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