Monday, August 07, 2006

Codeine every 4 hours

Hi Everyone,

Our weekend has been OK, staying very close to home... play time with Nicky and Paige, playing in the driveway (still no grass) and feeding the ducks at the pond at the end of the street. I finally slept last night which is ironic because it's the first night in the last 7 that I decided not to take a sleeping pill. Grace has been very unsetted (I know it's the Dex but it's still a challenge) and complaining of head and neck pain so we have upped her meds from on demand to scheduled (every 4 hours). I believe we can continue to increase her codeine until it is every 2 hours and then at that point we'd have to change to morphine. Morphine will make her much more tired so we'd like to delay the transition as long as we can. Ian and I have decided general details for Grace's service (still having an issue saying/typing the "F" word). Her palliative care team suggested we do things now while she is still relatively "well". Seems as though organ/tissue donation is out due to how aggressive her cancer is. We will donate her eyes for research. Everything is so unbelievable... I bought a comfy rocking chair today. This was one thing I never splurged on when she was a baby. When we were at the cottage last week, Carly has a great rocker up there and my mom was able to rock Grace asleep every night.... this took some stress out of the "bedtime" routine which we don't seem to have at all. Eventually I believe my mom will stay with us 24/7 to help me with Grace's care. The only thing imaginable that could be worse than our current circumstance would be doing it without the support of my mom, dad and other family and friends that have been so kind. Dinners has begun magically appearing at our door ever evening. This is so wonderful... I brought Grace to the grocery store on Friday and it was terrible. She began complaining of head pain 10min after arrival, I was completely strung out until I got her home and gave her her pain meds. Everything that once seemed simple is so overwhelming for us right now. I've been doing meds for Grace since she's been 15months old but now every med I give her seems to be stepping closer to the inevitable. Thanks so much for you love, support and prayers. I know life has to be easier than this...



Blogger tori and andy said...

Hi Lesley, Ian and Grace,

Please know that we have consistently kept all three of you in our thoughts and prayers. I am inspired and touched by your bravery and honesty. You and this website amaze me. It is so special that Grace has amazing friends, family and most of all parents. I hope that in this unreal situation you can still experience joy with your gorgeous girl. It is just so unfair!!!
Should you think of ANYTHING that Andy and I can do to help you out please let us know.
You can email us at

Our love and support is constant from afar! Huge hugs to you, Ian and Grace,

xo Tori and Andy

9:06 p.m.  

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