Monday, March 26, 2012

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:

Uploaded from the Photobucket iPhone App

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


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! 


Sunday, March 25, 2012

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!

Wednesday, March 21, 2012

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.

Uploaded from the Photobucket iPhone App

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!