Tuesday, June 9, 2015
Sunday, June 7, 2015
Hey y’all - so we’ve had a few changes happen over the last week or so since Frazer’s update that I felt was important to let you know about.
MIlla is continuing to get weaker with her swallowing and breathing and she probably has more than 100 little seizures per hour (sometimes many more). The amazing thing is that she has been super strong in other areas…she has had times of wanting to bear weight in her legs and even taking some steps (assisted, of course, but this is something we haven’t seen in a very long time). And she has been more alert and responsive. She is quick to smile and laugh and still takes such joy in making others laugh as well. We are so thankful her mind is still ‘with us’ most of the time. Her disease causes dementia along with everything else, so everyday we have with her where she knows us and knows our love for her, is a blessing. Please continue to pray for this specifically…and praise Him for His provision in this way!
Some of the most dramatic changes, however, have been in Elle. She is seizing more and she is walking around like she is in slow-motion. It is like the wind has been sucked out of her. She even talks in slow-motion. We have seen changes in her balance and coordination as well and 1 eyelid is occasionally drooping a bit (as we see with Milla). We aren’t sure at this time what is due to seizures/meds and what is due to the degeneration in her brain. Today, actually, has been the first day in a week that I’ve seen some kind of plateau in her condition.
Ann Carlyle is doing okay but she is definitely seeing all these changes in her sisters - we are having little conversations about hard things frequently. We’ve seen a few behavioral things here and there - clinging, not feeling good, emotional. She threw a fit yesterday about not being able to sit beside Milla in the car. Please pray for her little heart and mind and pray for us as we strive to protect her when she needs it, to gently show her the reality of what is happening, to have patience with her when it’s hard to have patience.
On a positive note, everyone has slept through the night the past two nights!!! Praise God and please pray that this continues!
Please continue to pray for the help provided by insurance. We are still in this waiting place to see what they will pay for and what we need…and then a bunch of other steps have to be taken before we physically get that help in our home.
Please continue to pray for mercy for all of us. God is love and He is merciful. His character never changes. As you can imagine, this has left us reeling and we aren’t even really able to process it all. I think we both feel a bit like we are just getting through the days, doing what needs to get done, and the processing will get processed later. In other words, survive.
And so we press on with the hope of Christ in our hearts.
Thank you all for standing with us - and for us when we can’t. Much love-