She's trying to squirt me with a syringe while we sat on the couch after doing her warm eye compress and a water bolus. Ha, ha funny girl!
This is about how her eyes are looking relaxed. She can lift the lids more using her forehead muscles.
Like here. Okay that's not a huge difference.
But ideally what we (I) were hoping to get to was something more like this...
Or I guess I should say I had hoped that maybe her eyes would some day look the way they did when she was born. In this photo she is not using her brow to lift the lids. This shows the degree of ptosis and slant she was born with. I had prepared myself that the results might not restore her original appearance, but I hoped. At one time I had been told by the ophthalmologist that with a frontalis sling her eyes would look totally normal. I wanted the droopiness fixed and looked forward to her having normal looking eyes. I laugh. Now I would love for her to look exactly like she did. Ironic isn't it?
Everything changed the day she had her second cranial reconstruction the day after than picture was taken. I wish I could understand what went wrong. Even the surgeons can only speculate. I've given it much more thought than they and I now believe it is probably just a matter of bones being replaced in slightly different positions around the eye. Probably because they moved her brow and put bone behind the eye to imitate the absent part of her sphenoid wing. Ultimately it doesn't matter because what's done is done and here we are. There is no going back.
To recap what I've posted in the past, the surgeon removed part of the sup tarsus and transplanted it to the lower tarsus. He shortened the levator (that lifts the eyelid) and brought up the lower lids with a canthopexy. The surprise was that he also removed 4-5mm of length from her eyes by cutting away some of her lids. Looking at her baby pictures I just don't see that her eyelids were too long and needed shortening. It was never discussed at our visits and I'm having a hard time with it. I am very concerned that with a smaller opening her eyes are going to look smaller, which is kind of the opposite of what we were trying to achieve.
Steve still thinks there is a fair degree of swelling and that things will improve. I think they may improve some but feel the changes will be minimal, and personally, am pretty sure that the surgery didn't do as much as we'd have liked. This is one situation when I would love to be proved wrong. Prove me wrong God (if you're up there), prove me wrong. While I love her beautiful smile I would also like to be able to see her eyes when she smiles. I didn't think that was too much for a mother to hope for.
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Hugs Susan. It's hard when our expectations and hopes are shattered. It makes you angry and it makes you sad, which in turn makes you tired. I hope Steve is right and that you will see more improvement as swelling goes down. But, I understand that you get tired of always having to wait for what you want ... and what Ainsley deserves. I so wish our group of trach moms wasn't so spread out - I really wish we could come gather you up and take you out for a drink tonight. Know that we are always with you in spirit.
ReplyDeleteAnn
What a beautiful smile...to see Ainsley so happy is precious. Take good care of yourself Susan. It will all be ok!
ReplyDeleteOh Susan you just made me cry.
ReplyDeleteI hear the pain in your post and like Ann said I wish we all lived closer cuz I would so come a knockin' on your door with a cab waiting for us all the curb (see I premeditated our evening, no driving drunk y'all) I would first hug you and then I would ever so lovingly place in your hand a big ol jug of clam juice to pour into the beers we are about to drink, and I may have smuggled some good Kokanee beer for us all to drink; just because we all Canadians know that our beer is 100x better than your american beer.
Like Steve said he thinks there may be still some swelling and I concur with him. This is 2 weeks after a major surgery for Ainsley. The doc said 2 whole months for final results right.
Patience dear Mama.
She is beautiful, she is Ainsley!
You are beautiful, you are her Mama!
I love you Susan.
Hugs and all the love in the universe from me to you.
Oh Susan, I have similar feeling about our last surgery too. I really hope that you will be able to see her eyes more and that Steve is right about the swelling. Hang in there Mama, good results are coming!! Sending you hugs because this is all so very hard!
ReplyDeleteOh Susan. I can totally feel you. Totally. And I second everything Ann said.
ReplyDeleteA friend of mine is "struggling" with her 4-yr old right now (perfectly healthy girl). She is having coughing fits and the other night she was up for 2 hours coughing. My friend said she needs to get to the bottom of it. This has been going on for 2 years! I want so bad to tell her that not everything is fixable. That no one is guaranteed a perfect working body.
It totally sucks when you think/realize/fear that maybe they won't be able to fix our girls. That somehow we are going to have to get us - and our sweet girls - through life and teach them how to be happy despite what they've been dealt. Overwhelming. Simply overwhelming.
I hope that Steve is right, too. But I can totally understand how you are feeling. And NO - it is not too much for a mother to ask! I will hope and pray that the results will get better. I want you to see her eyes again, too.
Much, much love,
Christy
I know time?
ReplyDeleteSleepless again...AGH!
Thinking of you.
(That sounds creepy but I don't mean it like that, ya know the sleepless night-then in the next sentence thinking of you)
Hope you are well.
Just sending some love and sending some Christmas cheer.
All the love in the universe from me to you.
Phone call away right.