Half the Energy, Twice the Spunk

Maybe it's because I 'missed' the fall time completely - or rather enjoyed watching the colors change from my 6th floor window at the hospital - but i am just feeling like it can't possibly be spring already!

Our lives have changed SO much in the past year... 2 long hospital admissions for myself, and now I am muddling along on TPN with central lines, and feeding tubes, and all the necessary medical 'stuff' that comes with all that. Between Brandon and I, our med schedule, and the IV and central line care I feel like a full time nurse most of the time.

But - we have hit a pretty decent 'plateau'... I am weaning off the steroids slowly as the side effects were too severe to stay on them - and I am feeling the lower doses... my gut, which could handle small amounts of a handful of foods has mostly just stopped again completely... I can put meds through my J tube (So thankful for that - I can put narcotics or nausea medication through it, and it goes directly into my intesting, and is absorbed in minutes so the relief is very fast - if I were to swallow the medicine, it could sit in my stomach for hours before it was finally moved along to the intestines and absorbed... I only use the J tube for meds but it is sooo worth having.) But any attempts to eat food result in pain, nausea, and me looking 8 months pregnant...

That said - if I behave and avoid food, I feel pretty good and I'm home with my family so I won't complain.

Part of my effort to avoid food has involved me learning how to use the tools in Dave's shop, and making pretty things out of wood! I am going to set up a table at some craft shows over the spring/summer to sell said pretty things - I'm really having a BLAST out there - I've been making trucks of all sorts for the boys (much to their delight!) and boxes, necklace holders, and other random fun things... using up scrap wood and having lots of fun doing it :)

Brandon is doing GREAT. I cannot state that enough... he is in such an awesome place medically right now - strong, healthy, happy, smart, and stubborn as ever (we encourage this - he will need it in the long run... though it can test my patience... LOL!)

Tyler too is doing wonderfully - he adores kindergarden and as of last week he can read!! It's slow work and he has to sound stuff out carefully but he can do it!!! Brandon is SO close - we will be very excited when we have 2 readers on our hands - I don't have to explain how Brandon's life will be transformed by the ability to read and write to us... I am very eager to 'read' what he has to say... :)

Well that's our spring update... I will attempt to be more consistent with updates... usually no news is good news!

I wanted to share quickly my cousins blog adress.

http://hurrybeforeweallcometooursenses.blogspot.com/

Karli is my young, amazing, brave, awesome cousin who just returned to South Africa for the second year to volunteer at an orphanage. (after months of coming here and helping us with the boys and my hospital admission etc

She is amazing, her stories are amazing, what she is doing is amazing, and I'm excited to read of her impending adventures.

Karli you always inspire me to do better - to look around me, and do what I can to make the world a little bit better. At home or in Africa - you are doing your best to make this a better place in teh way your heart is telling you to. Thank you for being so awesome my friend!

Keely

I can't believe how fast this year is going by already!

The past 2 weeks have been good ones.

I'm in a place where things are stable, pain is managed, symptoms are under control, and my energy levels are fantastic (apparently getting enough calories makes a person feel really really good!).

I'm on pretty heavy doses of narcotics and antinauseants to BE in that place, but that's a small price to pay.

Right now I'm still getting about 80% of my nutrition via IV TPN, and almost ALL my fluids that way. I hook up in the evening to 1L of saline with sugar in it, run that in over 2 hours, then switch to the TPN (nutrition) for 12 hours.
Most mornings I'm supposed to hook up to 1 more litre of saline with sugar, but i've been skipping the morning litre as I am drinking some during the day, and by the AM I just want to be 'untied'.

The boys are doing fabulously, so I'm very greatful for that!!

This week we will be making some decisions around the 'next step'. We should have had this sorted out weeks ago, but i have been letting things slide as I'm really enjoying just 'being' for a while.

But - it's time to start moving forward - I have been 'coasting' on high dose steroids for a while now, and my body is suffering for it - the doc diagnosed me with 'steroid induced diabetes' this week, and I'm very swollen from the prednisone - it's time to start looking at other options. I suspect the next step will be Rituximab - a chemotherapy drug - which is a bit scary, but can work wonders for some people.

fingers crossed!

I'll update when I have news!

K