I know y'all don't believe me but I really do have every intention to update the blog at least every week! (Seriously!)
So Frazer and I just returned from the Annual Batten Disease Conference in Chicago. We had not intended to go but about a week ago decided to do it. Thank you to Kathy Mize for her herculean effort to organize (last minute!) all the people who helped care for the girls while we were gone for 3 days!!! And thank you to those that did the caring too (last minute!)!!!!! And thank you to those that got me on the plane Thursday afternoon after a little bout of a stomach bug!!!! Y'all are amazing and the girls had a wonderful time without us. :)
The conference was amazing and completely overwhelming and it's hard to put into words all we felt while we were there. But bottomline, we have added to our village in these people...families that have been affected by this disease, specialized doctors and the Batten Disease Foundation staff that live and breathe this disease and are dedicated to helping Batten families, and researchers that are committed to finding treatments and/or cures for this terrible disease. We came away with a wealth of information and things to process.
A BIG update is that our insurance-covered help has kicked in!!!! We have a nursing-aide every single night from 10pm-10am!!! There are 2 women that come each week - one comes 4 nights each week and the other does 3 nights. Everyone is still relatively new at all this, but it is going well and we are thankful for the help...and for the sleep!!!
As for the girls...
Milla is doing really well. She is talking more, moving around more, laughing more. She still fatigues relatively quickly and has times of lethargy but she is so determined to try to walk and stand and crawl and even jump on the trampoline! And one of my favorite things to do is to get her giggling - her shoulders will bob up and down and if she gets super tickled, no sound comes out, just a huge smile and the shoulders bobbing. Good for the soul. :) We are tapering one of her seizure meds down a bit and that seems to have brought Milla out of the fog she was in. But we have to be careful as we are trying to find that ‘sweet spot’ between controlling seizures and over-medicating…both of which can cause lethargy and fogginess.
Elle is doing well too. Her seizures have been mostly under control. She still has some coordination issues at times but all in all, she’s doing fine. She continues her speech therapy and we are seeing her make some gains there. She had a swallow test done a few weeks ago and mostly did okay, but there was a little bit that concerned them enough to tell us to go ahead and thicken her liquids. (This was a little discouraging to us that she is needing this so much earlier than Milla did but it has helped decrease her coughing/choking by leaps and bounds!) And she had a baseline MRI done yesterday - it was a long day at LeBonheur due to an emergency that came in - but we got through it.
There are still days like today, that both girls seem to be ‘off’ - more seizure activity, sleepiness and fussiness. But hopefully we will see a rebound tomorrow.
Ann Carlyle has had a summer full of playdates and swimming and fun. :) She has had some pretty heavy questions about her sisters but she seems to be processing things in a very healthy way even as she is grasping the gravity of the situation and for this we are thankful. She remains a happy and relatively carefree 6 year old!
We all 5 actually were able to travel to Birmingham to visit my family (and go to my 20-year high school reunion - yikes!). The girls all traveled really well and we had a fun time playing with cousins, swimming, riding Nana and Granddad's horses and seeing old friends.
I'm keeping this somewhat short today (maybe?) so that I can go ahead and get this update out...but as always, we treasure your prayers...
Please continue to pray for safety for the girls, for mercy, for all of them to know the deep, deep love of Jesus.
Please pray for Frazer and me also to know and feel the deep, deep love of Jesus and pray for our marriage. Pray that God would grant us clarity and wisdom as we consider some possible new ways of treating the girls' seizures and sleep issues and as we continually make medical decisions for Milla and Elle. I am feeling a lot of anxiety of late and my body is suffering because of it. Please pray that we both are able to rest in God's promises and faithfulness that He will never leave us or forsake us and that He will continue to provide us, love us and give us strength to walk this long road. Again, pray for clarity and wisdom and for God to go before us and pave the way.
Thank you for praying for us, with us. Thank you for supporting us in every way possible. Thank you for being a reminder that God has not left us - for being our awesome, amazing and incredible village. We bragged a lot on y'all this weekend at the conference. :)
Much love!!!
Dana
(My laptop's start-up disc is full and I can't figure out how to get some pictures on here but I'm working on it. I'm not real bright when it comes to computers and start-up discs and storage. Grrrr.)
Oh the deep, deep love of Jesus
Vast, unmeasured, boundless, free!
Rolling as a mighty ocean, in its fullness over me!
Underneath me, all around me, is the current of Thy love Leading onward, leading homeward to Thy glorious rest above!
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