The big news this past week is that we took a 5-day trip to Orlando! Some very kind and amazing people (to put it mildly!) flew us down to Orlando to stay at a beautiful resort down there complete with water slides, multiple pools, a lazy river, wonderful places to eat and even a Starbucks on-site! And while we were there, we hit up SeaWorld and Discovery Cove.
We decided to keep things somewhat simple so we didn't do DisneyWorld but we did some pretty cool things like swimming with dolphins and that.was.awesome. Elle was technically too young to get to swim with them but she was able to touch one and get in the water for a quick group picture.
The trip was definitely exhausting but it was worth it. Amazing memories that we will always treasure.
Yesterday, we got back in the swing of things...back to school, work, schedules, etc. Re-entry into the real world wasn't as bad as it usually is. Yay!
We have an appointment with the girls' neurologist tomorrow - not sure if we will have med changes or not, but it's possible.
Elle is still losing a bit of function every day. (She is actually doing better today.) But her balance and coordination continue to decline and we are seeing some tremors, especially when she is trying to use her fine-motor skills. Also, she is having more and more seizure or seizure-like activity. She may be having drop-seizures now. (These are the ones that we had such a hard time controlling with Milla...it causes an 'accelerated' drop or fall of the head, trunk or whole body.) If it is seizure activity, then a medication adjustment or addition may help, but if it is just her brain not making connections due to degeneration, there's not much we can do. That is a hard reality to swallow.
Milla is also getting weaker. We seem to be in a visibly declining state with both of them these days. Too, she's been having some nights that she is up a lot whimpering. Please pray that we can figure out the cause of this and/or something that will fix it. We don't know if she is dreaming or is in pain or just needs a bit of comforting. She's having a harder time saying the few words she can still say as she is weaker and her tongue tremors are significant as are the tremors with her whole body. Her hands pretty much stay in a flexed position (wrist and hand at a 90 degree angle) when she is awake and many times one hand is clenched in a fist. She has a hard time releasing her grip on things. And she is starting to choke a bit more while eating. We see her out-of-it more and more.
All these things make us sad and fearful - goes without saying - so please pray that, while we keep a sense of the reality of our situation, we would be able to just take things one day at a time and not live in fear of the future. That we would not forget about Ann Carlyle's needs and that, as we seek out those amazing belly-laughs from all our girls, we would soak up the snuggles and be at peace with each day. That we would have the strength to show up and love and care for each other. That we would remember that God already has our days numbered and that doubt, guilt and all-encompassing fear is not of Him. That only by Him and because of Him are we able to live.
Oh and I want to also say thank you to all that are bringing us dinners and thank you so much for going along with our changes to the meal-plan. We need some consistency for Ann Carlyle so that she will start eating better and with more variety - and at least with her, I can stop being a short-order cook. (And please pray that she would comply more and more - without the battle.)
Thank y'all for sticking with us. Having you by our side is life-changing.
Dana
(Pictures below!)
PS - Thank you for buying the book!!! The response has been amazing!!! I'm so glad that it has touched so many lives. :)
For those who need the link to it...
http://www.amazon.com/gp/product/1519421532?keywords=voyage%20to%20the%20star%20kingdom&qid=1454621355&ref_=sr_1_1&s=books&sr=1-1
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| On our way and super excited!! |
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| Our fearless and amazing helpers - Dana's sister, Dawn and our friend, Reg |
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| Always gotta have our sister-almost-twins shot. (PS - I might have the most amazing sister in the world...) |
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| Ann Carlyle lost her other upper tooth when we got to Orlando Her toothless lisp is adorable. :) |
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| Milla and the manta ray |
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| Ann Carlyle and Elle watching dolphins |
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| Mommy and Milla soaking up the sun |
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| Silly sister time |
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| Discovery Cove |
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| Ann Carlyle swimming with the dolphin! |
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| Frazer and Milla with 'our' dolphin - they are so velvety soft |
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| Ann Carlyle and the unimpressed dolphin |
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| Look how big that dolphin is! |
Frazer and Dana, who can eve speak about this pain. We're not in your shoes so we can't know the depth of it, or the daily extension of His grace that pulls you through each day. Maybe you will find this Piper link encouraging. The song is good; the short message about every "mili second of pain" going unwasted may yet again bring spots of joy to your day when grief could have other wise swallowed it.
ReplyDeletehttps://www.youtube.com/watch?v=qyUPz6_TciY It's all under seven minutes...prayers continue with you all.