Tuesday, 4 May 2010


Hope's a funny thing. A goodish night, a smiling happy child, and the future is bright and full of hope. A long and sleepless night, an ill child, and the hope disappears, the future fades and all that remains is the now and the getting through it. Thinking through treacle, the only hope is that eventually the caffeine will kick in before the treacle sets solid.

Tonight, I'm hopeful again. It may well be that there's no quick fix here. Mog's general condition may not actually improve. But I'm confident that people are listening. Mog will not just be written off. I will not be doing this alone. Night care is coming. And, from next week, Mog will be able to try CPAP and see how she does with it.

Hope. Hope that this will work, will help Mog. Hope that this will bring better nights for both of us. Hope that better nights bring more energy to both of us, more of Mog's presence and less of her twitching absence.

Here's hoping.


Tina said...

Faith is the assurance of things hoped for. Hebrews 1v1
Praying that Mog has an improved quality of life from this intervention. Praying that all of you have an improved quality of life from improved quality of sleep.
So glad that this is being tried now...no matter how that has come about.
Sending al our love and desperate to see you al again so very soon!

MOM2_4 said...

PTL that people are listening and help is coming! Praying the CPAP helps.

Hugs & Prayers!!

Doorless said...

Wonderful thing Hope. We as carers of medically fragile children walk that fine line between hope and dispair.
We have had a fairly tough weekend and last noc. Today was the first day in 4 that the Princess wanted to get up. She has had retching and vomiting episodes bringing on the seizures every noc around midnight. Therefore I have had to stay up and see if the meds worked but not too much and then check every hour on her while battling nausea myself and a very sore throat. Lots of prayers and pleading with the Lord and thankfully today she is much like her old self. Hope tonight does not bring a repeat of the monsters that have plagued her.
We did take her off an antispasmotic med as it was affecting her liver and she has begun a short acting one now so maybe the vomiting was viral?, due to the liver profiles being up slightly or withdrawal of the med?
Sorry I have written a book.
I will pray the CPAP will help Mog and am so glad you have night nursing on the way!!!! Praise God.

Elinor said...

Thinking of you all.

Trina and Jophie said...

Ugh girlie....

Trina and Jophie


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