"He shall feed his flock like a shepherd: he shall gather the lambs with his arm,
and carry them close to his heart, and shall gently lead those that are with young." Isaiah 40:11

Tuesday, May 31, 2011

No change

Our respite worker kindly recorded Rachel's milk intake last night.  68mls total.  (a bit better than last night).  We have noticed that Rachel doesn't like to be touched or moved much these days.  That's tough - I want to cuddle with her but it doesn't usually work for long.  I just talked with our Palliative care doctor this morning and she suggested trying to drop some milk in her mouth with a dropper (as it seems like she is still hungry but can't for some reason keep sucking).  We're going to try that for awhile just to see if that helps her to be more comfortable.  But it may still be something like the cold or flu and she might not want it anyway. 

Dave is taking the kids to the dentist today. Ethan has two cavities and Abigail has one.  Yup, we haven't been that diligent with brushing the past year.  I guess it could just as easily have happened if we did.  But I have delegated Dave to take them because I'm too nervous.  Ahh..life feels out of control for us these days.  We have been dropping so many balls.  So, If you are still waiting for an answer to your invitation or questions or email etc...I'm sorry! I am reading everything and I so appreciate your efforts and thoughtfulness.  But we are kind of in survival mode here again and I can't think straight enough to respond right now. Thank-you for your understanding.  Some of you have asked how you can help - or given me strict instructions to call if I need anything;) I hope it's ok if I just give a blanket answer.  Meals would be the most appreciated right now.  (freezable stuff is best) I have a hard time admitting we need help or asking for it (or even knowing what we need half the time!) but this is one more or less constant need. Thank-you:) 


Irene K said...

Heavy hearts for you and Prayers for God to have mercy on your family. Keep your eyes on Jesus and cling to the rock. Here is a poem

That time I thought I could not go any closer to grief without dying
I went closer, and I did not die. Surely God had His hand in this,
as well as friends. Still, I was bent, and my laughter,
as the poet said, was nowhere to be found.
Then said my friend Daniel(brave even among lions),
"It's not the weight you carry but how you carry it -
books, bricks, grief - it's all in the way you embrace it,
balance it, carry it when you cannot, and would not,
put it down."
So I went practicing. Have you noticed? Have you heard
the laughter that comes, now and again, out of my
startled mouth? How I linger to admire, admire,
admire the things of this world that are kind, and maybe
also troubled - roses in the wind,the sea geese on the
steep waves, a love to which there is no reply?
- by Mary Oliver

Evan and Mel said...

You are one of the strongest women that I know, you and your family and doing the best you can to keep your heads above water given the situation. We have a saying in Goodlife/LesMills when instructors push themselves further then health and they need to keep going aka.release week. The saying is STAND STRONG! That is my prayer for you and your family........... stand strong and rely on God.
Thinking about you so much


Anonymous said...

I'm thinking of you guys all the time these days, and always checking for updates. It's been such a long hard road for you all. It must be miserable to see her unhappy and unable to cuddle those cries away. Wish I could be there to help and hug. Lots of love, Jen

Valerie Ruth said...

my heart has been so heavy for you and rachel these last few days. sounds so hard! love to you.

Jennifer said...

Praying for you from across the border in the U.S. Every morning, I wake and check the blog for a new Rachel adventure. I pray that she keeps getting to take new ones...

Praying for strength for you and your whole family.

fiona said...

the ladies from house church that i meet with every other week to pray and cry together with, prayed for you all last night.

Virginia said...

I have been reading your blog for months now and have never commented. I am a Registered Nurse and worked Pediatrics years ago. My heart aches and breaks for you; this road has been long and rocky for all of you. I pray for your family and for precious little Rachel whenever God brings you to mind. You are an amazing woman and exude strength beyond your own! God has a purpose for this whole journey; your story has already touched many, many lives. Be assured of my continued thoughts and prayers.

~Virginia Olive