Pippa Rea

This post is particularly for my children – I have been told off tonight for not posting anything for a while!  The truth is, I have been exhausted and I couldn’t be bothered turning the computer on.  In fact, so exhausted that yesterday I had to say no to going to Pink!  Oooh, it even hurts to think it, but Pippa was so tired and I was barely able to comprehend my own thoughts (sometimes that would be a good thing at the moment).  I simply would not have done the tickets justice and I am very glad for who went instead of me – I hope you all enjoyed the show.

So, for my darling boys who are at home, and for my Pippa who wants to share a couple of this week’s fun things, here’s what we’ve been up to…………..

On the weekend we said goodbye to our beloved Chelsea (Pippa had such a fun time at the party) who is going off to follow her rowing dream in the US and come back a bigger champion than what she already is.  We had such a fun but relaxing weekend without the long drives – it was great; our second home.   Pippa also had another game of glow in the dark mini golf with Phoebe (photos are pointless).

On Monday we watched St Joey’s win the school footy Grand Final and visited a friend in hospital.

Other than that a relatively quiet week –  a dinner out and some board games.  Today the staff at Peter Mac started to make a short movie for Pippa as a keepsake.  She and Elly are writing their own background song (changing the words to Mylie Cyrus’ Party in the USA) for it and clothes were chosen and hair styled especially for the occasion.

This evening Pippa and I went to see the movie “Now you See Me” at Gold Class, Jam Factory.  Great fun movie and I hope that our own magic can be created in time.  She loved the Gold Class experience and we think we might treat the boys next time they come down.  We have had a little giggle tonight as on reflection I have realised that perhaps the staff may have been a little overwhelmed by an above mentioned celebrity who I now realise is being “guarded” by her minder in the background as I unknowingly snapped a photo of Pippa for our own purpose to create our memories.  Mistakes happen, we ended up being taken to the (very) wrong movie in the wake of someone else’s entourage.  All was fixed in time for us not to miss the correct movie and I must commend the Gold Class Jam Factory for their above excellent handling of the situation.  As far as I’m concerned it has just created another story to tell on our journey.

We have also continued to enjoy the cafes and lovely surrounds we have nearby and are very grateful for the accommodation we were able to obtain.  It turns out that by not having hospital accommodation available to us at the start we are much better off being in a “non hospital” location.

A drink before going into Gold Class

The victorious St Joseph’s Footy Team

Always a hug for Danielle

Bye Chelsea, miss you x

Snuggled up for a pre party nap on the outside day bed

Cow Onsie

Scooter riding with Nan & Tony

The view from our lounge room

I have been on a very steep learning curve and I by no means profess to be able to keep pace completely with what is going on in our lives.  What I know is that medically, our options are what they are and Pippa’s doctors are treating her individually at the highest level of knowledge and research possible.  The other thing I know for sure is that this treatment is concentrated inside her brain – inside the very inside of the part that controls the central nervous and cognitive systems of our body.

Apart from supporting Pippa and being the most positive influence I can on our family, I truly believe that this time and in the next few years ahead it is vitally important that I help stimulate as many parts of her brain that I possibly can.

Currently our week includes music therapies from two different therapists, yoga, reiki and French lessons.  In addition, Pippa uses many items from her suitcase full of goodies and also plays a variety of games and board games that require strategy, concentration and memory.  Each of these activities is not only fun and enjoyable for her, but also imperative to keep her brain active, and her cognitive development aroused.  For all of us parents who “lose it” over the time our children spend on iPads, some of those games are also important for hand/eye speed reactions.  Who would have thought I would ever say that???!!!!

We plan to continue with these experiences when we return home and will  also combine them with our next phase of treatment.

As is always the case with whatever Pippa tries, she takes to it like a duck to water and is so good at everything:

Music; singing, percussion, lyrics – she rocks it all!

Reiki;  she completely relaxes and opens her mind.

Yoga;  loves it and her balance and capabilities are amazing.

French; ………well, we both try to learn……..one of us is doing tres tres bien (very very well), the other of us is a bit more comme ci come ca (so so).  In fact, to put it bluntly, one of us spends most of the lesson trying to keep up – and I’m being well and truly left behind!

Yoga with Patricia – awseome balance Pippa

Music Therapy with Sarah

French with Claire

Reiki with Clive

Music Therapy with Elly

There is honestly no stopping Pippa.  She has at least a  2 hour  sleep everyday, except I’m not exactly sure whether it is to rebuild her cells or to reinvigorate her social life?

This weekend she has had a “3 hours of fun” friend’s birthday party on Saturday, dinner at the umpire clubrooms on Saturday night, ten pin bowling and lunch with James & Patrick, Nan and Tony and all her cousins on Sunday and then as I’m tucking her in for her afternoon siesta she suggests that as we haven’t actually seen much or our neighbours lately and perhaps we could have drinks with them when she woke up???  Drinks turned into dinner combined with many giggles and games.

She is simply amazing!  She recognises her need for sleep, works out whether it needs to be “pre or post” social commitments, happily jumps into bed every day (no different to when she was a little toddler) and combines it with the right amount of energy to ensure she also doesn’t miss out on a minute of fun.

Pippa is true to herself every minute of the day 🙂

I was told by my very, very dear friend whom I love, admire, respect and trust that this period in our life is the opportunity (despite the effort and thoughts in doing so) to create beautiful memories.  Last night we did just that.

When we first started driving to RCH we kept noticing big billboards with the head of a beautiful white horse and the word “Cavalia“.  Eventually, we connected the billboards to an enormous white gracefully summited marquee off the Bolte Bridge at Docklands and knew there must be something magical inside………

With a special group of friends and family (11 of us in total) we sat four rows from the front at Cavalia in wonder and amazement.  The spectacle of 48 majestic horses entranced & mesmerised us while 36 acrobats continually took our breath away.  It was like nothing we had ever seen before and to watch the joy, awe and excitement on Pippa’s face literally brought me to tears.

http://www.cavalia.net/en/cavalia-show/videos

The title of this post should have been, “A Frantically Busy Week” or “The Boys Came to Visit” or “24 Hours of James & Patrick”, but no, a funny thing did happen in Faulkner Park.

We have had a huge week trying to fit in everything from treatment appointments, doctors’ appointments, therapies, exercise, sleeps, coffee and of course just the right amount of wine with girlfriends to keep me sane!  It has been frantic (not the coffee and wine parts) to say the least and I have not even opened my computer once.  I have, however, switched into “work mode” to make a couple of alterations to our schedule (thank you Peter Mac for understanding) and from next week our routine is set and I will be completely organised and back in control of everything (that I can be)!

James and Patrick visited on Wednesday for 24 hours and in true boy style they were intrigued with everything that was involved in Pippa’s treatment – they participated in her music therapy and made sure they tested out as much of the equipment as  possible!  It was so important for their understanding, but also for Pippa, to have them spend time with her experiencing her treatment.  We had some family time, caught up with friends and we all went to Faulkner Park to check out Pippa’s brand new, very cool scooter that she and I went shopping for earlier in the week.

Of course, the second we entered the park Patrick produced a long punt of the footy that is permanently attached to his arm.  Who would have thought it would end up in the top of a tree????!!!  Hmmmm……..

Patrick climbed, I advised, James threw sticks and Pippa giggled.  The tree was not conducive to climbing so Patrick’s attempt did not result in enough height.  James was persistent with his sticks but I thought shaking a branch kind of in the vicinity of where the footy was might do the trick………….

James eventually managed to get the footy out by throwing sticks.  I, on the other hand, ended up with the branch coming off in my hand and the attached ‘limb’ landing on top of my forehead!  I’m not talking small either, the limb broke away from the trunk, hung for a few seconds and then fell smack on my head as I turned to look up!   Pippa was heard to comment through fits of giggles, “Mum, anyone would think it was you on steroids pulling down that big branch!”.

Now, for anyone reading this who works with me during September and knows of my protective nature toward “Park Elms”, my instant reaction was to look around for any witnesses (particularly those in white utes), drag the limb to a “windswept” position,  pretend as if nothing happened and ensure there was no photographic evidence in existence.  (By the way, I have not done that before.)  The only witnesses turned out to be my hysterically laughing and oh so concerned children and friend along with a man walking his dog who was clearly going to get excellent mileage for the rest of the day!  How those people on Funniest Home Videos know to get ready to film in advance, I have no idea.  What I do know, is if we had, we would win hands down!

Laughter is an important part of our lives.  As a family the four of us have always had a lot of laughs and fun.  I’m thrilled that a great deal of enjoyment was gained from my expense – Pippa was doubled up barely able to stand!  A rather large egg on my head was a small price to pay for a story that she has giggly retold many times.

Who says you can’t have chocolate mousse for breakfast?

Dinner at Stavros Tavern, Albert Park (Greek restaurant) – Patrick and Charlie entertaining us

Ensuring Pippa’s machine is up to scratch

No Patrick, it’s not a fancy dress party

Pippa very happy with her brothers walking her through to treatment

Scootering Through Faulkner Park

The Footy, The Tree and The Limb