I refuse to allow myself to 'Google' my child. I will not set foot in the deep, darkness that WebMD would tell me is wrong with my baby. There is no point. But one thing that I cannot shake, at all, are the words that keep repeating in my head when the Neurologist read off yesterday, "Mitochondrial Disease". The only reason this stick to me is because I see this label SOO often with other children that also have Eosinophiliic Gastrointestinal Diseases, specifically Eosinophilic Esophagitis. The more often I see children with both these combinations, it's starting to haunt me, maybe this is what we are dealing with. 

I have read two articles. TWO. That's it. You can research as much as you would like, please don't share anything scary with me. But I don't want to read anymore. This is the one thing I read: 
http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7934627/k.3711/What_is_Mitochondrial_Disease.htm

The things that jump out at me are: 

• Muscle Weakness and Pain, check and check - she's already been diagnosed with 'Low Muscle Tone' in various areas of her body, mostly her face. 
• Gastro-Intestinal Disorder, check - EGID.. GERD.. you name it, we have a confirmed diagnosis. 
• Swallowing difficulties, check - EoE. 
• Respiratory Complications, check - Asthma and she also gets RSV every year. 
• Developmental Delays, check - Her speech is at a 10 month old's level - we see a OT and ST every other week for these delays. 
• Susceptibility to infection, check - Auto-Immune Disease. 
• Fatigue - I feel like this is my baby each day lately. Some days/hours she doesn't want to get up, she only wants to lay down, usually on top of someone. And then other days she is full of energy and tries to play until she crashes. I think the fevers have a lot of play with that though.. but it's a separate thought if another doctor mentions Mito again.

I am in no way attempting to diagnose my child via the internet - but I would be lying if I said several of these things are not jumping out at me. It's makes it even more difficult to look past the other children that are suffering with Eosinophilic Esophagitis, also have this combination with Mito. 

The one super rockstar I enjoy following with EoE is Samantha, she is amazing and I love watching her journey unfold. I hope Annabelle can grow to be as strong and fearless as Samantha is. She also suffers from Mitochrondial Disease, and this short little video she made for awareness, explains a little about what it means.

Something else that I noticed this morning as Annabelle was laying on me in only a diaper. Her skin has suddenly begun to develop bumps.. I can't quite tell if it's a huge eczema flare, an allergic reaction to getting exposed to something, or what it is. It's covered her chest, arms, heavy around her neck and all over her forehead. I couldn't seem to find it in the usual eczema hiding places (behind her knees, on her legs, in the crease of her elbows) it's only on her chest and the front of her body. There is a little of the rash around the back of her neck and top of her back, but not nearly as thick and noticeable as it is in the front. Im certain this wasn't here a couple nights ago when I was giving her a bath, I would have noticed it then. I'll keep noting it and see if it spreads. I can't recall anything she's been exposed to beside at the hospital yesterday, that was the first time she's been out of the house. It's odd. 

Also this morning, she repeated the episodes of shaking. I went upstairs to check on her during her nap and her whole body was trembling in her sleep.. her temperature is 98.5 so I know she isn't cold, she's just shaking. A couple minutes later it slowed down and stopped. She hasn't had cold sweats in a couple days, and she doesn't seem clammy. I probably need to start taking her temp constantly to see if these tremors are because her temperature is fluctuating fast, or if it's just happening out of the blue even when her temperature is staying the same. 

Currently. I'm spending my morning re-organizing paperwork, FLOODS of paperwork and bills that are piling up from hospitals and visits. I usually stay very organized, but the last week has had me pulling random reports from my book for random doctors and last minute faxes, I need to pull everything back together today.

Im also trying to reconfigure our organization for all Annabelle's medications and formula's. My castle, that we call home, is getting smaller and smaller by the minute it seems! :)


Here's my poor, poor sad living room this morning. Must add more coffee.