Mid-June Update

Hey guys!  Things never really slow down around here!

Elle had an EEG last week which was pretty much unchanged since her last one.  This is not great news because it means that she's not having an increase in seizures but that her disease is progressing.  Also, we are seeing a noticeable increase in muscle weakness. 

We seem to have gotten a grip on Milla's muscles tremoring and increased tone (aka muscles flexed).  She still has times that she's pretty locked up but her med cocktail is working.  But she has also been pretty tired and out of it lately.  I'm sure some of it is due to her medication.  This is hard because we don't want to sedate her but we also don't want her muscles contracting all the time.  Please continue to pray for wisdom and peace with decisions we have made.

Frazer and I were (somewhat last minute) able to take off to Cancun for a few days weekend before last.  It.was.amazing.  It was super hard to leave our girls but it was so very wonderful being there.  We had family and friends that gave of themselves tirelessly so that we could go.  Big shout out and a big THANK YOU to them!  We could not be more grateful for this getaway.  :)

Those are the highlights from the past couple of weeks.  Also, there are many, many things that I can't really talk about on the blog yet but that are up in the air for our family...we are not sure where everything is going to land...or when.  But please pray for us with all this.  Lots of big and heavy and complex stuff.  I will fill you in when I can.  

Elle started her new school today - she did ok when I dropped her off.  Please pray for this transition for her...and me.  

Ann Carlyle is at an art camp this week.  She is the resident artist of our family - her creativity amazes me!  

Milla is doing well back at her school.  They are taking wonderful care of her!  By the by, Mrs. Melba starts chemotherapy today - please pray for her strength and peace of mind.

We are definitely in the just-do-the-next-thing mode.  When I try to take it all in at once, I come close to imploding.  So I have to constantly remind myself to do the next thing and trust God's plan for our family.  My fear is unfounded as the paralyzing fear is only when I take my eyes of Jesus.  He hasn't left me yet...and I know He won't ever let me go.  His love and His power and His beauty are boundless.

Much love and a huge thank you to all for everything!

Dana

We went swimming with Mrs. Melba!

Stylin' in Auntie Dawny's sunglasses while we were in Mexico

Cancun!!! :)

Summer is here!

It's so weird to me that school is out and summer has started.  May just seemed to fly right on by me.  We are settling into a few weeks of life with no real routine, which is nice for a minute but it also has its challenges, as many of you know!

All 3 girls will be going to VBS this week...I'm so excited for them...I think they will all truly love it.  Then Milla and Elle will be back, mostly, on their regular schedule with PDO and therapy appointments, etc.  

Elle will also be starting a new school that serves disabled and non-disabled kiddos.  She will go there twice a week for half day, along with going to her regular PDO school on the other days.  We are hoping this new school will provide structure, socialization and skill-practice that she just can't get as consistently at home.  For awhile now, I have been very overwhelmed trying to give the best attention and care and teaching and therapy (working on speech, occupational and physical therapy goals) to both Milla and Elle.  Often, just getting through the day keeping everyone fed, safe and surviving is how we roll.  And/or I am able to accomplish some work with one of the girls but I feel that I've neglected important activities with the other one.  It is so important to keep working with both of them so that they retain their physical and mental skills for as long as possible.  

Also, Elle just needs stimulation and constant attention.  When those things lapse, she gets into trouble and/or gets hurt.  And with caring for Milla, I have realized the Elle-trouble is happening a lot.  Keeping Milla stimulated and physically moving is so, so important too.  On and on.  Bottomline, we feel like both girls will benefit from this and I will be able to rest a little easier knowing both girls are getting what they need.

So we will see!  Elle will start her full-time schedule the week of the 20th.  Ann Carlyle will have some day-camp things this summer.  Milla will continue to go to PDO as well.  

Speaking of Milla and PDO...we are so very thankful that she will be able to continue there this summer!  And so, so thankful to God that her teacher, Mrs. Melba is doing well!  Her surgery went great, her recovery has been relatively smooth and she has gotten some wonderful news from her doctor.  Her doctor really feels that they got all the cancer and the cancer has not spread anywhere else in her body.  However, she will get a few rounds of chemo just to be on the safe side, so please continue to pray for her - that her body and her spirit will be able to endure that difficult road - that she will be able to find comfort physically, that she will continue to be cancer-free and that she will make a full recovery.

Mrs. Melba and her daughter came by to see Milla last week.  And, as they have not seen each other in 3 weeks or so, it was so wonderful for both of them!  They love each other so much!  We are making some plans to get them together often as the summer goes on.  :)

Physically, both Milla and Elle are about the same.  They are still struggling in the same ways I detailed in my last update.  We carry on - praying always for ways we can help them.

Also, please pray for my body, which is decidedly beginning to show signs of wear and tear.  I have had severe shoulder pain off and on (in both shoulders) the past year+.  About 6 weeks ago, I found out the pain is from tendonitis in my rotator cuffs.  I've just had round 2 of a steroid injection to help with the pain.  Also, my lower back is all messed up.  I'm not sure yet what is going on there (I have an appointment on the books to have it looked at) but I have shooting pain that runs down my leg all the way down to my foot.  Sometimes the pain is on both sides and even includes my upper back and neck.  No rocket scientist needed in order to realize why this is happening.  Milla is 50lbs and cannot carry her own weight (and has legs for miles) so she's a very, very heavy and awkward 50lbs.  Elle is 37lbs and is always throwing herself around and many times I am not grounded in a helpful-to-my-back position to catch her/save her/hold her.  And I can't NOT hold them, carry them, catch them.  It is what it is.  But between my doctors and PT, maybe we can figure out some things to help the pain and prevent further damage.  

So that is the scoop this week.  Thank you again (a million, zillion times) for prayers and for help and for feeding us and for loving us in so many ways - all those ways, big and little, are important and we store them away in our hearts.

Oh one more thing - just because.  I want to specifically say how thankful I am for Frazer and how he leads this family and goes to work day in and day out to provide for our family.  And somehow he is able to do his job well in the midst of incredible stress and difficulty.  He's amazing.  Please pray for him as he carries a heavy load - some of the loads are the same for me and him, but some are very different.  He is my rock, physically and emotionally.  He is a fun and awesome dad.  I love him so.  Pray that he is able to persevere and sustain and that he will continue to be able to balance everything.  Pray for wisdom and pray that he will not get discouraged and that he will feel God's powerful hand holding him up.

May the Lord bless you and keep you as you go through your week as He has certainly done with us!

Dana

Milla and Mrs. Melba :)

Still Rough-Going

Not too much good news this week, I'm afraid.

Milla continues to have more seizures and tremoring during the day and the worst of it is at the end of the day and in the night.  The seizures are making it very hard for her to fall asleep and once she is asleep, she will typically wake up multiple times because her body is so tense/seizing.  She's out of it more often and her interactions are less frequent.  She will have good spots mixed in during her days, but those times are becoming shorter as she fatigues so quickly.

Also, she ended up getting hand, foot and mouth over the weekend.  While she only had the sores/blisters in her mouth, it was awful and so painful for her - and she was so very lethargic.  Thankfully, she turned a corner Sunday and started to improve from there.  Everyone is healthy this week!  Yay!

Not much good news on Elle either.  She looks like she's been beaten black and blue - everyday more bumps and bruises.  Tuesday morning, she fell hard and nearly bit through her lower lip.  She had a huge, gaping gash inside her lower lip but fortunately she didn't have to get stitches.  Her front teeth have darkened and her gums are all bruised.  But, surprisingly, it hasn't affected her desire or ability to eat!

Also, Monday afternoon, I had a little wreck.  Fortunately, no one else was in the car but me and fortunately, it wasn't my fault and fortunately, the man that hit me has good insurance.  It was pretty minor but my car still had to be towed and will be in the shop for awhile.  

So, we are going to play with Milla's meds to see if we can't control at least some of her seizures.  And we increased one of Elle's meds last week and then a bit more this week - hopefully we will see some positive changes for her.  As I've said before, it's always hard to balance the quality of life between seizure activity and its effects and being too drugged out.  Please pray we find this balance for both girls quickly - without having to go through too much trial and error.

I'm feeling a bit better the last couple of days, but please pray for my heart.  I have been struggling with a lot of sadness and anxiety lately - more than the usual that is always creeping in and out of my heart as we go through all this mess.  Seeing Elle and Milla struggle so much and seeing Milla so lethargic over the weekend just flatlines me. 

Please pray that God will continue to comfort and sustain all of us.  An old but wonderful hymn...

I need Thee every hour, most gracious Lord.

No tender voice like Thine can peace afford.

Forever thankful for y'all!!!

Much love,

Dana

A super-duper happy Milla :)

Sweet sister time with Ann Carlyle and Milla

Elle, The Cool-Cat Princess

Mid-May Update

So we are putting one foot in front of the other over here.

Milla is about the same.  She is progressing along and has had some hard times falling asleep due to her tremors becoming worse at bedtime (probably because her body is so fatigued by then).  She also is occasionally waking up in the middle of the night because her tremors will start back up.  So we are increasing one of her meds to combat that.  We continue to see more weakness and spasticity in her body.  But she remains the warrior that she is!  She works so hard mentally and physically - and always with a smile - she is amazing.

Elle continues to have hard days lately as well.  I'm hoping that a contributing part of her issues is due to the hand, foot, mouth infection she has right now.  :(  She is pretty miserable this week.  But infection or not, we are increasing one of her seizure meds to see if her seizures, tremors, etc. decrease.  Pray this virus clears up quickly and that the sores in her mouth will heal tonight as those sores are causing so much pain that she's having a hard time eating and a super hard time taking her meds.  She's been crying most of the last 3 or 4 days...more than her norm/usual.    

Update on Mrs. Melba: Her surgery went very well and the doctors think they got all the cancer out - pray that they really did!  Thank you for praying for her.  She still has a long, long road of recovery, but praise the Lord the surgery went well!  And Milla has been adjusting well to school-without-Mrs. Melba.  She (and I) had a hard time at drop-off the first couple of days without Mrs. Melba but we are both doing better. :)  The kids in her classroom are giving her a little bit of extra love, and the teachers are working so hard to make sure she is taken care of and is happy.  As I've said before, we are so thankful for Second Presbyterian Church's nursery, special needs class and PDO programs!  They have loved us well.

Please continue to pray for strength, energy, wisdom and health for all of us!  And thank you, as always, for your faithfulness in praying for us.

Then the One seated on the throne said, 'Look! I am making everything new.' -Revelation 21:5

Come quickly, Jesus!!

Much love to you all!!

Dana

May Update

So many of y'all have been asking how we are doing...thank you so much for caring about us and praying for us and taking care of us!

The good news is that we are all infection-free/healthy!  Thank goodness.  Those sinus infections hang on for.ever.

The bad news is that both Milla and Elle are still not doing well.

Milla continues to weaken.  She sometimes isn't able to/doesn't want to bear weight but she is able to other times - although she fatigues quickly.  Her tremors have worsened, her eye-rolling seizures are much more frequent and she has developed some spasticity in her wrists and legs.  She isn't holding herself up as much as she was which makes getting her into a good position much more difficult.  As a result, her spine is staying curved now.  We will be seeing an ortho doctor soon to see if there is anything we need to do for her spine/posture.  She is choking more frequently due to her secretions and she has had a couple of nosebleeds that have caused a good bit of choking.  We will be seeing the girls' neurologist next Monday for a checkup.

Elle is also progressing.  She continues to have falling/balance issues.  Her absence seizures have been noticeably longer and more frequent.  Her checking-out episodes have increased as well.  There are times of the day that there is almost no break from seizing and/or checking-out.  She has also had a handful of times in the last week that she is unable to get up after falling.  A couple of times it seemed she couldn't figure out how to get up and a couple of times it seemed her muscles wouldn't work.  She was unable to jump with both feet this morning.  She has braces now for her legs that help her bring up her toes as she walks/runs to cut down on some of the falling.

It's a lot.  A lot to carry.  A lot to do.  A lot to process.

Also, please pray for Ms. Melba - Milla's one-on-one teacher at her preschool.  She was diagnosed 2 weeks ago with ovarian cancer.  Ms. Melba will be having surgery Wednesday and then she will start chemo.  She and Milla are so very connected...this is so hard on both of them.  I cannot begin to describe how special their relationship is - they love each other so much. Milla cried when I left her at school last week without Ms. Melba being there.  Please pray that Ms. Melba will have the strength she needs and that the surgery will not have any complications.  Pray for her healing.  Pray that Milla will find comfort and understanding.  Our hearts are so burdened for them both.

Pray for continued wisdom as Frazer and I have to make decisions regarding the girls.  And pray for wisdom for their doctors, therapists, nurses, etc.  We are so very thankful for such an amazing team of people God has gathered to care for Milla and Elle medically - people that care so deeply for them and all of us.

Please pray for strength of heart and body for me and Frazer.

Please pray for Ann Carlyle as she sees her sisters' disease progressing.  Right now, she is sailing along very well and is being such a sweet and attentive big sister.  Her love for her sisters grows everyday and while there are still plenty of sibling squabbles with Elle, she is becoming much more patient and I see her nurturing them and serving them.  It's beautiful.  Pray that she runs to Jesus for comfort as she sees us run to Him and that He will continue to draw her to Himself.  Pray for her little heart.

Thank you all x a million zillion.  I am constantly blown away by the little and big and everything in-between things that you people do for us.  God is so good.

"When I said, 'My foot is slipping, Your love, O Lord, supported me.  When anxiety was great within me, Your consolation brought joy to my soul."

Psalm 94:18-19

Much love,

Dana

The amazing Ms. Melba and Milla

Ann Carlyle and Elle

Elle and her PT, Sonia, trading shoes :)

Happy Birthday to Elle!!

As crazy and fast and busy as life always seems to be, there's always room for it to get even crazier and faster and busier, right?!

I'll jump right in...

We celebrated Elle's 4th birthday last week!!!  We are so thankful for that spunky firecracker/tornado!  :)  We had a big (huge) princess bouncy house party for her Saturday and the weather was perfect and she LOVED it.

The crazier part of life comes in with how the girls are doing.  Unfortunately, it's not good news.

Elle's balance and falling and seizures just keeps ramping up.  It's super hard for all.  I'm not sure if we are going to try to combat it with meds yet at this point or not.

Milla's bounce-back has pretty much leveled out and she is regressing a bit.  I'm pretty convinced though, that part of it, at least, is due to her getting sick.  She started getting a chest/head cold Friday afternoon and it's still going strong.  Her lungs sound terrible but she is coughing productively, which means she is moving all that junk up (and totally out hopefully).  She's been tired and clingy and weaker.  But she's hanging in there.  She is truly Mighty Milla!!

Also, I have the same cold and I am feeling pretty yucky myself.  Please pray that this infection gets outta this house asap!  

This is the second time in a row I have written under the influence of drugs...eek.  Hopefully, this time I didn't misspell something like 'route canal' instead of 'root canal'.  (Eye roll)  

So I'm keeping it super short again - just wanted to keep everyone in the loop!  Please pray for good health!

Much, much love!!

Dana

PS - I'll try to post some pictures soon

April!

Hello friends!

So sorry for the lapse in updating - Frazer had written one but we decided not to send it because things are a bit different for now.

Milla is doing much, much better!  She has had a huge surge of energy, alertness and an overall decrease in tremors and seizures!  We increased her depakote just a little bit a couple weeks ago and it is making a big difference - one that we didn't expect at all.  We are so thankful for this time with Milla!  

Elle is about the same - falling a lot and seizing a good bit.  Her rages seem to be on the rise again as well.  It's been pretty hard to watch.  We are having her fitted for some spring-loaded ankle braces that will hopefully help her bring her toes back up while she is walking/running and ideally, this will help her not trip so much.  We did increase one of her meds - an effort to better her sleep.  We will give it a few more days to see if it works.

Monday, we went up to Columbus, OH for an appointment at the Center for Batten Disease and met with a myriad of specialists.  No big changes - mostly, confirmation of what we are already doing. Thank you to those that helped us get up there and back home so quickly and kept Ann Carlyle while we were gone!!

Last week was Ann Carlyle's 7th birthday!!!  She and her friends went to the planetarium for a show and then we moved the party to our house for doughnuts.  She is so interested in stars and space and all right now.  Space and legos are her obsessions.  :)

Next Wednesday is Elle's 4th birthday!!  I can't believe our baby is turning 4.  Until last month, she still looked so much like a 3yr old to me but then she had a growth spurt and her legs are all of a sudden longer and she has transformed into (almost) a 4 year old!

So, I had a root canal this morning (not cool) and I'm still somewhat woozy and the pain is starting to kick in as the numbing wears off so I'm going to wrap this up but I wanted to keep everyone in the loop! (This is the choppiest update - I'm not very with-it!)

Much, much love to all!!

Dana