Thursday, August 28, 2014

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 -

Monday, August 25, 2014

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 - 

Monday, August 11, 2014

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