Tuesday, September 30, 2014

LeBonheur - Day 1 (again!)

Quick update while I've got a second...

It's been a good day - I was so excited that we got hooked up to the EEG THIS MORNING around 9:30, which has never happened in our previous LeBonheur visits!  In April, it was around 5pm and in June it was 9pm...so I feel like this day has actually been useful this time around.  And she has been seizing 'nicely' all day so that's useful too.  :)  She also had some blood drawn this morning to check her drug levels and some other blood levels - just routine. (Again, so thankful this happened this morning and not in the middle of the night.)

Also, a huge awesome blessing...our room.  In April, we were in this same room and had an incredible view of downtown, including the pyramid, bridge and incredible sunsets too.  The pyramid was, by far, Milla's favorite thing.  She looked at it all the time, told everyone else to look at it all the time and was constantly asking about it when we were here in June and were on the opposite side of the building.  So I sheepishly asked our dear friend, Tim Flack, who works here at LeBonheur as a family advocate, to see if we could possibly request this room.  And we got it!!! Thank you, Tim!!!  She is again looking at it all the time, telling everyone else to look at it, and at nap time when I closed the blinds, she asked me if she could see the pyramid one more time before she went to sleep.  I mean, melt my heart.  It gives me so much joy to see her so happy to have the pyramid back in her life.  :)  

Tomorrow, Milla will have a re-evaluation with neuro-psych.  She was evaluated in April and didn't do so well.  But the results were also somewhat skewed as she was seizing so much, it was late in the afternoon, and we had already been here for 3 days.  She was re-evaluated to a certain extent through occupational therapy but I think the neuro-psych one is a little more extensive and is evaluated by a psychiatrist.  So this is a good thing.  Dr. Wheless wants to see her progress (or lack of) and make sure she hasn't digressed as well.  And the evaluation will be happening tomorrow morning when she is the most energetic, etc.

Thursday, she will have an MRI.  Kind of like the neuro-psych eval, Dr. Wheless is  looking to see if her brain has had no change or has gotten worse (last MRI showed no brain growth from the previous MRI 6 months prior).  Best case scenario is obviously that her brain has grown but he seemed like he would even be somewhat okay with it having no change.  I'm planning on asking many questions about all this once he has the MRI in his hands...don't know a lot at this point.

Dr. Wheless also mentioned the genetic test we had to have redrawn a few weeks ago as he's pretty anxious to get those results.  The lab that processes this test recently told them that their turn-around time is much shorter than it used to be and the max waiting time should be 8 weeks.  I believe it's been 4 weeks since it was sent out...it's nice to realistically hope for answers in the next month.

So it's been a big day for Milla - I'm so thankful to have gotten so much 'done' this morning.  The previous 2 visits, we've literally sat around all day long with no EEG, no lab done, etc.  Just twiddling thumbs.  Today felt very productive.

Thank y'all for praying!!  I feel like God is already answering so many prayers!!  And I feel encouraged.  :)

"Come to Him, then, poor heavy-laden sinner, 
Come needy, come guilty, come loathsome and bare;
You can't come too filthy - come as you are."  (For He loves you so.)

Much love!

Monday, September 29, 2014

Game on!

Hey y'all!  I wanted to send out a quick email tonight...

First of all, thank you, thank you for the prayers for our inspection.  It went very well!!  We have the appraisal tomorrow and then I think we are out of the woods until closing!

We go into LeBonheur (aka "The Heart" as Milla calls it) in the morning - please pray for our time there...
Pray for her to have the seizures that she needs to have that will give her doctor the information he needs to help her.
Pray that the MRI is helpful for him as well.  
Pray that we can get a handle on why all this is happening and what we can do to help her.  
Pray that she will be able to nap well while we are there and that both of us will be able to sleep well at night.  
Pray for the other 2 girls who will be spending the week with 2 sweet families...that they will have fun and will be okay being away from us and their sisters.  
Pray for those families as well as they are taking on an extra child all week - that's never easy!!
Pray for everyone's health.  I had a fever virus over the weekend and Milla woke up with fever early this morning.  But she seemed better this afternoon so hopefully she got a mild form of the virus.  Pray no one else gets it!!

And as if things weren't crazy enough, my knee filled up with fluid today - even though I spent the last couple of days in bed!  I had it checked out and drained and I'll go back to get it re-checked in a couple of weeks.  It could be torn cartilage and if it doesn't get better, surgery (fortunately, minimally invasive) could be a possibility.  Please pray that this will resolve.  I'm not sure how to squeeze in taking care of my knee while taking care of Milla's needs, taking care of the other 2 girls and packing up and moving houses. ;)  

I am so thankful we have a God who is bigger than all of this, a God who loves us more than we could possibly fathom, and a God that has sustained us and provided for us all along the way and we know He will continue to do so.  

Know that God has also used Y'ALL to sustain us and provide for us.  We are so, so, so, so grateful for you.  I praise God for you every.single.day.  I am humbled and in awe of the love you show us.  And you have taught me how to truly love others.

Much love and thank you for praying!!!
Dana (and Frazer)

Tuesday, September 23, 2014

Mercy Being Poured Out...

I'm so thankful to tell y'all that Milla is doing a bit better this week!  Thank you again and again for your prayers.  We have seen God's mercy poured out...the contract on the house, the improvement in Milla's seizure activity...

Specific prayers that we had for Milla and that I wrote about to y'all have been answered.  Her seizure activity has decreased and she has been happy and energetic!!!  (This is also getting her in trouble a lot - but thankful nonetheless.)  Thank you for praying with faith - for praying for miracles.  She is still falling a good bit and not sleeping well and definitely still having seizures but there is such a huge difference this week.  God is good.

Also, more mercy...the people buying our house agreed to push the closing date back a bit so we could have a bit more time to get the new house ready.  We will close Friday, October 24th AND they are giving us the whole weekend to move - we don't have to be out until Monday, the 27th.

I'm sorry I haven't been able to write everyone back that has written - but THANK YOU for staying in touch with me, giving us wonderful and wise words of encouragement, for yummy meals, for helping with the girls, for your offers to help, for filling up our hearts.  Thank you to those of you that we don't know but are praying faithfully nonetheless.

Please continue to pray as we have our house inspection Friday morning and will go into LeBonheur Tuesday.  And then we pack.  My oh my.  

Much love - and wow - just thank you again.  Praise God from Whom all blessings flow...let all creation praise His name.

Wednesday, September 17, 2014


Yes!! We have a contract on our house!!!

I was talking to my mom and couldn't even put it into words, so I know I won't be able to here either, but I KNEW there were countless prayers being lifted up for us and for this house to sell, specifically yesterday.  I felt God's presence on the day.  It was His time and He was moving.

The crazy thing is that our realtor told us he had never, ever sold a house off of a realtor luncheon (which is what was happening yesterday) - it's like an open house for realtors, but with a huge meal.  An agent that attended the luncheon left to go get her client to show her the house. That client loved it and came back with her husband last night and they submitted an offer this morning.  

Crazy, I tell ya.  But God likes crazy.

So thank you for praying so fervently!!  Please continue to pray that the inspection goes well (that's always a big hurdle) and that all will be well until we actually close.  (We aren't sure when closing will be yet - it will either be the middle or end of October...but not September 30th!!!  Yay!!!)

Thank you for praying that this burden be lifted from our shoulders.  My cup runneth over.  :)


Monday, September 15, 2014

Please Continue to Pray!

Hey y'all - we are praying fervently for God's mercy to fall on Milla.  Each day seems to be worse than the day before.

Milla's seizures have reached staggering numbers - 500-600+ per day during the hours she is awake.  And we are seeing that she is most likely having seizures in her sleep as well.  She is waking up early from napping and during the night seizing.  We are hopeful that the seizures are what is waking her up and that she isn't just seizing constantly in her sleep.

Also, another problem has developed at night - she is sleepwalking.  After finding her downstairs at 3am the other night, we put a gate up at the top of the stairs but there are still issues.  She got into a tube of anti-itch benadryl cream and squeezed out every bit all over herself and the bathroom before we realized she was awake.  (I'm so thankful she didn't think it was toothpaste and ingest it!)  She is spending large amounts of time awake in the middle of the night, getting up, playing in the bathroom, etc., which just exacerbates seizures and her exhaustion.  It's scary because we don't always hear her initially and she isn't really awake and 'with it' so I have no idea what she is going to do.  She shares a room with Ann Carlyle so we can't lock her in her room due to Ann Carlyle needing to be able to get to the bathroom.  She is big enough to climb out of any crib or pack-n-play as she will be turning 4yrs old in November.  There are big obstacles to every possible solution we can think of, especially in this house.

Her days are also fraught with danger.  She is seizing so frequently and is so unstable and so lethargic/sleepy and out-of-it.  Even if I am holding her hand, she is falling frequently and hurting herself.  She is tripping over her feet much of the time as well and I assume she isn't seeing well either - possible blurry and/or double vision.  

Her screaming fits continue to be very frequent - she gets so frustrated and is miserable so much of the time.  She needs me to hold her much of the day because she is so weak from everything (seizures, lack of sleep, meds, not eating much at all).  This is also hard on sweet Elle, who is just 2 ½ yrs old.  My heart breaks for her as I can't care for her like I long to do because of Milla's constant needs.  I truly need more arms and hands.

Another problem is that Milla is way to bold and independent for her own good when she gets a burst of energy.  She will run really fast (falling - or nearly falling - headlong into a hard surface) or sprint to the stairs or decide to go to the bathroom on her own.  Today, I spent the better part of an hour cleaning up a rather large bowel movement from her entire body and much of the bathroom.

Her doctor has put Milla back on the depakote (the one we had taken her off of a couple weeks ago due to her lethargy).  He hadn't wanted to medicate her too much before our upcoming stay at LeBonheur, but we also have to keep Milla safe until then.  Too, we are slowly increasing the onfi medication, but we have not seen any decrease in her seizures - only an increase in the lethargy again.  Needless to say, she will definitely be admitted to LeBonheur on the 30th, most likely for the whole week.

I cannot express how discouraged we are right now - and we feel such deep, agonizing grief over our precious Milla and her suffering.  We have pleaded to God for mercy - please pray with us for His mercy and protection.  I've said this before, but I say it even more so tonight, there is no hope but our hope in Him.  It is absolutely the only thing we can cling to.  Please pray that God renews our faith day by day, moment by moment.  

The 'new' house is coming along well and we continue to pray that God brings us a buyer soon for our Midtown house.  We would surely welcome the weight of this house off of our shoulders.

Thank you for your love, prayers, meals, cards, flowers, gifts, emails, phone calls, texts, offers to help us - I cannot tell you how much it sustains us to know that we are not alone in all this!  You are truly the hands and feet of Jesus to this family.

Much love,

Tuesday, September 2, 2014

More News...

I wanted to send out a quick note and prayer requests...

Milla has not had a good weekend.  Her seizures have picked back up - and she may be having 1 or 2 new kinds of seizures as well.  We are not sure really what is going on.  What is a seizure, what is a side effect of medicine, what is a neurologic issue...we just don't know.

She is completely out-of-it-at times, she is falling a lot, she is still having her screaming fits, and of course, the seizures.

So I found out this morning that Milla's doctor wants her back in the EMU (Epilepsy Monitoring Unit) at LeBonheur at the end of the month when he will be there.  We are scheduled to go September 30th for the week unless things improve by then.

While I am thankful for the extra monitoring and care (and possibly answers?!) this will provide, I feel a bit sad and defeated as well.  This will be her 3rd time in the EMU since April...and we are still no closer to knowing what's going on and/or decreasing her seizures.  Not to mention the stress it puts on Milla and the other 2 girls.  And Frazer and me.  And our friends and family as y'all shoulder this with us.  It's just a lot and I feel heavy anticipating having to go back again.

Please pray for all the planning and scheduling that has to be done for that week...that all will fall into place and that the girls will be okay with all the craziness that the week will hold for them.  They have done very well in the past but by the end of the week, they are always falling apart a little bit.

And then there's the whole selling-the-house thing.  :)  Please pray that we will have it sold by then!  I worry about Frazer and/or other people having to keep the house show-ready, etc.  The other 2 times we've been at LeBonheur, everybody just goes into survival mode and the house goes into survival mode as well.  (This mode is not compatible with trying to sell a house.)  

Another possibility is that the house sells and we have to close at the end of the month which would mean we would have to move out of our Midtown house but not into our new house (because it won't be ready by then) at the same time we are admitted into LeBonheur for a week.  

There are a number of different ways this could all shake out with the house, and bottom-line, I know God has this all planned out and all will be well in the end but please just pray for mercy for us as things could get quite insane.  And pray that we will not be anxious for anything, but we would be able to fully trust God and in His provision no matter the circumstance.

And pray for healing!  Pray that God will bring Milla's body rest and we will find a way to eliminate both her seizures AND the side effects of all her meds.  Pray that we won't need to go back to the EMU.

Thank you for your faithfulness to pray for us and for your continuing acts of love you are pouring on us!