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.)

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!!

Dana

(PS - Any typos and lack of writing ability I attribute to Elle's right foot)

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

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!!!

Dana