Tuesday, January 26, 2016
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!
Monday, January 18, 2016
Hello again! Just 1 week and here I am. And at the risk of exposing my self-pride - I am awesome.
So quick update...
Elle had a rough start to the week. Last Tuesday, she screamed all.day.long. It was rough. She just wasn't feeling good and falling a lot and acting like she had just gotten off the tilt-a-whirl. She's also been getting up around 4/4:30am most days. So that is contributing to her feeling yucky as well. She's done a bit better over the weekend although yesterday, she tagged her eye and has a nice cut above and below her left eye. It's swollen and colorful but it's okay (in that we didn't have to take her in to get stitches or anything).
Milla is also doing better this weekend than she was last week. Much of the week, she was out-of-it and although she had some great bursts of energy, we can see her overall strength and alertness continue to diminish slowly. Also, her tremors were more exaggerated. We are expecting to get some wrist/hand braces in the next week or 2 to help with hand-positioning and possibly her tremors. She seems a bit more alert this weekend although she has had poor sleep off and on this week.
We are seeing some extra neediness and attitude from Ann Carlyle, which is hard because, for better or worse, we expect her to be more independent and obedient.
So while it was a rough week, things improved this weekend - probably because Nana and Granddad (my parents) were here! :)
We are hoping to get in for a checkup soon with the girls' neurologist - possibly this week.
Thank you to all who have bought the book (Voyage to the Star Kingdom) and for all your kind words!
And that about sums it up!
Monday, January 11, 2016
So, Happy Thanksgiving, Merry Christmas and Happy New Year!
I know I've been quiet for awhile - part of that was trying to take things off my plate to slow down (if possible) and enjoy the holidays, to remember why we celebrate Christmas, to just be with my family. November and December were a bit of a dark time for me. My heart was heavy and I felt like a robot, just going through the motions. I had emotionally shut down. I've had these times here and there over the past year - times that have always come and gone - although this one seemed to last a bit longer. Thankfully, I feel like I've been pulled out of that particular mire and feel like my footing is indeed secure again.
Honestly, we have struggled a bit with the whole "happy new year" thing. Because we know there are more hard times ahead...probably even harder than we've known. At first, I felt angry and bitter about it. What is there to be happy about?? What is there to look forward to?? Which also made me reflect on the past year with the same heartache. But then. Then my heart felt a change - begrudgingly at first. (Make no mistake, this was God changing my heart and reminding me.) All the people and meals and gifts and time and service and prayers and encouragement that we have experienced! The love that we might have never known had we not been in this situation. The faithfulness of God and seeing Him show up again and again.
This is a perfect segue into telling you about the book. :) The book that 2 sweet friends (the sister and cousin of one of my oldest and dearest friends, Laura Capitell Balzer) have written and illustrated, who were inspired by our girls and the community that surrounds us and the things that God is up to...the reason we have hope...the hope, not in things seen, but in things unseen, the hope in things to come.
The book is called Voyage to the Star Kingdom, by Anne Riley, illustrated by Amy Grimes. And it's amazing. It has been in the works for awhile now - many of you have already heard about it. You can get it on Amazon tomorrow!!! Here's the link...
See more about Anne on her website http://annerileybooks.com and Amy at http://www.storypaintings.net
As for us...how are we doing? I've been getting that question a whole lot lately, especially since it's been almost 2 months of radio-silence.
#1 - I am going to try (really really really hard) to update the blog more frequently. My goal is weekly. I'm shooting myself in the foot not writing about our comings and goings since the whole reason for this blog was to keep everyone in the know about how we are doing. (That sentence had way too many 'sayings' in it. I apologize.) Anyway, my goal is to update weekly...a short blurb about how the week has been, new prayer requests, etc.
#2 - So how are we doing? Well, it's complicated, right? Standard answer, we are hanging in there.
Milla is trending downward slowly. Mostly, we see she is losing strength and is having a hard time getting her eyes to find what she's looking for (for example, if I say something to her, she takes awhile to find where I am and then has trouble finding my eyes). She is still eating well and was actually drinking really well until a couple of days ago. We tried to wean one of her seizure meds a few of weeks ago, but immediately, her tremors went through the roof, so we had to go right back up to the original dose. But she remains a happy kid and sweet as can be and for this, we are so very thankful.
Elle is also trending downward slowly. (We are thankful, though, that it's not quickly right now.) Her seizures are mostly small but are, along with her general brain degeneration, really affecting her balance. She also is still not wanting to eat much. Too, I worry a lot about her not wanting to take her meds. But our go-to lately has been getting Ann Carlyle to give Elle her meds. It's a win-win! Ann Carlyle loves that Elle wants her to do it...Ann Carlyle may sigh and roll her eyes at times, pretending it's such a hassle, but she loves being given such an awesome job. :) (She is 6 ½ yrs old going on 13 for sure.)
And speaking of, Ann Carlyle is doing good. She asks some tough questions some times and she has been connecting more of the dots, even realizing that when Milla and Elle die, she won't have any sisters anymore. I can't tell you how much my heart is utterly broken, hearing her come to this realization, but God is truly providing comfort to her little heart as we sit in sadness with each other, giving lots of hugs and reminding myself as much as I remind her how much God loves us. But all in all, she is still super silly and a little feisty and is a fashionista and loves school and loves being with friends and loves legos.
Christmas was really good - Frazer and I really felt like we had a wonderful balance of seeing most of the family (on both sides) but also having some great time with just the 5 of us. My heart was trained on some simple but staggering truths of the birth of Jesus - young Mary and all that was required of her...the shepherds in the dead of night, all of the sudden seeing and hearing a bazillion angels singing, heralding Jesus' birth. Just putting myself in their shoes and imagining the craziness and absolute glory of that moment.
One of the best parts of it all was that Frazer and I got to go to an 11:00 Christmas Eve service. We haven't done that in at least 6 years and honestly I wasn't sure I would be able to make it that late! But I did and it was amazing to be there, worshipping and setting our hearts on things above as Christmas day began...a truly wonderful time for us both.
I promised myself to keep this relatively short so I'm going to sign off. As always, thank you for your prayers (and everything else!) and we so appreciate your perseverance with us down this long road.
Oh - and because so many of asked - My sister and her family are not moving to Memphis at this time. They thought that is what God wanted them to do last summer but then God closed those doors, so they remain in Birmingham. A dear friend told me recently, sometimes God just wants us to walk in obedience to Him, even if, in the end, it is not the ending that we had foreseen. So for now, although we don't understand it and although it hurts our hearts, they are staying put.
Real quick, I have spoken of this before, but I want to say it again because it has stayed on my heart for weeks now and because it is such good truth...about Christmas and light and darkness…that Christmas means nothing if it doesn’t start with darkness. Jesus was born in the dark. He was resurrected in the dark. God perhaps does His greatest work in the dark. When the world couldn’t see its hand in front of its face, He showed up.
(Sorry I'm still writing! I get going and can't seem to stop!)
Ok. We love y'all. And goodnight. And may the Lord keep us close to Himself no matter what 2016 holds...may we have joy and hope in abundance.