Wednesday, September 27, 2017
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.)
(Lots of rational and 'ok' reasons for all these things but keeping a close eye on her.)
Sunday, September 24, 2017
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
Join us Sunday, October 1st, 2017 at 2 p.m for the Camp Good Grief 5K. Please click this link to register https://campgoodgrief5k.
(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!
Wednesday, August 30, 2017
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!
Thank you, Suzanne Jones, for doing this!
Sunday, August 20, 2017
|Milla and Mrs. Melba|
You might remember me talking about this special, special woman. She was Ann Carlyle's pre-k teacher and then was Milla's teacher.
God used her in a new and fresh way to show Ann Carlyle His love and that He was her Savior. A new understanding in Ann Carlyle's heart happened that year. And I know that many other parents feel the same way I do as Mrs. Melba taught these little children for 17 years at Second Presbyterian Church's PDO.
Just a year and a half or so later, Mrs. Melba was Milla's teacher. This was the year that Milla had her first seizure, that she started tripping and falling, that she had rages and a hard time communicating as her verbal skills declined. Her seizures grew in number to 700+/day, she was in and out of the hospital, we were trying all kinds of meds to help with her seizures (which all have crazy side effects). Bottomline, Mrs. Melba (and her co-teacher, Missy) loved Milla....loved her so deeply and so well and taught those other kiddos what love looks like. (Although, we could all also argue that those kids taught US what love looks like.)
Mrs. Melba, who was around 84 years old at the time (yes, 84), had planned to retire that year, but she decided to continue to teach because of Milla. She continued to be with Milla for the next couple of years, and as Milla's abilities and health declined, became Milla's one-on-one teacher until she had to retire because she was diagnosed with advanced-stage ovarian cancer.
The relationship that Milla and Mrs. Melba shared is truly beyond words. But those that were able to see them together, even for just a moment, could see all they needed to see in order to know the love they had for each other. They giggled and listened to birds and Mrs. Melba would sing, sing, sing and never let Milla doubt for a minute of Jesus' love for her. Mrs. Melba would sing that they were 'gonna dance, dance, dance' as she would help Milla kick out her legs to 'dance.' And Mrs. Melba would tell her that they were going to sing and dance in heaven. Mrs. Melba would push Milla around in her stroller to visit the babies, to visit the church staff, to go outside to listen to the birds, to look at all the pictures of the kids on the walls of the church and to see Milla's favorite - a painting depicting Jesus surrounded by children.
One life, so young, yet so full of faith and the love of God. Another life, so many years, had lived for so long and had gained so much wisdom and faith and a deep, deep, abiding love of God.
Talk about your super-power-couple. :) I really could talk for hours about them.
Mrs. Melba had surgery initially to get her cancer out but the cancer returned this summer in her abdomen. She had a second surgery just a couple of weeks ago, but has been unable to recover.
Blessed be the name of the Lord for that woman's life. She is exactly where she has longed to be...with Jesus. And she gets to dance with Milla - really dance - as they celebrate together in heaven.
Mrs. Melba's funeral service will be Tuesday, August 22 at 3pm, with a brief visitation from 2-3pm, at East Side Baptist Church in Memphis.
As her memorial, written by her family, states, "Her one big love was evangelism, especially with children, and there was nothing she loved more than to be standing in front of a group of young ones, with her flannel-board, teaching the Bible."
We absolutely adored this woman. What a legacy she leaves. Her life has impacted so, so many...and will continue to do so for generations to come. Praise God!
Please pray for her family as they miss her greatly.
-Dana (please look at that picture of the 2 of them...pictures can sometimes say things that words can't suffice.)
Sunday, July 30, 2017
So I'm sure many of you have seen that we have had a lot going on lately! Good news all over!
First of all, Elle had her first infusion here in Memphis at LeBonheur Children's Hospital! June 20th, we were able to drive about 20 minutes to downtown, get Elle's enzyme infusion and were home by 2:38pm. A.M.A.Z.I.N.G. We are thrilled. No packing, no coordinating childcare for Ann Carlyle for 3 days, no flying the day before infusion, no rental car, no killing time (with a very restless 5 year old) in Columbus, no overnight stay in the hospital, no flight home when Elle is feeling the worst of her post-infusion symptoms. We all slept soundly in our own beds and we didn't have to recover from all the travel/being away from home/sleeplessness. And because of that, we had a wonderful weekend that was restful but fun too instead of just trying to keep it together for one more day. (Don't get me wrong, I still have plenty those days of just trying to keep it together, but we have removed a big and regular cause of that insanity, and for that, we are just so thankful.)
A huge THANK YOU to the LeBonheur team that pulled off Elle's first infusion off without a single hiccup - and all the while, celebrating every bit of it. We had so many people that came to see us that day to wish us well and to offer congratulations and at one point, sparkling juice in champagne glasses was passed around to mark the occasion! It was a wonderful and (good) emotional day.
A special thank you to Karen Butler at LeBonheur who worked tirelessly (not exaggerating here) with Frazer and Biomarin to get insurance approval in order to make this happen at our home hospital. She and Frazer spent countless hours everyday for at least 2 months - on the phone, going in circles, jumping through all the hoops and finally, finally their hard work paid off. To say this is changing each one of our lives is an understatement.
And if that wasn't good enough news, Milla's House is officially open! The celebration and open house for the newest location of the Kemmons Wilson Center for Good Grief - Milla's House - was yesterday. So much hard work and support was and is still being put into Milla's House. And we truly are honored that our girl's life is being celebrated in this way and we are honored, too, that we can be a part of helping the Memphis community. Heaven knows, there is so much brokenness and we all need Jesus.
Frazer and I were asked to speak at the ceremony, and here is what I said...
I wish that everyone in the world knew Milla. If I could, I would talk about her for 2 days straight.
Milla was a firecracker from the day she was born.
She did everything big.
She played big, she laughed big, she got frustrated big, she yelled big, she dressed up big (most of the time, she had on no less than 3 tutus and amazingly could sprint around the house with my highest heels on), and she climbed and jumped off of everything she could.
She also was a big-time introvert and gave everyone she met the stink-eye when she was little.
But when she was at home, she was a complete ham.
She just wanted to laugh and make us laugh.
(Unless of course, she was frustrated and then everyone went down with her.)
I used to say, if Milla was in the room, we were all having a ball or we were all having a really bad day.
But then she had a seizure.
And then another and another and all of a sudden she was having to interact with new people constantly…mostly in the medical setting.
And her little self, although forced by circumstance, blossomed into an extrovert - looooving to be around people and charming everyone she met.
Her heart grew and grew.
And her laughter grew.
Even as her body stopped working.
She would scrunch up her nose and smile so big - to her face’s fullest capacity.
And even when her eyes grew dark and she couldn’t see anymore, she loved the sound of laughter…the sound of other people having fun in the next room would make her smile and giggle. She glowed.
And so she became a bright, bright, bright light for Jesus.
If Milla was near, you could feel the warmth of Jesus’ love radiating out from her.
We are so thankful to honor her life by helping to open a new Center for Good Grief.
Our prayer is that through Milla’s House and the incredible people that work there, people will feel the warmth of Jesus’ love during perhaps their darkest of days.
Thank you again for supporting us and Milla’s House!!
Thursday, we go back to LeBonheur for Elle's 24th enzyme infusion. Please pray that all goes well.
We seem to be at a good place with night-help for Elle so praise God for that!!
Please continue to pray for us all as we miss and grieve for Milla. Our family is just not complete without her. We miss her all day every day.
Thank you for being with us and carrying us through this journey.
Much, much love!
|Elle after her first infusion at LeBonheur|
|Frazer's parents, Kent and Kathie, are celebrating their 50th wedding anniversary this year!!|
|Elle and 2 of her AWESOME nurses at Nationwide in Columbus, OH as we left the hospital after her last infusion there. Bittersweet. We were wrapping up her 22nd infusion there. 10 months. Needless to say, we love these people.|
|Elle and Ann Carlyle snuggling before bedtime|
|Me and Elle during her first LeBonheur infusion - wiped out|
|Dr. Boop accessing Elle's ventricular port at LeBonheur|
|Celebrating Elle's first infusion at LeBonheur!!!|
|Good times at dinner time with Elle :)|
|Milla's House is open!!|
|These two :)|
Friday, July 21, 2017
It’s time to celebrate the grand opening of Milla’s House!
We are very excited and would love for you to join us next Wednesday at Idlewild Presbyterian on Union at 9:45am.
See the official invitation below.
Thank you for your continued support!
Having problems viewing this email? View the web version
Children and Family Enrichment Center at Idlewild
Kemmons Wilson Family Center for Good Grief
Milla's HouseWednesday, July 26, 2017
Idlewild Presbyterian Church
28 S. Evergreen
Memphis, Tennessee 381049:45 a.m. - Blessing of the House (church grounds)
10:00 a.m. - Opening Ceremony (sanctuary)Enjoy refreshments after the event.Join Baptist leaders, the Idlewild community and friends as we celebrate the opening of The Children and Family Enrichment Center at Idlewild and the Kemmons Wilson Family Center for Good Grief – Milla's House.Designed as a place for children and families, this house symbolizes a commitment to foster emotional health through increased collaboration and specialized services.
Monday, July 3, 2017
First of all, THANK YOU for aaaaallll the prayers that you have said for us. Insurance has approved the enzymes and we will start to have the infusions in Memphis starting on July 20th!!! So we head back to Ohio just ONE more time this week, and then Elle's next infusion will be here at home in Memphis. I can't even!
So Elle and I head to Ohio Wednesday morning while Frazer and Ann Carlyle fly to Pittsburg Wednesday for the annual Batten Disease conference. Elle and I will join Frazer and Ann Carlyle in Pittsburg Friday after her infusion. Busy week but we all fly back to Memphis together on Sunday and then no travel for the foreseeable future!
Please continue to pray for health for all of us. Frazer isn't 100% and I have had a sinus infection and bronchitis of some kind for more than 6 weeks now. I think I have finally turned a corner with it, but still coughing a bit. Also, I found out my thyroid isn't working well. I started taking some medicine for it a couple of weeks ago...hopefully, I will feel some positive effects from the medicine soon. I am feeling beyond tired, lots of headaches and just generally feel awful all the time. The last 3 years have been unrelenting stress for us with no end in sight, really. Although, having Elle's infusions in Memphis should certainly help a little (or a lot!) with this chronic stress-storm we are trying to weather.
Milla's House is open!! All are welcome to the ribbon-cutting ceremony July 26th at 10am! I'm attaching the invitation for the details. We had our the first ever counseling session at the House last Friday. :) We are so excited to be a part of this organization that serves our community so well. Here is a link for more information about The Kemmon's Wilson Center for Good Grief and their newest location in Midtown called Milla's House...
Also, Caitlin Lockerbie, a reporter from a local TV station did a story on our family and helped us get insurance approval for Elle's enzyme. We think they did such a great job and are thankful that they wanted to tell our story. Here's the link...
May the Lord bless us and keep us and may His face shine upon us and give us peace.
Much love to all - Happy July 4th celebrating!
|Elle at the Miles for Milla's House Bike Race|
|Elle and a giant unicorn floaty that she wanted to take with her on a walk through the neighborhood (naturally)|
|Elle post-infusion feeling a little puny|
|On our way to the beach Memorial Day week!|
|Ann Carlyle in Florida|
|Elle loved playing in the sand and the water|
|A storm blew over our fence and took out the power for almost a week while we were in Florida - not cool. Thank God for sweet friends and neighbors that propped up the fence and cleaned out our fridge.|
|A rare night out on the town in Florida|
|Ann Carlyle photo-bombing the picture I was taking of Frazer and Elle kayaking in the ocean :)|
|A family picture at the beach - everyone is looking and smiling!|
|The last couple of hours on our way home from the beach were pretty rough - Elle finally passed out and gave us 20 minutes of peace|
|Ann Carlyle and Lady|
|Lady riding shotgun - she insists on jumping in the car any chance she gets!|
|Ann Carlyle at Camp Good Grief|
|A spontaneous morning nap - sometimes life catches up with Elle and she crashes - I'll take those snuggles any day of the week.|
|Face paint, pjs, Guess Who game-playing and mommy's fuzzy slippers in the backyard as the sun goes down - just a day in the life of Ann Carlyle this summer (and does anyone else think she looks like a teenager in this picture?!)|
|This girl had suuuuch an amazing time at Camp Good Grief|
|Elle in her playhouse|
|Me and my sister, Dawn at the U2 concert that she and her husband, Jeff, took us to in Louisville, KY a couple of weeks ago - such an awesome gift and good time together for a couple of days|
|A day in the life of Elle - multiple costumes at one time - a superhero pumpkin that day|
|Elle during an infusion|
|Elle feeling yucky after an infusion|
|Another day in the life at our house - Frazer trying to catch a cat-nap and Elle (dressed up of course in her ballet leotard) doing her best to NOT let him sleep (and howbout those legs that are miles-long...)|
|Invitation for the Milla's House ribbon-cutting ceremony|
|Milla's marker was finally placed - we are thankful to have it there but it cuts deep into our hearts. Oh how we miss that little girl.|
|Sweet sisters at bedtime|
Sunday, June 11, 2017
Hey everyone! Hope you are all well. Thank you, thank you, thank you for your continued prayer and care and love and kindness. Truly, God moves through people and holds us up through you all. There is no prayer too small, no kindness or generous act too small. It is all stored in our hearts and brings constant encouragement to us as we often are just trying to keep our heads above water.
The waves have been hitting extra hard over the past month or so. Our trips to Ohio have been full of difficulties and we have seen a steady decline with Elle throughout the last 4-6 weeks. Her seizures have increased in number and severity - although, the seizures are still way 'better' than they were back in the fall. She has lost more strength and coordination and muscle control. She has lost more of her speech - both receptive and expressive. She is not complying with taking her medication as well. Her rages and frustrations have increased a bit...some days are better than others. Her sleep has been bad. And on and on.
However, we have seen a little bit of a good rebound in her condition after her infusion last week. Friday and Saturday were really great days and she was so happy and vibrant! We love seeing her playful and silly and giggly and funny - her true personality coming through. Today, she seemed a bit more tired and irritable and I noticed a lot more seizures than she's had the last couple of days.
So we just never know what her days and nights will look like, There is no pattern to any of her sleep, seizures, tiredness, crankiness, strength, speech ability, etc. And while we are utterly thankful for these enzymes that she gets every other week, we have no idea how long these enzymes will keep her disease from progressing and we have no idea how quickly her disease will progress.
We know that God knows this, though. We know that Elle's days and nights were laid out and planned before time began. He has always known her. He MADE her. He formed her and loved her long before we knew her and loved her.
And so when our faith falters and the frustration and anger come barreling into our souls, when despair threatens to undo us, this is what we have to preach to ourselves. This is what we have to remember and this is what we have to lean on. How deep the Father's love for us! How vast beyond all measure! And it doesn't matter if we feel lovey-dovey about it all. Our God is steadfast. He does not love us conditionally. When we stumble and fall apart from the weight of all of it, He remains ever-present, ever-loving.
Our Milla-willa has been gone for 6 months and 2 weeks now. We miss her so much, so deeply. I can't even begin to describe the longing we have to see her and hold her and listen to her belly-laugh again. Please pray for our hearts as we grieve and try to find our way down this road. Oh Jesus, how we hope You would come back soon.
As you know, Elle's enzyme medication has been approved by the FDA, which means we can have her infusions done here in Memphis. And this is sooooo exciting!! BUT, we have to wait for insurance to approve it. So this is our biggest hurdle and biggest prayer right now - please pray for this approval! And pray that it will happen quickly. It has already been about 7 weeks since the medication was FDA approved and we need things to move along quickly. Our hospital here in Memphis (LeBonheur Children's Medical Center) is ready to go - which is amazing and we are so very thankful for them working so hard for us. So please pray, pray, pray for our insurance to approve it!!
We are surviving summer so far - we kicked it off with a beach trip to Florida Memorial Day week which was exhausting but really good. We are a family of beach bums and the ocean soothes our souls. :)
With the exception of this coming week, Elle will continue to have school throughout the summer - it is a very good thing for her to have this activity and stimulation for her brain. (And good for her momma to have a little break from her constant activity and constant stimulation she needs.) Ann Carlyle is going to a couple of day-camps this summer and has a pretty full schedule of activities to keep her busy.
Ann Carlyle also just finished up 3 days of Camp Good Grief and it.was.wonderful for her. She loved it and learned so much. She was able to be around a bunch of kids around her age that had all lost someone close to them...she was able to talk about Milla and all the complexities of her grief concerning both her sisters...she was able to have FUN and laugh and dance and see that all those things are okay too...she was able to comfort other kids and help them with their grief as well. What an amazing camp it is!! And y'all, the people that run the camp and the people that volunteer to help out with these kids are unbelievable. We have this treasure of a place (The Kimmons Wilson Center for Good Grief) right here in Memphis!!!
Speaking of, The Center for Good Grief's newest location - Milla's House - will open be opening soon this summer!! Stay tuned for more details about the ribbon-cutting ceremony that will take place in July. We would love for anyone that can make it to come out to celebrate Milla's life and this wonderful organization that is serving Memphis so well.
Okay, so I could type forever - I feel like I am leaving out so many things, but I gotta go get some sleep. (Please continue to pray for our health - all of us - Frazer and I are so worn down physically and emotionally - life is definitely taking a toll on us.)
Much love to you!!
Friday, May 12, 2017
Miles 4 Milla’s House is one week away! Please consider supporting us in raising awareness and funds for Milla’s House, which will open later this summer. You can ride or show up and party at 11 am May 20th! Sign up and/or donate here: www.miles4milla.org
There are “register” and “donate” buttons on the far left of the page.
Sign up by Monday, May 15 by 10am to be guaranteed a T-shirt at the event!
Thank you for supporting this wonderful event and cause!!! You can find more info on Milla’s House at www.miles4milla.org