daddy told me that when I can stand up one day i may be able to go fishing too! Daddy told me that Mummy, Daddy and I wlil have many camping and fishing adventures so I have started practicing with a toy fishing rod and magnetic fish, I'm getting pretty good if I must say so myself! Can't wait to show Daddy how i keep a bend in the rod!

Daddy loves me very much and gives me lots of kisses when i first wake up, at breakfast time, when he comes home from work and before i go to bed, I never get enough kisses from my Daddy, I love him very much  and can't wait to see him next week when we are both in Broome Town again!

The Surgeons Says......

Mum and I took miss JB to see the surgeons on Wednesday it was mostly a positive meeting  but  bitter sweet as they would like us to stay close to PMH for one final week until her suture wound has totally healed. Surgeon Mr Hewitt , explained that it's not un common for suture wounds like Jb's to take a little longer to heal as the front advancement has put a huge amount of tension on the wound . They also felt for stitches and couldn't see or feel evidence of any, however, they recommended I stop applying emollient and proceed with dabbing some old fashioned Bettadine on any problem areas until the scar has dried out.  I'm happy with this recommendation  as her hair will now loose the old man greasy brill cream look and the red bettadine isn't too much different to the colour of her locks!

It was also explained to us that the reason her frontal advancement was so extreme was to counter the natural tendency of her condition to grow width ways (ear to ear) rather than forehead to back . Surgeon Dr Hanson always over does the frontal advancement to REDUCE the chances of further surgery They explained in simple terms that if JB looked fairly normal after the operation, without a heavy forehead, they would most probably HAVE to operate again later to allow further room for growth. So .... in the long run I have to wrap my head around the fact that there will be some second glances from the public but it will be worth it in the long run as it will decrease the chances of further surgery.

The big down side of this meeting is that we will not be home for Shaun's birthday like we expected ;( But I do have a few things up my sleeve for hubby ! Also mum and I had the pleasure of meeting a beautiful three year old with a similar condition to JB. Three years after her procedure she was a very beautiful, happy little girl .

Earlier in the week we had a wonderful play date with Sasha one of mums teacher friends and her beautiful daughter, Pippa who played beautifully with much younger JB !  I hope Mumma Jude can have some play dates with Pippa in t he near future so she gets lots of practice in for JB !

This week has also brought quite a few visits to senior Joanie in hospital . A very upsetting time  for the extended family but comforting that she looks like she's making some improvements . JB loved seeing her name sake and Her great Grandma who an effect if the stroke now has limited speech could say "beautiful beautiful " when she saw her little great granddaughter .



Our new mates Sasha and Pippa

The stepping stones of the healing process

Friday morning JB woke up with her suture wound looking a bit tender and puffy around the previous problem site which had been infected . I rang PMH and spoke to our main contact Hayley who advised us to come into ED and they will get the Head of Plastic Surgery to check it out . She agreed it was better to be over cautious particularly with there being an infection previously after the insertion of the springs.

We didn't wait long before doctor Rob saw her and said he was glad we came in . He wasn't worried but said it was worth keeping close eye on the area of concern and gave me some strong antibacterial ointment to apply on it twice a day . Doctor Rob also gave us tips on what signs to look for with the wound to know when to bring back in .  The steps of healing with scars was also explained to mum and I which was very helpful . In simple terms the suture wound appears mostly white in colour after the operation as the blood vessels have been cut , the scar will then go pink as the vessels knit together and then the suture wound will eventually go white again once things have settled . Obviously me doing suture care with saline and the emollients also helps the overall appearance of the scar. I'm optimistic that Joanie's scar will not be visible at all eventually as it's a neater job than mine and the stitches dissolved where as I had old school ones that had to be removed ( I can remember them coming out yuck ! ) We were comforted to know Doc Rob was in at PMH for next few days should we need him .

Joanie has remained very happy and been having two day naps a day which shows this worry of her scar hasn't restricted her day to day development and activities at all . In fact my parents and I would go as far as saying Miss J has been a delight ! She has just started clapping and understanding when to wave not just doing it randomly ! Joanie also takes after her mummy and likes to play the drums !!

Can't wait to be reunited with Shaun who's been working non stop since he left ! Love you daddy mud crab !

Since I started writing this blog Joanie's name sake Joan Stanley has had a medical set back and is now in hospital , please everyone send her your positive thoughts for another successful healing process .

Belated Thankyous and fun filled play dates!

Monday Jb, Mum and I eventually got to deliver thankyou gifts to PMH and Ronald Macdonald House. Shaun and I were really impressed with the care provided to Joanie by the ICU and ward nurses plus the Cranio Department ( including surgeons) so I organised some gourmet cupcakes to be delivered. As the photos below show they had the nurse symbols and ward name on them. When I delivered them to the different sections of the hospital it was lovely that the nurses recognised me and were all very appreciative and asking after Jb.

Mum and I also put together a useful hamper for the Ronald Macdonald House, full of teas, coffees, hot chocolate, biscuits etc for the in house families to share. It felt good to return some love and thanks.

Now Jb is feeling a lot stronger and recovering well she's just started enjoying some play dates wuth some Perth Mates, Unfortunately I forgot to take photos of her having a blast playing with friend Brooke but have attached below some happy snaps of her with surrogate cousin Amelie and best mate Lucy.

Home made hamper for RMH and the gorgeous cupcakes for PMH

JB and her cuz Amelie,  what a beautiful sharing girl Miss A is xxx

Think this photo is incredible as it shows how bigger her eyes are getting and her midface smoothing out

Joanie and her BFF Lucy Hartley

Twinsies!

Fractional Birthday and Jb Mini Me

Thursday was Joanie's Fractional Birthday.....her 10th month birthday! What a lot she's been through! Four hospital stays (including her short hospital stay for her arrival) over ten flights back and fourth from Broome to Perth for appointments and procedures and many miles stones reached! We cannot believe how well the little trooper's recovery is going , her mid face is growing forward and catching up with the forehead before our eyes!! ( see below photos)

 

Joanie was on full speed ahead on her birthday, rolling non stop for over an hour - sometimes three or four commando rolls in a row before having a break. Still no crawling, maybe she will be one of those bubs who go from rolling to walking? haha

Her appetite continues to increase with  her meal sizes getting bigger and bigger , strawberries still remain her favourite though!

 

Jb's 10 month birthday also brought some special visitors including God Daddy Elliot who brought her first Aussie Music CD with many classics including her favourite song , Hilltop Hoods, favourite song, Cosby Sweater.

 

Miss J also got to see her Aunty Annie and special cousin Princess Zaylie who were also very generous and brought her a beautiful play suit that will be perfect for play dates with her gang in Broome. Miss J loved seeing her cousin in particular and couldn't keep her eyes off her!

 

Today (Friday) we went to the post office to collect a parcel again for the very spoilt Joanie all the way from New Zealand! Inside the parcel was an incredible hand knit cardigan , hat, gorgeous fairy costume and ......A JB MINI ME!!! Jb was stoked and couldn't stop playing with her first dolly! Thank you so much Bev and Graham and our New Zealand Family!

 

 Check out the below adorable photos!

 

Jb and her mini me dressed in matching outfits!!!

 

Jb is stoked!

 

You're very clever Aunty Bev, love Jb xx

 

I love my first dolly!

 

Ladies who Lunch

I think I may have watched my last Melbourne Cup after the horrible end to today's big race with the tragic loss of two magnificent animals, but, trying to put that horrible turn of events aside Joanie thoroughly enjoyed our home luncheon where Ju Ju  (Mum) made some tasty chicken and pistachio sandwhiches and trifle for desert and Vonnie, Mum and I shared a very fancy shmansy bottle of Chandon.

Ju Ju also put together a sweep and Jb minded Dad ( GG's) horses and she must of been good luck as two of them won first and second place. Again I'm feeling quite conflicted about horse racing as the lunches and fashions on the field are fun but I'm unsure if these races in entirety are really worth it if these beautiful creatures are in such high risk and are ultimately racing for their lives.

Perhaps in the future we will just do the hat parade and sandwhiches and not any gambling that is in support of such an event.

Joanie Belle is looking so much better I have put a photo from when we first got home to today and you will be able to see the huge improvement with her swelling and even her forehead is softening.

Enjoying our champus and Jb minding GG horses

Jb with the 1st and 2nd place horses

About three days ago

Today, look at how much more of her eyes you can see!

Passing with flying colours

Today Miss J had her first clinic at the Plastic Outpatient department and we couldn't be happier with how she went.

 

Mum and I had our list of questions for the doctors and they were quite helpful with answering them.

 

The Surgeons and Doctors were very impressed with her scar (thanks to my regular suture care) and how round her head now is on top and how her swelling is coming right down. They also explained that the front advancement will all even out when the mid face grows forward. and will give a softer appearance.

 

Funny story, at the hospital there were three young boys all running around the waiting room and one little boy came up to Joanie to say hello " Your baby looks angry!"  he said

"Really? Well she is very happy she just looks angry at the moment" I replied

So yes out of the mouths of babes that's how Joanie looks at the moment , a little pissed off, that's what happens when you have a heavy brow, I shouldn't make fun but mum and I say when she's a little irritable she looks a bit like an angry marmalade cat, but then when she laughs her beautiful blue eyes still sparkle and her four toothie pegs still smile up at you and the angry cat look disappears.

 

As well as a good review at the clinic Joanie has turned a corner with her sleeping, sleeping through the night ( sometimes waking only once or twice for a quick feed) and having 1-2 day sleeps. Its ironic that she's sleeping better this time round than compared to last time, perhaps as she's wearing herself out with the mending or her infection last time was making it hard to sleep? who knows?

 

Jb's appetite is also returning she's eating the same amounts of solids as before the operation and her head isn't too sensitive now for her to return to rolling around on the floor again.

 

We look like we will be back in Broome ) providing she continues to keep going well) in 2-3 weeks, another surprise bonus as we anticipated much longer!

 

 

 

 

History Repeating

As written about before Joanie unfortunately inherited Craniosynostosis from me. Joanie's condition is perhaps more severe , she was born flatter at the back of her head and shorter from the front to the back of her skull. In Joanie's recent surgery they have "advanced" her forehead which definitely was done to a more extreme nature than in my remodelling. Currently Joanie appears quite heavy at the front , however, this will soften in time as swelling decreases and her head grows normally. I've said previously this is purely cosmetic surgery, as her condition hasn't effected her eye sight, hearing etc and she's meeting her development milestones at a good pace. Saying its purely cosmetic isn't actually entirely accurate. Joanie has had to have surgery to also allow space for her brain to grow which is obviously of high importance. With my operation it wasn't stated I required it until I was four, despite numerous visits to highly qualified paediatricians who deemed me as an "extreme case of normal". I was very fortunate that my brain growth wasn't too restricted and my natural development hadn't been effected despite having the surgery much later than Joanie. Mum and Dad said that the Cranio Team at the Adelaide Children's Hospital remarked that had my condition been brought to their attention earlier I too , like Jb would've been operated on prior to one year old. The spring surgery that Joanie had in May wasn't available  in Australia in the 80's and the surgery I had is no longer done in one go as it's regarded too much for a young child, this is another reason why my swelling took longer to come down . I only required the one procedure , Joanie has had two and we are hoping that will be it , however, only time will tell and we have in the back of our minds that it is a possibility.

 

Until now I haven't really fully appreciated how much of a flashback  this has been for my parents or Joanie's Ju Ju and Gg, not only going through this once, but twice. It has brought back many, many memories  and despite Joanie and I not having exactly the same  condition it's only natural to compare . My Grandma, and Jb's name sake Joan Stanley was also with me in my time in Adelaide and I know she would if she could've been camped next to Jb's bed during her hospital stay too. If family could please share this blog with Grandma it would mean a lot!.

 

Shaun and I can't thank my parents enough for being so strong for us and happy faces for Joanie to look up to in many dark times when she has been in hospital .  It was lovely to share the recent opening of her swollen eyes with mum and her first suck as she finally breast fed after four days and Gg helping me with her first bath after surgery.  All important and special post surgery milestones.

 

I have put some photos below of myself and Joanie before, after and during our hospital stays. Also it's sad to know that photos of me immediately after my operation have been destroyed as at the time I was too embarrassed  and got rid of them, it's only now that I'm a bit older and wiser that I can appreciate these photos and be proud of them and  can appreciate what my parents went through with me .

Dad aka Gg taking me for a walk along the swan river when I was roughly Jb's age

Shaun and Jb at Eco beach before her second op,  see we have similar shaped faces?

Me at about 5 before my head surgery in Adelaide, surrounded by my Care Bears

Jb in hospital also surrounded by toys, some the original Care Bears who looked after me



Me photobombing the Care Bears photo



About six weeks after my surgery when I left hospital, as I was older it took a lot longer for me to be deemed fit to fly home and leave the hospital



Recovering with parents at my side, luckily Jb didn't have to have her beautiful hair shaved like me



With my parents and Grandma after the operation doing some sightseeing in Adelaide

The HIghlights, Lowlights and Recovery Time

It's been a few days since my last post as It's been a very full on time transferring from Ronald Macdonald House and PMH to our Perth Home.

 

Joanie Belle ended up staying six nights in Ward 6a after the one night in the ICU. Shaun was the one who got us that last night , they wanted us out on Tuesday not Wednesday however we wanted a bit more review time at the hospital for Joanie on the revised pain killers. We let all staff know we didn't want to get rushed after our last experience in May when Joanie had to be re-admitted for the infection on her suture wound, they understood and didn't rush us.

 

In reflection of our time at PMH and staying at the Ronald Macdonald House I have thought of a list of Positives/ Highlights and Challenging times/ Low Lights ;

 

Challenging Times/ Low Lights

 

• Waiting for Joanie to go into theatre , not being able to give her milk when she was desperately hungry and then the horrible wait of her coming out of theatre

 

• Seeing Joanie's face and eyes swell up drastically fast and seeing Joanie in pain and discomfort

 

• Having Joanie power spew on me , feeling helpless when we were advised it was from bad headaches from her surgery

 

• Having inconsiderate neighbours (a metre away, behind a curtain in the same room) who spoke to their children in a horrible tone , listened to tv really loud and then fell asleep without turning it off not to mention the late night facetime conversations on speaker phone

 

Positives/ HIghlights

 

• Being on the top of the list on theatre day so Joanie could  be priority and get out of theatre at a civil time

 

• Beautifully caring nurses in the team at the ICU , nothing was  a silly question and they were also very kind to me , ensuring I was comfortable when staying in the limited space next to Jb bed on that first night.

 

• After the first inconsiderate neighbour having a following two LOVELY neighbours who had similar aged patients and were very considerate private people and  made sharing a room not as awkward

 

• Incredible efficient, knowledgeable , hard working nurses who looked after Joanie in 6a

 

• Staying at the Ronald Macdonald House that was not only brilliantly located, had great facilities and wonderful people looking after us and other regional families who were going through challenging times. This stay  also  put things into perspective for us as many of the children staying at RMH had terminal illnesses yet kept very positive. Further on from this positive was the meeting of mining group FMG who totally gobsmacked Shaun and I with their generousity of their staff who gave up their time, money and expertise in the kitchen , cooking us gastronomic feasts nightly. Shaun and I looked at this mining group in a new light.

 

• The overwhelming, embarrassing yet touching generosity of friends and family ( you know who you are!!!)

Joanie is recovering well, each day loosing more and more swelling and opening her beautiful blue eyes more and more.  Joanie's bubbly personality is also returning, however, she's very, very, clingy at the moment and refusing to sit on anyone else's lap but mine. Hopefully this phase passes or I won't be able to do anything for myself! I will give her one more week of this ! haha

 

 

 





Jb not long after she first breast fed





 

 

Our poor ,swollen angel , not letting me out of her sight

 

Leaving Struggle Town

Just a quick post this time as I'm over tired and need some sleep . Yesterday was a VERY trying day and a doctor had said that if Joanie didn't breast feed by 5pm they would put the NG tube back in (can't remember if I wrote that she pulled this out previously and we were advised it would only be re-inserted as a last resort as its a procedure they try not to do to babies unless absolutely necessary)

 

Anyway Shaun and I had that possible procedure hanging over our heads all day and felt very anxious about it.. Jb was very unsettled all day thrashing around and uncomfortable from her severe head swelling. In a very fashionable manner Joanie leaved it to the last minute ( 4.50pm) Joanie took her first suck and breast fed. Three days ( not including operation day) is the longest she's ever gone without drinking milk. Mum aka Ju Ju also witnessed this and I cried with relief when she turned this corner. Also Joanie's eyes have opened! Only partially but such a relief to see her blue peepers shining through!

 

For those who asked if I saw any Telethon stars sorry I only recognised Kochie , bloody HUGE he was towering over this poor sick kid in bed , he's a nice bloke though and so are all those stars who gave their time! Also a big thankyou to those family and friends who have told me they have got on the Telethon Ban Wagon in tribute to Jb and all the kiddies who are requiring  the wonderful medical services provided by staff at PMH. As I've said before this money is VERY necessary to further develop medical treatments for our Kiddies and the Old Girl PMH just can't cope as well these days so all donations are highly beneficial.

 

Not such a short post after all, hope everyone is having a restful Sunday !

Kindness of Strangers

It's not until you are put in a situation like Shaun , Jb and I have that you really experience and appreciate the act of human kindness.

 

I remember my cousin Sacha writing of lovely gestures they encountered when Boris was going through the worst of his treatment in London at GOSH in her blog and after checking in to the Ronald Macdonald House we can now relate.

 

Ronald Macdonald Houses are all over Australia and available for regional families so they can have the facilities everyone takes for granted when they're away from home. We are lucky to have family in Perth but after our first experience with Joanie being in hospital it really isn't convenient to have to travel back and fourth into the busy cbd where there is little parking  and to be restricted to sleeping in an arm chair next to a very basic hospital cot 24/7. I love the staff at PMH but the old hospital itself is definitely on the way out and many are eagerly awaiting the opening of the new PMH.

 

Anyway RMH has been ideal for us , allowing Shaun and I to take turns going back and fourth to the hospital to be with Miss JB. I normally do night shift and Shaun more the days. Last night (Friday) Mum and Dad stayed with Jb whilst Shaun and I went to the RMH dinner which was put on by the mining group FMG. I will admit Shaun and I have always been pretty negative and black and white about mining companies but this group of workers who put on our dinner were some of the nicest people we've ever met. They created an Italian Restaurant called "Salute" and put on entrée, mains and desserts , many of them dressing up as Mario and Luigi. They made delicious dishes like mini chicken parmiganas, pizza, lasagne, eggplant bakes, mac and cheese, salads, I even got an affogato for desert! FMG has over 15, 000 workers and 181 of them work in a community committee that does things like cooking for families at RMH. They also had a competition amongst themselves on who cooked the best similar to MKR, we all were given score cards and I wrote lots of feedback and added it to their ballot box. FMG has been cooking for RMH for all of October  and they donate all the food and I was impressed to hear they also are big donators to the new RMH and have provided a HUGE amount of proceeds to the building of it.

 

Telethon Weekend starts tonight, I know there has been many worthy charities to donate to this year but if you haven't exceeded your yearly donations put a few coins towards Telethon as without the support from generous Perthites and companies such as FMG treatments such as Joanies and facilities like RMH wouldn't be available.

 

Hey Zac! I know you ring up for donations, why don't we set you a challenge to say hi to Jb , Shaun and I when you ring up this year?

 

 

 

 

JB champion effort

Yesterday Shaun and I , Mum , Dad and patient Jb went to PMH at 645am , JB had to fast and then went into theatre at 930. Shaun was brave and took her into theatre to be placed under the gas mask.

 

The surgery was EPIC and she wasn't out till 4.30. The team were all very happy in how she went. She had a blood transfusion and  they were able to do "remodelling" of her skull as they intended.

 

Its a very trying time for us as it's hard to see what they have done as a positive thing until her swelling comes done. Also ALL of us were very shocked when she returned to see how much her forehead had been advanced. I'm sure this will all even out in time, as mine did after being operated on , but its shocking regardless.

 

Jb looks like at this stage (Thursday as I write this) that she will have to stay in ICU again tonight as the pain isn't controlled all the time and she does get quite unsettled. We all think she's a bloody legend as I think most adults would be complaining a lot more if they had their skull operated on as hers was.

 

I'm longing to feed her properly instead of through a tube and see her open her eyes and give me one of her famous cheeky Jb grins.

 

Thanks to everyone's support,

The little troopers day has come...

Its been a few days since my last post as its been pretty full on here in Perth. We have managed to fit in some lunches with grandparents and great play dates with Daddy when he got in on Sunday night.

Yesterday Joanie Belle had her pre op tests and she was sooooo good. She had her blood taken, standard and 3ds photos shot and we had our orientation /break down of the operation. Mum , Shaun and I were very saddened to hear there may be a chance of another operation after this one if the back of Jb's head doesn't round out naturally. The procedure tomorrow is focusing on the removal of the springs and reconstruction of the front and top of the skull. I hope another operation isn't required but Hayley (

The Cranio Surgical Nurse) thought it is best we prepare ourself for the possibility of further procedure/s so there isn't any anti climaxes later. We're not trying to focus on that horrible thought and concentrate on the here and now.

Think of little Miss Jb tomorrow at nine am when she goes into theatre;

Cat in a Hat? or in a Cat Hat?

Miss Stanley and I arrived in Perth  before 9pm on Wednesday night. Her poonami phaze appears to have passed which is good but I have since learned that the night flight no longer works for her. When younger the 620 flight was ideal as she would sleep the majority of flight but now she's older there is too many distractions and she can't sleep, well she may but it will take ages to find sleep and sometimes after quite a bit of crying. Unfortunately Jb was quite unsettled for the 2nd half of the flight and I knew others noticed when a little girl said "Mummy that's the baby that was making all the noise!" Doh!

 

Thursday we had the pleasure of having a wonderful lunch with our dear friend Sue and the handsome Ben at Voyager in Sorrento, again Jb was a little unsettled at first but once she was propped inbetween Mum and Judema she was happy playing ladies who lunch. After lunch we saw Auntie Jani who was very generous with a hand picked show bag including a very cute Cat Hat Beanie.

 

We are trying to have a fun few days before next week hospital visits start.

Sue and Jb , lovely cuddle time

Joanie Kitty Cat Stanley

Jb's fun filled stay at Eco Beach

Monday we took off for our over nighter stay at Eco Beach and boy oh boy did we STM  (Stanley talk for Suck The Marrow out of life).

 

Shaun and I were a bit frazzled over half way to Eco Beach as Joanie couldn't get comfy and cried most the way; funny thing is she fell asleep as soon as the sealed road ended and we got on the bumpy pindan. We checked in early to our Eco Tent wanting to try out their "glamping" option. It was basic but neatly presented and luckily Monday and Tuesday was cool so air conditioning wasn't missed. After getting settled I took Jb for a swim in their infinity pool and she loved it so much we swam for over an hour!! Daddy was supposed to meet up with us but he was soooo tired after fishing and packing the car and then driving us he conked out. After Shaun's well deserved nap we went for a walk on the beach , trying out a trekking baby carrier we had acquired, Joanie loved it but fell asleep in the last 10 minutes of the walk. Monday evening the three of us went to the restaurant for dinner and we were very impressed with our dinner and our little darling who sat and watched us eating and after we finished our meals her eyes started to get heavy and we came home and crashed. A lovely waitress who remembered us from last time was so lovely with Joanie and kissed her hand and wished her the best for her upcoming hospital stay.

 

Tuesday morning we took Miss J on a walk to the caves, setting off at morning break we got back after two hours enjoying a wondrous walk along the coast and checked out some awe inspiring caves. Jb had an ocean swim with me and then a frollick in the pool with both mummy and daddy. No wonder why she slept the entire drive home ( over 1.5 hours)

 

I forgot to mention we had exceptional service. Some staff who remembered us from our May stay and when heard of the challenging time Joanie has been having presented us with a voucher for a free night stay . the voucher is valid for a year so we will look forward to staying again when Joanie is fully recovered.

 

We highly recommend Eco Beach to any Broome locals or visitors to Broome.


Mums and Bubs

Saturday I met with most of the mums and bubs from my mothers group (and some of the lovely hubbys too) at Entrance Point . We met for a sunset soiree to toast Jb and her operation with a bottle of beautiful CHANDON. 

 

It was beautiful to see all the bubbas enjoying the magnificent beach outlook, they were all so well behaved and Jb loved playing with them all.

 

We were having such a great time I totally forgot to take photos *face palm*

 

I can't wait till the operation is over and Jb is well enough to return to Broome and play with the gang of bubbas she's become so fond of ( and goes without saying the mums are bloody legends!!)

Blood Moon or Moon of Cheese

The Blood Moon was the other night so I thought being a red moon and Jb having Red hair may mean return of "Red Gone Wild!" but I discovered she went crazy not for the moon but today for Cheese....so maybe the moon when made of cheese will make her go loco? Now I'm sounding crazy
and I can't put it down to not enough sleep as little one is having the occasional nap now which is good. My friend Sylvia thinks that perhaps I'm getting too much sleep now? Never too much sleep!! Never!!

 

We are looking forward to seeing Daddy tonight, hopefully with heaps of fish, please everyone cross everything!

 

A photo below of the crazed cheese eating creature!!