Monday, October 29, 2012

No Regreats

I can't get this to sound right, the thoughts are scattered, but I'm just going to post it or it will never get done.  Hope you can follow it.

The last few weeks have been some of the hardest of my life.  On October 1st, at about 9:00 in the morning, I got a phone call from my mom's husband that she was in cardiac arrest but stable and they were in an ambulance on the way to the hospital.  I wasn't sure what exactly happened, but I assumed a mild heart attack.  I called Jonathan and he headed home from work, but it's a good 45 minute drive, and after he got here to be with Jack I headed to the hospital.  That is when I got the call from my brother about the condition she was in, and it wasn't good.  They had her in a medically induced coma and were cooling her body temp down to try and preserve brain function.

After I got to the hospital I learned more about what happened.  She had woken her husband up that morning because he had something to get to and he got out of bed and went to do his exercises on the other side of the house and when he came back he found her unconscious with no pulse.  There is simply no way to know how long she had been there.  Ron did everything right, he called 911, started CPR, and got help there as soon as possible.  Sadly, everything that could have been done was done and it just wasn't enough.  On Wednesday October 3rd, my mother passed away at the age of 58.

FIFTY EIGHT, who the hell is relatively healthy and their heart just stops for no apparent reason at the age of 58?  It's so not fair.  In every way, it just isn't fair.

Not two weeks before we were down at Sea World together.  She walked all over the place all day and aside from being a little slow because her knee was bother her, she did fine.  I never heard her complain once.

I hate that this has happened.  A friend of mine put it best, it feels like I've been kicked in the chest by a horse and am trying to recover.  It's very weird that everything else just keeps going as if nothing has happened.  She was my mother, she was my biggest supporter, she was Jack's number 1 fan and his favorite person and life simply will not be the same without her.  She lived for her grandchildren and I am so sorry that she won't be around to see them grow up and to cheer them on.   She started asking for them when I was 15.  No joke, I think she would have secretly been thrilled had I ended up a teen mom.  But I have never seen anyone more excited to finally get grandchildren.

Don't get me wrong, she was no saint!  The woman drove me crazy on occasion.  But I am so glad that I handled the divorce the way I did.  I'm glad that I just bit the bullet and met the new guy and we started doing things with them.  I'm glad that I didn't let any of it affect our relationship.  I'm glad that I said things to her when something bothered me and that we would talk it out.  While I struggled a lot with my relationship with my mom when I was a teenager, as an adult our relationship was good.  I'm so glad that we finally got to that place.  I'm honestly not really sure when it happened, but I'm so thankful that it did.

No one expects to lose a parent when they are in their 30's.  I didn't expect this for another 20-30 years at least.  And I feel so awful for my poor grandmother.  I think she is doing well all things considered, but she has a point when she says that your kids aren't supposed to go before you.

Jack asks about Gigi every day, and usually multiple times a day.  He knows that she died and that she's in heaven now with God.  He asks to visit and to call.  It is such a hard thing to explain to a 3 year old.  The first time we went on the boat after the funeral, he didn't want to go without her.  It was really hard to talk him into going.  He seems to get that we just have Ron here now, but it breaks my heart just a little every time we have to have the conversation. 

It's funny how everything my mom gave us is suddenly invaluable.  From Jack's Halloween costume to the silly little ghosts she made from rags last year, to her beloved African violets that I am now gifted with their care.  I remember the last conversation I had with her the Thursday before everything happened, the last time I saw her at Sea World.  Although the last meal we all shared together was a bit of a disaster with melting down children and a 2 hour wait at the restaurant. 

Here are a few things to take away from this situation and a few things I learned from my mom:
  • Make sure that the people that you love, know that you love them.
  • How to get my way.  The women did not take no for an answer, and I watched her long enough to figure out how it works.  
  • Always feed the animals.
  • Drink wine.
  • Life it too short to live with regret.  If you have something to say to someone, say it. Especially if it makes you uncomfortable, say it.  Have the conversation and don't leave things incomplete. 
  • Allow people to be human and make mistakes.  Even if you are sure it's a mistake, it's theirs to make and they are the one who has to live with it. 
  • Be generous. 
  • Rules are more like general guidelines than actual rules. 
  • Never forget duck food when you go out on the boat!  
  • Go on vacation.  You will never regret traveling with your family!  
  • Figure out how to make the impossible happen for someone else, just for the look on their face. 
  • Spend time with children.   
  • Drink more wine.

Monday, May 14, 2012

Why we Walk

We are headed to Dallas this year for a walk for TSC to support the TSAlliance.  There is a link to their website on the right side of the screen.  The mission of the TSAlliance is to find a cure for TSC while improving the lives of those affected.

TSC is something that we can't escape.  It's an every day reality around here.  We do our best to provide Jack with a "normal" life.  We go to playgroup, we go to the park, we can now have family meals together.  But there is no getting around the fact that he has almost daily seizures.  That half the time our plans change because he is too wiped out from a seizure to make it to playgroup or the park.  That we have to be very careful where we go out to eat because we have to make sure there is something on the menu he can have.  That we have 2 therapy session a week, soon to increase to 4 to make an attempt at getting him caught up.  There is no way around that he is behind in ever area developmentally. 

People often tell me that I am "the perfect mom for Jack" like I was somehow destine to have a child with special needs.  Let me tell you, NO ONE is prepared for anything like this and I refuse to believe that God would plan it this way.  It gets thrown at you and you either step-up, or fall completely apart.  Some people do both.  A vast majority of children in the foster care system have either medical needs or special needs or both, and sadly there is a reason for that.  People aren't picked for this, it just happens.  Believe me, if you ended up with a special needs child, you would have the same choice, and I promise, you don't feel special or at all prepared for it. 

We can't help but feel luck that Jack is doing well compared to some.  We also can't help but feel sad and guilty at the same time when we see children quite a bit younger than Jack do things that he can't do yet.  It a very strange mix of emotions that I don't really know how to put into words.  We are lucky that Jack "only" had heart tumors.  Only heart tumors.  Who feels lucky for that?  We know that kidney issues, eye issues, brain tumors are all still on the table.  I scan his face constantly for any little bump that might be a facial tumor.  Because as benin as facial tumors would be, it would be an outward sign that would set him apart forever. 

I think overall our attitudes and contexts have been pretty good.  Lets face it, no matter what he has or how bad it gets we will always love him to pieces!  He really is ADORABLE and honestly the sweetest child ever.  He loves to give hugs and kisses.  He asks for high fives from his friends and knuckles.  Yesterday on the boat he would scream "hit it!" when he wanted to go fast and we discovered that he is a little speed demon!  He also tries to comfort people when they are sad and if he bumps something he will give himself a kiss and say "all better". 

We are on a roller-coaster and there isn't much we can do but hold on for the ride.  We enjoy the good times and make it through the bad while fighting for him every step of the way.  I can cook, but even that doesn't seem to be doing much good lately.  So this is why we raise money and walk, because the only way to really make his life better, is better treatment, every therapy we can through at him, and possibly a cure.  Finding a cure really is a reach, and I don't know if it will happen in our lifetime, but anything is possible.  I refuse to dismiss it because it seems hard.   

So we raise money and we walk for Jack, for his friends with TSC, and for all of the families who have been put through this hell and who live in it on a daily basis.  Because maybe, just maybe it can help in the long run.  The Jollyville Sertoma Club has graciously bought our team t-shirts and also offered to match all donations up to $3,000.  I am hoping to at least raise that so we can get the match.  All donations need to be made by Thursday evening though so I can pick up a check on Friday morning to take with us to Dallas.

If you are willing and able, please make a donation.  Even $5.00 helps!  Click here and read more about Jack's story and to make a donation.   This little boy is worth it! 

Friday, May 4, 2012

We are still alive over here!

Sorry for such a long time between posts.  I constantly have blog posts running through my head and even a few saved as drafts that just haven't been completed yet.  So I'm just going to combined a lot of things into one and at least get something up here! 

First there is Jack's 3rd birthday.  I can't believe that he is 3 already.  The last three years have been a roller-coaster to say the least, but he is amazing.  He is smart, and funny, and such a thoughtful little boy.  He is definitely not a baby anymore and while that saddens me to some extent, I'm more overjoyed than anything to see him growing and changing and developing. 

He had such a good time with his cousins at his party and it was so much fun.  I'm just going to scatter some pictures from it in here for the heck of it.

Really the main reason I have been reluctant to write a blog post is because we've had a really tough month.  It's crappy news and there is just no way around it.  Jack had 15 seizures this month, which is 5 times more than the last several months.  January-March he had only 2-3 seizures a month and was doing so well.  Still not seizure free, but we could live with a small number.  As much as I hate to admit it out loud, I honestly don't expect him to ever really be seizure free.  I used to hold onto that hope but after everything we have been through, I just can't anymore.  

  So what changed.... well, he had his 3 year well check visit and I allowed him to get one vaccine.  He hasn't had any for over 2 years and he was doing so well that I was hoping that one would be okay.  The doctor and I discussed it for a while and we came to the conclusion that out of the ones he has left (he's close to being fully vaccinated) DTaP would be the best to give him because of the rise of whopping cough.  I have gone round and around about giving him DTaP because the last time we let him have that one was when he was 4 months old and I KNEW he was having seizures but the doctors weren't convinced yet.  That was the appointment when we were referred to neuro to see if it was anything to worry about.  That evening after he had the shot he had a 3 hour screaming fest that was the most awful thing every followed by a sudden increase in the frequency of the seizures and the intensity.   Anyways, fast forward to now when he's had brain surgery and his seizures are relatively well controlled and his immune system is stronger and everyone agreed that he could handle it. 

Do we know for sure that the vaccine caused the increase in seizures?  Of course not.  It is the only thing I can think of that changed around the time of the increase, but that does not mean for sure that it caused it.  However, he will not be getting the last booster of DTaP ever.  I could easily get on my soap box here about how healthy kids should be vaccinated so that children like Jack, who really do have severe reactions and consequences to these things don't have to get them or worry about getting sick, but that's not going to get us anywhere.

Needless to say I feel horribly guilty for letting him have it.  I was weighing if he would have more seizures from actually catching whopping cough (he always has more seizures if he's sick) or more from the vaccine.  It's one of those things that I will just never know and I can't go back and change it at this point so we will just move on.  We have increased his meds and if that doesn't work there is talk of putting him back on the full ketogenic diet.  We will simply have to see what happens.   

As for me, this weight loss challenge is over this weekend.  The last month has been really tough.  My trainer got fired from the gym so they stuck me with this new guy.  It was not a good match!  I'm tired of having trainers who like to show me off, to be honest.  It's like they have some competition going to see who can have the most people stop and drop their jaw at what they are putting someone through. 

I have been stuck at the same weight for a month now and it's ticking me off.  I can understand a plateau lasting a week or 2, but a month is ridiculous.  In that month I did lose 3% body fat so I must have been gaining muscle, but I didn't even drop a clothes size.

Anyways, over the whole thing I have lost 21 lbs, 11% body fat, and dropped one dress size.  I figured that should be at least 2 dress sizes, but clearly not.  Bummer.  Not too bad, but also not anywhere near where I want to be.  I'm just going to keep plucking away at it.  I do feel tons better and I know that I'm a lot stronger so I just have to keep working at it. 

The only other big thing going on is that we are doing a walk for TSC as Team Jack-A-Roo again.  It is at least something positive to put our energy towards.  The link to the donation site is here.  Even small donations help!  Please consider helping out if you can.  We are making an attempt to raise $7,000 in only 2 weeks which is a bit ambitious so we need the help! 

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! 

Friday, February 24, 2012

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!

Uploaded from the Photobucket iPhone App 
 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.

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

Uploaded from the Photobucket iPhone App
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. 

Uploaded from the Photobucket iPhone App
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!

Thursday, February 23, 2012


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)

Sunday, February 19, 2012

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.
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!!
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.
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.
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.
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?
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.
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!!!

Monday, February 13, 2012

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!

Thursday, February 2, 2012

a post about me

There are 2 parts to this post.  The first deals with girlie issues I've been having, so if you don't want to read about those skip down to the bold part that says, "90 day weight loss challenge" and start there!  You have been warned! 

For the last 8 - 9 months I have been having awful, horrible, yucky painful menstrual cycles.  I was cramping like crazy and the cramping would start 3 days before I would even start my cycle, and then I was literally taken out for 2-3 days when I did start.  Like I was taking vicodin, left over from the D&C, and was still in a great deal of pain and hardly able to function.  I knew what it was, because I've been there before and knew the only way to fix it was surgery.  Endometriosis is something I had surgery for back in 2006 and these same symptoms got much better after that. 

There are basically 3 ways to combat it.
1 - birth control.  Believe me, I don't need any extra hormones floating around in me!  I have been on birth control once in my life, for the same symptoms, when I was 19.  I took it for 2 months and said never again.  It was awful.  Really, I was serious when I said never again! 
2 - getting pregnant.  Well, I did that not long ago and am not ready to go down that road again.  A, I'm terrified of going through the same thing again, and B, I have enough going on with the first baby and I don't want to gain another once at this point and pregnancy is not the way to lose weight. 
3 - surgery.  Diagnostic Laparoscopy is the only way to know for sure that it is endometriosis and they simply lazer it off while they are in there. 

So I went with option #3.  The doctor said that this is actually pretty common after a late miscarriage.  He said that normally pregnancy and breast feeding calm down endometriosis but if you have a full trimester of pregnancy hormones and then don't get the late pregnancy hormones and the break from your period during breast feeding, it can actually make things much worse.  Yet another shitty side effect to losing a baby.

Anyways,  I went in on the 12th of January (of course Jack was up all night on the 10th puking his guts up but seemed better by Thursday even though he still wasn't eating) and let me tell you, having that surgery 6 years ago while on oxycontin was MUCH easier.  Last time I threw Jonathan a surprise birthday party the next day.  This time I was calling the dr's office for stronger pain meds the next day.  Not to mention Jack threw up again.  Jonathan was awesome and slept with Jack for several days because I think I spent the first 5 days in bed.  I couldn't sit up, was puking from either pain meds or the tummy bug Jack had, and it hurt to even move.  I'm really glad it's over with and I do not want to go through that again any time soon. 

It was a rough recovery, to say the least.  I am actually still a little sore even though it's been 3 weeks and they told me recovery was 3-5 days.  The good news is that things seem to be a bit better and the doctor said that he thinks this is the last time I will have to deal with this.  He was trying to say that I'm getting old without actually saying it. 

So, on to the next thing...

90 Day Weight Loss Challenge

The gym I go to is having a 90 day weight loss challenge.  It's biggest loser style, so the person with the highest % of weight loss wins.  It's a nation wide competition and here are the prizes:

1st place in both male and female categories:
* $5,000 cash
* 1 year gym membership
* 4 day, 3 night trip for 2 to California, including air fair, hotel, and spa. 

1st place at the gym location is $250 to use on training. 

For those of you who know me, I might be slightly competitive. 

I go this Sunday to weigh in and it all ends on May 5th.  My basic goals:

1 - NO SUGAR!  None.  It's only 3 months. 
2 - No processed foods.  This one should be easier than the no sugar one as we don't eat many processed foods anyways. 
3 - No alcohol.  Okay, if I crack on any of them, this will be it.  I don't drink a ton, but I do drink wine a few evening a week.  It helps to unwind.
4 - Only 1 cup of coffee a day.  Again, this is going to be a hard one.  Especially if Jack doesn't stop waking up for the day between 3 & 5:30.
5 - I'm going to basically eat what Jack does.  Lots of protein and veggies, low carb, no gluten, etc.  I'm not thrilled with it, but it's basically how we cook here and I am unwilling to go back to making different food for everyone in this house.  So we are going to be all healthy and shit.  This does mean no cake on Jack's birthday, but I can make him a muffin and I can have one too. 

Anyways, I will let ya'll know how it goes.  I suspect the first few days are going to be tough, and I'm going to be super sore for the first few weeks, but if I power through it will get better pretty quick.   

Saturday, January 28, 2012

dusting ourselves off

It's been a while since I've written a post, and not for lack of things to post about, but simply for lack of being able to put things in perspective and sit down long enough to post.

We learned a long time ago that there will likely always be something around the corner, medically, with Jack.  That is just the nature of TSC and after the first couple of blows you take, you learn to just expect something at some point.  It has to be monitored and scanned and managed all the time.  We had very high hopes that brain surgery would put us in a situation that we only had to monitor the tumors.  Only tumors.  Even that sounds so un-fair.  We knew that the possibility of seizures coming back was there.  And in all honesty, I was expecting it to happen in a few years.  But even a few years of seizure freedom would have been worth it.  I was not expecting it to happen 42 days after surgery and before he was even fully recovered.  That was a tough reality to deal with.

When I first saw the seizures, I saw 4 in only a few hours.  He had been sick though and what I was seeing could simply have been from stomach cramps.  He also pooped 18 times that day.  I kept trying to look at his eyes because that is how I can see if he's seizing but he would put his head on my shoulder and just tense up for a few seconds, then be fine.  I remember telling Jonathan about it and both of us being concerned, but he was sick with his first ever tummy bug so we figured we would wait and see.  Then the next day we were at the mall (don't worry, the doctor said that he wasn't contagious) and he was riding the little carousel thing that you stick a dollar in and 3 kids can ride.  He looked at me, said, "MAMA" in a very scared voice and reached for me.  I knew by his eyes that he was having a seizures and there was simply no doubt about it.  I scooped him up and held him, he stiffened up and was twitching too.  The lady next to me asked what was wrong and I said he was having a seizure.  She then asked if she could give him some candy.  (I could write a whole post just on that!)  But I told her no and walked away. 

Jack got over his tummy bug, but continued to have a few seizures a week.  We gave up a lot for that surgery, a lot of Jack's independence and care-free attitude, and a lot of sleep too.  We suddenly had a toddler who wouldn't let us leave the room to pee, much less leave the house without him.  Thankfully that has changed and he is (mostly) okay with both of those things now.  He used to never want to sleep in our bed and now that is the only place he wants to sleep.  He was in our bed with us for at least 6 weeks after surgery and now he goes to bed in his bed but moves to our bed at some point in the night.

He still has quite a bit of anxiety so leaving him to cry would not be a good idea at all, and after all he has been through I don't have the heart to do that either.  He has slept through the night in his room once since surgery.  ONE TIME.  Before he would wake up several times but put himself back to sleep, now he wakes up screaming bloody murder.  I actually think he starts screaming before he even fully wakes up because sometimes by the time we get to his room he is back to sleep.  He does fine with us sitting next to him in the rocker, but we don't want to sit there from 2:30 - 5 am.  We are starting to wonder if we ever have another baby if we are going to have to buy another rocker because the 1st child still needs his.  Anyways, we bring him to our bed with us some time in the night so that we can at least all lay down.  A few days ago he decided he wanted to be awake at 4 am and that is when I started a new rule.  No getting out of bed until 6 am.  He can lay there and scream if he wants, next to me of course, so it's just a glorified tantrum, but we aren't getting out of bed until 6.  I refuse.  Both Jonathan and I are a bit tired of getting kicked and smacked in our sleep, but it's really cute when he wakes us up by giving kisses.  He also likes snuggle but he calls it "huggles" which is super cute.

So yeah, we are exhausted and we really don't see an end in sight to this.  Sometimes I can talk him back to sleep over the monitor (there is a button I can press and he can hear what is going on when it is pressed) but he still ends up in our bed at some point.  I don't mind co-sleeping, but yesterday morning I woke up by being kicked in the nose and there simply isn't enough coffee in the world to make up for that.  People with neuro issues are notorious for not sleeping well, especially people with epilepsy.  So it looks like this is just kind of the way things are going to go.  I will say though that Jonathan has been the best husband ever and he is usually the one to go and get him.  He deals better with less sleep than I do and he has been a rock star daddy when it comes to dealing with this. 

Anyways, back to the seizures:  we went in and saw the neuro and the surgeon.  From what we were describing about how the seizures looked the neuro thinks they are coming from the area of his brain that deals with fear, which would explain why he get scared as they are coming on.  He said that during the mapping (when they had the EEG leads on the surface of his brain) the seizures were starting in the tuber that was there, which was clearly damaged brain tissue, and moving to this area behind it that deals with fear, which was clearly healthy tissue.  In theory, you take out the damaged tissues and the healthy tissue is fine.  Kind of explains why he's afraid of everything now though, because they cut right next to that area.  Poor baby!

So they did a 48 hour EEG to see where they were coming from.  (And let me just add that he didn't cry hardly at all while being hooked up, thanks to popcorn!  I was so impressed with how well he did!)

The doc did not talk at all like these were just left over from surgery, though we didn't ask that specific question either.  I do know that most re-lapses happen within the first 6 months.  The EEG came back completely normal.  The bad news about that is that we have no clues as to what is going on.  Are they coming from the area that deals with fear suggesting that they missed a spot or are they coming from another tuber?  We have no idea.  What kind of seizures are they?  Also, no clue and know what kind they are may direct us towards or away some meds.  The doc said we would try meds before "looking at more drastic measures."  I basically told him that we are not going through surgery again any time soon.  The good news is that it was the FIRST normal EEG he has ever had.  That it in self is a miracle.  He always had these spikes going on, even when he wasn't having seizures.  It's the static that was there and probably a big part of what was slowing down his development.   So for that to be gone means his EEG is only abnormal when he is seizing, which is awesome news.

And speaking of Jack's development, it is skyrocketing.  I think it was going at a quicker pace before the seizures came back, but he is still taking off and it is such a joy to watch.  His little personality is also coming out and the boy is just a ham.  It's hysterical.

Yesterday we had a conversation that went like this:
Jack: "kitchen"
because he wanted to go in the kitchen and play with his trains in there.
me: In an attempt to get him to say two words together I point to my mouth, "in kitchen"
Jack: points to his mouth "KITCHEN" and then runs to the gate and says "in"   


And he is very much not a baby anymore.  I think I asked the doctor if they took that out too while they were in there.  The thing about having a special needs kid is that all of those stages that you have to get through as a parent, the ones where you tell yourself that it's a stage and it will past, last so much longer.  But the baby phase for us is now totally over for now (with the exception of wanting to be rocked still) and there is no doubt that we have a toddler.   

We correct how he says things often in an attempt for him to become more understandable.  One of the things he has a hard time with is the "s" sound.  So we were saying "ssssssssss, snake" just to get him to make the sound.  Now any time we try to correct him in any way he says "sssssssss, ake".  So I could be encouraging him to say 'potty' instead of 'paw-paw' and he says "ssssss, ake".  Goofy kid!

So surgery was not unsuccessful.  I can't really say it was completely successful either, but it is not something that we regret doing.  Jack is slowly becoming more active again and even occasionally goes down a slide now at the park, something that he was terrified of not long ago.  He is also making progress in swimming again, which again was something that freaked him out not long ago. We just want him to be able to enjoy things again, and he is slowly getting there.

One thing that he totally enjoys is eating.  Man, the kid can eat.  He may not sleep worth a damn but at least I know that I don't ever have to worry about him getting enough.  Eggs, bacon, nuts, and strawberries are his go-to foods.

We have another appointment in a few months with the neuro, but for the time being we are leaving things as is.  He is having anywhere from 4 seizures a week and he just went his longest stretch without one which was 2 weeks, so we will continue to track them and in the mean time, just enjoy life as much as possible.  He really is the cutest kid ever and I love seeing him grow and play.

I hope you can follow my rambling thoughts in this post.  I'm not sure as I'm a bit all over the map right now.  A post about me and what's been going on is soon to follow. 

Sunday, January 1, 2012

So long 2011

Don't let the door hit you in the ass on the way out! 

For us, 2011 had some awful times.  The big ones that stand out are that we lost a baby that is still very much missed and Jack's only semi-successful brain surgery. 

We had one glorious month of seizure freedom, but that was it.  I was hoping for a couple of years at least.  Even just 2 years without them would have been wonderful.  I know that another tuber is likely to become active, I just didn't expect to see them return so soon.  It was, and is, crushing.  No way around it.  We're already back into the meds, EEG's, and doctor's calls.  (More on all of that later.)

Looking back though, I can't say that 2011 wasn't a bad year.  It has had it suckiness, but overall we are all still okay.  Jack is awesome and sweet and amazing.  I'm still having female issues related to losing the baby and we are just praying that they can be worked out right now.  Jonathan and I are still married, and if we could make it through the stress of a miscarriage and brain surgery on our boy, I think we can make it through just about anything.  And we have people who love us and support us. 

In 2012 I plan to cherish every happy moment I get with my family.  The simple joys of having meals together, all 3 of us snuggling in our bed together, and every new word and developmental inchstone that Jack accomplishes.  The huge advantage of having a child with delays or special needs is the little things that come naturally to most are worked for and cherished so much.

I also plan to lose about 50 pounds so I can kick some ass.