Annabelle almost earned an ambulance ride

The last couple days, Annabelle has been very clingy and whiny and so has Madelynne. I feel like I constantly have leeches dragging down on my legs and pulling my clothes. These particular leeches moan the worst sound.. it sounds a lot like, "Moooooooooooommmaaaaaaaaa" .. or something like, "IIIIII neeeeeeeddd a cuuuuuuuuupppppppppp" Annabelle, we all get why she isn’t feeling well. But poor Mady has been complaining about her ear hurting her. Specifically her right ear. She isn’t running a fever or appearing to be in terrible pain, so I am having a hard time analyzing whether or not she’s hurting or if she’s just testing me to see if I will run her to the doctor like I always do for Annabelle. I think she’s getting jealous over Annabelle getting to see a doctor all the time and she can’t. The kid is a freak, she loves the doctor’s office.

So this morning Annabelle was in a good mood. She was pretty monotone but quite clingy as usual. She slept well enough last night but she just wasn’t quite awake yet, even by the time I left for work. A little before lunchtime I asked the sitter to take her temperature periodically and keep me updated. She informed me that Annabelle wasn’t acting herself and seemed to be acting very odd.
Her temperature was around 99, the time was 10:49am.
11:12am – 97.1
11:18am – 94/95
She called me worried and said Annabelle still wasn’t responding well and not acting normal at all. I immediately told her to call 911 and make sure they take her to MCV, I will meet them there. In the back of my mind, I kept praying the temperature would go back up.. I do NOT want to lose our appointment tomorrow for the EEG! We decided to attempt to warm her up and give it 5 minutes tops and then we would move. I was at lunch/work and helpless. It’s such a hard position to be in, not knowing exactly when to jump!
11:38am – 96.2
12:00pm – 97

Once everything was settled and we both felt like the temperature was under control and not moving any longer, I called the pediatrician. The initial plan has been for me to take Belle to their office so they can watch her and take notes on her behavior / temperatures, etc. Dr. Young and I discussed several things over the phone and made the decision to bring Belle in now for observation and spend the afternoon playing. Oh joy.

Highlights of our conversation:
Tomorrow’s EEG will point us in one of two directions.
If the test comes back negative and completely clear, we will continue with scheduling to see Dr. Teasley to explore Mitochondrial Disease.
If the EEG comes back positive for anything, indications for seizure disorders or brain waves indicating any issues, then we will move back to Dr. Seinfeld that we met a couple weeks ago that I didn’t like. (I will not settle with her. I will find someone else.. likely at CHKD instead.)
Both those doctors are Neurologist. Teasley specialized in Mito. Seinfeld specializes in seizures.

Tomorrow will be a big day. In many ways I wish all this testing could have ended last week after the Brain MRI and we had found something there to explain all this madness.. when it was clear and negative, we have to keep moving forward. With each test and avenue we move down, we are looking for anything and everything to provide us with answers that do not indicate Mitochondrial Disease. With each negative test – it point us even closer to Mito. With that being said, tomorrow’s EEG will be our last opportunity to find an explanation before exploring Mitochondrial Disease. I am sadly crossing my fingers and toes that we find issues during the EEG. I want all this to stop. I do not want a doctor to say the words, “Your daughter has Mitochondrial Disease, it’s already targeted and damaged her Immune System, GI System and Nervous System.. I’m sorry”. I don’t want to hear those words. I am accepting any other forms of news besides that – I am praying hard for an answer soon.