First of all, I thank you for praying for Ellie - especially this past week as we have been searching for ways to ease her pain and discomfort. I am happy to say she is no longer crying around the clock and she seems to be much more comfortable! We have worked with doctors to tweak her meds a bit which has helped her to be more comfortable. Of course, we know God has touched her as well!
Today we saw Ellie's neurologist. The doctor was encouraged by EK's development. She is definitely doing better than what all of our doctors have expected! The neurologist is especially excited about the fact that there have been no seizures. Praise the Lord for that!
There are a few things that the neurologist is concerned with. EK is hyper-ketonic or in a sense, hyper-active. She has so many signals going off in her brain, which cause her to move around a lot. She is very easily overstimulated. This hyper-activity is the cause for some of her irregular movements, her strange eye movements, and at times, her crying. We don't know if this will be something she deals with all of her life, but we do know that it is directly related to NKH. Ellie does however calm down and finally focus. She does this especially when she has boundaries - either our arms or her car seat!
As Ellie gets older, we are realizing more and more that our little girl is not "normal". We found out recently that we are the only case of NKH known in OK at this time. Also, the oldest known person with NKH is only 13. These things can be overwhelming at times. But, we know God has worked in Ellie in incredible ways thus far, and He isn't through yet! We are choosing to treasure every moment, every day that we have with our precious little girl.
Ways to Pray:
1. Pray that EK would gain weight! She desperately needs to gain some weight. She just burns all of her calories off with all of her movement and her crying.
2. Pray that she would continue to develop:
a. focus more
b. laugh and smile more
3. Pray that she would be able to better control her movements
4. Pray that she wouldn't be in any pain
Also, please join us in praying for other families dealing with NKH. Our hearts break for those with NKH children who are not doing as well as our Ellie. What a tough thing this is (for more info check out http://www.nkh-network.org/)!
One exciting thing that happened today - Ellie laughed for the first time! She smiled more than she ever has tonight, which was SO incredibly encouraging to Mike and I. Please pray that she continues to do things like that!
I leave you with words from a song that has been floating through my mind all day . . . "Praise God from whom all blessings flow! Praise Him all creatures dear below! Praise Him above ye heavenly host! Praise Father, Son and Holy Ghost".
We love you,
Ryan
PS: We recently took some family pictures, as we wanted to capture this time in our lives with EK. A few of them are posted on this site. I hope you enjoy!
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