Sunday, June 3, 2018
On behalf of Milla's House and the Baptist Centers for Good Grief, I wanted to thank all of this year's registrants, sponsors and donors for a fantastic event at Wiseacre on May 19! With your help and many more we raised just over $104,000 for Milla's House! We had 56 sponsors, 73 donors and 490 registrants for the rides and party! We distributed 543 T-shirts, ate a bunch of tacos from El Mero and around 55 pizzas from Dominos!
It is such an honor and privilege for Dana and I to see Milla's legacy through Milla's House and it means a whole lot to us to have so many support the work being done and joining us in honoring Milla's legacy. We are humbled by the continued support of our community!
Thank you for joining us and we look forward another fantastic event in 2019!
Frazer & Dana
Monday, May 14, 2018
I just wanted to send a quick word out that Elle is doing well! She seems a little weaker in her core and neck strength the last few days and she's been fussy and restless a little more than usual. But overall she is doing great and her incisions are healing well.
The surgeon had to shave Elle's head - a lot - in order to have a clean surgical field where he took the old port out and also on the other side of her head where he put the new port in. After much brainstorming on how to fix her hair, I trimmed about 6+ inches from her super long hair and we are doing a lot of 'Milla buns' and headbands to cover up the incisions/scars/shaved head.
(For those of you who may not understand what 'Milla buns' are :) it's what we call pig-tail buns on the top of the head because I put Milla's hair in those buns much of her last 3 years as her hair was so curly and wild and that kept it out of her face.)
We are so thankful we went ahead and changed the port out with a new one...the old one had a sizable hole in it. It definitely would not have been good to have another infusion with the old one.
We are still on schedule to have Elle's 45th infusion tomorrow morning. We don't know if we will see a difference in Elle' condition with the new port but anything is possible.
Also, we have a new night nurse starting this week!! For now, we will still have no help on Saturday nights but 6 days a week is sooo much better than 3 days a week!
One more big reminder! Miles 4 Milla's House is THIS SATURDAY, the 19th at Wiseacre!! Feel free to ride bikes, walk, run or just come for the party! The family ride (I'll be walking) starts at 10:15 and the party starts at 11. Rain or shine, it will be a blast with good people, good music, good beer and good food. Please help us support the Memphis community by supporting Milla's House Center for Good Grief!!
Go here to sign up or donate:
Much love and THANKFULNESS for all your prayers and encouragements!
Wednesday, May 9, 2018
Elle’s surgery went well! We are in a room and she's sleeping right now. She is running a little bit of a fever and having a lot of seizures but all in all, she is doing fine.
We will stay the night at LeBonheur and should get to go home tomorrow barring any complications.
Thank you for continually lifting us up!
PS - for those of you that didn't know, Elle's surgery was cancelled yesterday and scheduled for today because the hospital had some emergency cases come in.
Tuesday, May 8, 2018
Hey everyone - I just wanted to let everyone know that due to an emergency that came up, Elle's surgery was bumped to tomorrow at 2:30.
Please continue to pray for her and that she will have patience and understanding as much as she possibly can tomorrow! And of course for safety and her doctors and nurses, etc.
Thursday, May 3, 2018
Hey there, all!
Elle had her 44th infusion Tuesday and we ran into a glitch. Her port (it goes into her brain to deliver the enzymes) started to leak. Thank God they figured out a way so that she got most of her enzyme infusion but we are going to have to replace the port.
So next Tuesday, she will be having surgery to take out the bad port and put in a new one on the opposite side of her brain. We aren't sure why it stopped working - it should have lasted another couple of years. They did a CT scan Tuesday just to make sure nothing had broken off or dislodged and the scan looked fine - so there's no emergency in needing to get the port out. And there are no signs of infection. Whew.
Her surgery is at 11:30 so please pray for fortitude for us as Elle can't eat or drink after midnight. She usually eats 2 or 3 breakfasts between 1am and 7am so this is going to be very difficult for her as she can't understand why she won't be able eat or drink. She is cognitively around a 2 or 3 year old level - with a 6 year old body - and the strong will and feistiness of a wild animal. :)
Tuesday, she will get a CT scan and then the surgery and then will stay in the hospital for 1 night.
Please also pray for good wound healing and healing in general and no infections in order to be able to get her next infusion on schedule (the following Tuesday). Also, as you all know, any surgery for any person is not without risks, but for Batten kids, the stakes are a little higher because of their weakened immune systems and weakened muscles among other things. There is always a nervousness with anesthesia and breathing tubes - having trouble breathing on her own after they remove the breathing tube.
Please continue to pray for a night nurse as we still don't have one for 4 nights/wk.
Thank you all so much for all the kindnesses and love and encouragement!!! Much love right back!
Thursday, April 26, 2018
Long overdue update - but thank you for faithfully praying for us and loving us as always! God is certainly sustaining us through you!
Not much has changed with Elle until really the last week or so. We are still working to control her seizures. We started another new medication about a month ago after trying 2 others that failed horribly. We have to slowly increase (or decrease) the doses of these medications and currently we are still increasing the newest one. I will say that for the first time in a long time, we may be seeing some consistent improvement in her seizure frequency and without the dreaded behavior problems that usually come along with seizure meds. She is still having some hard and long drop seizures but we are seeing less of them! And her mood has been mostly good! She has been more giggly and happy and she is having a bit of an easier time with transitions. AND slowly but surely, her falling-asleep patterns have gotten so much better! Her overall sleep is still awful but she is not restless and thrashing and moaning for 45 minutes as she is trying to go to sleep. She typically will fall asleep on me and I'll hold her for awhile and then put her in her bed.
So for now, we have seemed to solve the going-to-sleep problem...now if we could just get her to stay asleep...
The only good thing about her sleep pattern is that there is actually a bit of a pattern to it. Milla never, ever had a pattern to her sleep (other than it was bad) and Elle hasn't either until the last couple of months. So at least we pretty much know what to expect. We still don't have a night nurse for 4 nights every week and that has been absolutely brutal. Please continue to pray that the staffing company finds someone soon to fill this spot. (On a positive note, the night nurse we have for the other 3 nights is absolutely wonderful - she is fun and full of energy and Elle loves her. :) We pray that she will be able to stay with us for a long, long time.)
We are so thankful to finally be seeing these little bits of (good) change in Elle's condition as she has been on a downward spiral since mid-December. Her little body has been suffering so much.
April brings lots of rain and lots of birthdays around here! Ann Carlyle turned 9 earlier this month and Elle turned 6 last week! Both had wonderful parties to celebrate their sweet lives and they both had a blast (even though Elle's party was rained out) - and lots and lots and lots of treats as the whole month has pretty much been a birthday celebration! As so many have said before and I continue to see in my life, the days are long but the years are certainly short.
Note: I started this update this morning and then stepped away from it until late this afternoon. And Elle's seizures were worse today again. So we will see how she does tomorrow. And we will be thankful for the few good days she had this week.
So that's about all I have for now.
Oh - please don't forget to sign up for the Miles for Milla's House Bike Race! It is May 19th at 10am and you can even walk/run if you want to - that's what I'll be doing! Go to http://miles4milla.org to sign up or donate. (There's also information about Milla's House on the website.)
Much love to you all! God's mercies never fail. I read this quote from Joni Eareckson Tada recently...
"The weaker I am, the harder I must lean on God's grace; the harder I lean on Him, the stronger I discover Him to be, and the bolder my testimony to His grace."
God is good - on good seizure days and on bad seizure days. God was good even when Milla died and He remains good as we continue to grieve. God is good when we get to sleep and when we don't get to sleep. He remembers that we are but dust and will hold us together despite our frailties. Thank God my circumstances don't change Him.
Monday, March 12, 2018
Hi there to all of you!
I just wanted to send out a quick (hopefully) email while I have a second. I mentioned some of this on instagram and facebook the other day but I know not all of you see those posts.
We are on spring break this week - which is in no way a 'break' for us. It's hard to not have school for the girls, especially Elle. She needs that routine and stimulation and socialization she gets from the classroom. Anytime there is a break/holiday in the schedule, it is really, really hard. We will get through it and it will be fine but it's going to be a long week. I do have some sweet friends helping a bit here and there this week for which I am ridiculously grateful. :)
Another reason for the oh-my-soul-how-are-we-going-to-get-through-the-week is because we are without a night nurse again for 3-4 nights/week. So Wednesday through Sunday, Frazer and I will be getting about a couple of hours of sleep at night. And having no relief during the day just compounds all of it. The mental exhaustion. The physical exhaustion. The emotional exhaustion. I am constantly on guard with Elle - for her physical safety - but also as I watch her seize so much and watch her have nerve pain/discomfort and as I fear the disease that is killing her brain cells, I can feel the effects that this constant stress is having on my body. I mean, this stress has been a constant for the last 4+ years but there are times that it has been on overdrive and I feel that the last couple of months, that overdrive has been my almost constant companion.
So Elle's seizures are still uncontrolled - we have been working on that but I will say this past week, for whatever reason, there has been a speed bump with those seizures. We saw a slight decrease in the number of them but we are still not where we want her to be - which is in a (relatively) controlled state of seizures. And today, the seizures have been really bad again. Hundreds every day and even some while she sleeps.
The other thing we are having a hard, hard time with is her getting to sleep and staying asleep. This has always been a problem, as most of you know, but it's been an extra-bad problem since the beginning of the year. She writhes and twists and thrashes and tosses and turns and moans and cries when she is trying to get to sleep. It's awful. She is exhausted and has her eyes closed during all this movement and wants so much to go to sleep and her body just won't let her. Sometimes, it seems as though she is just uncomfortable but other times, she is in pain. We started a new med for her to take before naps and before bedtime to hopefully help with this. It was prescribed almost 2 weeks ago, but between insurance pre-certification and trying to find a drug store that had it in stock, we just got it Saturday evening. The first night, we saw no improvement at all. Last night, we saw a little improvement. The jury is still out, but we are hopeful. And with better sleep, maybe we will see improvement with her seizures as well.
Elle is still doing really well cognitively and is strong. She is still pulling up to a standing position, bearing weight and scooting around on her hands and knees to get around. She loses her balance or seizes and falls a good bit too, but we are thankful for the mobility that she has.
Her vision is not great and her speech is not great. She's having a harder time communicating what she needs or wants and that gets super frustrating for her and makes me super sad to not be able to understand her. But how about this for crazy...she can still say 'rain, rain, go away'! It doesn't sound perfect but for her to be able to string any number of words together is amazing. (She's had a lot of practice lately with our weather.) It's always fascinating to me the random things that hang on. Milla had things like that too. An ability will be pretty much all gone but then something within that ability that is relatively complex will still be hanging on that they are able to accomplish. The brain is so crazy complex and amazing.
We are truly fearfully and wonderfully made.
Ann Carlyle is doing well. She sees Elle's disease progression and she worries but she is talking about it and asking questions and processing it with us and that's what we want. She is turning 9 in a few weeks on April 6th and she, of course, is ecstatic about that! She's amazing and strong and beautiful and full of joy and quick to forgive and quick to laugh and has amazing empathy for others (including her parents!). We are so, so proud of her!
As for me and Frazer, we are grieving and stressed and tired and anxious...in various stages and places but nonetheless, this season has been a hard one. We cling to truths we know in our hearts, even when we don't feel them. We are leaning into each other even when we don't feel like it. We put one foot in front of the other even though it seems impossible to just do that simple thing sometimes. We miss Milla so very much. We grieve not only the brokenness we have in our little family but also the brokenness we see in our friends lives and in the world. How do we do this without breaking ourselves? Jesus. That's it. I have been paralyzed many times at the prospect of going through yet another day and having to deal with everything - the grief, the physical exhaustion, etc. Except. Except for my hope and absolute belief that Jesus is alive and that He is making all things new. Except for my hope and absolute belief that all of this suffering is for a more wonderful purpose than I can possibly imagine.
I hate to send out updates that are so down-in-the-dumps but that is honestly where we are. Please continue to pray for us and thank you for already doing that so much and for so long. Thank you for encouraging hugs and words and hand-squeezes. Thank you for helping out wherever is needed, no matter how small. Thank you for just being willing to help out. You are Jesus' hands and feet, serving Him by serving us, loving Him by loving us.
Our love and sincerest thank you,
Oh and PS - Save the date! The 2nd Annual Miles for Milla's House Bike Race is May 19th!
Oh and PS - Save the date! The 2nd Annual Miles for Milla's House Bike Race is May 19th!