A dear friend and fellow Batten mom from California (they lost their oldest son last September and their youngest son is receiving the same enzyme treatment as Elle) reminded me the other day to look at it this way - each day that goes by is not a day farther away from Milla, it's a day closer to when I get to see her again. We preach this to ourselves over and over and sometimes it reaches our hearts too. The deep pain is sometimes too much for words.
April is always a crazy busy month because Ann Carlyle's birthday is April 6th (8 years old!!) and Elle's birthday is April 20th (5 years old!!). I know every parent says this and I know I say it every year, but I can't believe how old my babies are getting. 5 years seems especially old to me though...Elle is officially not a baby anymore...and we feel she is doing measurably better with the enzymes than she would be at 5 years old without the enzymes.
So between birthdays and birthday parties and a new canine family member and Ohio trips and big announcements and just regular life, the weeks have flown by.
Ever since our dog, Maddy, died last August, Ann Carlyle has been begging (and begging and begging and begging) for a dog. Back in August and through the end of the year, I could not imagine getting another dog. Of course, Ann Carlyle insisted she would take care of it but we all know who ends up taking care of the dog after the first week or 2. But sometime in February I admitted to Frazer that I was thinking about thinking about thinking about the possibility of getting a dog. It was a sloooow process. But we finally decided that we would surprise Ann Carlyle with a dog for her birthday. After extensive searching, I had picked out a possible rescue dog but we weren't able to meet/get the dog by Ann Carlyle's actual birthday, so we surprised her first thing in the morning with a card that told her we were getting a dog. Y'all, she was so cute. She had to read it a few times, did some double-takes and asked 'seriously??!! for real??!!' with the biggest smile on her face. It was awesome.
A couple days later, Frazer and I went to meet Lady and decided to bring her home. And while we thought we were getting a 1 or 2 year old dog hound-mix that was house-broken and just chill enough to make it okay to add a dog to our circus, we ended up bringing her home, falling in love with her and then learning that she was at least 5 years old, is a Rottweiler mix, has major anxiety issues and a bad case of heart worms. Our special needs family has found a sweet special needs dog and she has been such great therapy for all of us. I knew she would be great for the girls, but I have been truly surprised by how much she has helped me too. (Despite her incredible anxiety and health needs.) Oh and Ann Carlyle is still doing GREAT with her Lady-responsibilities. I'm so proud of her!
So, one big announcement that was made last week - the FDA approved the enzyme medication to be used commercially!! Kind of a big deal. :) This means that we will (hopefully) soon be able to get the enzyme infusion here in Memphis. I can't even remember what it was like not to go to Ohio every other week. It goes without saying that to be able to simply drive downtown and get her infusion will be life-changing. It is such a big interruption for everyone in the family to travel so often and creates a burden on so many people that help us do it every other week (although, they would never call it that because all you people helping are awesome!). It will take a bit of time before insurance gets on board with approving coverage of the drug and for the hospital to get all their ducks in a row, but we are hopeful that sometime this summer, we will get to start getting Elle's enzymes in Memphis. (Please pray that this all proceeds quickly and that insurance will pay for the enzymes. It is about $700,000 per year (yes, $700k) to get this drug - so, as you can imagine, insurance approval is imperative.)
Also, we have announced the opening of Milla's House! The Kemmons Wilson Center for Good Grief is expanding to a second location this summer in Midtown and it is being called Milla's House. We are beyond honored to be a part of this community service in an area with great need. We will be holding a couple of fundraisers this year - I'll get to that in a minute - but please consider helping us fund Milla's House.) If you want to know more about The Center for Good Grief and the important work that they do, here is a link to an article about it...
If you are interested in donating to Milla's House, here is the link to help you do so:
AND, another BIG announcement - we are having a fundraiser for Milla's House in just a couple of weeks on Saturday, May 20th! It's called Miles for Milla - it is a bike race (a 40-miler and a 6-miler) with a party at 11am with a band, food, beer and fun for the whole family. :) We would love for everyone to join us (even if you don't bike - you can be a ghost-rider or just come to the party)! We want as many people as possible to come out and have a good time (and the t-shirt is awesome!).
PS - when we announced to event last week, there was a hiccup with the website, so some of you may have not been able to register, but all is fixed now.
The link for information and to register is:
(By the by, the registration and donation links are off to the far left side of the web page right now...it may be hard to find but we are working on changing that.)
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So, there's a lot going on these days. :)
Please pray for all these things mentioned above and please pray for Ann Carlyle - this week, she has felt the weight of her grief a little more than usual, and we can see that affecting her when she slows down from all her activities.
Please pray for Elle - the last few days, she has been having an increase in seizures (even though we upped one of her meds a couple of weeks ago, which worked until recently). And she's just been 'off' - fussier, more tired, the rages are coming back. She doesn't have any symptoms of an infection, but it's possible that she coming down with something or fighting off something. So please pray for her general health and that these neurological things settle back down as well. Her seizures have been on the rise for about a month now.
For our latest trip to Ohio, we were there for 5 days so that Elle could get some extra tests run while we were up there. It was a crazy week. We flew to Columbus before sunrise Monday morning and went straight to the hospital from the airport to get admitted for a 24 hour EEG. (That flight had mechanical and weather issues, so instead of less than 3 hours, it took us about 5 hours to get up there). Tuesday, we were discharged and then went to a physical therapy appointment where we learned she needs serial casting for her feet. Wednesday morning, we had to be back at the hospital early to have her enzyme infusion (which includes an overnight stay). Thursday morning, after leaving the research clinic, we went to the surgical unit so that Elle could have a sedated eye exam and MRI. This unexpectedly took pretty much all day. And anyone with a kid who has had anesthesia knows that kids get super crabby when they wake up - good times. We were discharged and then spent the night in our Ohio apartment and flew out Friday around noon. It.was.a.long.week.
The good news is that she did not have her usual fever after the infusion - so hopefully, that reaction is starting to subside. However, she still feels super yucky and lethargic. Also, we found out that her eye sight (it's 20/80) has not gotten worse in the last 6 months which is amazing!! I am still waiting to hear back from the eye doctor with the in-depth eye exam report but we are thankful at least that she is still able to see.
The MRI of her brain did show degeneration compared to 7 months ago. But her doctor anticipated this and was unsurprised at how her brain looked. Bottomline, she feels that Elle is right in line with the other patients that have been on the enzyme treatment for 3+ years. According to her, the first year of the treatment, the brain degeneration continues and then they see a level-ing off of the degeneration on the MRI's.
Even though there were 'stable' reports from the tests, it is still hard to hear all the ways Elle's brain is getting worse. And we are reminded that this drug is an ongoing treatment, not a cure. It is a treatment to only slow the progression of her disease - the disease will continue to progress regardless. And we will have to watch as her body continues to fail her. We think she is actually doing better cognitively, which is unfortunately a double-edged sword. I love seeing her comprehend things that maybe we haven't seen before, but she also is getting more frustrated as she comprehends the ways her body can't keep up with what she wants it to do.
Thank you for pursuing us and praying for us and caring for us!! We continue to (very much) need all those things. Some days we are able to carry on swept up in the fast current of daily activities/life, but other days, it feels like we are being sucked down into the muck and every little thing takes so much effort and seems to go no where.
One more thing, please pray for our dear friends, the Betts, who lost their cute-as-pie, precious son, Bentley, at the end of March. We met them at the very first BDSRA conference that we went to a couple of years ago. We have gotten to see them a few times in-between the annual conferences because they live just a couple of hours away and have come to Memphis to visit. Like all the Batten 'babies', we smile to think of Bentley running around healthy and healed with Jesus, but oh how we grieve the hole he left here physically and in our hearts.
Lord Jesus, come quickly.
Much love (and thank you for enduring this enormous email!)
