Sunday, September 25, 2016

September 18th Update - Re-Entry

We.are.exhausted.  Mercy.

The adrenaline that has carried Frazer and I through the last few weeks has been depleted.  Utterly depleted and we are feeling it on every level.  It's hard just to keep our eyes open during the day.

Elle is absolutely non-stop.  She is constantly on the move and her attention span is about 1-2 minutes.  On a good day.  This has not made life easy at all as someone has to hold her hand everywhere she goes so she won't fall.  Here's the thing...her walking is better, y'all.  Like really, really better.  This is really good and really exhausting.  Her confidence is high but she is still super unbalanced and doesn't have the strength and coordination to keep from (eventually) falling whenever she walks.

One thing we have seen (praise God) is that Elle is finally hitting a plateau with her disease progression.  This could last another day or another month.  God only knows but we are thankful to see this happen as she has been in a disease free-fall all summer long.  And we are very hopeful as she is now getting those enzymes that could possibly stop the progression all together.

She is still having a very difficult time with her speech and her behavior has been trying, to say the least.  And her seizures are still frequent...hundreds and hundreds and hundreds every day.

So - lots to pray for with our Elle-belle.  :)

Her next infusion will be Sept 29th.  We most likely will be taking the whole family this time.  The neurologist at Nationwide Children's wants to see Milla and we are thinking it would be a good time to take Ann Carlyle too.  Ann Carlyle has never been to Columbus with us and we really want her to have that experience, to see the hospital, etc.  It will be crazy-town but just for 4 days this time.  

It's funny how fast the 29th will be here.  I was looking at my calendar yesterday and realized that we will be flying back up to Columbus in a mere 10 days. Eek.

Milla is doing a little better with her seizures this past week but not great.  We've adjusted one of her meds a little and adjusted a couple of other things that could help with medication absorption, but she's still having a tough time every day.  I don't feel like she's in a free-fall anymore but we are still seeing definite disease progression every week.

And then our Ann Carlyle - poor thing is always at the bottom of the totem pole.  She has been pretty clingy and needy this weekend.  I can tell the past few weeks have had an impact on her.  But she is still upbeat and loving on her sisters and taking it all in stride.  She really is amazing.  I think I would be a total pill if this happened to me when I was her age.  Her positivity and laughter makes us smile and laugh along with her and challenges us to see the every day joy in life.

Pray for health for all of us.  Ann Carlyle has had the sniffles this weekend.  Frazer and I are run-down and I fear our immune systems aren't 100%.  An infection for either Elle or Milla is a very scary thing right now.  Partly, for different reasons - Elle because of her every-other-week infusions and needing to be healthy for that; Milla because of her very high risk for pneumonia and other complications.  Anyway, we do NOT need sickness in our house and we are heading headlong into cold and flu season.  Eek again.

Please pray for me and Frazer.  We are just drained and sad and hopeful and scared and not hopeful and thankful and a million other things.

My brain can't think of anything else at the moment even though I know there is tons more to say.  

Thank you all.  

"But for you who fear My name, the sun of righteousness will rise with healing in its wings.  You shall go out leaping like calves from the stalls." Malachi 4:2

My heart leaps at the thought.

Oh how He is our hope.  Our hope does not lie in this world, but in Jesus.  

Much love from the Gieselmanns - we thank God for you
(Oh and ps - we are still having lots of issues with out aide-help at night.  This is extremely stressful and tiring.  Please pray for this to be resolved...and quickly.  That God will bring us the perfect people to love our girls well and that are able to take care of them well as we sleep and that we are able to trust.)

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