More distractions

My last hospital distraction is the French Navy designs and blog. Thank goodness for iPads.

Back to Banksia

It's been a while but we are back. Had a better nights sleep and little one is looking so much brighter. Waiting on blood culture results and on some antibiotics but the temp is down from 38.6 to low 37's.

I am feeling very grateful today... Little one is amazing!

I am being distracted... Thanks to Veggie Mama choc chip banana porridge. I had promised the boys her fluffy choc chip pikelets for afternoon tea, but they will have to be patient with us all over again and wait until we are home. The pikelets are a definite favorite in our house.

Very quiet day

Doing some quiet garden work (and of course creon - pancreatic enzymes). Big and medium ones are out with the handsome one for the afternoon while I get to keep the pain relief and sleep up to the little one.

 

Home (hopefully)

We are waiting to be discharged from PICU to home. We need to see our respiratory doctors to confirm his oxygen requirements and then fingers crossed, next stop... Home. Dr Brain the size of a planet (our amazing oncologist) is happy, so I am reassured and happy.

Little one has a sore tummy from the peg insertion and a sore throat from his scopes. But becoming a bit bossy so I know he feels better.

'Our strength grows out of our weaknesses.'
Ralph Waldo Emerson

Tiny Buddha

Location:RCH Brisbane

Strength

Strength does not come from physical capacity. It comes from an indomitable will.

Mahatma Gandhi

 

So excited!

Peg day tomorrow.

http://en.wikipedia.org/wiki/Percutaneous_endoscopic_gastrostomy


Little one also has a bronchoscope, airway balloon and grommets in! I am looking forward to our beautiful doctors thoughts on how he looks on the inside compared to last November.

I think his airways and lungs must have improved because he doesn't sound as though there is a steam train coming down the tracks when he breaths and his breathing rate is decreasing every couple of months! We started with a respiratory rate of about 90 per minute and we are now down to about 40 to 50!

Fingers crossed and I'll update tomorrow when we are out!

 

Another day, another ng tube

The stronger he gets the more determined he is to pull out his tubes. We have only recently learnt to put his ngt back in, my husband learnt first and then taught me... I find it really hard and completely distressing. It ends up both little one and I in tears and our bigger boys wondering what is going on. We have little ones gastro peg being inserted on Wednesday. We are very excited and I can't wait to clear his face off and let it recover from 14 months of tapes and tubing. That boy is amazingly patient!

I need a holiday

I need a holiday from washing... I know that I need a break when I am getting annoyed at washing. I find washing therapeutic, a time for me to hang clothes out in the sun and not think about anything but matching peg colours and listen to the birds (and planes!). It is my escape and strangely enough I do enjoy it... But for the last week I have had enough. Maybe because the sun has not been out much and a few days have felt very London like, reflecting my mood maybe. But a bit of sunshine, salt water and sand is in order!! Even if it is only in my head.

Thought for my day

In order to be irreplaceable one must always be different.

Coco Chanel

http://www.chanel.com/

Little ones flying machine... The Wingbo

We have an amazing physiotherapist, they always lend us new equipment to use for little one.

The latest edition to our loan collection has been the wingbo. Apparently it is not very well known in Australia, but little one is loving it!






The wingbo allows him to kick his legs to swing himself and the freedom and supported strength to be on his tummy without too much stress.

I don't know if they are available in Australia, but what I can find about them online they are a bit expensive. So I am hoping to keep it as a loan from our Physio for as long as we can! It has been such a great support for little one's low tone and neck muscles.

If here are any suggestions out there for other exercises and equipment for low tone babies, I would love to hear them!

Enjoy your Wednesday!

Posted by Ellen Greer

Quiet afternoon

While the big boys are camping for the weekend, little one and I are enjoying our own definitions of a relaxing afternoon.
Mine...





Little one's...





Enjoy your Saturday afternoon.

Our new kind of normal...

This is my first post... I am very excited, a bit anxious but looking forward to sharing our story so far. I have been thinking about this blog for the last year and now I am doing it!

Our third son was diagnosed with Shwachman Diamond Syndrome when he was four months old. It has been an overwhelming year to say the least and our record at home with him is 7 weeks in a row, so the hospital has been our home throughout 2011 and 2012.

We have been surrounded by the most incredible doctors, nurses and allied health professionals and I can honestly say that he would not be with us today four times over if it were not for them (and for his strength of character of course)!

Our boy received a bone marrow transplant in late 2011 and is slowly growing into his new health and strength. We will be forever grateful for our unrelated international female donor for her gift of life for little one.

I hope to share our adventures from now on, what we are trying for our little one to energise his body and strength and how we are settling in to our lives with the little one at home (at last).