Races and Planes and Boats (and a couple of pics)!

Hello all!  Can you believe I'm already sending out another update?!  (Frazer might've written much of this...and that maaay be why y'all are getting an update so soon after the last one...)  

We wanted to update you on the girls since our last post and to provide an update on our recent trip to Ohio.  Before we dive into that, we want to pass along some info.  We would love for any and all to join us Sunday, October 4th at 2pm for a 5k and/or 1 mile fun run benefitting the Center for Good Grief.  It is a wonderful organization and has had (and continues to have) a huge positive impact on our family since we started going last December.  Here is a link for more info about the race and feel free to contact us about it (we have created a G Team so make sure you sign up with our team!)...

https://campgoodgrief5k.racesonline.com/ 

Generally speaking, Milla’s congested lungs and difficulty in breathing has been better the past few weeks, with a scare or two here and there.  For the most part, the fluid seems to have left the lungs and we are thankful for that but her swallowing is becoming increasingly more difficult.  However, she has been back at PDO and that has been so good for her (I can't begin tell you how good this has been for her spirits!), she LOVES her PDO teachers and friends and they take such great care of her!  She does continue to weaken, but her spirits have been good and boy, is she is a fighter.  When we were naming Milla, we chose Louise Mildred because they were both family names, but specifically Louise had a ring that Frazer loved, especially after he searched the meaning of the name.  “Louise” means renowned or famous warrior.  "Mildred" means gentle strength or gentle advisor.  What a combination - gentle warrior - one that is amazingly fitting of Milla, even as she struggles with Battens.  She is fighting it each day, and it’s been amazing, not only to witness her character ourselves, but also to see how her beauty affects others.

Elle is doing okay and while we are seeing more seizures and less “spacial awareness” (bumping into doors, walls, etc.), she is still learning things and running around.  However, she also continues to have much harder days, temperamentally speaking.  Those days are hard for everyone and will run us all down pretty quick, as most screaming kids do.  

Many of you know that we went to the Batten Disease Center of Excellence in Columbus, OH to meet with Dr. Emily de los Reyes and her team at Nationwide Children's Hospital last Sunday through Tuesday.  Dr. Emily and Dr. LeAnne are two of the doctors we met in Chicago in July at the Batten’s conference.  While not necessarily “ground breaking,” our meeting was very, very good.  We met with both neurologists as well as physical, occupational and a speech therapists.  We were there for about 5 ½ hours Monday and Milla went back the next morning before our flight to work with the speech therapist on her drinking and eating, so it was pretty informationally intense for all of us.

Overall, we learned a lot about the girls, their meds and Battens and the doctors were able to shed some light on our path moving forward.  The therapists gave us some exercises and recommendations to help both girls with their strength, eating, drinking, motor skills, etc.  We have had both girls in all three therapies for a while and meeting with this team provided us confirmation with what we are already doing but also some new things to try.  

Dr. LeAnn's specialty is sleep and she was especially helpful with the girls' sleep - we are trying a new drug at bedtime for Elle - and so far it's been working!  However, Elle's been a bit more sleepy in the daytime hours - although this could also be due to a cold she's been fighting this week.  Time will tell.  Dr. Emily spent the most time with us and the girls gave us good insight about where Milla is now and how Elle is doing, both of which were encouraging and helpful.  We decided to tweak one of Milla's meds and we have a few more ideas on some tweaks down the road (we don’t want to make too many changes at one time we will know what is working and what is not).  Milla seems to be doing pretty well, relatively speaking, with the large exception being the lack of muscle tone in her neck.  Dr. Emily has not seen it deteriorate to this point this early.  However, she was encouraged by her interaction and awareness, as well as her desire to want to be active and involved with those near her.  As for Elle, she also seems to be doing well - again, relatively speaking - and we are going to keep her in all her therapies and continue to work with her to maintain as much strength, coordination and speech as we can, as these things can be beneficial, even long-term.  

You might have noticed that we said 'flight' a few paragraphs ago and not 'drive'!!  A generous soul offered us a private plane to get us to Ohio Sunday afternoon and home again Tuesday morning.  This not only saved us 2 or 3 days of travel time, it really removed a lot of the stress of making this trip happen.  It. Was. Wonderful.  We want to express how immensely grateful for those that made this happen!!!  We continue to be blessed with people helping us in every way possible.  God is good!!!

We also wanted to share one final piece of news.  Our Palliative Care doctor is Dr. Melody Cunningham and she has been so good to our family as we go through this journey.  She and her team have come along beside us and have helped us every step of the way.  She has been named a finalist as Caregiver of the Year award (http://www.lebonheur.org/news-events/news/press-release-archive/2015-press-release/schwartz-award-finalists.dot) and we are so excited for her to receive this honor!!  (We are pretty confident she has this award in the bag!)

Oh and one more bit of good news...we have gotten approval for an LPN (nurse) to help us 18 hours per week(!!!).  This is an amazing blessing especially as Milla progresses - we are hoping to use this LPN to accompany Milla to PDO for as long as possible - as we continue to see such benefit from her going.  As I've said before, going to PDO gives Milla strength and joy.  We will also have time to use the LPN here at home during the week.  So please pray for this transition and for this person - that it will go smoothly and that she will be a perfect match for our family.  (Also, we have recently had a new weekend CNA to help us at night.  She started this past weekend and all is going well!)  Pray that all of these relationships will continue to grow and will be a true help and blessing for all.

Please continue to pray for us as we feel the strain and exhaustion of such a long and chronic situation.  There are days when it feels like we are in the middle of the ocean...in a storm...with nothing more than a half-deflated life vest to keep our heads above water.  But then God's hand moves and we are given a nice, sturdy boat to rest in, even as the storm rages on.  You people are the boat.  He is ever-faithful even when our faith fails.  His love is everlasting even as our love wavers and is lukewarm.  He is our Rock to stand on so we are not consumed by anything.

But we are tired.

When I said, 'My foot is slipping,' Your love, O Lord, supported me.

When anxiety was great within me, Your consolation brought joy to my soul.

Psalm 94:18-19

Thank you for meals and prayers and planes and boats (real and figuratively speaking) and for loving on our kids and for oil changes and your written words and your spoken words and your time and flowers and help with our dog and drapes and your smiles and immense generosity and hugs and tears...there are approximately 1,984,329 more things we could list...

All in all, we love you and never fail to thank God for you!!!

Dana and Frazer

Milla on the plane - she LOVES to fly!!!

Elle - always dressed in something with tulle

The beautiful sunset in Columbus, OH one of the nights we were there.