Big Girls Now

I blinked and September slipped by. I spent four days a week attending Elin's preschool with her and enjoyed every minute of it. I have had so much fun getting to know her classmates and teachers- it has been a surprising benefit to "have" to attend school with her. It took longer then expected to get all of her emergency meds and action plans in place so what was supposed to be a short few week thing turned into a month and half but it was worth the wait. Today I dropped her off for the first time and fought back tears as I drove out of the parking lot.

Starting school has been such an easy transition for Elin. She breaks into a smile every time we enter the building and lights up around her peers. Her para educator is amazing and I couldn't be happier with the person they chose for her. It is a wondrous thing to see the way adults and kids are drawn to Elin; she radiates joy and happiness and those around her just want to be part of it. I can't express how lucky I feel to have a place like Meadow Crest to help Elin blossom. She is already making huge strides physically, socially, and cognitively. I can see a major change in her during this short time. I'm awed by her ability to mesh into this new lifestyle so seamlessly- she is such an amazing little girl.

Anya is also flourishing. She has a fantastic, fun Kindergarten teacher and has made many friends already.  She rides the bus to and from school and is starting to actually eat some of her lunch now...... On the first day of school she told me, "Mom, they give us 0 minutes for lunch." She is social and eating is secondary, so the "grumpies" sometimes come out at home but once I stick some food in the girl she brightens right up.

I am a volunteer coach for Anya's soccer team and have been having a blast with the 6 year old girls. We practice once a week and have games on Saturdays but focus on having fun with some soccer on the side. It seems to be working well for everyone! The girls named themselves the "Blue Crystal Diamonds"- Did I mention it's a Bellevue team? :)


As far as medical stuff for Elin- we have restarted her on the Onfi and it seems to be going well this time- no swollen eyes. It has affected her sleep and she gets a little manic some nights from 2am-5am but it's not every night. Still- that's a long time to be up in the middle of the night. Myles and I have some nice dark circles under our eyes to prove it. She has continued to have cluster seizures every 2-3 weeks though and we are hoping this new medication can reduce or eliminate these events.

She had her PET brain scan last month. She was actually having seizures the day of the scan so the results are a little skewed but they think they got a good enough read out. The results confirmed the area of her brain where they think the seizures are happening. The hardest part of the whole day was the IV. They spent over and hour and half trying to get a good IV line in her so we could sedate her. They had 5 different nurses and anesthesiologists try to get a decent vein. It was heart breaking to watch them poke her over and over and over again. 10 times in total until finally they were able to get a good line in. I was in tears and sick to my stomach. This is the kind of stuff I absolutely HATE about having her in the hospital for any type of procedure. She becomes a pin cushion and I just have to sit by and watch in horror as it happens. Like I've said again and again, she is fighter and a courageous soul.

Next up is a neuro-psychological exam and then an MRI. We have received confirmation that they will have to remove her magnet in her CI to get a clear MRI. So this means surgery...... again. I'm still not sure about all the details but I know we will be in the hospital for at least a few days. I really wish it could be easier but for some reason nothing with this
process has been easy. Eyes ahead and off we go- into the wild blue yonder...... yada yada yada........