Tuesday, January 26, 2016

A quick update from Dad

A quick update from dad.

Elle's seizures have increased and generally, she is doing worse, which is to be expected with a degenerative disease, I guess.  Her appetite is not great, her attitude is not great in that she gets frustrated easily and has a very short temper.  She seems to be close to adding morning nap as her sleep during the night is less.  She rarely seeps past 515, and typically she is up before that.  On the bright side, it is a fun challenge to come home from work and try to get her laughing and playing each day.

Milla is generally weaker and her energy level is down.  She seems to have some minor blood circulation issues which don't really need to be dealt with, just another thing we see.  Her appetite has held up pretty good, but her tremors have increased.  Also, we are noticing her vision seems to be worse.  Or, she has trouble controlling her eye muscles to focus on what she wants to look at, its hard to tell the difference.  Her spirits are good and she still loves to giggle and be silly.  Its fun coming home and getting her to laugh!

I was in the kitchen last week and it hit me (more than it usually does) how labor intensive our world is with the girls, which does not let up and is overwhelming at times.  Its also been pretty overwhelming this month to deal with the degenerative nature of Battens.  It never really settles, rarely are the girls ever doing better and we face a long road ahead, but with all that, we have come this far thanks only to God's love and grace He pours out on our family and we plug along!  We thank all of you for pouring out your hearts, time, gifts, prayers, love, meals, flowers and all you have done for us and continue doing for us.  Whether you know it or not, you are being used by God to strengthen and sustain us!  He provides us the strength to make it through each day and there isn't much more for us to ask for right now.  I typically seem to cope and plug along much better when I focus only on my next step.  Very short sighted vision seems to be very effective and we look for our manna each day.  When I provide updates to friends and family or here on email/blog, it forces me step back and assess and opens my eyes to the degenerative nature, but it also opens my eyes to all that God has done to bring us this far and what He does for us each day and week.

Thank you for loving us and caring for us.  I am sorry that I cannot write as well as Dana, but we wanted to be diligent about getting more regular updates out.  I  promise Dana will send the next updates as she is much much better at these than I am, but please know that we are grateful for the love and support that you continue to put out on us!


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