Can y'all believe it's almost July?!

So it's been a busy week and an exhausting week, but we've made it through to the other side.  I have to discipline myself to take it one day at a time so that I don't get too overwhelmed.

Milla has been mostly the same - although she has still had some of her more violent seizures here and there that throw her to the ground.  And we are still seeing that the ketogenic diet seems to be making her seizures worse (certainly not better).  She has been on the diet for 4 weeks now (her doctor told us we should see a change within 2-4 weeks).  So we will see what his thoughts are this week...

Also this week, we travelled to Huntsville to get a second opinion from a specialist that was recommended by a neurologist friend of ours.  The Huntsville neurologist was really great - very professional but personable too - and she was very helpful talking through some possibilities moving forward.  She also confirmed that we were on the right path with Milla's doctor.

We were also enrolled in a genetics study that will look at some 20,000 genes in DNA from Milla, Frazer and me.  We are hoping to find some answers to what is causing Milla to have these seizures and thereby figuring out how to control them.

So that's all I got today - I'm pretty wiped out - we can really feel the stress taking its toll on us these days.  

Please pray for stamina and energy for us.  We are in desperate need!  Running on empty is taking on a whole new meaning.

Please continue pray for Milla's healing and safety.

Please join me in offering thanks to God for the mercies He shows us morning by morning and for the help He has provided through you all.  We are so truly grateful.

Also, please pray for us as we make decisions related to our house.  We are starting to look at houses that would be safer for our family.  And so, we are also trying to figure out how to get our house ready to put on the market.  The last thing we need is more stress(!), but we feel it is a necessary stress at this point.  If anyone is looking to move to Midtown, let me know!  I am boldly praying for God to miraculously and mercifully make selling, buying and moving easy for us to do.  It would have to be a miracle, right?!  (When I think about all that is involved with this, I want to find a happy place and rock back and forth.  Again, needing to remind myself to take one day at a time, one step at a time.)

Oh - and too, please pray for a quick start for speech and occupational therapy for Milla.  We have been on a waiting list for over 2 months now - but I contacted a different therapy group and once they review Milla's evaluations this week, they should be able to start the speech therapy right away.  Please also pray that the appointment times they have available for her would not be on her PDO days as she needs that time to be around her peers.  (And honestly, it's also somewhat necessary for me to have those days too!)

Much love to you and yours...and a restful Sunday to all!  Thank you, too, for remaining so faithful in praying for us and helping us during this long season of life.

Dana

A Note from Frazer

I wanted to write and attempt to express my appreciation for the love and care you have shown and are showing our family.  Since we first experienced the love and care in the ER at LeBonheur with Milla’s first seizure in August to the cards and messages that we received yesterday in the mail and all the meals, support, service and prayer in between, please know that not only do we appreciate you, but that it has had an impact on at least five of God’s children - my family.

I have asked many of you to pray because I am convinced that prayer is the most vital thing we can do for Milla.  Please also pray for Dana and I as we struggle getting our “sea legs” under us in dealing with whatever it is that is going on with Milla on a week to week and month to month basis.  We do not know how long term this is, but we continue to ask God to heal her and perform miracles on Milla’s little body.  We pray expectantly and boldly for God to heal Milla.  I know God lives because of the manna He has provided our family through each of you over the past few months.  Please know that you are the hands and feet of the body of the living God and please rest in knowing that He is at work in this confusing and fallen world.

Please pray for us as we are meeting with two new doctors over the next month, both of which are out of town.  

Pray for a miraculous healing of Milla.  She, like us, has good days and bad days and even her good days are very hard for me and Dana.  Pray for her little heart, that she will know and see the Living God, even at 3 ½.

Thank you all for being the Body, our Aaron and Hur (Ex 17) and our manna through this.  I can barely begin to express my love and appreciation appropriately for all that you have done for us.

Frazer

[Insert creative title here] - All I got is 'Update'

Hello everyone!  It's been a busy week and it's been hard to find time to sit and write an update.

Nothing much has changed...Milla has 'good' days and bad days.  The weekend was pretty bad though.  She had a bunch of longer seizures and had a few ones that looked different than anything we've seen (causing one of her eyes to move independently from the other) and those seemed to cause her some pain as well.  We are not sure if this has any significance yet.

Fortunately, we haven't seen that kind of seizure yesterday or today and she's actually been a bit better than she was over the weekend.  Her ketones were high this weekend (on the specialized diet she's on, that's a good thing), yet her seizing was worse.  And while she's been better the past couple of days, her ketones have been low.  It's a bit confusing and we are now wondering if this diet is going to be effective.

We've also seen some concerning things in her behavior.  Please continue to pray for her development as this weighs heavily on our hearts.

For now, we are continuing her diet...and as of tonight, we are waiting to hear from her doctor about our plan for the week.  He increased one of her meds again last night, but I believe we are maxed out on that one now.

I do want to mention a HUGE blessing and answer to prayer - we were able to send her to PDO last Friday.  I was only going to send her for a couple of hours - partly because I didn't know how she would do, but also because of the dicey situation with her diet.  She cannot have any of the typical snacks/treats given out to the kids so I wasn't sure about leaving her there for long...especially for lunch and because at the end of the day, they give out suckers, which she loves.  But she DID stay all day!!!  She did well with her food and while she was initially sad about not getting a sucker, she got over it quickly and was okay. 

There were so many things to be thankful for.  I felt so renewed getting to have a few hours of rest - and I was able to get a lot done that had been on my to-do list for quite some time!  And it was so good for Milla to be away from me and to be able to play with her friends.  She truly loves going to 'school.'  :)  Her little classmates treat her like any other kid - what a wonderful thing for my eyes to see - and that despite her speech (and possible other) delays, she can interact and play and have fun.  She still had a good number of seizures, but her sweet, amazing teachers (and the director there) love her and are graciously willing and capable to care for her in any way they need to.  I cannot say enough about these women that have loved us and served so faithfully all year...actually, they've been serving our little family for almost 5 years now, ever since Ann Carlyle was 5 months old.  (It's the PDO at Second Presbyterian Church - I highly recommend!!!!!!)

So, again, please continue to pray for Milla's development, for her safety and for healing.  

Please pray for our strength and endurance - mentally, physically and spiritually.  We are, to put it mildly, exhausted.

Please pray for wisdom and clarity of mind as we are seeking other possible avenues of treatment.  Pray that we would seek the Lord's will first and that we would find time to be sit still and be quiet so that we can hear Him.  (Hard to do in this crazy house!)

Thank you, as always, for caring for us, praying for us, loving us, helping us, generously giving to us in countless ways.  God continues to show us mercy upon mercy through you.

Much love-
Dana

Thank you

So, first of all, I don't really know where to start. :)

There has been an absolute OUTPOURING of love and help from so many of you - and my cup runneth over.  And truly, our souls feel refreshed and renewed.  The way God has answered so many prayers, the way He has calmed so many fears, the way He has simply taken care of things that we didn't even ask for...it's amazing.  Just amazing.

Example - I was sitting (a rare moment that day!) totally overwhelmed by gratefulness Sunday by all the help being offered to us.  But also, honestly, overwhelmed by the time it was going to take to plug everyone in where I needed help here at the house and when I was going to possibly find the time to do it (in-between our minds imploding from the day full of seizures and calculating fat and carbs and ketones).  TEN MINUTES later...truly...I get a phone call from a dear friend offering to be my 'matrix coordinator.'  

He even knows when the sparrow falls...

Just a couple hours later, another dear friend offered to do something that I had mentioned to Frazer earlier in the day (that would be helpful but that we didn't want to impose on anyone).  We didn't even pray for this and yet, God saw our hearts and provided.  

I've spent much of the last couple of days in tears...but most times, my tears were from joy and thankfulness at God's provision through so many of you giving so  sacrificially.  Ann Carlyle said to me today, "Mommy, remember when you were crying yesterday?  Why were you crying?"  And I was able to tell her that sometimes we cry because we are so happy and grateful because God is such a good God and gives us help.  He loves us so much.  So not only have your prayers and physical help been a tangible blessing to us, you are giving me moments of sharing God's love to my 5 year old...and she can SEE that love too.  So thankful.

And now to the update on Milla...

She had another rough day Monday - she ended up having 4 mildly convulsive/stiffening seizures lasting a couple of minutes each - not sure what kind they actually were but definitely not her norm.  And it's always scary to see a 'new' seizure happen.  

We got in touch with the doctor by the end of the day and he told us to double one of her meds.  This has made a big difference today.  I felt like I could actually catch my breath (and let it out) a little bit - that and the constant help I'm getting with the girls and the house.  :)

We also are now able to give her 20g of carbs - still surprisingly (well, maybe not so surprising) hard to do.  But my mom found out that ChickFilA nuggets only have 5g of carbs!  So baby girl got to have one of her favorites tonight.  I can't tell you how happy this made me!!!

Please continue to pray for better days for Milla - today has given us at least a bit of hope that there are still things out there that can help her.  But pray too that this increase in her med will last beyond the next 3 days or so.  She has a history of doing well at the beginning of a med change and then sliding back.  Also, please pray for her little body to get used to the sudden big increase.  She has had many screaming fits today - which is a typical side effect for her with this med - but certainly not fun for anyone.

I am sitting here trying to figure out how to tell you all thank you - how to possibly express my gratitude.  But there are no words adequate enough.

So I pray the Lord's blessing on you tonight and praise Him for His faithfulness to us.  Morning by morning, new mercies I see...all I have needed His hand has provided.

Blessed is the influence of one true loving human soul to another. (George Eliot)

Much love,

Dana

PS - I've been told the emails are being forwarded to others - if there is anyone that would like to be added to the email list, feel free to let me know and I will add them to the mix.

Prayers

Dear friends and family - I know you have been so faithful to pray for Milla and all of us - please continue.

While Milla is eating and drinking a little bit, she is not doing well at all.  Her seizures are worse than ever - in frequency and in strength.  Even if she doesn't fall, they are painful for her because they jerk her body so violently.  And it is so bad that I simply cannot take care of all 3 girls by myself right now.  We are not sure how to handle this.

We desperately need prayers for wisdom.  

Although we are trying our hardest to stick to the modified diet, we are not able to do so right now.  Like I said, the good news is she is eating and drinking.  Just for a reference point, our goal for her carbs per day is 10-15g.  At 3:00 Sunday afternoon, we are at 16g.  Her fat content also needs to be ridiculously high to keep her ketones high, but her ketones are in the low range this afternoon - hence, more seizures.

There will be a transition period to get her diet right, but in the meantime, on top of trying to get her to eat differently, measuring out foods and calculating it all, she is having these dangerous seizures, continuously at times.  (And then there's taking care of our other 2 little girls.)

Although she was having many, many seizures before, they were at least small and manageable and I could take care of everyone.  We are, quite frankly, very worried and fearful right now and we are not sure which path to take to best care for Milla.

Again, please pray for wisdom and for peace and confidence with any decisions we make.  

Please pray for safety.  We live in an old Midtown house with steep stairs and other aspects to it that is not ideal for our family.  We are trying to figure this out as well.

Please pray for Ann Carlyle and Elle as we are having to take away some of their favorite foods as well.  Ann Carlyle has been really great about it so far, but it's hard.  Milla's been pretty good about it too, relatively speaking, but I think that may be due to her not feeling very well.  And it's only been 24 hours.  Breakfast and after-nap snack are the hardest to manage so far...as those meals are typically the most carb heavy.

Also, I forgot to mention this yesterday, but Milla's MRI was not completely normal.  Her brain has shown no growth in the last 6 months since her previous one.  Typically, myoclonic seizures (even if someone has 200 every day) do not cause brain damage or delay.  Milla's doctor is not really sure what to make of this right now.  We are praying that the lack of brain growth is due to all her seizures and that once we get that under control, her brain will grow as it's supposed to do.  We just don't know though.  She will have another MRI in 6 months to see if there is any change.  As you can imagine, our hearts are heavy with this news.

We are weary and stressed and unsure.  I know Milla's Creator knows her brain and her body inside and out.  I know that He is in control.  I know He loves us beyond our wildest imaginations.  We believe this and rest in this truth.  There is nothing else.

So many of you have asked for practical ways to help us...we are so, so, so grateful for this.  So many of you have already helped us in so many amazing ways...and even if it is 'just' prayer, it is powerful, not to be taken lightly.  And we continue to need help, specifically to be another pair of hands and eyes during the week.  If you have even just a little bit of time to do that, we would be most grateful!!!  Just having another adult body here at the house would offer so much peace of mind and safety for Milla.

Thank you for caring for us - for loving us - for praying for us - for doing amazingly helpful things that I haven't even thought of!  The kindness and service of friends, family and strangers alike is amazing and astounding.  Much love to all of you...we know without a doubt the love of God because of you.

Dana

Going Home!!!

Praise the Lord - we are going home today!!!

And while this is certainly good news, we are hoping it is the right decision.  Milla is still not really eating or drinking but we are hoping that getting her home will help her to relax and stop her food strike.  She had about 1-2 tablespoons of shredded cheese and a serving of grapes this morning and maybe 1-2 oz of water.  But she is super excited about getting out of here and asked me if she could eat when she got home.  I'm sure she is thinking she will get to have any food she wants, and while  we are still restricting her food, she might be more open to it at home.

If by tomorrow, she is still rejecting everything, we will have to start letting her have anything she wants.  So we may completely be back on square 1 or we may be back on square 2 or 3.  We'll see.  But at this point, we are trying to get her healthy but also trying hard not to ruin what we've accomplished this week (not sure 'accomplishment is the right word here, but anyway...).

Milla is seizing a good bit and Dr. Wheless thinks that is because her ketones are getting low again.  Eating lots of fat = high ketones = hopefully a decrease in seizures.  

(And as I write this, I look at my always-chunky Milla-Willa in her clothes and see she is all the sudden, now, so skinny.  :(  It took getting her regular clothes on her to see the vast difference.)

So basically, all of this will be a lot of trial and error.  With a good heaping portion of wait and see (my favorite!).

I spoke with Ann Carlyle this morning about Milla not being able to eat all the things we are accustomed to eating and that she needs to be patient and helpful.  We talked about some of the specific foods Milla can or can't eat.  Ann Carlyle was very sweet about it and listened well...I'm hoping that talking about it a lot with her will get her on board as she is helping to take care of Milla and helping to make her feel better as well.

Please pray for this transition...I have NO idea how this is all going to play out.  But I know the Lord does and we are praying for Him to lead us.

Okay, gotta pack up the room so we can get out of here!  Milla was sooo excited to see her shoes and has them on and is anxious for her daddy to get here and take us home!

Much love,

Dana

UPDATE: I wrote this around 1:30 today.  It is 4:15 now.  We are home and Milla has eaten some cheese and grapes and drank a bunch of her 'milk' which is actually mostly unsweetened almond milk and some heavy whipping cream.  But this is AWESOME because the cheese is very low carb and the cream is very high fat.  So we are keeping to the modified diet and we are not forcing her and she is so much happier this afternoon.  

She is still seizing a BUNCH.  She had a really big one 2 minutes before we were walking out of the door at the hospital...fell pretty hard too.  We were both so apprehensive and scared anyway about taking her home and that did not help.  But we are home and she is putting things in her mouth that we want her to put in there and I feel a new sense of hope.  At least that we can get her back to where she was before we were admitted.  I'll take it.  For now at least.  :)

Also, we will be checking her ketones (in her urine) regularly for awhile and then maybe just once or twice a day when things get consistent.  We want a high number.  I just checked and they were in the lowest part of the acceptable range.  Obviously, we need them to be higher because she is still seizing a bunch, but I'm encouraged that even though she is having grapes, that her ketones are staying in the high-ish range.

Her color looks better already and although I still see knobby knees (which have NEVER existed on Milla), I have hope for tomorrow!

Thank y'all for praying so, so faithfully.  We love y'all!!!

LeBonheur - Days 3 & 4

Hey y'all - it's been hard to write an update yesterday and today.  And I'll have to be brief this afternoon, if I can.

So, Milla is still not eating and she's barely drinking anything at all.  She is very sickly, lethargic and dehydrated - she even refuses to walk and at times, couldn't even keep her own head held up.  And like I said, she is refusing all food.  I've been able to get her to drink a very little bit - maybe 8oz all day yesterday.  She had some IV fluid this morning to help her dehydration and fortunately still had her IV so we didn't have to go through all that again (getting a new one).

It's been pretty rough on me and Frazer as well.  It feels like we are watching her waste away and we can't help her.  Not to mention the physical, mental and emotional exhaustion.

As far as the seizures go, things are better - kind of, maybe (?).  But Frazer and I aren't convinced of the reason.  It may be the diet.  It may be all the sedation she got at the beginning of the week.  However, today, the seizures are coming back more and more as the day has gone on.  Her doctor has also decreased 1 of her meds slightly and taken 1 away completely today.  We are off the EEG monitoring (as of this morning), so I'm trying to keep count this afternoon.  It's hard to say why the seizures are increasing because so many variables are involved and many of those variables have changed simultaneously.  But I guess that's why we are here.

...I wrote the previous words earlier today before we met again with Milla's doctor.  And the plan has changed slightly.  First and foremost we have to get Milla to eat and drink on her own.  So we are changing her diet to a modified plan...basically we are going back to what we had originally planned on doing, which was a combination of the modified Adkins diet and the low glycemic index diet.  We are hoping to still see some benefits seizure-wise from these diets but also to have our girl back and out of the hospital.  And maybe down the line, once she is more familiar with these other kinds of foods, she would be able to 'easily' transition to the ketogenic diet.  It is also a possibility that she could respond really well to this less restrictive diet and be mostly seizure-free.  Only time will tell.   

So, we are still at LeBonheur tonight...well, Frazer and Milla are.  :) (I was able to come home this evening and will take the other 2 girls up to the hospital to visit in the morning and hopefully we will all get to be in our own beds tomorrow night.)  She did eat a bit of cheese before I left though!!!  She stopped because she was feeling sick, but it's something!

Please pray that Milla will eat and drink the things she needs to to maintain some of her ketosis (her 'new' way her body is metabolizing food) but really, at this point I'll take anything.  Pray for a decrease in seizures (which were very frequent and somewhat large as the day came to a close -meaning they were a longer and stronger).  The seizures were back up to, at least, her norm by 7pm.  Pray for her body to recover from this onslaught of procedures and changes and seizures.

We are starting to get to the point of trying things that have a lower degree of success.  If the diets don't work, there is a med we will try, but it's not highly successful...but then again, that may be just what her body needs.  Please pray about that possible solution as well.

I have to stop here so I can get some sleep, even though I could probably list at least 40 other requests. :) But let's just start with Milla getting healthy enough to go home.

Thank you for all your love and prayer and help this week!!!

Dana

PS - I am writing this in an exhausted state and on an iPad so please forget the (multiple -I'm sure) mistakes I've made!