September 25th Update - Elle's Treatment

Hey everyone!  

I wanted to update all on what has been going on with us lately.  We had kept this off the blog for awhile but now feel ready to put it 'out there.'

At the beginning of the month, Elle went up to Columbus, Ohio to have a port put in her brain in order to receive an experimental medication every other week (for the next foreseeable future).  She was up there for almost 3 weeks.  I had sent some emails to keep some friends and family updated so I am going to post those below in chronological order to get everyone up to speed.

There is more detail in the emails below.  We are headed back up to Ohio this week to get Elle's second infusion of the enzymes (the experimental medication).  Please pray for this trip, especially as all 5 of us will be traveling to Columbus this time.

Oh and really quickly...

Elle's port site is still looking great and healing well.  She had a drop seizure Friday morning that threw her into a door frame and she had to get a couple of stitches on her forehead.  Her seizures are just so frequent - almost constantly - and the past couple of days have been very difficult for her.  She has been inconsolable and so irritable.  Much of the time, she doesn't even know what she wants.  Also, her walking has declined again.  We are hoping and praying that another dose of enzymes will help boost her...we are cautiously optimistic as we saw some little improvements after her last infusion.

Ann Carlyle is doing well.  No big changes with Milla this week.  We are all still healthy!  We are still utterly exhausted as our night help has been inconsistent at best this week.  Please continue to pray for this issue.

Thank you all for reading this and keeping up with us and supporting us in so many ways, big and small.  It all matters.  Matters a lot.  Much love!  (Early September updates to follow...)

Dana

September 6th Update - Boring!

Hey y'all!  

Elle is doing great - really great!  She is actually talking and walking better than she has in a month.  Not sure why.  She hasn't received any new medication, but we are excited to see her doing so well!  Praise God and thank you for praying for her!

Milla is still having a hard time somedays with seizures, but a little less than before.

So not much news this week so far - pray that we stay boring!  Pray we will all stay strong and encouraged.  Pray for health for all as we enter cold and flu season especially.

Much love to everyone!  God is good!

Dana

Camp Good Grief 5k

Hey everyone!  The Center for Good Grief has meant so much to our family and extended family and close friends.  They have walked with us on this road since the beginning almost 2 years ago.  They hold fundraisers every year and this is a good one!  Please consider signing up and running or just donating to this amazing organization.  Go to their website to learn more about what they do and to register!
https://campgoodgrief5k.racesonline.com/home

Sunday, October 2 | 2:00 PM Memorial Park Cemetery | Memphis, TN Register Now It's time for the annual Camp Good Grief 5k! This race is back in 2016 with all of the family-fun activities you've come to know and love. There will be moon bounces, face painting, and games for the kids. Grilled hamburgers, cotton candy, and yummy treats for everyone! This is truly an event for the entire family. PLUS, all 5K finishers will receive a finisher medal! And that's not all! Register between now and September 12 and your name will be entered into a drawing for a beautiful floral bouquet from Pugh's Flowers.  In memory of our lost loved ones, we will hold a dove release right before the race begins. Make plans to join us this October at the Camp Good Grief 5k! Camp Good Grief 5k Website The Camp Good Grief 5k raises funds to give children ages 6-12 an enjoyable, accepting and supportive environment in which they can freely express their feelings about the loss of a loved one at Camp Good Grief at no cost.  The camp is made possible through a grant from Baptist Memorial Health Care Foundation, individual donations and partnerships with local businesses like Pugh’s Flowers, Pugh’s Earthworks, Moe's Southwest Grill, and Memorial Park Funeral Home and Cemetery. Camp Good Grief 5k

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Tough Week

Hey guys - 

We got more bad news over the weekend.  Elle had her 24-hour EEG and did really well (behavior-wise) while we were there.  But the EEG confirmed what we thought was the case, that she is having hundreds and hundreds of little seizures every day.  She is also having ones all night long, which we did not know and she has not had before.  Too, the EEG confirmed that she is having atonic or drop seizures along with the absence and myoclonic ones.  

Also, Milla's doctor thinks that her 'attacks,' that I described in my last update, are seizures...possibly grand mal seizures...they just look different because of her condition.  I have had to give her rescue meds at least once a day for the last 12 out of 14 days or so.  For reference, we haven't given rescue meds to Milla in months and months, maybe even a year.  And when we last gave it, it was a super long time before that that she needed rescue meds.

So not much good there.  We are adjusting meds for both of them and hoping that will help.

Another rough part to our week is that we had to put our dog, Maddy, to sleep earlier this week.  She was 13 years old and had stopped eating last weekend.  I took her into the vet Monday and they found a huge cantaloupe-size mass in her abdomen.  We were pretty worried about how Ann Carlyle would handle the news, especially since she was at school when I took Maddy to the vet, but she's doing okay.  We miss having Maddy around!

I can't tell you how much we appreciate (understatement) your love, prayers and help in all ways, big and small!!

Much love!

Dana

Let us strive to know the Lord.  His appearance is as sure as the dawn.  He will come to us like the rain, like spring showers that water the land. (Hosea 6:3)

Hospital Visits and Schools and Bearing Up

Hey everyone!  

We were at LeBonheur yesterday with Milla - she was getting her G-Tube converted to a GJ-Tube.  She is having some reflux issues when she gets her meds through her G-Tube.  The GJ-Tube goes into the small intestine (instead of the stomach), so we are hoping this will help the reflux.  It was supposed to be a relatively simple procedure as they use the same G-Tube site and just put in a longer catheter.  But it turned into a 7 ½ hour day at the hospital with a few hiccups and issues.  She's okay today...sleepy and lethargic but that's to be expected due to lots of meds over the last 24 hours (including extra meds overnight).

Milla is also still having a lot of choking on her saliva.  We have increased her dose of a medication that dries her up...but we have to be careful not to dry her up too much as this can cause, among other issues, a plug to form and make breathing difficult.  As always, we gotta walk a fine line with these medications.  We have also made changes with another couple of meds to (hopefully) help her tremors and tight muscles.  She's having a very hard time with this and she has had a few attacks that have gotten so bad that her breathing has become erratic and she has been in obvious distress.  I've had to give her 'rescue' versed and an anti-spasticity med to help her body relax.  (Such as in the early hours of this morning.)  We are still not sure exactly what these attacks are.  They could be seizures, disease process, anxiety (due to confusion and not being able to see) - maybe a combination of all three.  Her neurologist confirmed last week that her vision is mostly gone.

Elle is still weak and unbalanced and she is napping sometimes twice a day, but I do feel like she's gained a little bit of strength back after her pneumonia.  We now have a small, very lightweight walker for her that gives her just enough support/balance that she can run around the house and move around a bit more independently (independent from other humans at least!).  She is still having drop seizures so there are still lots of falling risks but the walker is helping a ton.  Also, the walker is making her more active which will build up her strength and coordination...or at least maintain it.

Elle will be getting a routine 24-hour EEG this Friday-Saturday at LeBonheur.  (Seems to be our home away from home at times.)  Thankful it's just for 1 night though!  Please pray that she will do her normal thing with seizures so that the doctors can get an accurate picture of what is going on in her brain.  And pray that her mama won't go crazy trying to contain and entertain her in the hospital room!

Bottomline, both girls are continuing to decline a good bit day by day.  It just doesn't get any easier.  God's peace has definitely been ever-present as we go through each day.  It is sustaining and I feel like I am being carried through all this.  I am, of course, always struggling with my fears and grief and aches and questions and overwhelmed-ness but I feel joy too.  Joy and love and...well, we are still standing and functioning (relatively!) so that's something right there, right?! :)

Ann Carlyle started 2nd grade yesterday and of course both yesterday and today we have had to wake her up to get ready for school.  99% of the summer, she was up at 6am and now we are having to wake her up after 7.  Why do their little bodies switch over to wanting to sleep-in the minute they need to get up and get ready for school??  So we are having to switch gears for sure but she has a great teacher and a great group of kids in her class - I truly think it is going to be a great year for her.  She's come home from school both days full of energy and excitement.  

Ann Carlyle's little heart is continuing to grow in love and empathy and nurture with her sisters.  She is full of patience and full of grace with me and with her sisters.  (She is also full of energy and words, but anyway...) My cup runneth over with these girlies.  They are all 3 so amazing and wonderful and special and beautiful and I can't possibly contain my love enough to put it into words.  I am so very thankful I get to be their mommy.  (Sorry for the cliche but it's just true.)

Frazer and I are hanging in there.  Milla's had a lot of nights that she has needed extra medication so even though we have an aide at night, we are still having to get up.  So we are exhausted from that and exhausted from the mental and emotional strain as well.  Please pray that God will continue to sustain our exhausted bodies and that He will continue to give us the daily sustenance we need for our souls.

Also, please pray for Frazer's dad, Kent...he had a stroke a couple of weeks ago.  He is okay...no permanent effects but they are monitoring his heart and had a heart cath today to make sure all is well.  There are more than a few other health things going on with other family and extended family - please pray for our clan.  Everyone is carrying an extra load of burdens lately.

On a positive note, Frazer's younger sister and her family came down from New York to visit this month.  It has been wonderful to see them as we don't see them much and Meg (his sister) had a new baby boy this summer that we needed to meet and cuddle and hold!  Frazer's other sister, Lea, who lives in Little Rock, came to visit as well and brought 4 of her 5 kiddos with her.  As awful as Kent's stroke was, it was so great that all 4 of Frazer's siblings were in town at the time.  And the gazillions of cousins have had a GRAND time being together.

People always ask how we are doing (it's the southern way).  And I struggle to say 'fine' (again, the southern way) but also trying to be honest.  Some days I guess we are relatively fine...no big changes/drama and floating along in our norm as best we can.  Many days I am not fine.  I usually say I am 'hanging in there.' (See above paragraph)  But I've discovered something new...'bearing up.'  (I think it is a common phrase in the UK.)  I am bearing up - bearing a very heavy and chronic weight on my shoulders but still standing.  And I don't always want to hide the weight of all this and act like all is 'fine'.  I want people to know that I am bearing the weight but only because we have a Savior that loves us so and who gives us a reason beyond the broken details of this life to hope and to live.

"Blessed be the Lord, Who has not left you this day without a redeemer." (Ruth 4:14)

May you all have a wonderful week filled to the brim with joy.  Much love,

Dana

Ann Carlyle helping out with Milla's PT and OT

Sweet sisters

Cousins!!!!

More sweet sister time

Aaaaand It's August

Hey there!  The fun never ends around here! ;)

Elle has had pneumonia and after a week and a half of coughing and a very high fever, she is finally on the mend.  Fortunately, she didn't have to stay in the hospital - she didn't need oxygen or IV fluid and she was able to take oral antibiotics.

So we are very thankful for her recovery but this crazy infection has left her very weak and unstable.  We are hopeful that she will gain back this strength and stability now that she is up and about and active again.

Milla also has been fighting off a cough and low grade fever.  But she is super-girl, as usual, and has kept it at bay.  We started her on an antibiotic a few days ago to make sure it doesn't progress into a pneumonia situation.  She is still coughing and choking a good bit but she is eating and her lungs are staying clear.

Please, please pray for these girls and their lungs and their strength.  

Ann Carlyle starts school (2nd grade!!) next Monday and the other 2 start their new school schedule this week.  Milla also starts back her homebound school sessions twice per week.  Add to it, additional therapy sessions for Elle-belle and it makes for a ridiculously packed schedule every week.  But after the summer and being stuck at home on the couch with sick babies for a week and a half, I'm kind of ready for the activity and the busy schedule.  

I'm sure this 'readiness' will last exactly 2 weeks and then I'll be over it. :)

Thank you for loving us!  We love you back!

Dana

It's Soooo Hot

So we are staying inside or in the pool (which all 3 girls LOVE) for sure.  It's ridiculously hot.

Unfortunately there's nothing really positive to report on Elle's condition.  She is still losing skills and losing words (she couldn't remember the word 'up' yesterday).  It's so hard to watch these things disappear.  I know it goes without saying, but it's just  really hard.

Also, we are seeing more disease progression with Milla. She seems to be losing her vision...not sure how much she has lost but I think a good bit.  And I think her dementia progressing.  She is having large emotional swings, including sobbing episodes that just break your heart.  This is a stage we have dreaded so much...it's hard to see her confused and emotional with the darkness (visually) closing in.  Our prayer is that she will be able to be comforted, that she will still feel joy and happiness and that she will continue to know us.  (So far, all these things are still happening.)

Praise God for a good trip to St. Louis!  Thank y'all for praying for us and this trip!  It was a miracle...the girls all traveled well and slept well!  Ann Carlyle had a BLAST - she made some good friends and got to go to the City Museum and Grant's Farm and a Cardinals baseball game.  

Frazer and I also had a good time.  It was not as stressful for me as last year - amazingly even with the girls with us.  There were still times I felt overwhelmed and I came home exhausted but we had wonderful time with other Batten families and we came away with updates on the latest research (it's amazing what they have done in the last 2 years - HUGE strides).  And a big, big thank you to those that made this conference happen, from the BDSRA staff to the doctors to the researchers to the volunteers that cared for all the children...what amazing hearts you all have!  We are grateful to be a part of such an amazing community.

In other news, Frazer started a new job last week.  How about that for crazy?!  He is excited for the opportunity and we are blessed that his old place of employment was so, so wonderful to our family and we feel that the new place will be as well.  Please pray for his continued success and satisfaction with his job.

Things continue to ramp up as we are starting to do more therapy with Elle (speech, occupational and physical) and as we have school starting before we know it and some other changes here and there.

Oh and thankfully, I think we have settled into a new crew of CNA's to help us at night.  There will be 3 regular people each week.  There is a bit of adjustment and learning curve for everyone but they are doing well so far.

I feel so scattered writing this today - interruptions by a couple little girls do not make for good writing. But let's be honest - really, there aren't many moments that I don't feel scattered.  :)

God is good and His love is ever-present.  Thank you for being a part of that as He continues to use you to encourage us, hold us up and love us.  We praise Him in good times and in bad times.  For He holds us close to Himself during the storms.  What a Savior we have.

Much love,

Dana

Ms. Melba came for another visit!

Elle with Colson - cousin love :)

Ann Carlyle at The Children's Museum - Mommy date!

Ann Carlyle helping out at Milla's PT and OT with our awesome therapists

Elle with Granddad