Inaccurate Blog Name

Well, it has been a really long time since I've even looked at this page. Now, it appears that the title is completely inaccurate.
James stopped the Ketogenic Diet back in the fall of 2012 due to the inability to handle the side effects. He was in the hospital every 4 weeks due to acidosis. They'd fix him up with IV fluids, get his Ph back in check, and he'd finally start eating and drinking again. Then they'd send him home where he'd slowly deteriorate and we'd have to return again. He was also jaundice and found to have a fatty liver. The most concerning effect was his cholesterol levels which had gone from the 150 range up to 378. During a seizure, his heart rate would increase to 180-200BPM. Even though we were trying to prevent a fatal seizure we had increased his risk of clot or stroke times 10. There's no difference in fearing your child dying from a seizure versus a stroke. Either option would be utterly devastating.
Since weening from the diet, James has done well. His seizure activity has waxed and waned. The 30-50 daytime seizures fortunately never returned and we typically only see nocturnal seizures. We've kept his diet gluten and dairy free. It is also high in good fats, like avocado and coconut oil, and low in carbs. Unsweetened almond milk is his beverage of choice. Organic is the way to go to avoid any exito-toxins from triggering seizures unnecessarily.
We're doing the best we can with what we can.
I'll hopefully be posting more often since I'm trying to weed out the un-needed time/emotional drain in my life. Too much clutter and drama can wear you at as much as the real life strain can.
Until next time...

9 months vs. a lifetime

I was visiting my mother the other day and we were discussing the latest goings-on in my life. We talked about Liv and James. We talked about physical therapy and preschool. We talked about Tufts Health Plan and appeals processes. We talked about sleepless nights, seizures, medications, and fears. 

After my second glass of wine, I was a little more forthcoming on what my life is really like. She looked at me and asked if I was taking anything that helped me out. To her surprise, my answer was simply "no". Awhile ago, I used to wake up in the middle of the night feeling like a stack of bricks had been dropped on my chest. I was hot, nervous, and breathless for no apparent reason. When it finally interrupted my life enough I went to my doctor. She said it was anxiety and/or panic attacks and gave me something to "take the edge off". I remember looking at that little bottle of pills and feeling several things. The first feeling was that I had failed. Without medication I couldn't deal with my life. How insulting is that to my family? The next thing that I thought about was maybe, just maybe, these pills could change my life. If I'm more relaxed then I'm a better mom, right? So, I decided to give it a go.

After taking the pills for a few days I noticed that  they were working. I was getting more sleep and no longer waking up sweaty and shaking. I thought to myself "Wow, that was too easy". And, unfortunately, I was right. Those pills did take away my anxiety but only because they made me so groggy it was hard for me to wake up. The feeling that taking the blue pill or the red pill would change my life instantly like in The Matrix had vanished. My life didn't change. My son didn't stop having life threatening seizures. My nervousness and concerns didn't disappear. Now they were just hidden in a life blurring fog. It was so hard to fully wake up when James' alarms went off in the middle of the night that I knew I hadn't found my answer. If I wanted to make the best decisions for James I couldn't be groggy. That boy deserves nothing but my best. So, in my case and possibly not yours (no judgement) I stopped taking them and went back to the norm. Our norm.

After my mother heard my answer of "no" she asked if i went to talk to anyone about it. Again I simply answered "no". I don't have time for a therapist and in my mind it's just one more person that I have to talk to. I just don't feel like trying to explain James to someone I don't know from a hole in the wall. I think it would actually add more stress to my current situation. One more thing to be late for or forget about all together.

Now, following my two consecutive answers of "no", my mom asked her third and final question. "How do you do it?" I didn't really have an answer for her at that moment so I just simply stated 'You do what you need to do. Mike and I, we just make it work.'

That last question nagged at me. I've thought about it since last Saturday and managed to come up with a few answers. I started walking. I started a blog. I call my friends to vent. I started running. I water my garden. Sometimes I put on my headphones and turn it up so loud that I can't hear the world going on around me and for 3 minutes during that song I am alone in the world. I didn't figure out the real answer until today. The real answer is "I'm ok with all of this because I did everything right and it's not my fault". Once I stopped blaming myself, my life took a drastic change for the better. A magic pill or potion may work in Wonderland but not in the real world, Alice.

To all of my friends and family who are pregnant or may become pregnant, you have no guarantee of the future. You may have a perfect 7 pound baby born at 40 weeks on the dot. You might have unexpected twins. You might have a boy. You might have a girl. You might have a preemie. You might have a child with special needs. The phrase "That only happens to other people." does not apply. Somebody has to be the "other" person and you have no say whether or not that person is you. So take care of yourself while you're pregnant. Don't take unnecessary risks. It's just not worth it. What's 9 months in the grand scheme of things?

I delivered my daughter Olivia at only 28 weeks so I knew going into my second pregnancy that I would be considered high risk from day 1. So, before day 1 even came around I prepared. I lost all but 2 pounds of my weight from my previous pregnancy. I took vitamins. I didn't drink or smoke. I ate a healthy diet and tried to live as stress free as possible. After we heard those beautiful words "Congratulations! you're pregnant!" I continued to err on the side of caution. I took my prenatal vitamins. I didn't drink any caffeine. I didn't eat a lot of sweets or chocolate and I most certainly did not eat for two. I didn't do any strenuous exercise, I didn't eat processed meats, I didn't dye my hair, heck, I didn't even paint my toenails again until I was in my last trimester. I took every single precaution that I could think of.

As I'm sure you all know by now, my precautions didn't guarantee me a healthy 7 pound 40 week baby. My son had numerous medical concerns and boy, was I mad. I was mad at the doctors and mad at myself. I told God, Mary, Jesus, and anybody else up there with them to go screw. I was pissed that I had done everything right yet everything was not right. 

I remember the crazy druggy mom with the baby across the way from James in the NICU. I remember that she didn't care about her son's seizures from withdrawals. Nope, she only cared about his little Nike shoes and how cute he looked in his trendy clothes. It's like she was playing dress up time with a doll when in all actuality she had just played Russian Roulette with her son's actual real life. This isn't a freakin' movie. This is real life. Real life. With life and death and all sorts of grey areas in between.

Now, her baby got bigger and better and left the NICU before James, just as the other baby boy with a crackhead for a mother left the NICU almost a full month before Olivia did. Someday those babies might have major health concerns like James. Maybe those moms will regret what they had done. Maybe not. But, for me, knowing that there isn't even one thing that I left to chance for James gives me peace. I tossed that old Catholic (or so formerly Catholic) guilt aside. Ditching the guilt made the anxiety ease up and allowed more room for real happiness. I can do this because i didn't do anything wrong or harmful. No study done 15 years from now can link me drinking a can of Mountain Dew to brain abnormalities. Why? Because I didn't drink it. And I didn't dye it. And I didn't paint it. And I didn't smoke it. 

For 35 weeks I didn't do anything but be pregnant. That was my job and I did it freaking beautifully! James may have health concerns but apparently that's just the way James was meant to be. There isn't one thing I can go back and change that would give me a different outcome. I can honestly look my son right in his handsome little face and say that there is no chance that this was caused by any one thing I did. I didn't leave anything in your life up to chance. I've loved you since before I met you and I never took any part of you for granted. Not once.

So, take care of yourself. Take care of your baby and plan for any babies that you may one day have. You have no guarantees in your life, or  in theirs. Nine months of "suffering" is better than carrying around the burden of guilt for a lifetime. From one of the "other" people, there's no risk worth taking.

Much love,

S.

AAARRRRGGHHHHH

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.

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...

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.

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.

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.

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.