Making herself heard

By Patti Dansereau — Jan 29, 2015 11:15am

I’m happy to report that Bernadette continues to rest comfortably but certainly not quietly!  She’s developed this little grunt every time she breathes out and when it’s quiet you can hear it all the way from the top of the stairs.  She doesn’t appear to be in any pain with it but it sounds like she should be to me.  She continues to keep her eyes closed 99 percent of the time and now for most of that she’s also asleep.  There were moments yesterday when it was obvious she was awake but still resting.  At one point she suddenly woke up, sat her bed right up, and then said, “Now what do I do?”  Her eyes were still closed.  I made a couple suggestions just to humour her and a few minutes later she said she’d like to play Uno.  Wow.  She hasn’t wanted to play Uno for almost two months.  Catherine brought me the cards and we actually played a game.  She held her own cards for a little while and then had to lay them on the lap desk.  She put down the wrong card a few times but only because she’d pulled the wrong one from her hand.  She knew when she had to pick up and she played her usual strategy of playing all her ‘miss-a-turn’ cards together to get rid of her cards faster.  Somehow she won while I still had a ‘pick-up-four’ and a ‘change color’ card in my hand.  Thank goodness we weren’t keeping score, esh.  Bernadette only managed the one game though and was content after that.  Oh, and she played the entire game with her eyes 99 percent closed.    Marc and I are starting to question the possibility of lowering her Morphine just enough so she can be awake more but not in pain.  We’re asking what our options are.

We had a good discussion with Dr. Weicker yesterday about the Vitamin C treatments.  He looked into it for us and talked to a prominent doctor on the coast about how to treat a child and got a new ‘protocol’ for her.  He also forwarded all that information to Dr. Gervais and now it’s a matter of waiting to see if she’s physically able to continue with the new treatments.  The last three were too hard on her little body and she’s still fighting off the effects.  But she’s looking peaceful and not nearly as swollen now which is really nice.  You can tell her body is fighting though because she’ll turn yellow and then it will go away again, turn yellow again, and it goes away again.  This morning she’s a little on the yellow side but not much.

Meme and Pepe have been dropping in every day for just a little while.  I know they’re here to see Bernadette and be of support but I secretly suspect that Suzanne comes to make sure we don’t kill the beautiful flowers from Sue by neglect.  Every time they leave the vase has been topped up.  I confess that if it wasn’t for Suzanne’s attention to them they would be very wilted by now as there really is nothing on my radar right now except sitting with Bernadette, feeding Zoe, eating when Marc makes me, doing endless loads of laundry, and of course praying.    Thank you, Suzanne!

Speaking of eating, we were blessed with a very yummy spaghetti dinner the other night from Marie and Joe.  Normally my family is very kind and when we are given dishes that I normally make they say, “It’s good but not nearly as good as Mom’s”.  Well………… Marie I have a bone to pick with you!!!  Every single family member commented on how your spaghetti sauce tasted “almost just like mom’s”.  Every single one.  I can’t be too upset though because to be totally honest, it was my first thought too.  So thank you Marie and Joe.  We’ve been enjoying it the last few days too.

Well Lona (nurse) will be here in a few minutes so I should get going.  Thank you everyone for responding and praying extra hard for Bernadette yesterday.  I’m hoping and praying too that this new grunting isn’t due to any complications or that underneath there where ever it is that she’s residing that she’s not in pain and is unable to let us know.  Dr. Weicker hopes to come out at the end of the day and maybe he’ll be able to assure us that she’s still comfortable.

We’re still praying for a miracle.  Thank you for praying too.  Thank you, thank you, thank you all.

 

COMMENTS


By Carole Landry

We continue to pray but i must say that your daily entry in this journal unite us in a deeper prayer. I fall asleep and wake up in prayer for your little one and the whole family. Thanks for teaching us in this matter.


By Susan D.

Continuing to pray. xoxo


By The Kurz’s
The girls are thankful to have been given the chance to visit yesterday and to see Bernadette. She is all they talked about last night. And I’m sure they are praying extra-hard for a miracle during their prayers before bedtime. Thinking of you daily…

 

 

 

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