Epilepsy Awareness Day 2012

This is what a normal EEG looks like:

This is what an EEG looks like if an infant has Infantile Spasms:

And that is when they are NOT actually having a seizure.  This pattern is there all the time, causing chaos in the brain. 

From epilepsy.com

What's the outlook?
Most children with infantile spasms are mentally retarded later in life. Those whose spasms are related to an underlying developmental brain disorder or injury have a higher likelihood of moderate to severe retardation. The outlook is brighter for those who were developing normally before the spasms started: 10 to 20% will have normal mental function and some others may be only mildly impaired. Some children with infantile spasms develop autism. Many doctors believe that the quicker the seizures are controlled, the better the results will be.
When the spasms stop, many children later develop other kinds of epilepsy. About one-fifth of children who have had infantile spasms will have the Lennox-Gastaut syndrome.

In other words, grim.  Epilepsy is the reason that I don't know if my child will ever live independently; the reason I don't know if he will be main streamed in school or in special ed; the reason I let a doctor cut out part of his brain; and the reason our lives have been turned upside down.

For most people only one day is epilepsy awareness day, but for us it's every day. 

Pictures from the parade and of the family decked out in purple coming soon! 


 

from fat to fit

I know I haven't updated about my weight loss competition in a while and honestly, it's mostly because I'm pretty sure there is no way I'm going to win at this point.  I got really stuck after I sprained my ankle.  For two week, I only lost a lb a week.

I had one scheduled "cheat" on the diet for a day that I went to the spa.  I have been to Lake Austin Spa once before and some time there is what Jonathan got me for Christmas this year.  I had an amazing time!  I also knew that I was going to eat whatever was on the menu!  I was very good and got gluten-free and chose the lowest carb options, but there was no way I was not going to eat there.  It was wonderful.  And then that same weekend we went camping and we took a bottle of wine with us.

I even made low-carb smore's!  Jack wasn't thrilled with the marshmallow, but loved the graham cracker and chocolate.

And lifting Jack, all 38 lbs of Jack, is an easy on-the-go work out.

The following week I didn't do meal planning because we had been camping and I just didn't make the time to do it.  I ended up getting stuck out running errands with no food.  I did the really awful thing and went through the drive through at chick-fil-a.  I will likely NEVER eat fast food again.  I would rather starve then feel that way.  Had I not known what caused it, I would have driven myself to the ER.  I really thought I was going to vomit and pass out all at once, for about 6 hours.  It was really really awful.

The only other cheat was on a date night to see a concert for ACL.  Jonathan won tickets through work and after the show we went to the W hotel and had mini burgers.  They were AMAZING and totally worth the cheat.

Had I been working out like I could before the ankle sprain, I don't think those cheats, spread over 3 or 4 weeks would have thrown me off much.  But I haven't been able to work out like I want to.

I've been going and sitting on the stupid arm bike thing, or they have a sitting down elliptical type machine too that I've been using.  It just gets really boring.  Last week I actually did the regular elliptical for almost an hour before my ankle started to hurt and as soon as I felt anything in it I stopped.  But it was sore for 3 days after that.  I was able to walk around a park all day yesterday and it did fine so I'm hoping I can get back to normal soon.  Last week and this coming week have been tough as far as having someone to watch Jack so I can actually go to the gym too.  The weather has been beautiful and I would love to toss him in the stroller and walk the 1.5 miles to the park up the road, but again my ankle isn't quite ready for that.  It pisses me off too!  I feel like I'm waisting the amazing weather especially when I know that it's going to get hot before long and I won't be able to do it.

As far as numbers go, I've lost 17 lbs in 7 weeks which averages out to 2.4 lbs a week.  That is nothing to balk at, it's pretty good, I just don't think it's enough to win this competition.

The more impressive numbers are the body composition numbers.  I had Tony re-check them last week and in 6 weeks I had lost 25 lbs of fat and gained 10 lbs of muscle.  That is awesome!  I have shrunk out of a few pairs of pants and I can see the difference in my body too.  Thank God!  At least there is that.

So I'm going to keep trucking along.  I feel great, I'm not hungry and I definitely don't feel like I'm starving myself.  Heck, this morning I made chocolate chip cookies for breakfast that had 6 grams of carbs in them.  I've been on a baking kick for some reason.  I also made pineapple upside down cake the other day.  Mostly for Jack, but I tried it too.  It was pretty good, but it has a bunch of coconut and I'm not a huge fan of it.  Still, it was pretty good.  I've been cooking all of our meals and they have turned out great and I've been trying some new ones too.  Meal planning is still a MUST to make all of this work though!

I'm working on a post about Jack.  There are some exciting things going on!

Best Friends

This is Jack with his best friend, Ellie.  Ellie is about 6 months younger than him and about half his size :-)  We do music speech therapy with Ellie (and her Mama Anna) on Monday, usually see them for playgroup on Wednesday, and then we try to see each other sometime over the weekend too.  

 These two monkeys play quite well together. 

It's mostly parallel play, which is playing next to each other and is the first step in interacting with peers.  They are both getting good at sharing and taking turns.  When they come to the house Jack will even say, "Ellie, share, turns" and even if he has to be reminded of it, he does well considering he's a toddler and so does she.

He even shared his swing, which is a big step for him given it is his favorite thing! 

Anna and I met at the church mom's group and have been friends ever since.  And Jack LOVES Anna!  In fact sometimes I'm not allowed to help him, only Anna will do.

They definitely can make a mess together too!  

But they love on each other as well.

Oh, and I almost forgot to mention that Ellie has Down Syndrome and she rocks her extra chromosome.  It's one of those things that I forget sometimes because when I look at Ellie, I don't see a little girl with Downs Syndrome, I see Jack's best friend.  I see a spunky, sassy toddler who loves to run and play.  I see a little girl who defies her mother whenever possible, who can climb anything, and who loves to explore the world around her.

It has been such a joy to watch her language development explode right along with Jack's over the last several months.  She signs like crazy now and is building her vocabulary.  And I can not even tell you how wonderful it is to have a mama friend who really gets what it's like to have a child with special needs.  Our kids may have totally separate diagnoses, but she gets what it's like to have a child that others see as different.  And she knows the huge joy and pride there is in the small accomplishments as well as the worry that come along with the whole package.

We love you Ellie Bear!

Today is World Down Syndrome Day.  It also marks one year since I had my D&C of the baby that I was told likely had some form of chromosomal abnormality.  I will forever wonder if I have a baby with down syndrome waiting for me in heaven.   

Visit Ellie's blog! 

A bump in the road

Most of you know that I have been on this work-out kick lately.  To sum it up, I did about 4-5 weeks of training with a personal trainer, then took a month off for surgery, and have been working out super hard for this weight loss competition for the last 3 weeks.  The whole thing has been torture!  Really, for the last 2 months my whole body has been sore.  I've used and re-discovered muscles that I didn't know I had.  Jack has had to walk more because I haven't been able to pick him up after some of these ass kickings I've had.  Really, it has sucked!

Towards the end of last week something magical happened though.  I finally reached that point where working out felt good.  It's a friggin' miracle when that finally happens!  The working out itself still sucks, and my trainer has kicked it up a notch.  To the point where other trainers were totally impressed with what I was doing and were following me and doing the same work out.  If what I'm doing is hard for the super skinny and uber fit trainer, maybe it's a little difficult!  I have also been pulling my trainer across the gym and throwing around some crazy weight while burning around 700 calories a work-out.  I'm still sore after, but not to the point where I feel like I'm gunna die and I finally get that after work-out high that everyone talks about.  I finally reached the point where I WANT to work out.

If you are waiting for the other shoe to fall, well, it did.  I was stepping off the curb at the store, putting stuff in the car, and didn't realize there was a ditch where I was stepping and I completely rolled my ankle and went down hard.  This wasn't a little twist, but rather a full roll that instantly started to swell.  I can not begin to tell you how pissed I was.  I have been being so careful when it comes to getting injured.  I have told my trainer when things have been too difficult or something doesn't feel right, I have made myself take rest days and forced myself to rest and go slow when things have hurt.  I can not believe that a friggin' curb took me out.

On that note, it didn't take me out for too long.  After 2 days of limping around I went and got an x-ray today just to make sure it wasn't broken.  I've been able to walk a little so I was pretty sure my ankle wasn't broken but I can't move my toes because the top of my foot hurts too much.  Thankfully nothing is broken but I was told not to do any exercising with it for 2-4 weeks.  Dumb ass doctors!

So now I have all of this energy to work-out, but am told not to do it.  I am also so worried that I'm going to lose that desire to exercise and that high I get from it and have to start all over again.  AIN'T GUNNA HAPPEN!  I actually headed to the gym this afternoon and did the stupid arm bike thing.  It's for people with knee/leg injuries and doesn't involve the lower body at all.  It SUCKS!  But I was able to talk to my trainer and we brain stormed a bit.  He is coming up with exercised for me.  I know of some floor work I can do, laying on the mat or with the exercise ball that would be fine.  I can continue to do the arm bike for cardio and there is this sitting down elliptical thing that uses legs and arms that I tried and it was fine.  After another week or so hopefully I can do some swimming too which can mix things up a bit.  I soaked in the hot tub after my hour work-out and this evening my ankle actually feels better than it has since this all happened on Tuesday.  I currently have no ibuprofen or vicodin in me and I'm okay.  The last few nights I have needed both.   

This did throw me off for a few days, exercise wise, but I am figuring it out.  The swelling isn't bad and I'm staying off it as much as possible, as much as possible while taking care of a toddler that is.  I've been buckled down food wise but I'm going to have to make extra sure that I don't eat anything extra because realistically I won't be burning as many calories, but with any luck I can at least keep the momentum going until I'm all healed up.  This is so frustrating though! You have no idea how badly I have wanted wine the last few evening, but I have held tight and resisted. 

I've lost 11 lbs so far in less than 3 weeks, I'm just hoping that doesn't stall too much.

Here are some pictures of some of the yummy foods I've been eating!

 
 Crustless quiche!  We all love it, and it's even better when I actually get to eat it instead of having it stolen by the toddler.


Fage full fat yogurt, a few strawberries, and pecans.  So good that it feels like cheating!  And only 5g of carbs! 


Whoever said that you can't have pancakes or waffles on a low-carb diet hasn't been to our kitchen!  These are Jack's famous blueberry waffles, and they rock.  I can only finish 2 triangles of them but Jack can of course eat all of his and then polish off whatever I can't finish.  This comes in at just under 7g of carbs for the whole thing. 



And these lettuce wraps are killer!  I'm not sure what kind of crack Jonathan put in them, but they rock.

If there is one thing for sure, I at least don't feel deprived when it comes to what I'm eating!

School

Next week Jack goes through pre-school evaluation through the public school system.  They want to evaluate him for 20 hours, so drop him off for 4 hours a day and leave him there.

Pardon me for a minute while I freak the F*** out!

His current ECI therapist thinks that his speech is about 6 months behind and that they will want him every day of the week.  EVERY FRIGGIN' DAY!  With our current social schedule we are busy at least 3 mornings out of the week.  EEK!   Thankfully I do get a say in this. 

The idea behind him going to school already is to get him caught up by the time he reaches kindergarten.  ECI doesn't think there is any way they will keep him until kindergarten and that he will "graduate" out before he reaches that age, which would be great.   Personally, I'd like to keep him home for another year and continue with our social things that we do.  We currently do music speech therapy (which we will probably continue), swimming lessons (which we would also like to continue), play group (again, very important), and usually try to catch story time at the library or another play date.  We stay busy and Jack gets plenty of interaction with other kids and adults who teach him things. 

I have met the teachers at the school and really like them.  I think they are more freaked out about all of his medical stuff than I am, which is a good thing.  The look on her face when I was talking about him never having played with playdough or shaving cream because of the carbs in them was utter shock and panic.  I told her that it's fine if he plays with that kind of thing, but I need to know about it so that I can make note of any extra seizures if they happen.  I think this week will be good in that aspect because we can see if there is an increase and determine what to do. They are also aware of his food and food issues and one of them will sit next to him at snack and meal times. 

We are looking into some private options too because the numbers are pretty crazy at the public school. 

I honestly don't remember the last time I was so nervous.  Aside from brain surgery that is!  Jack is a very social butterfly and loves to be around other kids.  Today even we had some friends come over for a play date and Jack had a blast.  He did so well sharing his toys (for a 2 year old that is) and actually listened.  He was so excited that someone was coming over to play too, he kept saying, "friends, play, share, turns" and is finally getting the concept of sharing!  But still, my little bug hasn't ever been in a daycare/pre-school setting.  He is the sweetest little guy ever but I'm afraid that he won't ask for what he needs and that they won't understand him.  I understand about 95% of what he says and his speech therapist understands about 75% at this point.  Him having to communicate with other people will be very good for him because he will have to figure out how to become more understandable, but he's going to get frustrated in the process.

The other thing that makes me nervous is that he will go solid for a week and then not at all for a month.  They won't let me stay in the classroom the whole time with him, yes I have asked, but I can stay on campus if I want.  The first day I will probably take the ipad and sit outside the door the whole time.  Yes, the school is less than 1/2 a mile from my house, but Mama bear needs to be close to her little cub.  He's not even 3 yet and is still so little.  Don't tell him that though, he insists that he is a big boy.  I'm sure he will scream and cry when I leave.  I have worked in child care so I know that it's better to just make a clean break, but that doesn't mean that it's easy!  I will let ya'll know how it goes!

  (Dance celebration after having gone down the slide)

Dedicated to my trainer

I am working on a real post about the dieting I'm doing, but I am also working on a post about Jack and I really need to get the meal planning ironed out for the week.  So, here is something that I though was hysterical and is super accurate as to how the 1st week of all of this went.  Only add in wanting to rip someone's head off for some sugar.  

The Woman's Week at the Gym: This is dedicated to everyone who ever attempted to get into a regular workout routine.

Dear Diary,
For my birthday this year, my husband purchased a week of personal training at the local health club.  Although I am still in great shape since being a high school football cheerleader 43 years ago, I decided it would be a good idea to go ahead and give it a try.  I called the club and made my reservations with a personal trainer named Christo, who identified himself as a 26-year-old aerobics instructor and model for athletic clothing and swim wear.
Friends seemed pleased with my enthusiasm to get started! The club encouraged me to keep a diary to chart my progress.
________________________________
MONDAY:
Started my day at 6:00 a.m. Tough to get out of bed, but found it was well worth it when I arrived at the health club to find Christo waiting for me. He is something of a Greek god-- with blond hair, dancing eyes, and a dazzling white smile. Woo Hoo!!
Christo gave me a tour and showed me the machines... I enjoyed watching the skillful way in which he conducted his aerobics class after my workout today. Very inspiring! Christo was encouraging as I did my sit-ups, although my gut was already aching from holding it in the whole time he was around. This is going to be a FANTASTIC week!!
________________________________
TUESDAY:
I drank a whole pot of coffee, but I finally made it out the door. Christo made me lie on my back and push a heavy iron bar into the air then he put weights on it! My legs were a little wobbly on the treadmill, but I made the full mile. His rewarding smile made it all worthwhile. I feel GREAT! It's a whole new life for me.
_______________________________
WEDNESDAY:
The only way I can brush my teeth is by laying the toothbrush on the counter and moving my mouth back and forth over it. I believe I have a hernia in both pectorals. Driving was OK as long as I didn't try to steer or stop. I parked on top of a GEO in the club parking lot. Christo was impatient with me, insisting that my screams bothered other club members. His voice is a little too perky for that early in the morning and when he scolds, he gets this nasally whine that is VERY annoying. My chest hurt when I got on the treadmill, so Christo put me on the stair monster. Why would anyone invent a machine to simulate an activity rendered obsolete by elevators? Christo told me it would help me get in shape and enjoy life. He said some other crap too.
_______________________________
THURSDAY:
Butt hole was waiting for me with his vampire-like teeth exposed as his thin, cruel lips were pulled back in a full snarl.  I couldn't help being a half an hour late--it took me that long to tie my shoes. He took me to work out with dumbbells. When he was not looking, I ran and hid in the restroom. He sent some skinny witch to find me. Then, as punishment, he put me on the rowing machine-- which I sank.
_________________________________
FRIDAY:
I hate that jackass Christo more than any human being has ever hated any other human being in the history of the world. Stupid, skinny, anemic, anorexic, little aerobic instructor. If there was a part of my body I could move without unbearable pain, I would beat him with it.
Christo wanted me to work on my triceps. I don't have any triceps! And if you don't want dents in the floor, don't hand me the darn barbells or anything that weighs more than a sandwich.
The treadmill flung me off and I landed on a health and nutrition teacher. Why couldn't it have been someone softer, like the drama coach or the choir director?
________________________________
SATURDAY:
Satan left a message on my answering machine in his grating, shrilly voice wondering why I did not show up today. Just hearing his voice made me want to smash the machine with my planner; however, I lacked the strength to even use the TV remote and ended up catching eleven straight hours of the Weather Channel.
________________________________
SUNDAY:
I'm having the Church van pick me up for services today so I can go and thank GOD that this week is over. I will also pray that next year my husband will choose a gift for me that is fun-- like a root canal or a hysterectomy. I still say if God had wanted me to bend over, he would have sprinkled the floor with diamonds!!!

Week One Review

So first I need to clarify something.  One of my goals is no processed food.  What I mean by that is that nothing from a wrapper.  I could go really extreme, but really so much is processed that it is close to impossible to completely avoid.  Cheese is processed, so is bacon, and even ground meat.  All of those things I ate this week!  And will continue to eat.  I am however not eating anything with soy, so the salad dressing I got doesn't have any in it!  I'm not eating any kind of bars either.  The cheese and bacon and ground meat that I get is all organic and grass fed.  Yum! 

One of our meals this week was a roast that I did in the crock pot.  Usually I use those packets of seasoning at the grocery store, but looking at them they have sugar, and things I can't pronounce, which isn't a good sign!  So I pulled out the cook book and made my own.  It turned out awesome, was simple and I don't think I will ever use the store bought seasonings again.  It was 1/2 cup white wine, fresh rosemary, thyme, and parsley, salt, pepper, and garlic.  I added some beef broth and then a bunch of veggies.  I of course didn't use potatoes, but I did use bell peppers, carrots, green beans, and onions.

So this is how the week went:
Day 1 (Sunday)- I felt motivated.  Meals were planned, everything was good.  I worked out at the gym.  Not much else to report.

Day 2 (Monday)- I was starting to have a few cravings and headaches.  I had a session with my trainer that kicked my ass.  I didn't feel great that evening.

Day 3 (Tuesday)- I WANT SUGAR!!!!  The headaches continued and I was super sore from working out.  I managed to make a super yummy protein shake with a shot of espresso.  I hadn't planned on drinking protein shakes, but this one is from grass fed cows and is sweetened with stevia and has very few ingredients.  And the whole 20oz shake was less than 5g carbs.  I also made some kale chips which somehow helped.  Accept for the little monkey who kept stealing them!  But Phew, I was going to survive!  I took a 3.5-4 mile walk with Jack and a stop at the park in the middle.  I walked at a pretty quick pace and even jogged some.  I felt good, but that night my shins started killing me and swelling a bit.

Day 4 (Wednesday)- Most of the sugar cravings were gone.  Thank God!  But my shins were still very sore and a little swollen.  I decided to have a rest day after 3 days of working out pretty hard and being so sore.  I was out running some errands and it kept getting harder and harder to put one foot in front of the other.  I was in a lot of pain by the evening.  Ibuprofen didn't help much so I soaked in a hot bath and just went to bed!

Day 5 (Thursday)- Shins were still sore, but I could walk at least.  I wanted to exercise but something low impact, so I did the elliptical for an hour and actually felt good after, I burned 711 calories!  I also soaked in the hot tub at the gym for a while before getting in the shower.

Day 6 (Friday)- More training!  and everything hurt a bit.  It was the first time since surgery that I did anything with my abs and it hurt a little but I didn't push it too much and I survived. I struggled a bit when I was out longer than I had planned.  I ended up running an errand for a friend and didn't have a snack for me.  I am really good about always having food for Jack, I'm just not quite in the mind set to always have some for me too yet.  I did relatively okay though, I went through the starbucks drive through and got a grande-iced-sugar-free vanilla-breve-decaf, late.  Yes, I was THAT person at the drive through.  I laughed and apologized after I ordered and surprisingly they got it right.  So yeah, artificial sweetener, but still very low carb so not awful there.  I had a full meal for Jack and he only needed a snack so I let him have what he wanted and I finished off the last few bites.  It all helped and worked out. 

Day 7 (Saturday)- Finally a rest day!  Well, from working out at least.  And Jonathan let me sleep in which was very helpful.  I went grocery shopping and stopped for coffee and breakfast tacos on the way, I did get a shot of sugar-free vanilla in the coffee but only at the insides of the breakfast tacos.  YUM!!!  Really "rest" day isn't exactly true, I took Jack to the gym to swim for 2 hours and chasing him around the pool is a work-out in itself. 

Also, got on the scale and lost 6.5 lbs in a week!

Day 8 (Sunday) - We had my niece's birthday party and I managed to only eat the insides of a sandwich.  Then came home and Jonathan and I did an exercise video and Jack joined in, which was adorable.  And had a great meal cooked for me by said husband.


After a week at this, I feel much better.  Thankfully the cravings are gone and it's just a matter of staying on track.  I do meal planning every week, which is super helpful.  I don't always stick to what's on the list but that is usually because of leftovers that need to be eaten.


So, my goals for this week are to stick to the meals we have planned, take my vitamins, make sure I take a bottle of water with me in the car (I'm great about doing this for Jack, but for some reason have a block when it comes to making one for me) and continue to get to bed at an okay time.

And for some cuteness, here is a video of Jack in the swing.  He wants to go Super High and we are using it to teach him to count.  He is getting there!