A Good Year

This time last year Elijah was being administered with a new chemo drug after having the allergic reaction to the first drug of choice.  The night before I had turned my back on the perfect view of the sky tower and the new years fireworks and tucked myself in tightly with my close friend, self pity.  It's a complicated matter giving a child extra hydration (water) who has no natural means of regulating their own fluid balance (diabetes insipidus.)  On paper Elijah was doing so well and was being congratulated by the well meaning endocrinologist (hormone specialist) on the other end on the phone.  But they weren't there changing the full nappy every 30 minutes and giving their child litres of water to drink listening to the monotonous grizzle.  In my book Elijah wasn't doing well at all and that's why we decided to stop the chemo.  The thought of repeating that procedure every 6 weeks for 9 months was too much to bare and so it's been one year since we finished chemo.

A lot has happen this year.  Elijah is doing so much better than we ever thought he would, he can now say over 30 words.  He had his port removed and his MRI from a few months ago showed a reduction of the tumour in up to 1/2 a cm which I've decided is a miracle as this is the first time it's ever happened and with no apparent explanation!  My older brother got married in August, another miracle, nar, just jokes Chris! We've had a new diagnosis of Hypothalamic Obesity from the endocrinologist which to put simply means he's obese due to brain damage in his hypothalamus region, which is very central and right next to the pituitary gland which has also been damaged, this is the body's hormone centre.  We have also had two different doctors tell us that Elijah probably does not produce any growth hormones which means he can not only grow too big but he could hit puberty at any stage!  We have been told that the growth hormone replacement medications are extremely expensive (so not many people get them,) and they can sometimes aggravate the tumour into growing again!  No thanks!  Elijah continues to be dependant on 4 medications:

DDAVP, a nasal spray given twice a day for diabetes insipidus, controlling urine output.
Hydrocortisone, given three times a day due to not producing any cortisol.
Thyroxine, given once a day due to no thyroid function.
Melatonin, a natural sleeping hormone to help him sleep at night.


Ok, so you might not be interested in all that but sometimes people ask me about it so I thought I'd just put it out there in case you are interested.


Now onto something a little more interesting!  Some photo's I've collected of Elijah over the past few months to show you what he's been getting up to:)

Say cheese! - September 2011
Elijah still not walking yet but doing some good standing!

Elijah at one of his weekly swimming lessons.  June 2011.  He can now walk all by himself in the water!



Story time with Grandad on holiday, July 2011.

Elijah's feelin the Rugby World Cup feaver!  September 2011

Hilarious!  Couldn't figure out how to get it the right way up though.

Lil' eskimo.  -September 2011

Elijah's first Guy Fawkes night.  November 2011.

The girls enjoying guy fawkes.

This hill is steaper than it looks.

Merry Christmas Elijah... enjoying his new sandpit!

Boxing day with Opa's shoes.

Christmas Eve at Browns Bay, 2011.

Rylie and Elijah, Christmas day.

We have had some tough times this year too aggravated by lack of sleep and the usual challenges that come with raising 6 kids (AKA character growth.)  Looking back 2011 has been tough but it's been a good year overall and I'm thankful for it.  I was reading through some old letters a while ago and came across a letter I'd written to God when I was a teenager.  In the letter I asked God to send me trials so in turn my character would be strengthened and I'd be closer with God.  I laughed at my stupidity and at the same time thanked him for answering my prayer.  With the journey we have been on with Elijah I literally feel like I've been to hell and back and can sometimes feel thrown back there by a haunted memory but had I not been through it all would I really appreciate what I have today?  Me and the kids wrote down a sentence or two about something that's special for us in 2011 or something we're thankful for in 2011 and I'd like to share them with you...

I am thankful for Elijah. I am thankful  for you Jesus dieing on the cross. Thank you for creating me. I love you Jesus.
-Rylie, 8 

I asked Jesus into my heart and asked for Jesus to forgive all my sins. It is very important that you follow the ten comandments.

-John, 9

I am thankful for Elijah's health and education and I have enjoyed Elijah's cuteness and how he talks funny (dupt dopt dupt dupt dupt.)  I thank you that Elijah has lived and will continue to live. I pray that you will continue to bless Elijah through the years. Thank you God for dieing on the cross. I love you God and my family and friends.

-Stephanie, 11

I am thankful for Elijah living another year. I am also thankful for the gifts we got on Christmas.
-Carmal, 13  

Ok, well thanks again for reading.  I wish you well for the coming year.
Eleanor
   
The unfailing love of the LORD never ends. By his mercies we have been kept from complete destruction. Great is his faithfulness; his mercies begin afresh each day. I say to myself, "The LORD is my inheritance; therefore, I will hope in him!"

Lamentations 3:22-24