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!