Miles For Milla's House

Hey everyone! 

Here is the Miles for Milla's House Event website where you can find out more information and register for the event.

miles4milla.org

More to come soon! 
Dana

SAVE THE DATE!!! – May 20, 2017

MILES FOR MILLA’S HOUSE

Please save the date for Miles for Milla’s House, a bike ride and party on May 20!!

We are planning a bike ride (40 mile option at 9am and 6 mile option at 10:15am) and post-race party (11AM) to help raise funds and awareness for newest location of the Kemmon’s Wilson Family Center for Good Grief, Milla’s House.

The start and finish for the rides and the post party will all be at Wiseacre on Broad, just a few blocks from the location of the new Milla’s House!  More info including registration will be coming very soon, but we wanted start spreading the word now as May 20^th is quickly approaching!

** Please be advised that even if you are not a "rider" you and your family are still welcome to attend the party at Wiseacre and support Milla's House. 

Here is a link to press release about the opening of Milla’s House later this summer.

http://www.baptistonline.org/news/2017/baptist-to-expand-grief-services-to-midtown-memphis-and-jonesbor/

(Wanted to blast this info out there...I'll post a family update soon.)

Frazer wrote an article...Check it out if you can :)

My daughter is fighting a rare disease. A ‘streamlined’ FDA won’t help her

https://www.statnews.com/2017/03/17/rare-disease-batten-fda/

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

Milla's House Press Release

We are so excited to announce the opening of Milla's House!  See below...

MEMPHIS, Tenn.,  March 1, 2017- Baptist Memorial Health Care announced today it will be opening two new grief centers; one in midtown Memphis and the other in Jonesboro, Ark., where Baptist has one of its 17 hospitals, NEA Baptist Memorial Hospital. 

Baptist opened the area’s first grief center, the Kemmons Wilson Family Center for Good Grief, in 2005. The midtown location, the Kemmons Wilson Family Center for Good Grief, Milla’s House, will open this summer on the grounds of Idlewild Presbyterian Church. Baptist also spearheaded the area’s first grief camp for children, Camp Good Grief, in 1999. 

The NEA Center will open in October at 1717 Executive Square and will offer free grief counseling and seminars to those in need. 

The model of care at both grief centers will mirror the services and programs available at Baptist’s original Grief Center, which, according to Baptist leadership, has grown exponentially under the leadership of executive director of bereavement Angela Hamblen Kelly.

The Kemmons Wilson Family Center for Good Grief, Milla’s House, is named in memory of Milla Gieselmann, the 6-year-old daughter of Memphis couple Frazer and Dana Gieselmann. In November 2016, Milla died from Batten disease, an inherited neurodegenerative disorder for which there is no cure.  

The Gieselmanns’ 5-year-old daughter, Elle, also tested positive for Batten disease, while 8-year-old Ann Carlyle tested negative and is healthy. The Gieselmanns have relied heavily on the Grief Center, and Milla’s father, Frazer Gieselmann, says the Center continues to be essential to their family's journey through a grief that is complicated and messy. He emphasized that the Center had not only been essential to his family, but to his extended family and close friends, as well. 

Dana Gieselmann, Frazer’s wife and mother of Milla, Elle and Ann Carlyle, said, “The Memphis community has benefitted greatly from the Center for Good Grief, and it is our great pleasure to have the opportunity to support the opening of the Midtown location, while also honoring our daughter Milla. Her short life of six years touched so many. Our hope is that Milla's House will provide the help our community needs to deal with the reality of living in a broken world.”

For more information about the grief programs available at Baptist, please visit www.baptistonline.org.

Good Things

So I didn't realize until after I sent the last email/post that 'virus' was probably not the best subject line.  Sorry about that!

Thank you so much for your prayers, always - God has kept us healthy and Elle was completely healthy going into last week's infusion.  She had her typical symptoms post-infusion with nausea and fever but the nausea seemed a little less.  Also, her usual super fussy/grumpiness the Sunday/Monday/Tuesday after an infusion has been nonexistent this week!!!  It's so wonderful to have her happy and silly and smiling and giggling so much.  

Also, her seizures have continued to be so much better!  It's amazing and we are so very, very thankful for this bright spot in her life - it gives her such a better quality of life.  I feel that she is still noticeably weaker than she was in January but she is fighting to keep those muscles strong. Her determined and willful spirit is a good thing as she fights this disease. :)

Elle's sleep has been less than stellar but we are getting through. 

A specific prayer, please, for sleep for her as well as appetite.  She lost 2 pounds in between the last 2 infusions (a 2-week time span).  But thankfully, her appetite has seemed to improve the last few days and she has even been eating new foods (which she rarely, rarely, rarely does)!  Please pray that she continues to eat and try new (and healthy) foods!

And please continue to pray for Ann Carlyle.  I think she is having a rougher-than-usual time lately processing Milla's death and trying to deal with Elle and momma traveling so much.  Please pray for her heart.  And pray that she is able to process things in a healthy way.

Frazer was able to get away to snow ski last weekend with some buddies.  We are so thankful that it was a wonderful time for him and thankful for a short reprieve (relatively) of the weight that is constantly on his shoulders as husband and father. (And sooo thankful that he came back in one piece and no injuries!!)

We continue to strive to rely on our God to sustain us - to give us strength - to give us life and joy.  The light is brightest when darkness is present.  He is good.

Much love!

Dana

Virus

Hello to all!

We are keepin' on keepin' on around here.

Elle's last couple of infusions have been a little difficult.  Last week, she had a fever virus earlier in the week that rolled into her infusion day.  Then her infusion had her feeling pretty crummy and that crumminess continued into this week as she was still getting over her virus.  We had to take her in to get a chest X-ray yesterday just to make sure nothing was going on in her lungs.  The doctor ended up checking everything...lungs, blood, urine, etc. but thankfully everything checked out okay.  So we are praying that she gets healthy and strong by the time we go back up to Columbus next week.  This morning she really seems to have turned a corner.  She's super tired (having a fever for so many days in a row will do that to ya) but her cough and congestion has cleared up a lot.

We aren't sure if the virus combined with her last infusion was the culprit but her speech and muscle coordination/strength have dipped back down and her seizures have been worse.  Cognitively, though, she seems stronger.  Which is amazing.

So basically more ups and downs.  More hospital stays and doctors offices.  And as a fellow Batten mom told me the other day, when she's up, I'm up but when she's down, I'm down.  It's hard not to let my emotions ride along with Elle's ups and downs...it's hard not to let those emotions lead my days.

And the lack of sleep isn't helping matters.  I don't really get much sleep at all while I'm in Ohio with Elle and then one of our night nurses was sick this week so I'm recovering from a severely sleep-deficient week.

Please continue to pray for our travel and that the weather cooperates (which it has so far!).

Pray for our hearts as we try to find our way through each day without our Milla being here with us. 

Pray that Elle gets lots of sleep and rest the next few days and that she feels better and stronger.

Pray that the rest of us stay healthy (which we all have - miracle upon miracle!) and that this city gets healthy.  These viruses are running rampant around here!  It seems like everyone I know has at least one sick family member.

Happy weekend and much love to you and yours,

dana