Tuesday, July 5, 2016
Hey guys! Hope everyone had a good 4th! Gotta be quick today...
We are still not at a good place with Elle. She is having such a hard time walking and doing things. We are having to keep a hand on her much of the time because she is so unsteady. And Milla's muscles continue being hypertonic (or flexed) more and more. It is really affecting her sleep again...daytime naps and at night.
In the last month, we have had to get rid of both of our CNA's (our nighttime nursing assistants) because of them both sleeping on the job. It has been a tough month interviewing and training new people...and the girls are having to get used to new faces as well. We have 1 CNA that will be a regular and we are waiting for another one to interview this week that will hopefully be another regular. We have had a couple of 'filler' or substitute people that we have trained who can fill in when our regulars have to cancel, but we are still trying to nail down a new permanent team.
So we've been under some extra stress lately. Please pray that we can get back to a 'normal' with our nights (sleep!) and early morning routines.
We are driving to St. Louis next weekend with all 3 girls (eek) for the annual Batten Conference. It will be great to gain the knowledge and support that the conference offers and it will be great for Ann Carlyle to meet other kids that are like her. They focus a lot on the 'healthy' siblings at these conferences - with activities and fun and support all weekend long. They also provide care for the kids with the disease so the parents can go to seminars.
But it will also be hard and stressful traveling with the girls and staying in a hotel. There was a lot of emotional stress for me last year at the conference (we went without the kids) that I assume I will have again this year...and there will be the physical stress this time around. Please pray that it is an easy(ish) weekend caring for the girls, that it will be an uplifting time and that Ann Carlyle will have fun and find a bunch of support as well. (Also important to note: We haven't taken a road trip anywhere since last summer so please pray for safety and sanity!)
Ann Carlyle had Mud Camp last week and is spending a few days in Birmingham this week with her grandparents and aunt, uncle and cousins. And she is having a ball! We are missing her but I'm so glad and thankful she is getting to be there. :) She is having a rockin' summer so far!
Thank you, always, for everything. Much love,