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 - 

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