March Update

Up, up and away!!!

Infusion time!

Riding at the Richey Ranch :)

Hello from Columbus!  I decided to get a quick word in while Elle is napping.  

She just finished her 13th infusion a couple of hours ago and it went just fine.  

We flew into Columbus yesterday afternoon and got settled into a new place - the sweet and generous people that have selflessly housed us since last October, are moving...so now, we are staying at the apartment of another (extremely kind and gracious) Batten family that also commutes to Columbus for infusions but on opposite weeks.  The apartment is close to the hospital and close to a few other Batten families that live here, so we are excited about that!

Elle barely slept at all last night after about 1am, so we were both pretty exhausted starting the day - she has been sleeping hard for over 3.5hrs now, partially due to the lack of sleep, I'm sure, but I think her reaction to the infusion as well just wears her out.  

We have spring break this week, so the 4 of us drove to Birmingham for a few days to visit my family (and celebrate my dad's birthday and rode my parents' horses, which the girls LOVED!) and then Frazer, Elle and I drove back to Memphis Tuesday in order to make it back in time for a neurology check-up and then to fly out to Columbus yesterday.  Ann Carlyle is staying in Birmingham for the rest of the week playing with cousins, grandparents, aunt and uncle.  I'm so glad she is able to stay there and do something fun and special during her spring break, especially since it's an Ohio-week.

Please pray for the rest of our time in Columbus and that we will make it back home safe and sound.  Pray, too, that Ann Carlyle will make it home safely this weekend (my mom is bringing her home and will stay a couple of days).

There are some changes coming with the infusions - nothing huge - but a change in the day of the week Elle will get infused and a change in the hospital area where she gets the infusion (inpatient vs outpatient).  Also, we will probably have some extended trips to Columbus coming up due to 24hr EEG and other testing.  So, really no big deal, but just having to deal with logistics and that gets tiresome.  (Shout out to Leigh, Molly and Kathy that make the world go-round when it comes to the logistics of my life!  A lot of this change makes more work for the - so thank you, friends!). Pray that soon, the enzyme drug will be officially and commercially approved by the FDA and that we will be able to get it a lot closer to home.  (As thankful as we are for Columbus and our medical team here, this would be life-changing for our family.)

Thank you for the continued support.  My heart has been heavier than usual the past couple of weeks, but I do feel that God has given me an added measure of comfort and peace this week and for this I am so grateful.  Please pray for us all as we continue to navigate these valleys and this grief and the changes and the unknown and the hope and the exhaustion and the sadness and the joy (that we are sometimes surprised to still have).  Thanks be to God, Who, morning by morning, brings us new mercies and knows just what we need.

Elle-belle is finally awake!  Gotta run.  :)

Much love to you all!

Dana