Thursday, July 31, 2014

Just When I Thought Life Couldn't Get Any Crazier...

Life seems to get crazier by the minute around here!

We still don't have the house on the market, but we are close!  We still have some things to tidy up and all should be (a.k.a. has to be) ready by Tuesday.  I need about 8 more arms, 8 more hours to the day and 8 more brains to process it all.  

As of today, we are the proud owners of TWO houses!  (Eeek!)  But thankful all went well at the closing today so let the demolition begin!  After going round and round about when we should move, we decided it would be best (and safest) for us to wait until all the work is completed on the new house before moving in.  The last thing we need is a bunch of nail guns and drills lying about for curious hands to get ahold of or cords to trip over, etc.  I'll take a couple more months of dealing with the stairs (to which we are at least accustomed).  

It's probably also better for Maddy, our dog, who is old and is a scaredy-cat (sp?) and who, after getting spooked by the work taking place on our bathroom, decided to wander off (collar-less) and get lost while it was 105 degrees last Saturday.  Did I mention she's a husky mix?  Therefore, Maddy and heat are not a good combination.  After an evening and night of sadness and worry, we thankfully found her with a sweet family that had taken her in for the night.  We weren't sure we could take anymore stress but God was merciful and reminded us that He cares for all parts of this family.  :)

So...back to the move...we are hoping and praying that the house will be ready by the end of September.  It's a tall order though, as we are having the kitchen gutted and re-done. 

This is also all assuming we don't get kicked out of our house before then.  :)  Please pray for perfect timing with selling, not having 2 mortgages but needing a place to live until the new house is finished.  It's a lot to juggle so I am genuinely glad that I am not ultimately in control.

I have a super specific prayer request in regards to the house(s)...the house will officially be listed on the market Friday, August 8th...and that weekend we will hopefully have many showings and an open house.  Please pray that we sell the house THAT weekend!!  It will be quite the challenge keeping a clean, clutter-free and dog-hair-free house, especially with Milla's seizures increasing again (I'll get to that in a second), lots of therapy, and Ann Carlyle starting kindergarten and all that goes into being (me and her!) first-timers in elementary school.

While I'm thinking of it, please pray for Ann Carlyle as we are starting to really see the effects of her world being shaken up.  She is getting very anxious about starting school...especially since she won't be at Snowden where she thought she would be and where one of her best buddies will be.  Too, all the changes with the move is shaking her up a bit - we are packing stuff up, boxes are everywhere, the house is being rearranged (staged) for showings.  Yesterday, we had a guy here (for staging purposes) that totally rearranged the living room.  It looks great but it really is rocking her world.  She had such a hard time going to sleep last night.   She told me she felt scared and her tummy hurt because of her new school, because of the new house, because of the living room changing, because of the way the house is looking different.  (I was amazed at how well she was able to articulate her feelings and fears!)  Her world that she has lived in for 5 years - all she's ever known - is being completely uprooted.  And her sister has seizures all the time.  And her mommy and daddy are super busy all the time.  That's a lot for anyone of any age.

And so Milla...we were doing well for awhile (with seizures) but her doctor tweaked her meds over the weekend because he was concerned about her lethargy.  So now she is having a lot of seizures again...pretty much back to around 75-100/day.  And she can still be pretty out of it/lethargic because the seizures exhaust her brain and body.  So how do we balance no seizures/bad side effects vs seizures/less side effects when either combination is bad?  I have no idea.

She had blood drawn yesterday for drug levels and we are still waiting to hear back what the plan is in light of the results.  Also, we are still waiting on the genetic test results.  I'm hoping to hear something (about drug levels and/or a new plan) by the end of the day today.  

Please also pray for Milla's therapy schedule.  As it stands, it will be very difficult for her and for Elle - I won't bore you with the details of days/times/etc.  I'm praying the Lord will just take care of the timing of everything.  And last week, the therapy itself was extremely difficult.  Milla is very behind and it was the first time I felt that she was aware of that - and it made her frustrated and just so sad.  Also I may have to sit in the therapy sessions with her because she wasn't participating last week unless I was with her.  This is fine except that I will have to figure out something to do with Elle.  I had all 3 girls last week and trying to keep Elle quiet and busy and Ann Carlyle from yelling out all the answers and Milla focused and participating was, well, it was a circus act to say the least.  I felt like I had just finished a marathon as we drove home...not to mention the deep, deep sadness that threatened to overtake me as I saw how sad Milla was.

And so the craziness continues and somehow we are still standing.  :)  Thankful for the power of prayer and the Rock on which we stand.

Love you all - 

Monday, July 21, 2014

Milla-willa, new house, old house, lots going on!

Hey there, friends and family!  So we just keep on keepin' on...crazy busy but hanging in there.

Thank you for your prayers for the new house inspection!  It went great!  Although the house needs some love, it is all cosmetic and the house is in great shape underneath all the ugly.  So we are moving forward with everything and plan to close on the 31st.  We are having a lot of work done before we can move in - please pray that all those moving parts will move well and move quickly so we can get into that safer place for our family.

We are also hoping to finish up projects this week in our Midtown house so we can get it listed by week's end.  Lots and lots to do!  And please continue to pray for a buyer!

So Milla had some good times last week but also had some hard times.  Her seizures started up again, although she is still having much less than before.  She's had a good bit of side effects from her meds as well.  Her doctor played around with her dosages and while the newest one does seem to be decreasing her seizures a lot, it has done a number on her neurologically.  She's had a few days of complete zombie/lethargic behavior - so much so, that she wasn't even functional and it didn't seem to be much (if any) better than having seizures.  But fortunately, her body has adjusted somewhat, and she hasn't really been lethargic for 2 or 3 days now - she will just have some zoned-out moments throughout the day.  

However, she is still having many screaming fits.  I'm not sure exactly what her little brain is going through, but she will clutch her head with both hands and just scream and scream.  It breaks our hearts to watch this - and to be honest, by the end of the day, I feel like clutching my head and screaming too.  It's hard on everyone.

She has also been waking up every night very out-of-it and upset.  It can be a struggle to get her calm and back to sleep.  Please pray for good sleep for all!

We started speech therapy last week and her therapist seems really great.  Milla went willingly with her and didn't even cry!  We are so thankful for that answer to prayer!  Her therapist wants her to come to therapy 2 times a week, though, instead of just 1 day due to the extent of her delay.  So we will be doing that and adding occupational therapy in a couple of weeks.  Please pray that she adjusts well to all this therapy as I'm sure it will be a bit exhausting for her.  

As always, our hearts are beyond thankful for you all.  I was just telling Frazer tonight that the dinners have been my life-saver.  As has been my help on Mondays with the girls.  Thank you to all that have made that help possible!!  Thank you for checking in on us, praying for us, being a part of our lives.

Much love!!

Sunday, July 13, 2014

Update - It's a Good One!!!!

Hello!  Thank y'all so, so much for your prayers last week as we got in to see Milla's doctor.  It's been an insanely crazy weekend (truly no exaggeration) and I haven't had a moment to spare to send an update out.

So the appointment was really great in that I felt that we had some really good time with Milla's doctor and were able to talk through some big topics of concern.  Unfortunately, we still don't know a whole lot - we are still waiting on some genetic test results and we are still very much in the dark as to why Milla is having these seizures.  There is also a possibility that her seizures are a symptom of something bigger.  But her doctor is really committed to getting to the bottom of things and that is comforting.  If the pending genetic test doesn't reveal anything, then we will do a more detailed genetic study and also, the MRI Milla will have done in a few months might be helpful in revealing a cause of the seizures.  

But I have saved the best for last.  :)  

We were able to stop the ketogenic diet!!!  And here's the most awesome, awesome, awesome-est part...Milla has been doing great!!!!  And by great, I mean G.R.E.A.T.  Her seizures have been in the 5 PER DAY (if that) range and they have been the tiny ones!  Her speech has been A LOT better too!  And her tremors!  And she is been in such a fun, playful and active mood!  I can't stop using exclamation points!!!  It's amazing and wonderful and so encouraging!!!

She transitioned off the diet seamlessly and like I said, has been doing so well.  I have to mention, too, that we started a new med Wednesday night...but her doctor said we wouldn't see any change for 3 or 4 days at least and that it will take us 3 weeks to get up to her full maintenance dose.  So, we don't know if it is being off the diet and/or starting the new med but God has laid His merciful hand on Milla's brain and body and has given her a beautiful 4-day respite from her seizures.  We, of course, pray that this will last, that we have finally found the perfect drug cocktail to curb her seizures.  But even if not, we are so very thankful for His goodness.

Please pray that the seizures are gone for good...but (not to be a Debbie-downer here), Milla has a history of doing really well after starting a new med/changing a dose and then going back to her norm.  So we pray this will not be the case this time - we are trying to be hopeful.  However, my heart is a little fearful too as I feel like that this can't be 'real'.  

But regardless of what God has in store for Milla and us this week and beyond, we know His love is never-ending.  And so really, that is where our true hope lies.  We cannot hope in science or doctors or meds or that 'everything will just be alright.'  Our hope is built on Jesus, that He died and rose again, and actually, that everything will be alright, when He returns and all the brokenness of this world will be no more.  

We are so very thankful to be off the diet - to have that heavy, heavy burden removed from our lives.  It has been so freeing and makes my heart rejoice to see Milla eating normal snacks with the kids at PDO or in the church nursery...or even just at home with her sisters.  She is, however, still eating shredded cheese much of the time - we've created a cheese monster.  :)

Please continue to pray for us as we are busy bees working on the house, getting it ready to list.  Continue to pray that God brings us a buyer SOON.  I'm starting to really feel the pressure of getting everything done and clean and pretty and keeping it that way.  Pray that the inspection on the new house Tuesday will tell us all we need to know in order to move forward (or not) and close at the end of the month.

Thank you, as always, for being so faithful in your prayers for Milla and our family.  It means so, so much to us....more than I can ever express.  And the meals have been INVALUABLE.  I cannot thank you enough.  Really.  Really really.

And thank you for all the support we have been given with childcare help.  What a tremendous blessing this has been!!  I might be lying in a heap somewhere passed out from exhaustion and stress if we hadn't had this help...

Oh - and I almost forgot - Milla starts speech therapy Thursday!!!  And will start occupational therapy soon!  This is more great news and an answer to prayer - we actually feel like progress is being made after so many months of nothing working for Milla's seizures and Milla not being able to have the therapy she really needs.  Please pray for a good connection with her therapists as this is so important for any child's success with therapy.

Ok, I'll stop now - but one more THANK YOU for loving on us.  :)  

Much, much love back to you this Sunday evening - Dana

Tuesday, July 8, 2014

We Got In!

I just wanted y'all to know that we got that appointment with Milla's doctor Wednesday!!  Praise the Lord!!

Big News!

So big news!  We put a contract on a house!  It needs some love, but it is 1 story and I feel like I can't get into it fast enough.  And it is in the White Station school district so we can rest easy about Ann Carlyle starting kindergarten there in August.  We will be just a block from the elementary school and a block from Avon Park, which is just awesome.  We close at the end of the month and we are hoping to have our current house on the market in the next couple of weeks.  

We are so thankful and feel that God brought us to this 'new' house in His perfect timing - and at the same time, we are praying and trusting that God will bring some buyers in His perfect timing as well - hopefully soon!  We had done some research online and went to see 5 houses last Wednesday...we went back to see it Thursday morning and put our offer in the afternoon.  They accepted Friday!  

What an answer to prayer!  How wonderful that we didn't have to spend a month or 2 or 3 looking for a house, especially with the inventory of houses in Memphis being low right now.

So now we must sell our house.  Ya know, no biggie.  :) Please, please, please pray that God will bring a buyer just as quickly as He brought us the other house.  (Also pray for the inspection next Tuesday on the new house - that all will check out so we can move forward and close.)

As far as Milla is concerned, there is really nothing new to report.  We are still doing the diet - but still not seeing any benefit.  Last week, her doctor wanted us to keep on the diet just a little longer and we are hoping this week will be the end of it.  After communicating with his nurse today, we found out there is a possibility we will be able to get in to see him Wednesday - please pray that this happens!!!  As it stands, we have an appointment on August 11th, but there are so many things we want to discuss with him sooner than later.  We are going to go ahead and increase one of her meds a little bit to see if that helps.  Please pray for the side effects to be mild.  This is the Onfi medication we are increasing - which makes her have screaming fits and tremors.  Her tremors are already pretty significant, especially when she is doing a fine motor activity such as eating, puzzles, etc.

Please also pray that we will either see a significant benefit to the diet so that we would know we need to continue or that we will get the go-ahead to wean her back to a normal diet.  It continues to be so stressful on everyone and added to that, we are concerned that Milla eats the exact same thing every single day (and basically the same thing every meal and snack) - this has been the case for 5 weeks now.

Please pray for adequate time for us to prepare our house to be sold - and that we will be ready to list it within the next couple of weeks.  Thankfully there is not much to do - the most time consuming thing will be packing up and decluttering.  And of course, keeping the house neat for showings will be quite the challenge with 3 little girls running around with a combined attention span of 90 seconds.

I felt so profoundly loved yesterday at church as we were singing "In Christ Alone."  Here is the first verse (but I'm including the whole song at the bottom of the email because it is just so beautiful and assuring):

In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.

So thankful this week for His streams of mercy that are never ceasing.  Thank you for continuing to care for us by bringing us meals, helping with the girls, picking up things from the grocery store, loving us, asking how we are doing, listening, making sure we remember that we are not alone in this.  

Much, much love to you!

PS - If anyone is interested, our house is a 4 bedroom, 3 bath bungalow style house in the Evergreen Historic District in Midtown...1 block from Snowden Elementary School and just 3 blocks from the zoo - you can also easily walk to Levitt Shell, Overton Park (with the awesome Rainbow Park Playground and dog park), Brooks Museum, etc.  It's a great neighborhood!!  Also, you will have a front row seat to things like the St. Jude Marathon!  We will miss so much about this house and neighborhood!!!

In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.

In Christ alone! who took on flesh
Fulness of God in helpless babe!
This gift of love and righteousness
Scorned by the ones he came to save:
Till on that cross as Jesus died,
The wrath of God was satisfied -
For every sin on Him was laid;
Here in the death of Christ I live.

There in the ground His body lay
Light of the world by darkness slain:
Then bursting forth in glorious Day
Up from the grave he rose again!
And as He stands in victory
Sin's curse has lost its grip on me,
For I am His and He is mine -
Bought with the precious blood of Christ.

No guilt in life, no fear in death,
This is the power of Christ in me;
From life's first cry to final breath.
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home,
Here in the power of Christ I'll stand.