Hopefully everyone will be able to keep up with our adventures with this blog. We love and miss you all!
Monday, October 2, 2017
Rollerskating Fun
Brielle is into rollerskating lately. It's her new thing and we have been letting her express herself and go to lessons to learn "tricks." Ash enjoys it too and the following is some pictures I took the last couple of times.
Saturday, September 30, 2017
Long Week
The nurse had a perfect description for it. She described it as a plane trip you can't get off of without the cramped seating and crowd. I agree.
This week Ash had a five-day in hospital eeg. She has been having seizures for the last year that have not gone away when we increased her dose. They aren't bad and they don't affect much but they won't stop. At this point, that means she has failed four medications and the doc said she has has a small chance of finding success on any medication. So he wanted to explore the option for surgery and Ash wanted to as well. The first step on this journey was to catch the seizures with an eeg and camera so they could see if there was a focal point to address, hence the five-day stay.
I don't know how you balance these these challenges in life. I think it's more of a plan and brace type of situation. Hoss took days and I worked during the day and took the nights. Brielle went to school, spent dinner with sister and got dad all to herself at night. Ash patiently endured it the whole time. She had a 40 foot radius in her epilepsy pod and spent the time watching TV, playing her bass, crafting with her sister and doing the homework they assigned.
They took her completely off her meds and saw all the brain activity they needed in a controlled environment. Her emergency med chart terrified me and even included atropine and the heart paddle dosages, but they never had to use even an emergency dose of epilepsy meds. Now that it is over we have more tests and then all the specialists will sit around and come up with a recommendation. For now though, it is over and we are all relieved to be done.
Last night, for Friday movie night (our family tradition), we went to the base theater and sat through Guardians of the Galaxy 1 and 2. Bri and I were bored out of our minds and slept through most of the second movie, but Ash and Hoss were in heaven. I was just thankful for the normalcy of the whole thing. It was a long week, but we have so much to be thankful for; Everything went smoothly in the end and everyone came out of the week unscathed. It was more than I hoped for. Life is good.
This week Ash had a five-day in hospital eeg. She has been having seizures for the last year that have not gone away when we increased her dose. They aren't bad and they don't affect much but they won't stop. At this point, that means she has failed four medications and the doc said she has has a small chance of finding success on any medication. So he wanted to explore the option for surgery and Ash wanted to as well. The first step on this journey was to catch the seizures with an eeg and camera so they could see if there was a focal point to address, hence the five-day stay.
I don't know how you balance these these challenges in life. I think it's more of a plan and brace type of situation. Hoss took days and I worked during the day and took the nights. Brielle went to school, spent dinner with sister and got dad all to herself at night. Ash patiently endured it the whole time. She had a 40 foot radius in her epilepsy pod and spent the time watching TV, playing her bass, crafting with her sister and doing the homework they assigned.
They took her completely off her meds and saw all the brain activity they needed in a controlled environment. Her emergency med chart terrified me and even included atropine and the heart paddle dosages, but they never had to use even an emergency dose of epilepsy meds. Now that it is over we have more tests and then all the specialists will sit around and come up with a recommendation. For now though, it is over and we are all relieved to be done.
Last night, for Friday movie night (our family tradition), we went to the base theater and sat through Guardians of the Galaxy 1 and 2. Bri and I were bored out of our minds and slept through most of the second movie, but Ash and Hoss were in heaven. I was just thankful for the normalcy of the whole thing. It was a long week, but we have so much to be thankful for; Everything went smoothly in the end and everyone came out of the week unscathed. It was more than I hoped for. Life is good.
Crafting with sister
I love this picture!!!!
Bri got lots of puppy snuggles to make her feel better when she was worried about sister.
Friday was mismatch day at school. Bri went all out;)
Sunday, September 24, 2017
Fresh (re)Start
Hello World! It's been a while!
There are so many reasons I quit blogging and so many reasons to start again. So I will and hope that it creates a space for those far away and those nearby to feel close to me.
I have no way to write a few years into this posting. I can say it continues to be a whirlwind and we are blessed to be with those we love and cherish whenever and wherever we can. The girls grow in mind and stature everyday and I feel so grateful to be a part of their existence. They bring me joy every second and I hope my constant adoration for their uniqueness and the vivacious way they embrace life never drives them away. I am their biggest fan.
This Summer we were so fortunate to be able to take a trip to DisneyWorld. It was a wonderful experience and I am happy that our lives afford these luxuries. I do not take our ability to go on trips for granted. It makes the long days at work and the time away from my family (while they are at school) that much easier to bear.
Ash is in 7th grade and Bri is in 5th this year. I can't believe they are getting so old. It terrifies me to watch them grow and be exposed to all of the bad things in this world. I want to go off the grid and raise them in a natural state where the pollution of human nature cannot create the toxicity that marks our journey from childhood to youth.
At any rate, every journey starts with a single step. This is mine and I will attempt to keep going on this path. TTFN.
There are so many reasons I quit blogging and so many reasons to start again. So I will and hope that it creates a space for those far away and those nearby to feel close to me.
I have no way to write a few years into this posting. I can say it continues to be a whirlwind and we are blessed to be with those we love and cherish whenever and wherever we can. The girls grow in mind and stature everyday and I feel so grateful to be a part of their existence. They bring me joy every second and I hope my constant adoration for their uniqueness and the vivacious way they embrace life never drives them away. I am their biggest fan.
This Summer we were so fortunate to be able to take a trip to DisneyWorld. It was a wonderful experience and I am happy that our lives afford these luxuries. I do not take our ability to go on trips for granted. It makes the long days at work and the time away from my family (while they are at school) that much easier to bear.
Ash is in 7th grade and Bri is in 5th this year. I can't believe they are getting so old. It terrifies me to watch them grow and be exposed to all of the bad things in this world. I want to go off the grid and raise them in a natural state where the pollution of human nature cannot create the toxicity that marks our journey from childhood to youth.
At any rate, every journey starts with a single step. This is mine and I will attempt to keep going on this path. TTFN.
I love this pic because of the troller in the background!
Bri was so excited to meet Olaf. He was the only one she wanted to see.
These next couple are from a nephew's Eagle Scout cermony...
I love my puppies!!!!!
Twinsies!
Waiting for a night show
Park 3 of 4...DisneyWorld is huge!
Last Day!
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