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