Not really much info.
We know her nerve damage is just outside the spinal cord low on her back. We know there is a "clump" of nerves. The big punch in the gut was that her nerves continue to be getting damaged. We do not have a cause. I feel like we are in limbo land big time. I also felt a bit like her neurologist is done. We were refereed to a neurosurgeon. So many questions with very little answers. I will continue to push for more.
We are scheduling a wheel chair evaluation. This girl of mine falls ALL the TIME. Probably 20-50 times a day. She did just get a AFO but at age 9 learning to use it may be part of the problem.
Sorry this is a boring post but I just wanted to get it written down.
Thursday, April 10, 2014
Thursday, April 3, 2014
MRI
Evie has an MRI and and EMG tomorrow. She is scheduled for 4 hours of full sedation. Of you are the praying type please pray for our girl. I could use a few too.
Thinking
Sometimes it is a BAD thing.
I am sitting at my computer doing some reports for LWB. Of course that means many cute orphan faces. Too much for a momma's heart to handle. It really breaks me into little pieces just about every time I sit down to get work done. It doesn't help when little Evie walks over and asks if she can have this one (a cute baby 2.5 year old girl with a cleft palate and some developmental delays) I told her to ask her dad. am I mean or what??
Last night as I was holding sweet Evie wiping away her tears. Tears of pain and loss HUGE grieving sobs that lasted for what seemed like hours though only really about 45 minutes. I said DONE I am DONE our family is complete DONE DONE DONE. This hurts! at the same time I feel blessed to be the momma who walks her through this. CRAZY!
When my girl feels so sad. I look at her and feel so much love for her. I wonder if she feels the love I have for her. I wonder if she has a teeny tiny clue as to what love feels like? Has she ever felt true unconditional love? Does she know we love her? or Does she even know what love is?
Today as I finish up my reports. Seeing so many faces that need to feel love. How willwe I ever be done???
I am sitting at my computer doing some reports for LWB. Of course that means many cute orphan faces. Too much for a momma's heart to handle. It really breaks me into little pieces just about every time I sit down to get work done. It doesn't help when little Evie walks over and asks if she can have this one (a cute baby 2.5 year old girl with a cleft palate and some developmental delays) I told her to ask her dad. am I mean or what??
Last night as I was holding sweet Evie wiping away her tears. Tears of pain and loss HUGE grieving sobs that lasted for what seemed like hours though only really about 45 minutes. I said DONE I am DONE our family is complete DONE DONE DONE. This hurts! at the same time I feel blessed to be the momma who walks her through this. CRAZY!
When my girl feels so sad. I look at her and feel so much love for her. I wonder if she feels the love I have for her. I wonder if she has a teeny tiny clue as to what love feels like? Has she ever felt true unconditional love? Does she know we love her? or Does she even know what love is?
Today as I finish up my reports. Seeing so many faces that need to feel love. How will
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