Discouraging News

Hey y'all - so I found out yesterday that Milla's blood was never sent out for that genetic test we've been waiting on for 3 months.  Needless to say we are so discouraged and heart-broken and angry too as we will now have to wait another 6-12 weeks for results. These results will hopefully give us a diagnosis and we can't really move forward much with Milla's treatment until this test is run.

Please pray for our hearts and that somehow the test will be run quickly. (The blood is sent out to 1 of just a handful of labs in the country that do these types of tests and they will be looking very closely at her DNA so it is quite a lengthy process and there's no rush we can put on it.)

My heart is hurting this morning but I truly know God has His hand continually on us and on every aspect of Milla's treatment.

My mom sent me this quote from Charles Spurgeon...
"God is too good to be unkind, and He is too wise to be mistaken. When you can't trace the hand of God, trust His heart."

I know His love.

Thank you for praying for us and hurting with us and loving on us -
Dana

Eeeek! It's been a pretty long time since I've sent an update!!

Thank you for being so faithful to pray in spite of the lack of updates!

As always, my excuse is crazy busy times at the Gieselmann house.  We had a very successful open house last weekend and had a number of showings through the week.  And then I did a wedding over the weekend (I have a little side business of doing wedding flowers) which always means I'm in a flower vortex for about 3 days straight.  (Congratulations to Bubba and Katie Badgett!!!)  So yesterday was the first day in a while that I could actually collapse for more than 5 minutes on my couch and I remained there comatose much of the afternoon/evening after getting the house back to being show-able.  :)

We have not sold the house yet but we have had some serious interest - hoping it gets real, real serious!  Thank you for continuing to pray for the perfect buyer.  Construction continues on the new house - although it is still more in the phase of 'getting worse before it gets better'.  I walked in the other day and found a huge dirt pit in the middle of the kitchen with a pipe sticking up out of the ground.  Not the floor...the ground.  It will all be put back together someday, right?  Hoping it happens before the year 2030.

Thank you, too, for your prayers for our appointment with Milla's doctor last week.  Still no results from the genetics test.  Sigh.  But we are told it really, really should come back by the end of this week.  Again, just hoping for some results before the year 2030.  Her doctor was mostly concerned with her lethargy and unstableness so he decided to slowly wean her off the Depakote, which is the drug she's been on for the longest time.  Fortunately, we saw only a slight increase in seizures throughout the week, but unfortunately, her lethargy hasn't improved.  Today, however, I saw a good many more seizures - still way less than before - but seeing the marked difference today worries us that the seizures will just keep increasing back to her 'norm'.  We step down on the Depakote again tomorrow.  Please pray for a decrease in the lethargy and other side effects but that the seizures will stay at a minimum.

The side effects have been hard on everyone the past couple of weeks.  Milla can be so lethargic, she is like a rag doll - completely limp with a vacant look in her eyes.  It breaks my heart when she is like this - just as much as watching her seize because it's like she's not really present - she's just an empty shell.  Also, her screaming has been quite frequent (to say the least).  I have started calling them her neuro fits because it's not just a temper tantrum.  The screaming is full volume but harsh and repetitive...almost rhythmic.  I don't know how else to describe it.  But it's terrible.  Sometimes it helps to pick her up and hold her but other times that just exacerbates the problem.  There's nothing we can do but let it run its course.  

Another challenge with Milla's neuro fits is that Elle is the great imitator of her big sisters.  And what Elle sees sometimes through her little 2-year old eyes is a temper tantrum that is going unpunished.  So you can see, trying to teach Elle how (and how not) to act is, like I said, quite the challenge.  Also, Milla's tremors and unsteadiness are a bit worse, which increases her frustration and increases the frequency of her neuro fits.

Last week, one of her speech therapy appointments didn't go well at all because she was so lethargic that morning.  She can barely function at times, tripping all over herself, falling, vacant eyes, screaming.  Fortunately, she did better Thursday, when she had both speech and occupational therapies.  One thing that the occupational therapist has noted is a bit of muscle weakness mostly in Milla's core and grasp.  Her doctor agreed that he had noted some loss of tone.  There can be a difference in muscle weakness and low muscle tone.  Muscle weakness is something that can be strengthened...tone is a neurologic condition that causes muscle weakness.  Low tone can imply a much more serious problem.  Needless to say, this has burdened my heart lately as I struggle with the anxiety of the unknown.  We still do not have a diagnosis for Milla - but her doctor is pretty convinced that she has an underlying condition that is causing the seizures.  In other words, the seizures are just a symptom of something else.  

To be honest, most days I'm so task-oriented and/or operating on adrenaline trying to get through the day with everyone (relatively) in one piece and just getting done what needs to get done.  Robot days.  But then there are the days that my heart takes over and things feel very, very heavy.  Things have been quite heavy the last couple of weeks.  Milla's issues have been highlighted in her therapy - which is a necessary thing in order for her to get the help she needs - but it's hard to process.  

We long to make her suffering stop.  But as last week marks one year since Milla's first seizure and as we are seeing the degree of her struggles, we are seeing that this journey we are on is not a short one.  Please pray that we will remember to just put one foot in front of the other - that we will remember that God will give us the manna we need for today and not to worry about tomorrow - He will provide all that we need.  We may not know why Milla is having seizures, but He does.  He knows her and loves her and she is fearfully and wonderfully made.  I have to preach this to my heart all day everyday.  I must remember too how much He loves me and Frazer and how He knows the pain of a parent watching his/her child suffer.  

Oh how He loves you and me...He gave His life, what more could He give...oh how He loves you and me...

Thank y'all for sharing this burden and helping us put one foot in front of the other.  I can't tell you enough how thankful we are for all your help with our physical needs (I continue to be blown away by your so very generous and kind hearts), for all your sweet words and for your warm hugs, for your prayers, for your love for our family (even if we don't know you personally!).  I'm so thankful to be able to experience God's love in this way.

May God bless you as He has surely blessed us - 

Dana

Tough Week

Thank y'all for all the prayers and checking in with us to see how we are doing this week!  It is so encouraging to know that we are not alone...especially as this journey has turned into a long one with no real end in sight.  Thank you for persevering with us.

It's been pretty rough lately.  Last week, Milla's seizures became worse and worse despite an increase in her Zonegran (the newest med).  By Thursday, she was seizing constantly, it seemed.  She's had no convulsive seizures, thankfully, but was most likely reaching the 250-300 range in a 12 hour period while awake.  She was just so out-of-it and just a mess.  And to top it off, she had a couple of big spills that happened just while walking through the house.  Her poor mouth is still very swollen from a fall she had a week ago and 1 fall caused the roof of her mouth to open back up again...pretty painful (and quite bloody).  And yesterday, she tripped over Frazer's feet and tagged her cheek on our (very hard, very wooden) coffee table - she doesn't tend to attempt to catch herself with her hands and goes down so fast.  She's sporting a nice shiner today.  Many people have asked about using a helmet, but all but a couple of her falls in the last 8 months have involved areas that would not have been protected by a helmet.  She's just so unstable even when she isn't seizing and her gait has gotten pretty bad in the last few weeks as well.  Needless to say, I went searching for a 'soft' coffee table today.  :)  

So as of today, we are increasing her Zonegran again and increasing her Onfi as well.  I'm pretty apprehensive about how she will be the next couple of days in regards to the side effects.  I'm expecting her to be pretty lethargic...and pretty unhappy.  And we are still waiting for the genetic test results.  Waiting...as some of you may recall, not-so-much my strong suit.  We have an appointment with her doctor next Monday and we are excited to get to sit down with him again pretty quickly (relatively-speaking) after the last appointment.  Our list of questions is getting long!  Please specifically pray that the genetic test results will come back this week so we will have some clarification for our appointment next week.  How wonderful would that be?!

Please continue to pray for our hearts as I know you have been.  Seeing Milla decline as she has this past week has been so very hard.  Sometimes we feel pretty helpless in how to care for her.

Some good news is that her therapy went very well last week - without me!  She participated fully and although there was some discouraging news, I was thankful that she enjoyed it and that they didn't have to come get me to help out with her.  She started occupational therapy and I really liked her therapist (as did Milla!).  This first session was an evaluation and I will receive the full report this week but one thing the therapist noted was that Milla had some muscle weakness particularly in her core.  I was truly shocked!  Milla has always been a very active child - always wanting to run and jump and roll and climb, etc.  The unknown is if the muscle weakness is a condition that could be a clue to an underlying problem or maybe it's 'simply' a result of being in this uncontrolled state of seizures - and exhausted - and medicated - for so many months (which can be remedied once the seizures are controlled).  I can't believe we have been at this for almost 8 months now.  I'm tired just thinking about how tired her body must feel at this point.

In other news, the new house is well under way - our painters are working at breakneck speed!  The kitchen is fully demo-ed and framed up.  All the plans are in place and most of the big decisions are made.  Whew.  THANK YOU to those that have helped us get to this point.  We could not have done it without you!!  It has relieved so much stress  partly because we've had to make such quick decisions but bottom-line having your professional and very, very gracious help is just amazing.

And the sign is up!  Our midtown house is officially on the market!  Please tell everyone you know - and everyone you don't know too.  :)  We start showings Saturday and the open house is Sunday from 2-4.  (I think I told everyone the wrong dates with my last update - so sorry about that!)

Also, thank you for your prayers for Ann Carlyle.  She officially started kindergarten today and while drop-off was a bit shaky, there were no tears and she made a new friend that was having a pretty tough time this morning.  I think it was good for her to need to help this little girl and she wasn't thinking of herself and her own fear so much.  She is definitely her father's child - makes friends in a nanosecond everywhere she goes - loves others so well.  She's so brave - I'm pretty sure I was the painfully shy 5yr old on the first day of kindergarten with the quivering lip, tear-filled eyes, looking so scared and sad.  Ann Carlyle goes up to kids all the time and asks, "will you be my friend?"  I love that she has such a heart for others and the confidence to go out and bring them in.  When I picked her up, she leapt into the car and exclaimed, "Mommy, I had such a great day at kindergarten!"  So thankful for today.  So thankful for all of you praying for Ann Carlyle.  Please continue to pray as she has wet her bed 7 of the last 9 nights and complains all that time that her tummy hurts.  I'm hoping that getting this week of school under her belt will relieve much of the stress she has been feeling and that school will also provide a kind of reprieve from the stress at home.

Some words from a great hymn based off of Matthew 11:28-30..."Come to Me all who are weary and heavy laden and I will give you rest."

Come ye sinners, poor and needy, weak and wounded, sick and sore.  

Jesus ready, stands to save you, full of pity, love and power...

Come ye weary, heavy laden, lost and ruined by the fall.  

If you tarry till you're better, you will never come at all.

Thank you again for all your love and support!!  Much love from the Gieselmanns!

-Dana

PS - Our address is 1781 N Parkway if anyone is interested in taking a look online.  :)

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 - 

Dana

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!!

Dana

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

We Got In!

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