Ambulatory EEG time

Today was mostly a wonderful day. Izzy was to get hooked up for an ambulatory EEG in Portland today. We made a day of it. 

Gluten free bakery 

Children's Museum

Shopping

Vegan lunch

Izabelle was focused from the time she woke up: 

She had even planned on drawing the night before AND remembered at 7am when she rose.

We indulged in Gluten Free goodness but I wish we could have had a less refined sugar option. 

She rock climbed :)

Learned about caterpillars and metamorphosis!

After lunch it was time for EEG hook up number ?

Izabelle was a pro as usual! She's sleeping like a babe now and we are off to Portland again tomorrow for the unhook. New seizure med trial to start Thursday. Wish us luck!

Like magic!

Izabelle started a stimulant today geared towards ADHD. I still believe that the attention deficit is a side effect of both meds and seizure activity. I was hesitant to try this type of intervention but I reached my maximum capacity weeks ago. She has not been able to focus at home or at school for a long time. Basic self care takes ages if she actually is able to follow through. I saw almost immediate change today. I can't wait to see how she does in school next week! 

Waiting game...

The definition of my life has changed... It used to be all about MY goals and ambitions... Now it's mostly advocating and fighting for my daughter to live a normal life so she can reach her goals and ambitions... I've been doing all the right things... 

We are waiting for nursing services. I'm going through two companies now.

Setting up a date for a neuropsych eval ASAP.

Ambulatory EEG during vacation week.

New med trials next week. Including a stimulant to see if we can refocus her. I sure hope we aren't trying to medicate side effects.

Pushing for yet another IEP at the new school. 

Still working half days to give her more rest because seizure counts are still so high.

Crossing my fingers that the ketogenic diet works in May.

Just waiting for everything to fall together. 

Come on universe! Do your work!

Cuddles in between a flurry of seizures. She's sleeping in my arms now.

Change is good :)

All the abrupt changes hit me hard last week but after much reflection and hard work they have become exciting opportunities to our day to day life. Tomorrow Izabelle and I will visit Jefferson school again. I will meet with the school nurse and special education teacher to develop Izabelle's Seizure Action Plan. On Wednesday Izabelle will attend her new school. 

Other great news:

We found out last Friday that Izabelle is eligible for in home nursing support. Now we are just waiting for someone to be hired. 

We are fostering a rescued six month old puppy named Bailey. This is a baby step towards having a seizure alert dog someday.

We don't have to start a new medication trial until next Tuesday which is just after Izabelle's birthday. 

We can actually breathe. Sigh.