Evan's M.A.D. Birthday

Birthdays are usually filled with parties, presents, cake and ice cream.  Evan expects nothing less.  Oh, he knows his cake is not like everyone else's...but that is not a reason not to make it just as special...if not more!

Oh....and this kid does NOT let you forget his birthday is coming!
The day before, it was: "When I wake up in the morning....I'm gonna be 7!!!!" (like every 20 minutes).
And he would say it at the most random times.  We would be talking about a school assignment, or he would be happily playing with cars, when all of a sudden I could feel his energy vibrating and knew what was coming..."HEY MOM!  When I wake up in the morning...I'm gonna be 7!!!"  Yup.  That was our day.  If ever there was a day we were ready for his bedtime, it was then.  Of course it was cute and endearing (the first 347 times), and each time we would smile and confirm his statement.  You couldn't help but smile at his absolute exuberance!

On that special day, he woke to a room filled with balloons.  Well, kind of.  He was so sleepy he came straight into our room (as is his routine) for some "good morning" snuggles and hugs and didn't even notice the balloons!  When he went back to his room to get dressed...SURPRISE!!!  All smiles from then on!  Unfortunately (or fortunately) it was a school day for him.  I packed him a special lunch with a simple "happy birthday" note, and sent him on his 7 year-old way.

To help make his day special, he got to pick what we had for dinner (pizza without the crust), and I made him a special desert that he also had at his party a few days later.  I threw out a bit of a prayer with this desert as I hadn't made it before and some of the previous deserts I had made didn't go over all too well.  This is a recipe I came across on Pinterest.  It sounded good, and looked good, and people had good things to say about it.  SO...jumped in, and grateful I did!!  WOW!  All of us commented on how it tasted extremely similar to pound cake.  Probably the closest thing he has had to any bread in years.  Very tasty...even by us in the family that are not on a specialized diet.

The simple and awesome recipe can be found here:
http://www.genaw.com/lowcarb/pound_cake.html

The entire recipe works out to about 6.3g net carbs
Out of this recipe, I made 10 cupcakes (so about .6g net carbs/cupcake)

After making the cupcakes...
1.  I cut off the top,

2.  Added some of his "fluff" (made a batch with berry flavored Stevia drops, and added in 4 blueberries and 2 strawberries for flavor, color and nutrition),

3.  And topped with 2 blueberries and one strawberry.

Super simple!!

With all the add-ons, the net carbs of this beautiful and delicious desert is a whopping 2g net carbs.

Definitely a desert we will be making again!!

Sick Days and M.A.D. Mac n' Cheese!

For the parents of a kid with epilepsy, sick is never good.  "Sick" puts us on edge, watching, waiting, wondering if, and more likely, when a seizure will strike.

Evan came down with a cold over the weekend.  Thankfully no seizure as a result...and we were throwing everything at it to help his body.  Vitamins, rest, humidifier, naturopathic remedies, extra fats, etc.  This time it worked...but there are no guarantees.  The feeling isn't so much that we won...but that we got lucky this time.

I sent him to school on Monday as he seemed to be on the upswing of his cold and doing relatively well.  When I was nearly to work, I got a call from the school that he was extremely tired and fell asleep on the bus on the way to school.  So, I flipped around to go pick him up.  On my way I got to thinking about how epilepsy changes sick days for me.  My older son is at the point where if he has to stay home from school sick (not high fever sick, but "just-not-well-enough-for-school" sick), I could go in to work for a while, or run an errand or two if needed.  He is old enough and quite capable of being left home alone for a while.  I got to thinking, that when Evan is that age, that will not likely be an option.  It is very possible I will always feel the need to be home with him when he is sick and more prone to seizures.  At the moment I thought this, it was a moment I felt yet another loss.  Partly for me, but mainly for him.  Being old enough to stay home alone has been a rite of passage for my older son.  Something Evan will likely not experience until he is much older.  I know there are potential devices and safety plans and work arounds that will likely allow him more freedom than what I was thinking at that moment, but in that moment I simply felt more loss.

The thoughts didn't last too long before I had a self-talk and reminded myself that we take what comes when it comes and we do our best.  We cannot predict what will happen in the future, so it is silly to spend too much time there dwelling and worrying.  We will adapt and figure it out.

Thankfully Evan's little body just needed a little extra rest as about an hour after he was home he was asking to go play outside.

That same day I had been craving a good, homemade baked mac n' cheese (oh so sinful!!)...so guess what was for dinner Monday?  Yup....nummy baked mac n' cheese.  Evan found out what I was planning and decided he wanted to participate...so I had to come up with a M.A.D.-friendly option on the fly.  I had decided to give cauliflower mac & cheese another shot.  The first time I tried this was years ago.  I followed some recipe and it did not go over well.  Honestly, I tasted it and couldn't blame him.  We haven't tried since.  I was glad I decided to give it another whirl as this one turned out much different.  I made it and served it, and he devoured it.  Success!!  We all had a taste...really not bad!!  I think we all could adapt and eat it as a healthier option to the recipe I had made for the rest of the family (which was the ooey, gooey carby noodley sinful one).

The recipe for the M.A.D. version is below.  Its really is pretty simple as well as fluid (so easy to tweak if ya want - get creative!!).  With some things it was "add a little of this" and "add a little of that".  If you tweak it more and find other yummy ways to prepare it, please let me know. I'm always open to trying new things.  I did fail to take pics of the process as I really wasn't sure how it would turn out, and only got a quick snapshot of the end result.  Sorry, its all I got, folks.

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Evan's M.A.D. Baked Mac n' Cheese:

• 1/2 c. steamed cauliflower (I used frozen florets thawed in the microwave)
• 1/2 c. sharp cheddar cheese (shredded...can also use whatever you have)
• heavy cream
• 1 T to 1/4 c. Alfredo sauce to taste (jar...I used Bertolli.  This is *OPTIONAL but helps flavor)
• mustard powder
• paprika
• turmeric
• crushed pork rinds

1.  Preheat oven to 350 degrees.

2.  Melt the cheese into the heavy cream.  I simplified this and put them into a glass liquid measuring cup and heated it to melting in the microwave.

3.  Add in the Alfredo sauce, mustard powder, paprika, and turmeric into the melty cheese and stir well to mix.  Taste and adjust balances as needed. 

4.  Crush, smash, or "rice" the cauliflower.  Be sure its well steamed before you do this.  Mine was a bit under done and it made this process more difficult than necessary.

5.  Mix cheesy sauce into cauliflower and pour into a small ramekin or other oven-safe dish.  Sprinkle crushed pork rinds on top and bake for 20 minutes.

Recipe makes 1 serving.

Net Carbs: 4g with the 1/4c Alfredo sauce.  If you use less sauce, or a different brand, this could change.  Bertolli is 2g/net carbs for the 1/4c.

I.E.P. Rollercoaster

I attended Evan's IEP yesterday.  I am SO thankful for the schools here and the team that is working with Evan.  They are truly committed to seeing him succeed, and always grateful for input, information, and suggestions from me.  I have heard many parents complain about their schools, and have heard some real horror stories about the battles some parents have had to go through to get proper services and supports for their children.  I am relieved that, so far, I have not had those experiences.

That being said....this IEP was a bit difficult for me.  They did his 3-year testing to show that he still qualified for services which included testing in many areas.  Speech, IQ, math, reading, writing, comprehension, cognition, etc.  Overall, I have always seen Evan as a generally typically-developing kiddo.  I know he has a speech delay and is a bit delayed socially, but never really had it all laid out on paper as I experienced yesterday.

On the Wechsler IQ testing, Evan scored a 73, well below average.  Many of his testing scores came out with similar results.  My heart sank a bit.  I've never seen him as being so far below average!  I wasn't prepared for that, and admit that there was a part of me that temporarily felt defeated (and guilty).  But, then a voice inside me reminded me of what I have felt for a while now.  Evan is NOT abnormal.  He is simply developing at the pace Evan is supposed to develop at.  Yes, medications have played a role in his delays, and I can feel guilty about that...but, the fact is, HE IS DEVELOPING!  He is continually learning and growing.  Who cares if its not at the same rate that Mr. Wechsler thinks he should be developing at (ok...I really don't know if there is a Mr. Wechsler...that is just an assumption of mine)!

Then was the reinforcing upswing of this rollercoaster.  All the evidence of how hard he has worked and how far he has come.  He has met, and in many cases, exceeded the IEP goals set last year.  At the beginning of the year he was barely writing the letters of his name...he now copies full sentences and can write all letters of the alphabet.  At the beginning of the year he couldn't write any numbers...he can now write numbers 1-20.  Heck, at the beginning of the year he wasn't recognizing numbers beyond 5!  He can now count to 100.  He is starting to read!  These are just a few of the examples the team gave me, reinforcing that HE IS DEVELOPING!  More importantly...he will continue to develop as God has intended for Evan.

I am refusing to see him as a test score, and encourage all parents to do the same.  Those do not take into account what we know about our kiddos as their mom.  Test scores cannot define him or anyone else, and cannot predict what a person can do with their life.  Set high standards for your kids and watch them grow!  Allow them to  explore their limits, don't limit them.  Ok...maybe its ok to limit them when it comes to some things...too much ice cream isn't good for anyone!  

We have set the bar high again with his IEP this year, as we did last year.  I look forward to seeing him surpass those goals by March 2016.

Mommy Fears...and why I can't enjoy sleeping in

There are many "mommy fears".  Some are justified, some are irrational, and some (ok, many) we can't explain.  There are the ones we have when our kid is doing something "dangerous" such as riding a skateboard down the driveway (fully geared...so maybe not completely dangerous), and we bite our tongue, hold our breath and maybe even look away...hoping and praying they won't fall.  These are the fears all mommies have from time to time.

Then there are the fears I never anticipated I would have, and didn't have, before epilepsy.

Most mornings Evan is awake between 6:30am and 7:00am.  On occasion he will sleep longer, but that isn't too often.  Before seizures, having a morning the kids didn't wake up before 7:00 am was seen as a blessing.  A gift, of sorts, from the universe..."You are such hard-working parents, you deserve to sleep in!" says the Universe.  "If I must." I would reply.  

This morning I woke up to my alarm and not a 6 year old poking me in the face.  Hmmmm...Evan must have been tired and needed extra sleep.  As we know, sleep is good for our kiddos with epilepsy, so I let him sleep.  I showered and got ready for the day.  7:30am came and went.  With each passing minute, I had to resist the urge to go in and ensure he was ok.  Side-note...he is a light sleeper, so just going in to check on him would cause him to wake up, thus my internal struggle!  I argued with myself..."what if something is wrong?!?"..."but if he is sleeping, his body must need sleep!  Let him rest!"  After about 20 minutes of fretting and worrying and arguing with myself, I couldn't stand it any longer and I went in.  He raised his sleepy head to look at me...a sleepy grin crossed his face as he said "mornin' mama".  My heart warmed and my brow released as I let out a sign and said "good morning" and smiled back.

Since epilepsy, I no longer can enjoy a morning of "sleeping in".  I still catch myself at times, lying to myself..."Oh, I just wish they would sleep in!!" but, deep down, I know that it only brings worry that increases with every passing minute.