Friday, February 4, 2011


So unfortunately the last couple days I've been ................. (you will have to pause the music at the bottom of the blog to here the video's on this post)

This is it ~ It says it ALL! Wednesday night it hit me and the emotions were just rolling on. The whole pity party, the ANGER, the sadness, the feeling of helplessness :( I'm not sure what the deal is, but I know what the triggers were/are. I don't have it all together all the time, I'm not perfect, and I don't know everything. I'm just a mom trying to do what is best for her children and herself, but the options are very difficult and unsettling. I had my cry, I picked myself up, brushed myself off, and now I'm ready to take what comes our way, but I can honestly's been a difficult road lately.
Danny was in an awesome mood all smiles and chatting up a storm, so you all know me....more video and pictures ~ Yeap TONS of them. You can't have enough in my opinion. Well as I'm videoing my Lil Man... in a good mood, not in pain, not repositioned, he out of the blue FLIPS OUT! GREAT :) ~ Ok let me explain that one. I think sometimes I feel as if my child LOVES to prove me wrong when I'm trying to tell the doctors he is having these "seizures" which are coming on more often, more intense and I'm not liking it. So I was "excited" to be able to catch it on film. He had the EEG with NO seizure on the what the heck is this?

I sent this video to his Pediatrician, Palliative Care doc, and Neurologist. To get their opinions.
I had an assumption in which I included in the email of what I thought it might be. Danny has already been diagnosis with DYSAUTONOMIA a couple of years ago so I was wondering if this is another phase of it. ~"Dysautonomia is a medical term utilized for a group of complex conditions that are caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of our bodies, including our cardiovascular system, gastrointestinal system, metabolic system and endocrine system. A malfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment. Dysautonomia conditions can range from mild to debilitating and, on rare occasions, can even be life threatening. Each dysautonomia case is unique and treatment must be individualized". Danny's symptoms so far are not able to stabilize his temps well, his lack of ability to urinate at times, not have a BM, his body flushing/blocthing/rash, B/P issues, GI shut down when put under, control is sodium levels. The Neurologist and Pediatrician both feel these "episodes" are indeed dysautonomia attacks, FIGHT OR FLIGHT. Also with all the other issues we've been seeing the last year I can say the light bulb has unfortunately turned on. Ever since Danny got so severely sick in '09 which required a 70 day stay in the hospital and the trache he has never been the same. So the theory is regressive dysautonomia. I don't have to tell you that doesn't sound good :( You know something is up when Dr K calls me at 7pm and the first words out of his mouth are "Don't freak out".......UM, NOW you have my attention. I was at a restaurant when he called so I'm sure to all I looked like a deer in the headlights. It didn't help that Danny was NOT doing well being "OUT". He was coughed up a storm and crying....he's been doing this alot when we take him out. Once we put him in the van BOOM he is a Prince and himself........another symptom of this dysautonomia rearing it's ugly head (anxiety). Once I/we (his "girls") started to put ALL the pieces together it was like someone hit a switch. Which is good, but terrible at the same time. To know his own body is "freaking" out or "shutting" down just because and not knowing if it will reset itself..... is very difficult to swallow. SO once again I sat and cried my heart out. It just HURTS. Saying I'm sorry to my sweet lil boy will NOT make him OK, he will NEVER be "OK". If only I could turn back the clock and be able to save my son....make him safe. Now comes the gut wrenching decisions on how, what, and if to treat this horrible disorder. No stress levels are NOT high!
Danny is my HERO and my Strength as long as he continues to FIGHT I will continue to FIGHT for HIM.
Look at this smile and hear his voice ..... Tell me he doesn't make you just melt.

On another sad note ~ Danny's PT whom Danny has had since day 1 with the school system. Is moving on to Big n Better things. We will MISS you PT Dan !! Here is the collage page I did for PT Dan's memory book :)Danny with PT in the hot tub doing Warm water therapy. They BOTH enjoy hot tub time.Want to stress out my Dad.........Look what my Mom did?
Don't worry it's just a sticker :)
For me......I'm just waiting for the stress to drive my dysautonomia (MS) out of whack. I've been trying to be not stressed out, but come one.......Really? Can I do that now? I've been calling everyday now for 4 days to see what the hell is going on with starting my new med treatment. I've been approved, my blood work is done, the port is in, and still not answers! Grrrrrrrrrrrrrrrrrr
Sorry for just downer kind of post but this is our life right now. Got a love it, NEVER EVER and dull moment. Thanks for the kind words and support!


Ann said...

Hugs to both you and Danny. You have a lot on your plate all the time and I'm sorry you can't seem to catch a break. Hang in there.


Susan said...

Lori, Jackie has the exact same symptoms when she has a seizure. Her arms fly out, her face gets all ready and blotchy, her breathing gets funny, her eyes fixate to the left and sometimes when the seizure is really bad her legs will jerk and she will yell. After the seizure is over, she coughs a lot and can get a rash all over her chest and neck. She used to throw up too until she had her fundo done last June. Poor Danny, Jackie feels his pain and I can totally understand your frustration. I always feel so helpless watching her go through one of these.