A bit of sunshine

We enjoyed our bit of sunshine last week.  Mira and Brodie were outside almost the whole time.  Mira really likes the grass, and was very content to sit on a blanket and play with grass, or a water bottle.  Sometimes we would give her a toy, but she's so happy with the unlikely things, that we don't have to worry about toys too much.  We also had a little visit with cousins...

During the days we were gone, Hope continued to worsen.  Her seizures increased in intensity and she started to vomitt with the seizures.  We've had some nice days with her since we've been home, but she's changing a lot.  Even though some would say, "Oh, she looks good to me"....there is a lot going on that others might not see.

As of today, she is hardly waking up anymore.  If she does wake up, she promptly has a seizure and goes back to sleep.  We were getting worried about the intensity of the seizures, and had planned to talk to doctors about increasing meds today (especially because she is now vomitting with some seizures).  But now, her arms and legs barely move with the seizures, as if her body doesn't have the energy to do what her 'messed up' brain is telling her to do.  Her face still twists and she makes little squeaks and her hands will jerk a bit with each spasm, but no more arms and legs scizzoring.  You might remember that Ashley had no more seizures in the last month before she died.  This feels similar.

The worst part is her vacant stare.  She just looks so lethargic and exhausted, and if her eyes do open, there is no real awareness.  To me, it sounds ridiculous when someone says she 'looks good', but I'm rather sensitive right now.  Of course, Hope looks quite peaceful and sweet when she's sleeping, so that's what people probably see and comment on.  Perhaps it is supposed to be an encouraging comment.  It's better if there is understanding and compassion. 

I see the blue tinge around her mouth, and the way her skin marks easily so that we're very careful to watch for pressure sores.  I see the way her hands turn blue with each seizure and sometimes don't pink up for a while.  I see the shallow breathing, and occasionally irregular breathing.  I see her not tolerating formula, and the struggle we have each day as we try to meet her nutritional requirements.

I'm telling you this, because I think some people mistakenly believe that we are 'just fine' (and therefore Hope must be doing okay).  And I know that I usually present myself as happy and content when I'm with people.  I like being with people.  Visiting and interacting with people gives me energy.  So, don't look at me and assume that Hope must be doing fairly well, just because I'm not falling apart.  When I say "she isn't doing very well", I mean it.  Yes, that phrase is very subjective and really doesn't give much information.  That's why I have the blog.  So, I can give you a better idea of how Hope is doing.

Thank you for caring enough to read this.