What the Hell, Epilepsy! Make up your good-for-nothing-piece-of-garbage mind already. A Grand Mal ... AWAKE?!? Seriously? God damn it. Damn it, damn it, damnit. Never has that happened. Never. Not even at his absolute 50+ seizures a day worst. Not ever.
Until now.
Screw you Epilepsy. Screw you.
Monday, June 4, 2012
Sunday, June 3, 2012
Time to play some catch up (Part 1)
My apologies for my long stretch of silence. Things popped up, our family got busy, and at points, life got interrupted. I'll do my very best to fill in the blanks but, thanks to my mommy-brain, some things will surely be forgotten.
James is still going strong on the Ketogenic Diet. We've fallen into it, dare I say, easily now. It took a bit of getting used to but, now it's all that we know. His seizures, thanks to the diet, were controlled beautifully from December until early March. Starting the first week of March, these strange cluster seizures appeared. I can't be sure if he was having them sooner than March because they didn't trigger any alarms and I wasn't looking for them. I really think we caught them when they first started because once they were here, they were here daily and then very quickly multiple times a day.
The "new" seizures are still tonic-clonic in nature but are nowhere near the "old" seizures on the scary, life threatening scale. The old ones, which still appear once every 7 -14 days, can drop his oxygen rate into the 30's immediately, but the new ones barely drop into the 80's at all. The new ones are scary in their silence. No significant change in vital signs means no alarms. No alarms, no bells and whistles means it can go unnoticed. Now, we can no longer put him down for a nap and feel that false comfort provided by him being hooked up to his pulse-ox. Now, we have to put him to sleep on the rug of the room we're in or, quite literally, walk into his room every minute or two of his nap. Boy, does that slow down the productivity of the house. No more showers during nap time. No vacuuming during nap. No laundry, weeding the garden, playing outdoors with Liv, or making the beds during nap time. Cooking? Well, that's now a long production as well. The only thing that has benefitted from this is my cardio workout. Lots of sit, stand, walk, stand, sit. Repeat. I should have great legs this bikini season. Silver lining I suppose? As they sing in The Life of Brian, "Always look on the bright side of life ...(whistling)."
So, back to Mr. James. These new seizures suck, plain and simple. I thought we were on our way to seizure free or maybe 1-2 a month and then wham! Slapped in the face. There appeared to be no reason for the sudden onset. His diet remained the same. His ketones were moderate to large, perfect for his diet. He was sleeping great, well, until it was interrupted by this unexpected arrival of seizures. No rash. No fever. No fussiness. Everything seemed normal (I do a little silly laugh every time I refer to our life as "normal").
The clusters continued for about a week and then James stopped eating. Then, a day or two later, he stopped drinking. No eating or drinking means no seizure meds getting in. The next day he just slept. Then his O2 sats started to drop.Then, we were admitted to Floating.
Upon our arrival to the ER, they started an IV (regular saline only. No Dextrose - diet rules, ya know), checked vital signs, and took a chest x-ray. The doctor came into our room and said "James has pneumonia." To which Mike and I responded with "Phew! It's just pneumonia." I think that doctor thought we were nuts. How many parents say "Just pneumonia"? In our minds though, pneumonia is an answer. And it's an answer with a cure! It was also an answer for his new seizures. Hooray pneumonia!??!?
James was admitted to the pediatric floor and started on some antibiotics. Unfortunately, this plan changed the next morning. The pneumonia and the cluster seizures were working against each other and poor James was stuck in a Catch 22. The pneumonia caused more seizures. The seizures required emergency medicine such as Diazepam or Ativan to break them. The emergency meds sedated him which decreased his lung function. Decreased lung function caused atelectasis, his lungs to stick together. And THAT landed us in the ICU and James on a C-Pap machine.
So much for "just" pneumonia, right?
The C-Pap, loads of antibiotics, and steroids did the trick and fixed that pneumonia AND the seizures! We moved from the ICU back to the pedi floor and, by the end of that week, we were home. James had a few days remaining of his antibiotics so we wrapped those up and boy was he looking good!
Breathing great and seizure free.
Beautiful.
3 days.
3 quiet days and then they were back...
James is still going strong on the Ketogenic Diet. We've fallen into it, dare I say, easily now. It took a bit of getting used to but, now it's all that we know. His seizures, thanks to the diet, were controlled beautifully from December until early March. Starting the first week of March, these strange cluster seizures appeared. I can't be sure if he was having them sooner than March because they didn't trigger any alarms and I wasn't looking for them. I really think we caught them when they first started because once they were here, they were here daily and then very quickly multiple times a day.
The "new" seizures are still tonic-clonic in nature but are nowhere near the "old" seizures on the scary, life threatening scale. The old ones, which still appear once every 7 -14 days, can drop his oxygen rate into the 30's immediately, but the new ones barely drop into the 80's at all. The new ones are scary in their silence. No significant change in vital signs means no alarms. No alarms, no bells and whistles means it can go unnoticed. Now, we can no longer put him down for a nap and feel that false comfort provided by him being hooked up to his pulse-ox. Now, we have to put him to sleep on the rug of the room we're in or, quite literally, walk into his room every minute or two of his nap. Boy, does that slow down the productivity of the house. No more showers during nap time. No vacuuming during nap. No laundry, weeding the garden, playing outdoors with Liv, or making the beds during nap time. Cooking? Well, that's now a long production as well. The only thing that has benefitted from this is my cardio workout. Lots of sit, stand, walk, stand, sit. Repeat. I should have great legs this bikini season. Silver lining I suppose? As they sing in The Life of Brian, "Always look on the bright side of life ...(whistling)."
So, back to Mr. James. These new seizures suck, plain and simple. I thought we were on our way to seizure free or maybe 1-2 a month and then wham! Slapped in the face. There appeared to be no reason for the sudden onset. His diet remained the same. His ketones were moderate to large, perfect for his diet. He was sleeping great, well, until it was interrupted by this unexpected arrival of seizures. No rash. No fever. No fussiness. Everything seemed normal (I do a little silly laugh every time I refer to our life as "normal").
The clusters continued for about a week and then James stopped eating. Then, a day or two later, he stopped drinking. No eating or drinking means no seizure meds getting in. The next day he just slept. Then his O2 sats started to drop.Then, we were admitted to Floating.
Upon our arrival to the ER, they started an IV (regular saline only. No Dextrose - diet rules, ya know), checked vital signs, and took a chest x-ray. The doctor came into our room and said "James has pneumonia." To which Mike and I responded with "Phew! It's just pneumonia." I think that doctor thought we were nuts. How many parents say "Just pneumonia"? In our minds though, pneumonia is an answer. And it's an answer with a cure! It was also an answer for his new seizures. Hooray pneumonia!??!?
James was admitted to the pediatric floor and started on some antibiotics. Unfortunately, this plan changed the next morning. The pneumonia and the cluster seizures were working against each other and poor James was stuck in a Catch 22. The pneumonia caused more seizures. The seizures required emergency medicine such as Diazepam or Ativan to break them. The emergency meds sedated him which decreased his lung function. Decreased lung function caused atelectasis, his lungs to stick together. And THAT landed us in the ICU and James on a C-Pap machine.
So much for "just" pneumonia, right?
The C-Pap, loads of antibiotics, and steroids did the trick and fixed that pneumonia AND the seizures! We moved from the ICU back to the pedi floor and, by the end of that week, we were home. James had a few days remaining of his antibiotics so we wrapped those up and boy was he looking good!
Breathing great and seizure free.
Beautiful.
3 days.
3 quiet days and then they were back...
Thursday, April 12, 2012
Gemini
Smiling, laughing, happy, thrill...
running, pounding, time standing still.
Back to joy, playing, laugh ...
screaming in silence, torn in half.
Family, friends, love indeed...
jealous, bitter, intense need.
Thinking, learning, always trying...
tired, lifeless, in pillow crying.
Day and night, start and done...
Gemini please become one.
running, pounding, time standing still.
Back to joy, playing, laugh ...
screaming in silence, torn in half.
Family, friends, love indeed...
jealous, bitter, intense need.
Thinking, learning, always trying...
tired, lifeless, in pillow crying.
Day and night, start and done...
Gemini please become one.
Sunday, February 26, 2012
Mt. Vernon, Maine
Olivia and James have now added another notch in the "states we've visited" belt - Maine! What a perfect, and much needed getaway. My babies had so many firsts. Snowmobiling and ice fishing to name a couple. James had one more newbie than Liv. He chewed through his Dr. Brown's nipple and there wasn't exactly a store right around the corner. So, I'm proud to say, James is now ONLY drinking from his nosey cup! Another awesome step forward. :)
Another awesome first as a family ... our first vacation where we weren't interrupted by epilepsy. Not even once.
Another awesome first as a family ... our first vacation where we weren't interrupted by epilepsy. Not even once.
All bundled up and ready to go!
That right boot was nothing but trouble! Haha!
Maine air = 3+ hour naps!
Heading onto Moose Pond to do some ice fishing.
Wednesday, February 8, 2012
20 followers!
Wow!!!
20 followers?!? Amazing.
Thanks to each and every one of you for caring enough to watch my son grow. :)
Much love.
S.
20 followers?!? Amazing.
Thanks to each and every one of you for caring enough to watch my son grow. :)
Much love.
S.
Tuesday, February 7, 2012
James' first time out for a stroll!!
JAMES. IS. WALKING.
This video is unbelievable!
Three months ago my son could barely hold up his own head. Today, with help from his physical therapist, he walked down the hallway. There is so much I want to say but I am speechless. Today, I was told what I've believed in my heart all along. James is going to walk. My son will walk.
This video is unbelievable!
Three months ago my son could barely hold up his own head. Today, with help from his physical therapist, he walked down the hallway. There is so much I want to say but I am speechless. Today, I was told what I've believed in my heart all along. James is going to walk. My son will walk.
As a side note, he was working hard, pushing, struggling, and mad. If you have your volume cranked up you may want to turn it down before pressing play. Otherwise you'll be getting an ear full from Jamie-James.
Thursday, January 26, 2012
DIY powder laundry detergent
My life has changed drastically over the past two-and-a-half years. I went from a full time MRI tech and mom to just a stay at home mom. I winced when I typed the word "just". Being a full time mom to two young children, one with special needs, is not "just" something you do. It's a lot of work. Fortunately, it is totally worth every ounce of effort. Unfortunately, the pay is non-existent. Therefore, it's important to cut corners anywhere possible.
Switching from two full time incomes to one is no joke. We made many, many changes to our lifestyle. We traded in a car for a different one, we refinanced our house, we got Ooma and dropped Vonage, and *gasp* we got rid of cable. Oh the humanity! The looks on people's faces when I say I can't watch that show because I don't get that channel is hysterical. If you got rid of your television, I promise you, you'd survive to see another day. Yet, even with all these changes, things were still financially tight. Time to get creative with tightening up the ole purse strings. Previously, I'd posted about making your own baby wipes. Now it's time to talk laundry.
I'd found a laundry list (tee-hee!) of DIY liquid laundry detergents on Pinterest but nothing really for powder. I was more interested in powder since I have a rather small laundry room and don't have the capacity to store gallon jugs of detergent. So, I read through the other posts, found the common ingredients, tried out a few batches, made a few tweaks, and voila, I have a recipe I love. It works brilliantly for all of our laundry needs.
Ingredients:
1. Borax
2. Arm & Hammer Washing Soda (very different than baking soda)
3. Fels-Naptha Bar Soap
Step #1
Unwrap the bar of Fels-Naptha and grate it on the fine side of a cheese grater. Place a bowl underneath to catch the shavings.
Step #2
Once you're done grating the soap, measure out 1 cup of Washing Soda and add it into the bowl.
Step #3
Measure out 1 cup of Borax. If it has clumps make sure to break them up with a fork before adding it into the mix.
Step#4
Mix all 3 ingredients together.
Step #5
Transfer the mix into an airtight container for storage.
I measured it out and I will get 40 loads of laundry from this mix. I have a spoon that I leave on top of it to measure for each load. It's just a hair over a tablespoon of powder per load. If a particular load is very soiled, use more. A lighter load, use less. Use your own judgement.
I also did the math out for you (you're welcome.)
So...
At Walmart,
A box of Borax was about $3.00
A box of Washing Soda was also about $3.00
And a bar of Fels-Naptha was $1.00
We'll get 6.8 uses from the box of Washing Soda equalling $0.44/batch
We'll get 9.5 uses from the box of Borax equalling $0.31/batch
We'll get one use per bar of soap equalling $1.00/batch
1 batch = $1.75 divided by 40 uses = $0.04/load. Wowza!
At Walmart,
Tide liquid detergent is $12 for 52 loads equalling $0.23/load.
4 cents versus 23 cents may not seem like much but lets do the math for 52 loads, just one purchase of detergent. Tide is $12 remember? Well, the total cost for DIY is $2.08. That's a savings of $10 per bottle. With the way we do laundry in this house it's a substantial savings over the course of a year!
Leave me a comment if you try it! I'd love to hear what you think.
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