Thursday, 21 June 2012

"faster and high in the sky"

Home has been fabulous.  Loads of giggles and fun have been had.
Allegra and I have settled back into home with ease.  Mar Ma has been a wonderful help and great company to me.  I used to envy Mum coming home from the hospital of an evening, I wanted to be there with her, enjoying our girlie shows together over a glass of wine and home cooked meals.  Well we are making up for it now.

We have spent our time going for short walks to the park.  Allegra has been going on the swing and going "faster and high in the sky".  The laughter is infectious and so wonderful to hear.  Who would have thought over 6 months of not swinging would bring so much long awaited pleasure.  We have had our first "toddler tantrum", when it was time to leave the park.  Not nice, but normal, huh?

Allegra has been enjoying food, trying lots of different textures and tastes.  Her favourite foods are Tahini, Avocado, Chicken, Rice and of course baby chinos.  The staff at Dench Bakery are happy to have us back.  There were many tears and my little Allegra had not forgotten to ask for her coffee (chino).

We have had and do have regular visits to the hospital for Physio, Plastics Clinic and Day Oncology.  Allegra has surprised the Physiotherapists with her ability to crawl, pull herself up and learning to weight bear with flat feet.  Plastics was great news for us, her wound is doing really well and at this stage there is no more dressing or skin graft required.  What a relief, no further surgery and no admission.  We are at Day oncology for her line dressing changes and weekly blood tests, which have been good results.  Allegra has put on 200 grams and is tolerating her nasal gastric feed.  We are booked in for a bone marrow biopsy on Thursday and fingers, toes, arms and legs crossed for a continued remission result.  I am slightly worried as Allegra has been saying "sore legs" at night and this brings back terrible feelings and worries as this is what she was complaining about back in November when this nightmare started.  Unfortunately there has been a tummy virus and a lot of kiddies in Day Onc are sick, so if one gets it they all get it and my little Allegra has got it.  This only happens to the kids that are immune deficient.  They do spend many hours still in hospital together as out patients. It is also lovely to see lots of the other kids in Day Onc doing so well.
We are devastated to hear the passing of a few kiddies that we have spent time with and their families in the Kookaburra Ward.  Their lives were way too short and it is totally unfair.  It is saddening to know of our other friends being re-admitted for relapse and heartbreaking to know of our dear little Minni in ICU on life support.  Our sincere wishes, dreams and hopes that you all get better soon so you can live out your dreams and enjoy the simple things in your lives.

Allegra has been enjoying baths in the lounge room, watching Kids Shows or having books read to her.  Very luxurious.  This is a massive milestone as my little Allegra is very insecure about being bare, exposing her lines and wounds.

She also feels more secure while in the pram with sunglasses on, blanket on, hat on and pram hood up.  My little Allegra is like a princess hiding from the paparazzi.
                                                              Hiding from the paparazzi

We have had Allegra's BFF's (Ashika & Bodhi - BoBo) over.  These three gorgeous little ones have not seen each other for over 7 months.  They played beautifully together and accommodated Allegra's feed bottle, carrying it for her as she crawled around.  It's a shame I didn't get a photo of Ashi with Allegra but the gorgeous memory is imbedded in my head and heart.  Such warm feelings of our life getting back to what it was pre-illness. The kiddies playing and Kirky, Indu, Troy and I catching up on where we left off.  Love love love our times together.

Allegra now has a toy box which is loaded with toys which she gratefully received while in hospital and for her 2nd birthday.  Money was given to Allegra for her birthday so we could put it towards a toy box..Our family and friends showered her with gifts and now she is well enough to really enjoy playing with them.  Thank you to everyone that has contributed to filling the toy box.  We had lots of fun putting the box together and Allegra one by one put the toys in.

In a nut shell our home life is wonderful with no routine, no crowds and my baby back in my arms demanding skin contact, sleeping right on top of me, me not out of her sight, not talking to anyone, totally physically and mentally attached to her mummy and being at her 100% beck and call.
little fingers crossed

1 comment:

  1. It's so beautiful to see you all at home and for bodhi to spend time with allegra again..... You are right it is the simple things like chatting in your lounge enjoying a yummy coffee you have made that was so greatly missed these past months. Here's to many many more days like that!!!! Xxxx love dudu, bobo and Troy.