Monday, October 29, 2012


It was a roller coaster of a weekend.  On Friday we obviously got the news on me.  We told the kids Friday evening and had an evening home.
Saturday was Emily's birthday so we tried to keep the focusing on celebrating her 12th bday!  We went to Legoland and out to dinner.
Saturday evening bob and I stopped by a friends halloween party and hung out for a little bit.
Sunday Bob and I took Eli to church and the older 4 went with Lauren and my parents to lauren's church.
Sunday evening the olders went with lauren to a bonfire at church and Bob and I had some quiet time at home with Eli.
This morning has brought around 20 phone calls, some emails, appts, and alot of planning.  It's all in planning mode at this point.  They have scheduled me a rush appt with the neurosurgeon on November 8th.  I have my surgery on my right hand/arm on November 2nd.  So it's alot of things happening really quickly.
Today was luckily Monday so I had my standing appt with my grief counselor.  I absolutely love her and have no idea how I would make it thru without her.  I was able to openly really talk to her today about some of my thoughts and feelings and things I wanted to get done.
This evening is my first class titled "Support for the Supporters".  Right now it seems so far out and strange. 
The weekend was an unpredictable emotional rollercoaster.  Some songs simply caused me to cry.  Someone talking to me.  Just sitting there thinking in those few un-busy moments.  Today I feel numb.  It's been a whirlwind of planning and that's kept me mostly busy.  I've only cried once today and that's once to many for me.  I'm so tired of crying.  I'm so tired of feeling any emotion right now.  I'll take numb.  After these last 3 yrs of continual bad news and heartache, numb is very much welcome.
I will get more updates up this week, but just wanted to hit a brief check-in.

Friday, October 26, 2012

Crushingly Devastatingly Terrified

I've been behind on updating as I've been pretty sick.  I've been having migraines daily.  They are there when I wake and when I fall asleep.  My eye sight has been struggling as well as my hearing.  I've had facial and eye twitches.  I can no longer lay on or touch the back of my head.  My ears hurt to the point where I can hardly talk on the cell phone without them throbbing.  They put me on meds that made me even sicker.  I've been to the neurologist and the family doc.  They did an EMG and discovered that I have severe carpal tunnel with sensory nerve, motor nerve, and muscle damage.  They scheduled me for surgery November 2nd. 
Then they did neck xrays.  They saw some issues with arthritis at the base of my neck.  Next they did an MRI of my brain and neck.  This was on Tuesday.
My doctor called me today with results.  She apologized 10 plus times while giving me the results.  I listened and wrote notes as she talked.  Then cried and cried and cried.
I have an Arnold Chiari Malformation.   She is sending me to a neurosurgeon for surgery on my brain and spinal cord.  I'm terrified. 
I feel as though I'm being crushed.  I have felt my strength wavering over these last few months as we've gone farther down the road of Mito with Eli but this is more than I can bare. 
We told our kids tonight and our immediate family.  I simply don't have the strength to call everyone so please don't be offended if you weren't on the list of people we personally spoke with.  I just can't say it outloud that many times right now.
I don't know how we are going to make it thru, but I know that my friends and family are amazing and I know that they will drag me kicking and screaming thru this.
Feel free to text, call, email, drop by, or whatnot.  We know that we need the support of everyone around us.
I just don't know if I can do this.

I will get more updates up on Sunday.

Wednesday, October 3, 2012

Quick Check In

I apologize for missing Mito week.  Eli ended up with 14 appts, 6 therapies, I made 36 phone calls, signed for 5 deliveries, gave 336 medications, 14 shots, 2 lab draws, 2 dressing changes, 34 breathing treatments, and more medical care than I can even begin to list. 

Last week Eli was admitted to the hospital for 24 hrs.  His lab work has been a mess.  We ended up needing to change his IV fluids.  He is now on D5 NS so that he is always getting glucose and salt.  It seems to be helping give some more consistency to his sugars.  We are still waiting for them to get his Mickey GJ tube ordered so we can get that changed out as the valve is again broken and his body is again eating thru the silicone.  Also Eli's geneticist / Mito doctor is leaving the country.  This means more big changes on the horizon for Eli. 

Final news.  My doctor was finally able to get me into the neurologist this last week.  He ran an EMG on both arms.  He is unsure how I'm even able to use my right arm at all.  I told him I hardly am.  I have severe motor nerve, sensory nerve, and muscle damage in my right hand, arm, elbow, shoulder, and neck.  My left hand and arm and elbow only have some mild sensory nerve damage.  He said I definitely need surgery.  We also discussed my migraines.  He made some adjustments to my meds.  He is sending me for an MRI and is concerned about the severerity and frequency.  My vision is struggling and so is my hearing.  I can't remember the last time I didn't have a headache.  He is meeting with me next week to come up with a firm plan and get everything scheduled.  More info but right now I'm not ready to go into full detail. 

Please keep our family in your thoughts as we navigate continually uncharted waters.