I am just not feeling like celebrating Christmas this year. Don't get me wrong...I look forward to seeing all my children and their spouses, fiances and children.......that will be a highlight of the week for me. But with Elisabeth laid up I am fighting my constant companion , depression.
She may get to come home today. Her leg is still extremely swollen. I am not happy with the quality of care she has received since being forced to leave the spina bifida clinic at Children's memorial. They decided to form an adult clinic and while in the past Children's Memorial continued to see all with spina bifida. That is no longer the case.
I no longer have the same faith in the Doctor's or nurse coordinator at Rehabilitation Institute of Chicago(the clinic they now force us to attend) When at Children's I knew who to call. I trusted their judgement. That is no longer the case. For example in the past three years since being seen in the adult clinic the urologist has not done the yearly blood test to see how Elisabeth's kidney's are functioning. Nor has she ordered a scan of her kidneys. When I asked about Elisabeth having a scan she ordered a renal ultrasound. Too bad the urologist at children's had already told me that as an adult the ultra sounds were no longer able to detect problems and that adults need a cat scan of their kidney's.
It sounds simple change doctor's....... But with spina bifida where do I turn. Not every doctor is trained to care for the many medical facets that need to be attended to.
My heart aches as I wonder and ponder what I should do to insure Elisabeth has the best care available.
Today , our government is voting on universal health care. A health care system senators and congressmen will not have to use. A system that will likely do little to help those with birth defects or chronic health problems. A system that will become less compassionate , not by choice but by default.
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2 comments:
I'm so sorry that you're having a hard time. I wish there was something I could do or say to make you feel better. I will keep you and Elisabeth in my thoughts and prayers. I'm going to call the temple and put your name in too. I want you to feel better and those are the two things that I know I can do for you.
Stephanie, I know how hard it is when your child is suffering.
I have found that these are the times when we really need to look around and see the many blessings we have. I hope I don't sound condesending or judgemental because trust me I'm not at all. I just know how much we as parents suffer when our children suffer. The only way I get through it is to remember how blessed I am.
You go grab that little Aubrey and hug and kiss her all over, until you start to feel better.
After all, isn't that the whole reason Heavenly Father invented grandchildren in the first place?
Love you much. Have a wonderful Christmas with your dear family!
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