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!!
 

 

 

 

*singing* Eco Beach far away in time......hmmm not that far after all!

We have now  got something to look forward to , two days and one night at the luxurious Eco Beach next Monday. We went before Jb's first procedure and she loved the water and we loved the facilities.

Jb also loved the properties gardens. This time I will remember to bring her carrier so we can do some of the lovely walks around the retreat. can't wait!

 

Today Joanie has been helping me tie up loose ends before we fly down to Perth. today we had a physio appointment at the hospital and Ally the physiotherapist was happy with her progress. This was good to hear as I've been a bit concerned on her delay with crawling. Ally assured me that she has all the pre cursors to crawling and her hospital treatment shouldn't push her backwards now she's a bit older.  I must admit she has come a long way from when she first went to Ally and could barely do tummy time for longer than a few seconds now she is rolling all over the place and can sit up nice and straight.

 

I must remind myself "Patience is a virtue".

 

Special shout out to my uncle Lozza, Kym, Annie and Melita in the team "What's Up Doc" doing a 100 km walk this weekend fundraising for OXFAM I would love to do it next year if any of them want to go again.

Jb and I enjoying the infinity pool at Eco Beach last May

Wednesday is brought to you by the letter "W" and Mr Wacky and Wondrous Watermelon

Shaun and I agreed that he should try and catch some fish for us to donate to the Ronald Macdonald House where we will be staying from the 22nd -28th October so he took off with Uncle Jeda this morning , fingers crossed they do well as this will more than likely be Shauns last trip to Derby for a long while as when he gets back it will almost be the Wet Season and then will be too hard to get to their special spots.

 

Joanie and I hopped in Eddie the Mazda this morning and went to OUR favourite beach spot, you can tell Mumma Bear doesn't know the tides like Dad as the tide was right up and our special spot to sit wasn't there plus the water was very choppy. so we sat with the car windows down and enjoyed the sea breeze and some breaky we got at our favourite Breaky Drive Through "Good Cartel" ( they should pay be for advertising).

 

In the car we found Mr Wacky , Jb's favourite toy a gender neutral hammer that I thought had carked it and no longer made his annoying yet appealing to a baby squeak.....MR WACKY WAS RESURRECTED and started squeaking again to my and Jb's amazement. Jb wouldn't stop hitting Mr Wacky repeatedly on her car seat and continued to do so whilst eating watermelon when we got home!  Happy Days!

Hope everyone's hump day is going well!

Looks like it is really happening ...

Weird how it just takes a set of documentation to strike a chord with you that something really is going to happen. We just got the admission paperwork for Joanie's operation and it has made me feel very sick to the stomach. They have put an estimate of seven days for the stay but I think that's being optimistic. Maybe I'm just a bit cynical or maybe a better word is "realistic" after last time that this kind of surgery has a strong chance of leading to infections after due to multiple broken bones and movement. As the wound is near to the brain they don't rush patients out of hospital until they're very assured suture wound is healthy and healing and the patient is demonstrating healthy behaviour, same goes with our flight back, Jb wont be fit to fly for quite a while after I imagine. Hopefully Jb and I will be back with Shaun for Christmas as unfortunately he wont be able to stay with us for the entire time as someone has to earn some money!!

 

Sorry this is not a cheery post I will endeavour to create a happier one tomorrow!

 

 

Nine in and Nine Out.....What an EGGSELLENT reason to celebrate!

Today Marks Joanie's nine months birthday, she's officially been out in the real world nine months now plus the nine months she was baking so Shaun regards her 18 months :)

We didn't really do anything very exciting to celebrate however Joanie didn't want to miss a moment of it and hasn't had a day nap (not including a 20 minute milk coma) which is a shame as she's been averaging a morning sleep in and hour and half day nap the last four days. Hopefully she goes to bed early tonight!

She did however, have a first today and that was eating her first boiled egg. I did give my uncle a preview of this photo to be cheeky as he hates eggs with a passion.

 

All the best for the new week!

 

 

Broome Baby Showers

 

Miss Jb and I had the pleasure of going to a baby shower yesterday morning. I was so proud of our little darling as she sat in her pram most of the party, exceptionally well behaved,  while mummy and Auntie Tawna joined in with the games. The invitation had asked us to wear pink or blue so little one wore her blue tu tu .

 

It was a wonderful party , almost as good as the one Kymmie and Jo hosted for me in Perth before Jb's arrival.  It made me reflect on all the milestones we have already reached as tomorrow will mark Joanie being in the big world nine months. That will mean she was baking for nine and out for nine, what a blessing!!

 

 

 

All fun and games...for now.

Technically this post should have yesterdays date on it but I've been a bit busy (pretty normal for any mum I'd say) and haven't had many chances to sit down and type.

 

Shaun always comments that Joanie "has really come alive" these last months, her little personality has really been shining; we've noticed she's very determined, stubborn  and has a great sense of humour. Joanie can be very strong and rough  one minute and the next minute be very gentle and loving.

 

Here are a collection of  photos really demonstrating some of Jb's funnier characteristics;

 



"Mummy is that Yoghurt...you know I love it!"

"! I wannnnit!! Now!!"

"Uh oh ! Not on me!!! In my tummy!!"

"ILL BE BACK!!!"

 

Broome Beach Bubba

Another thing I've made sure Jb and I do as much as possible before we leave for Perth is go to the beach. We have found a lovely spot at Entrance Point  which is well shaded  and the water is mostly very clear and calm and warm enough for us both to frolic. We have been going there every Friday for the last three or so weeks with my friend Sylvia and her little boy Richie.

Jb had her first oceanic experience at Eco Beach last May before her first hospital visit, we are thinking of going back there for a few nights on the week before Jb and I head down to Perth. Its a very peaceful place where we can all collect our self, relax and prepare.

The little Tassie devil in a different habitat!

Jbs' little mate Richie having an awesome time!

What a dude!

Earlier in the year at Eco Beach having her first ever Beach outing and swim

Pinch and Punch for the first of the month!!

First of October and we are getting more and more nervous as it's now under a month until the big operation. As always we are trying to keep a happy atmosphere for Joanie so she doesn't pick up on any anxiety or negativity.

 

Little Miss Tassie Devil is very reluctant to have day naps, apparently I was the same. When she was a very young newborn she used to fall asleep any where and everywhere. Some of the mums in mums group commented how "chillaxed" she was falling asleep in the middle of a rug of other crying bubs or sitting on my lap. Those days are gone !! Jb is good with night sleeps and sleeps through most nights, only waking occasionally for feeds if she's going through a growth spurt.

I am in the process of trying to get stricter with day sleeps and put her in a dark room, in her grow bag in her cot at set times every day  hoping that a routine will occur. Sometimes routines go out the window when you have functions or appointments. The funny thing is if we're in transit somewhere, either in a car or her pram she often falls asleep, must be the motion, I do count those naps as day sleeps, only thing is I can't rest when she's resting as I need to drive DOH!!

 

Mum often told me as a bub they called me "the tooth" as I ate anything offered to me, well I think Jb is taking after me !!! I have just started her on steamed broccoli and she also loves steamed carrot and mushrooms and beef from beef hot pots that I make in the slow cooker. She just sucks on the tender morsels of beef  until there's little left. I've learnt its often a good idea to give her a bath after as she REALLY enjoys eating and as they often say when eating at a chinese restaurant, you can tell if you've enjoyed the meal if foods all over the table!

 

The first of October is Nanny Karen's birthday, how we wish we could give you a personalised kiss and cuddle! We are hoping after this whole ordeal we can have a family reunion in the Goldcoast March next year if the little trooper is fully recovered.

 

I hope you enjoy these photos of Joanie feasting on little trees...