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.

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.

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.

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.

Stabilizing the toys

For all of you wondering why I don't just put something under the toy to keep it from spinning ...

Well, that should answer your question. lol! :O)

Video Comparison number 2

It's that time again! Video time!!

This video is so, so special to me. What magical timing. I caught James telling me "no."!!!! This is the very first time he has ever made the "n" sound. How incredible to capture it forever.

I'm going to post all 3 videos in chronological order. Video 1 was taken shortly after returning home from the hospital when we started the diet. Video 2 was one month later, and video 3 is just over 2 months since the start of the diet.

This boy has come leaps and bounds. It is truly a miracle. He is practically sitting up on his own for short spurts. He's started making more sounds Ga, Ba, Ma, Da, and No to name a few. His dexterity continues to improve. His extremities have started to fill out, he's no longer just skin and bones. He just looks so healthy!

Now, without further a-do ...

Video #1 - Lack of head control, mostly closed fist play, tires easily. 11/2011.

Video #2 - Improved head control and stamina. Better use of hands. 12/2011

Video #3 - Continued improvement with overall stability and stamina. More vocal. Better inspection of toys. It's tricky to hear, but, you'll hear James tell me "no" right after I say "no?". I attempted to take away his toy and asked him "Can we tell our friends Buh-bye?" He pulls his toy towards him and I say "No?" Immediately he responds with "No." I let him keep playing. :)

(I'd give you the time when it occurs but, sadly, my computer has given up on sound. lol. Who needs sound, right?) 1/2012

Optimus Prime says "brush your teeth".

The other day at physical therapy we were asked "Why don't you buy him an electric toothbrush?" I was a bit thrown off for a moment before she elaborated, "Not an expensive one. Like, a, um, Crest spin one. It will be easy to hold onto and the vibrations are a good stimulus for his senses." I figured what the hell, why not?

Well, I am damn happy that I went along with this kooky idea. This boy is in love with a toothbrush. lol.

A boy and his Transformers, Optimus Prime, spin-brush...

(Sorry it's so dark. It was a spur of the moment video.)

Difference of opinion

This blog post  http://momastery.com/blog/2012/01/04/2011-lesson-2-dont-carpe-diem/  recently kept popping up on my Facebook news feed. Four of my friends shared it because they loved it and stated that all moms should read it. It's not just those four moms because, once posted, there were numerous numbers of "likes" and comments. I figured if that many moms are in love with this post then it is definitely worth the read.

I started reading the article and immediately wanted to like it. It was well written, seemed to be coming from a very honest mom and so many other women declared this a "must read" that I really, really wanted to like it, too. Sadly, I did not. The further I read, the more I found myself shaking my head. I can see why so many moms enjoyed this article. So many moms of healthy, happy babies. So many moms living in the false, bubble world of "no harm can come to my baby, that only happens to other people". Well, here's my post from an "other person".

This post is not going to be all doom and gloom, nor is it meant to read as holier than thou, so please bear with me as I attempt my version of scared straight, the parent edition.

When we become moms, we're scared. It's all new and now we're instantly responsible for a brand new teeny, tiny person. But, scared or not, the last thing we want is some other person's advice. Especially those dreaded elderly ladies in the department store telling you that your child is too hot, too cold, too big, too small, and cherish each moment. Sometimes that's just too much. I understand that a lot of these women are just being judgmental but there are some that approach you speaking words of wisdom. You can ignore the one who tells you that little girls should have long curly hair, not short and straight like your daughter's. You can also brush off the one telling you that you're a terrible mother because your son doesn't have a hat on, even after you've shown her the winter hat in your hand. The ones declaring "carpe diem" however, may be on to something.

I find "carpe diem", as used in this article, over dramatic. Nobody says go out and seize the day nor do I think that's what those women are trying to tell you. I think they're trying to tell you to go out and be thankful for your day because you are not guaranteed another. Enjoy your day and your time with your children. Did anyone ever stop to think that maybe these are words of experience and not just some bored lady meddling with you while you're busy running through the store? Did you ever stop to think that maybe this woman saw you blindly shopping, talking on your cell, wiping a nose, yelling to your child who's run too far ahead, all with an untied shoe, and thought, she's not living at all she's just going through the motions? If that little, old, meddling lady stopped you and asked if you knew your shoe was untied, or what you just put in your cart, or what your phone conversation was actually about, or, most importantly, what your youngest child just asked you, could you honestly answer her? If you couldn't, that's ok. That would be the point of this post. To make you realize that being too busy to enjoy being a mom is a terrible and very real thing nowadays. Finding your happiness in only a few moments a day, or only after your children are in bed, is truly sad.

When your child yells, sings off key, or interrupts you - it's ok to feel annoyed, but remember to be thankful they're capable of speaking.
When your child runs off ahead, wanders too far, or attempts the stairs - it's ok to get nervous or feel angry, but remember that many children aren't capable of walking.
When your child pulls your hair or breaks your glasses - it's ok to feel irritated, but remember that some children aren't even capable of acknowledging their own parents. They're too trapped in their own world to find their way into ours.

If you're only celebrating your child's life 2-3 moments a day then you are insulting their will to thrive. Think of all the hard work they've already put into their lives and not complained. Now think about your last 24 hours. How many times have you complained about not only your life, but theirs?

It's time to come out of your woe is me. my life as a mother is hard, rut and find the joy in the ordinary. Be thankful for simple, everyday things. A smile, a laugh, a pout, a hug. These things are simple gifts from a child to a parent. If you're too busy looking forward to your glass of wine and adult conversation after their bed time you'll miss them for sure.

There is no guarantee of tomorrow. Would you really want to wish you had done more? I plan on leaving no room for doubt. I'm going to live, love, laugh, and parent until my last breath. When I'm gone my house may still be a mess but my relationship with my children will be in perfect order.

Keto Friendly DIY Baby Wipes!

Well, the title pretty much sums it up.

Make your own baby wipes. A healthy and inexpensive alternative to store bought that won't undermine all of your efforts to keep your child in ketosis. There are no preservatives and nothing artificial thus, no hidden carbohydrates to absorb through your child's skin. I'll personally never waste my money on store bought again!

Here's what you need:

- 2 tupperware style containers, 7 cup size is perfect.
- 1 roll Bounty select-a-size paper towels.
- Coconut oil (I picked mine up at Whole Foods. I use the kind for hair and skin, not for cooking.)
- Essential oils for fragrance (only if you want to. I used it because I had it on hand.)
- A measuring cup, 4 cup size. (or 2 cup but you'll have to repeat the step.)
- Hot water
-A spoon
- 15 minutes

*If your tupperware pieces are new, please wash them first.

Step 1:
Measure out 4 cups of hot water. It does not have to be boiling, just warm enough to melt the coconut oil which is about 76 degrees, give or take.

Step 2:
Poor 2 cups of water into each container.

Step 3:
Add 2 spoonfuls of coconut oil to the water and any essential oils if you're using them.

Step 4:
Stir to melt and blend the ingredients.

Step 5:
Lay the paper towel roll sideways on a cutting board and cut in half with a non serrated knife. Using a serrated knife will cause lots of little fuzzies to get into the wipes. Wipe any loose pieces from the cut ends.

Step 6:
Place each half into a container with the cut edge down.

Step 7:
Push the covers on and latch them securely. They'll close, I promise.

Step 8:
Turn them upside down for no less than 10 minutes.

Step 9:
Turn the containers right side up and open. Pull out the paper roll in the middle. This isn't possible to do until it has been soaked through.

Step 10:
Pull up the center wipe and you are done!

The coconut oil has antibiotic, antimicrobial, and antifungal properties, it's soothing, and it's also moisturizing. I've not only used them for baby wipes but also as hand lotion or chap stick in a pinch.

After the initial purchase of the oil and tupperware, it really only costs you the price of one roll of Bounty to make 2 boxes of wipes. Need some to go? Put them in a ziplock baggie!

I love these wipes!

New ride!

Mike had the day off from work today. He put together James' smart trike that he got for Christmas from Nana and Pa. He LOVES it! He giggles every time he grabs the handlebars or we start to move across the floor. The improvement of this little boy's quality of life in just the past 6 weeks is amazing to see. I'm so indescribably happy for my favorite little man.

We need to make a few modifications to the shoulder straps and the pedals then he'll be ready to roll! Here's to the mild winter we've had so far! (knock on wood!)

Pool Therapy

December 30th was Jamie's last day of pool therapy at South Shore Hospital ... for now. We're going to take a little breather from therapy to allow James to continue to make advances developmentally.

His first 4-5 months of therapy were a complete wash. No pun intended. We'd get him in the pool and all he'd do was arch away from us, stare at the surface of the water, and try to put his face in it. Attempting any type of therapy routine was completely out of the question. He'd missed entire months of therapy due to his rampant seizure activity, often causing him to be admitted to Floating for several days at a time.

In November, Kathy, his therapist, and I discussed that this was just not the right type of therapy for James. It wasn't an entire loss. Any splashing or kicking did help strengthen his muscles, but there was no proof of improvement. Improvement which the doctors and insurance companies would want to see to add additional visits. We had visits running until the end of 2011 so we decided to use them since we had them, even though we weren't seeing much change in James.

Then, the first visit in December it happened. I once again heard "Who is this kid?!" James was enjoying the pool! He was keeping his head up and interacting with Kathy. He was kicking his feet and moving his arms in an intentional way. He was laughing and smiling and cooing and yelling! He noticed his feet under the water, the noodles hanging on the wall, the other patients in the pool, the windows up high where the wall meets the ceiling, and the bright light squiggles on the ceiling caused from the sunlight reflecting off the water. He noticed it all - and liked it!

He had three magical, for lack of a more appropriate term, sessions to finish out the calendar year. Due to his marked improvement, Kathy and I decided that we will touch base in May. On May 26th, James will turn 3, thus aging out of Early Intervention programs (heartbreaking). So, having additional types of therapy lined up and ready to go starting in June will be essential. Kathy will do another review and submit a request for more pool sessions and possibly land sessions as well. This will depend on James' therapy routine at the new school he'll be starting in June. I'd personally like to see him have 1 pool session and 1 "dry" or "land" session with Kathy per week. I think she understands what makes James, James, and will help push him even closer to being self sufficient.

                                   Lots of good things to come. Progress is being made!

                                                                                              12.30.11