Sobering

I have been in the throes of medical records again.  When you see a new doctor, they always want to know what has been done in the past, what meds, what tests, etc. etc.  Digging through the last 6 years has been sobering.  What Cole's body has been through, the meds that he has tried, the hospital admissions...it really is too much for anyone that hasn't even entered Kindergarten.  However, I look back and see how strong we are.  We should have had at least two nervous breakdowns by now!!! :)

So, for the future and to be able to access it quick via the nice, old friend the Internet-I present a history of the treatments tried for my son:

Anti-Epileptic Medications (including atypical treatments)
Phenobarbitol
Versed-rescue (Buccal and Intranasal)
Ativan-rescue
Propofol-rescue
Keppra
Diastat-rescue (rectal suppository and tablet)
Ketogenic Diet
Klonopin-rescue and daily
Depakote
Topamax
Low Glycemic Index Diet
Potassium Bromide
Rocephin
N-Acetyl Cyestine
Clobazam
Verapamil
Prednisone
Diazepam tablet-daily
Phenobarbitol-rescue and daily
Zonegran
Ativan
Stiripentol
*Note:  Some medications are listed twice.  This is due to a reintroduction after many years of discontinued use.  Rescue meds, used as needed, are also listed.

Adjunct Medications
Acetaminophen
IB Proufen
Amoxicillin
Potassium Phosphate
Carnatine
Magnesium
Calcium
Centrum Multi-vitamin
Nano VM Multi-vitamin
Vitamin D
Mirilax
Cefdinir
Sennakot
Lactulose
Metamucil
Multivitamin Supplement (Carnation Instant Breakfast)
Magnesium Citrate

Treatments and Equipment
Oxygen
Pulse Oximeter
FL-41 Lenses
g-tube
Feeding Pump-IV pole, Feeding Bags, Syringes
SPIO-Stabilizing Pressure Input Orthosis
Therapy Swing
Helmet
Cooling vest
Wheelchair
Enemas
Seizure Alert Service Dog (he really is listed as Durable Medical Equipment in the law)
Suction Machine
iPad
All equipment required to administer medication-pill crusher, syringes, g tube extension, etc.

Additional Therapies and Treatments
Homeopathy
Neurofeedback
Speech Therapy (also including feeding therapy)
Occupational Therapy
Physical Therapy
Aquatic Therapy
Anat Baniel Method Therapy
Craniosacral Therapy
Sensory Integration Therapy
Behavioral Therapy

Specialists
Neurology-6 different ones
Epileptology
Genetics
Dietician
Opthamology
Gastroenterology
Anesthesiology
Surgery
Cardiology
Orthopaedist
Podiatry
Orthotics
Neuropsychology
Nephrology
Endocrinology
Developmental Pediatrician
G-Tube Nurse Practicioner
Bone Health Specialist (Ortho)
Pulmonology
Pediatric Dentist
Behaviorist

Hospitals
PCMC
IMC
CNMC
MCH
IFX
CCHMC
SCH

I was getting my hair done the other day and I spent the entire time I was "processing" on the phone making doctor's appointments.  My friend asked me if I felt like we lived at the doctor.  I had to be honest and say, "Yes".  Looking at it all listed out is a little overwhelming.  I am positive that I have missed something (probably more than just one something).  No wonder we are tired!  All I know is Cole is worth it.  We will keep fighting.

Dropped Off

Hey Friends-
Sorry it seems like we have dropped off of planet earth.

Our little world has been chaotic, to say the least, these last few months.

The extreme Reader's Digest version:
* Make A Wish was awesome.  Cole struggled.  We had fun in between the seizures and took over 400 pictures
* Cole has been in ICU 3 times and was almost taken via air ambulance to Miami
* I can't count how many times we have changed and tweaked meds
* Normal tonic clonic count right now is around 15 to 20 daily.  Mostly at night.  Never thought that could be normal
*We drove to Florida and stayed inpatient for 6 days.  Had to detox Cole and have some tough decisions ahead
* I don't have lupus!  YAY!  I do have fibromyalgia, and possibly osteo arthritis.  I've tried a few things and think that maybe I found something to help with the pain
* We are taking Cole to Seattle for a week to have an in depth Mitochondrial study done
* Brian and I got to go to Hawaii for a week with my parents and siblings; something that has been planned for 6 months.  By the skin of our teeth and with the help of 7 nurses, two good friends and a pack of teenage boys (our friend's sons), Cole was taken care of.  Sometimes we had a ratio of 3 adults to 1 kid, but it happened and we are grateful!  I have missed my Hawaii home so much
* We don't sleep.  At least for more than 2 or 3 hours at a time
* Showering has become totally optional
* Our finances are more than a little strapped
* Slugger is still awesome
* If you are our friends "In Real Life" we are so sorry that we are neglecting you
* We are glad that we didn't switch jobs last month.  Brian's co-workers have been awesome about our crazy schedule
* I have over 300 e-mails in my inbox
* We got "fired" from therapy because Cole has not been attending over 80% of his sessions (due to seizures, mind you).  I am not sure I have the strength to pull out Tiger Mama and fight this one
* I don't watch TV any more
* I gained 7 pounds in Hawaii and it was totally worth it!
* ESY Summer school started today and I am really pumped about his IEP and the goals for the next year
* It is very hot and humid around here.  Or it is pouring rain
* Cole has a new kiddie accordion and it is hilarious to watch him play it
* Had a Neuropysch eval and found that Cole is still severely delayed in a lot of areas, but has made awesome progress in others
* We are grateful for insurance

There are a lot of Grand Canyon sized gaps in there.  All in all, we are tired, we are stressed, we are still married, we are still happy and trying to find the good in every day.  We live minute to minute and that means things like dishes, blogging and changing our clothes don't happen on a regularly scheduled basis.  Our lawn looks like a jungle, our hair is unkempt, but we are trying to do what is best for our boy.  Sometimes that means just sitting back and letting go of the things that you thought were important and realizing that they really weren't that important at all.  Or maybe I am just trying to make myself feel better about not vacuuming? :)

Peace and Blessings, Friends!  One of these days I will jump back on the bandwagon.