EEG Results...

I know I didn't post right after she did the EEG but I needed a break from thinking about things, even though that didn't happen. In fact the opposite did and I've spoke with McDr no less than 4 times this week!

The EEG went well, in fact Alana did fantastic. She only had one episode of tears and hell, who wouldn't want to cry when it feels like your face is being licked off by an angry kitten! She did not like it when the tech. was cleaning her skin to attach the electrodes and with her "sensitivities" to things touching her skin I was so proud of her that she held out that long. Once things were underway and the tech. told her she could go to sleep she did and she did it with a quickness! I secretly was jealous that she was so willing to listen to the tech. when it takes me bribing her with my ear (she has rubbed my ear since her first hospital stay as a small toddler for comfort) to get her to sleep or she cries herself to sleep!

Once she was asleep they let her sleep for about 40 minutes then woke her up for the strobe light portion of the test. After that, it was only around 10 minutes, they did the part where she had to blow on a pinwheel for 2-3 minutes straight with big, deep breaths. This was by far the hardest thing for her to do. She was only able to do it for 10-15 seconds before she was gasping and trying to re-group. During this time she had one of these blank stares that she's been doing, it was similar but not at the same time. The tech was standing there by this point trying to get her to blow on the pinwheel and noted it but felt it was due more to the fact that she was struggling with her lungs and not her brain. Anyway--once that part was over we got to head home and she slept for the rest of the day, well into the evening hours when I woke her up for eat some dinner.

The results came in yesterday mid-morning and it showed little and a lot. McDr started it off with "essentially normal". So basically first they were not able to elicit the episodes of absence, or staring spell. This does not mean that she isn't having them, it just means she wasn't having one then. What it did show was an "abnormal response" to the strobe light portion of the test. Now I don't know what that means exactly, McDr was just reading the report from the neurologist to me. She did say he would clarify all this to us on her appointment with him...September 10th. She at least told me that he didn't feel it was a "big seizure", just an abnormality and the neurologist noted this abnormality consistent with mitochondrial disease. What's odd was she was the most relaxed while awake for that part of the test. She was fully awake, had her eyes closed, and was just at ease. Go figure. Alana is nothing if untypical right!

Right now we are just in the fun loving holding pattern. Results are starting to come in from Seattle and once the whole shebang is in I will break those down best I can and share them.

School starts here for the 2 rocking ladies on Wednesday (sad and happy at the same time!) and this week I will be meeting with the school team to go over Alana's needs and requirements. On Monday we find out who her teacher is going to be but I am confidant that it's all going to be alright. We did get some wonderful, wonderful, news though! Our DME finally (okay I told them we were leaving them to go with another company that would get us these) agreed to purchase the super small tanks for Alana!! They are the size of a water bottle and weigh in at only 2.2 lbs and 3 inches in diameter & will last on a conserver device for 3.5 hours! Wayyy better than the 10 lbs she drags in her ladybug! She will still need a rolling case for them because it's still a lot for a peanut to carry all day but it will make it so she can participate as often as she's able in recess and such!

I can't believe I am going to have an 8th grader, a 4th grader and a Kindergartener! it makes me so proud, sad, joyful, teary, and old feeling all at the same time! All 3 of the girls have come such a long way and I pray for the strength to keep all of us heading foward through this.

PS: We went to grandma's and grandpa's for some more downtime. If only we all could live in a place where the only sound is that of the water.

Back to school haircut