This week has been really rough.
We are back in the hospital for what will make a full week today. Emily started having her "big seizures" at home last Monday and we ended up back in the ER which then led to a week long stay. Which also then led into surgery (G-tube placement), a Lumbar Puncture (Spinal Tap), another MRI, Starting the Ketogenic diet and another EEG.
Isn't that enough already??
But to make matters worse we got the results of her MRI and it's not good. Emily's brain is in atrophy. Which means that it's shrinking. Or another possibility is that her skull is growing and her brain is not. The neurologist seems to think it's not that her brain isn't keeping up with her skull but that it's in atrophy.
Look up what brain atrophy means and you can guess how I'm feeling right now.
But that doesn't mean we are giving up or losing faith.
We still have a few little pieces of hope to hang on to. Our neurologist wants us to get a second opinion at the Cleveland Clinic but first we have to wait about a month to see if the ketogenic diet helps any so that we don't waste our time when we go to Cleveland.
So what we can still hope for is...
1.) That the ketogenic diet works and starts working fast.
2.) That our visit in Cleveland results in more answers and possible treatments.
As long as we still have either one of those two possibilities to hang on to we are going to hang on to them for dear life!
This week has been the most overwhelming period for us since we started this journey back in December. It's hard to sit back and watch this happen to your princess and just feel so helpless. It's been a nightmare as you can imagine but somehow, someway God has given us the strength to make it "just one more day".
I was reading my Bible last night when I just "happened" to read these words in Isaiah.
Isaiah 63:9 (NIV)
In all their distress he too was distressed,
and the angel of his presence saved them.
In his love and mercy he redeemed them;
he lifted them up and carried them
all the days of old.
When I read that I felt like the Lord was telling me that we aren't alone in this. That although it feels like our backs are up against the wall and we are at the end of our ropes we can take comfort in knowing that He is right there with us.
That no matter how ugly this journey might get or how many nightmares we encounter along the way He too feels distressed when we feel that way. He feels our pain and he agonizes with us!
And that is truly the only way you can have any sort of peace about you in a mess like this. To walk with the Prince of Peace, Christ Jesus.
It's been a very rough week and I'm scared out of my mind for my little princess but I know there is one who loves her more than I could ever love her (as hard as that is to imagine). And all I can do is trust and have faith in Him.
The End of an Era
3 years ago