Elle will start at Shrine School possibly next week sometime...or it may not be until the following week...but still!!! We are so excited about this and feel that she will do great there. It is a public school here in Memphis that serves only disabled students. They have a full-time nursing staff, a great student-teacher ratio, a staff that seem to really care about these kids and are passionate about what they do. She also can get all her therapies there (PT, OT, speech) aaand they even have an indoor pool for water therapy that she will get to do every week! Please pray that the transition will be easy and that Elle will be well-cared for while there.
Yesterday, we got a letter that Elle's enzyme treatment would no longer be covered by insurance starting in March, but our awesome team at Lebonheur and in Ohio got on it and less than 24 hours later, she is covered again until August. Thank you, Jesus!! And thank you Karen B.!!! Whew. We had seriously geared up last night for another weeks-long battle with insurance but no need. It's done.
Elle is over her infection! We were able to treat her at home again - so, so thankful for our Palliative Care Team. And after 5 or 6 weeks of someone being sick (mostly me and Elle), we are all 4 healthy for now. :)
Plus, I got my soul fed last weekend with a 2-day get-away with a big bunch of my girlfriends and my sister. Thank you girls for your friendship and love and for how you make me laugh and how you make me dance. (And how you make me sing at the top of my lungs to 90's country music...and then 80's pop and hip hop...and then early 2000's rock...and then early 2000's folk rock...etc...for hours and hours.)
Elle seems to have gained back a little of her lost strength now that she is healthy...or at least her will and spirit to be strong. :) She has been happy and relaxed most of the time, which has been so lovely since she and I are spending a.lot of quality time together. Truly a blessing from God during this time that she is not in an angry and screaming phase. Also, her seizures have been a bit better the last few days...we don't know why but we'll take it!
We are still without a night nurse Thursday-Saturday nights but some wonderful and amazing friends have been helping out the last few weekends...thank you, dear people!!! Thank you for being so sacrificial with your time and energy. (Also applies to the dear people that have helped out in the daytime hours since Elle hasn't been to school in a month.) Please continue to pray for a weekend nurse.
As is every day, I thank my God for you - you are so steadfast in your prayers and help for us. What a loving and wonderful God we have. He holds us in the palm of His hand and will not let go. It doesn't matter how hard the wind may blow...how the storm rages...we are safe. He sets my feet on a hard place. HE is love.
Happy Valentines Day tomorrow, guys! May your sugar-rush be high and your heart full.
Dana
