Tuesday, November 21, 2017

Happy Thanksgiving Week

Quick update from Frazer:

As our family is plugging through November with many mixed emotions, we wanted to share a few things briefly with all of you:

1. If any of you have 40 minutes and would love to hear one of our favorite interviews, please take the time to listen to this piece. It is very well done and tells a larger part of our family’s story and history than just Battens.

2.  As you will remember, Dana and I were able to go to California for a few nights in August. The trip was amazing on many levels. The main reason for the trip was to see the premiere of The Race for Brineura which BioMarin put together. It is amazing and was released to the public last week!  It’s about 30 minutes long and amazingly well done!  Elle is in it also and the movie really captures the essence and heart of BioMarin’s passion for their work.

3.  We are working to get a head start on planning for the 2nd annual Miles 4 Milla’s House which will be on May 19, 2018 at Wiseacre Brewing Company.  Last year was a huge success and we got it together in less than 60 days!  Since we have more time, we are working to gather sponsors. If you or someone you know would be interested in sponsoring the 2018 event in May, please email Frazer at millashouse1@gmail.com.

We hope you all have a wonderful Thanksgiving and we greatly appreciate your prayers and support that you continue to pour out on us, especially during this difficult holiday season without our Milla-Willa.

Fraze and Dana

Thursday, November 9, 2017

Infusion Day and 15th Anniversary!

Infusion 31 and our 15th wedding anniversary today! Last year on this day I was actually at LeBonheur with Milla and Frazer was in Ohio with Elle and Ann Carlyle was staying with family. It was a hard day. A hard week, a hard month, a hard season, a hard year, I could go on and on. It’s still really, really hard. But I’m finding myself thankful too that we are able to be in Memphis together this year and that Milla is with Jesus. My heart feels swollen with love and it feels achy and heavy and broken. Where would I be without my God? He loves us so much. Y’all - bind your heart to His - sit in His love. Praise God He has already bound you to Himself. 

Monday, October 30, 2017

October Update

Hey there!  I'm going to dive right in!

Frazer turned 40 last week!!  He had a great day and we were able to celebrate him well with a a bunch of friends that night.  I'm so thankful for him.  He is truly my best friend, he is my rock, he is my heart.  I love him so.  :)  Our 15th wedding anniversary in a couple weeks on November 9th...so, so grateful God brought us together.  We've been through a lot during those 15 years and I can't imagine not having Frazer at my side living this life with me.

Elle's med situation is going GREAT with her gtube.  She tolerates it well and she (and we) are so, so grateful to have Bob the (gtube) Button taking the medicine instead of Elle.  It has been life-changing for sure.  And shockingly enough, she doesn't try to pull it out - she only is aware of it occasionally when her hand brushes over it and she will absentmindedly fiddle with it, but other than that, she leaves it alone!  

After Elle's gtube placement, we noticed a decrease in her seizure activity as her drug levels stabilized and her abilities kind of leveled back out to her 'norm', appetite came back, etc.  But then she got a sinus infection and was down for the count for a good 10 days.  That was not helpful.  She is healthy now but the frequency and duration her seizures still seem to be on the rise...even more so this weekend and today even though she just had an infusion last Thursday.  Not sure yet what we are going to do about that.

The good news is that cognitively, she is doing really, really well.  We see it at home and her teachers see it as well - an understanding of things that we haven't seen before (or in a really long time).  But just like with everything with this disease, it's complicated.  With her increased awareness of herself and the world and what's going on, it seems like she is struggling - like she gets frustrated because maybe she can't do what she wants to do or what she used to be able to do or what she sees other kids doing.  Her awareness of these things makes her sad or mad and/or belligerent.  And that's hard.  

One of the other moms who's son is on this enzyme-replacement therapy said it well earlier today - there's forward movement and backwards movement all at the same time.  And it's so very hard to process and deal with that and we struggle so much with trying to figure out what's going on with our kids and trying to fix the problems the best we can.  It's heavy and sad and hard and exhausting and it just beats you down.

As I write this, my heart feels raw and broken.  I struggle.  But I also know my Jesus lives.  I know He loves me so much that I can't ever even fathom the depth.  I know that He is carrying me and holds my raw, broken heart in His hands and grieves with me over the brokenness of Elle's body, over the loss of Milla.  I have nothing if I don't have Jesus.  

We are entering into the Christmas season in all it's crazy glory.  Be still and know that He is God.  Remember and celebrate and be in awe with me that He came to earth so that we might have true life.  

Milla's birthday is in 3 days - Thursday, November 2nd.  She would've been 7 years old.  She was doing great last year on her birthday, but just 3 days later she began to decline.  As this week passes and as the next 3 weeks come and go leading up to the 1-year anniversary of her death on November 26th, I feel (and remember) fear and sadness and anxiety and such loss.  Our grief over Milla flows into our grief over Elle.  It all runs so deep and is all so complicated.  Please pray for us as we enter this season.  

Also, we would love it if you celebrated Milla's birthday with us Thursday by enjoying doughnuts from your favorite doughnut shop.  Milla LOVED doughnuts and that's what she always wanted for her birthday treat.  :)

There is so much to grieve over but yet much to be thankful for as well.  As Milla used to say all.the.time, 'Pray!'  She would pray without ceasing, especially during meals, and she would point to all the things she was thankful for...the lights, the table, the food, the ceiling, the chairs, the people at the table...things we take for granted every minute of the day, yet she would remember to be grateful.  God used her, and continues to use her, in mighty ways.  Don't ever underestimate a life - no matter how small - God's precious image-bearers that we are.

Praise God, from Whom all blessings flow!  Praise Him all creatures here below!  Praise Him above, ye heavenly hosts!  Praise Father, Son and Holy Ghost!

Much love and thankfulness for you!

Wednesday, September 27, 2017

Elle's Surgery Update

Rough night. Elle had lots of breakthrough pain, a little fever, heart rate up, o2 sat fell for just a bit so she had to have some binasal oxygen for a few hours. She's off it now and her heart rate is still a bit high (130s). Fever is down. She just ate a little and drank a little. 👍🏼So she's doing ok but jury is out on discharge plans.

(Lots of rational and 'ok' reasons for all these things but keeping a close eye on her.)

Sunday, September 24, 2017

Hello Again :)

Hey there, everyone!  It's been awhile.

We have had a busy couple of months - some of which has been no big news but busy all the same.

On August 10th, I turned 40.  And my precious family and friends planned a month full of celebrations for me that included a weekend trip to the lake with my amazing sister and a bunch of my utterly wonderful and hilarious Memphis girlfriends, a trip to Birmingham for another girls' weekend with 2 of my oldest and dearest friends (also hilarious, by the by) and then, Frazer and I were able to take a trip out to California together to visit Biomarin (drug company) and participate in their official launch party for Elle's enzyme drug, Brineura.

All of it was AMAZING.  I've had a ton of health issues the last 6 months (one of which is my thyroid, which of course, affects every.thing) but the month was awesome and it fed my soul, which gave me energy and emotionally, it gave me a little boost too.  Most likely, my body said 'I'm over it' because of the chronic stress of our lives for the past 4 years but trying to piece it back together has been difficult.  So I wasn't sure if I would be up for all the traveling and celebrations but it seemed to be exactly what I needed.  THANK YOU to all of you that gave me the best 40 year celebration month a girl could ask for.  It was super fun and super special and super soul-filling.  We cried together and we laughed even more.  I can't thank you enough for sticking with me, especially the past 4 years.  You have given so much of yourselves and sacrificed greatly - all with joy and with no expectations.  

Our trip to Northern California was just ridiculous.  It was so good for both of our souls to be out in God's beautiful creation, to be away from everything, to be able to have 5 days of being on an awesome vacation with my best friend.  Our marriage thanks you, California.  It's no secret that the majority of people in our situation or in a similar situation get divorced.  Marriage is hard work in 'normal' circumstances (whatever normal is).  And we have to work so stinking hard to keep our relationship strong - we have had to (and continue to) learn to lean into each other when we least feel like it.  We have had to figure out ways to connect when we feel like ships passing in the night.  Thank you for continuing to pray for our marriage.  From the bottom of our hearts, we thank you.

Also exciting news...this weekend, we celebrated that Ann Carlyle has a brand new heart in Jesus.  :)  Thank you, Jesus, for making her Yours!  There is no other celebration in this life greater than this!  (Heart exploding with gratitude.)

Much of this email is written in machine-gun style - just trying to hit the highlights quickly because Elle's kicking the keyboard and wants to be IN my lap with my arms around her (sitting beside me nestled in isn't good enough), the washer just beeped that it's finished, I have a to-do list 2 miles long, etc.  (Another reason it's been nearly 2 months since my last update.)

Speaking of Elle and how she is doing - well, it's complicated.  She has been having some hard times.  But there are also times of victory in her cognitive ability (she was able to understand and actually accomplish the command to 'go around'!! Things like this are amaaaaazing!), and there are times of victory in her balance and core strength.  The complicatedness is that none of it is consistent.  Her speech and her ability to take assisted steps have both declined a good bit the last couple of months.  And the last couple of weeks, we have seen a weakness in her core that we haven't seen before.

The biggest hurdle we have had with her in August and September has been her meds.  She was choking a lot on the meds and then that seemed to get better for a couple of weeks but then she stopped complying with taking them.  She has been spitting them out and we have tried every trick and maneuver in the book but we are still lucky to get a third (if that) of her medicine in her on any given day.  It has been absolutely awful, utterly stressful and heart-breaking.  And because she isn't getting all of her meds, her seizures are getting worse and worse and we are risking an infection (from aspirating) or a really bad seizure that could do permanent harm.  We are seeing a consistent decline of every ability now that she's having more seizures.  Also, her appetite has decreased and she's been fussier (no surprise there).

So, we have made the decision for her to get a G-Tube (feeding tube) placed.  She will only need to use it for her meds as she is still able to eat just fine.  And we are hoping that once we are able to get her drug levels back up to par and leveled out, her abilities will come back a bit, seizures will decrease, appetite come back, etc.  It's been a particularly emotional few days as we are processing this place we've gotten to with Elle.

Her surgery will be this Tuesday and we will be there for 24-48 hours depending on how she recovers and then she will have her regularly-scheduled infusion Thursday morning.  Please pray for her this week.  The surgery plus infusion back-to-back will be very taxing to her body but we just don't have any other choice.  Please pray that we make it to Tuesday without her getting sick and with no harm coming to her.

Thank you for all your support and prayers!!!!  Saying it a million times doesn't do it justice.  Broken record and I don't care.  What a village you are!!!  You help us get through these long, hard days.  Whether I know you or don't know you matters not.  God has provided for us richly through YOU.  

Much, much, much love!!
(PS - Any typos and lack of writing ability I attribute to Elle's right foot)

Friday, September 22, 2017

Camp Good Grief 5k - Join the G Team!!!

Race Website

Join us Sunday, October 1st, 2017 at 2 p.m for the Camp Good Grief 5K. Please click this link to register https://campgoodgrief5k.racesonline.com/

(And you can join our team, The G Team!!) 

This 5K benefits Camp Good Grief – the Mid-South’s first children’s bereavement camp. The Camp Good Grief 5k is a family fun event. We will have moon bounces, face painting, and games for the kids. Grilled hamburgers, cotton candy, and yummy treats will be served along with soft drinks and bottled water. This is truly an event for the entire family.

Camp Good Grief is an amazing opportunity for grieving children to learn about their feelings, make new friends with other children who have also lost a loved one, and have fun in a supportive environment. And the best part….it is FREE because of support from donors, friends and awesome activities like the Camp Good Grief 5K! Thank you Pugh’s, Memorial Park & Moe’s.

You can run, you can walk, you can just come enjoy the day and have a hamburger – JUST JOIN US!

Thank you!!!

Wednesday, August 30, 2017

Bracelets to support Milla's House - just 1 more day!

Please go to www.hollandandbirch.com to purchase a bracelet (or 2 or 3!) to help support Milla's House.  Half of the proceeds from the sales in August go to Milla's House.  Just 1 more day!!





Thank you, Suzanne Jones, for doing this!