Wednesday, July 20, 2011

September 21st, 2011

is the date of Jack's 1st surgery.

I know that I owe a post about how we got to this point, what has been going on with his health and all of the tests. I have been taking care of a child going through a med change though so I never really know what my day holds for me. Sometimes he's a perfect little angle, and other times he's a cranky toddler who doesn't know what he wants or needs. Thankfully he's always a sweet little guy, even when he's grumpy.

Long story short, he is a surgery candidate. It is currently scheduled for the 21st for them to go in and place EEG leads directly on the surface of his brain and then hook him up and monitor him for 5 days. It may not take that long, it all depends on how many seizures he has and when. But based on what they find, they will determine exactly what they need to remove and then the surgery to actually remove the seizure center is scheduled for the 26th, but that date is flexible.

I am excited, nervous, hopeful, and terrified all at the same time.

We meet with the surgeon and our neuro on September 6th for our pre-op stuff and to ask questions. When I asked our neuro if this was the point that they start prescribing high doses of xanax for the parents he just laughed at me... I was only partially joking!

Tuesday, July 5, 2011

What I'm thankful for today

I owe ya'll a post about our trip to Houston and all of the medical stuff, but there isn't much to report other than we went for the scans.

I've found that on occasion I feel sorry for me and Jack lately because of how difficult our circumstances make life sometimes, (and I think part of that is lack of sleep) but I also know that we have it easy compared to some. So I'm just going to make a list of what I'm thankful for:

  • That Jack can walk, run, get into things and make a mess like a little boy is supposed to.
  • That he is a happy kid, for the most part anyways.
  • That he can tell me when he needs something to eat or drink.
  • That he is learning to talk and communicate! He has the sweetest little voice and even though we don't always understand him, he does try and I know that one day we will.
  • For his hair, he has really great hair!
  • That I have the ability, knowledge, and assistance to cook his meals and to find things that he likes.
  • That he goes through normal picky eater phases. Because it's normal for kids to do things like that and even if it's frustrating at the time, we are always thrilled with normal.
  • That I have the sweetest, most polite toddler on the planet. He says please (or "eeese") and thank you ("tink chew") even when he is upset.
  • That he sleeps pretty well, he can't help that seizures wake him up, I'm just thankful that he wakes up from them!
  • That I get to stay home with him and be the one to feed him, change him, and play with him.
  • For boat rides!
  • For people in our lives who try to be understanding and accommodating, even if it doesn't always work out! LOL.
  • That I have a wonderful husband who helps out so much with Jack and around the house. And he can cook too!
  • That we don't have to move yet and that Jonathan has so much time to look for a new job.
  • For blankies
  • And air-conditioning.
  • And coffee!
So in short, this post is in honor of those who don't have it so easy. For those who have a kid who is g-tube fed and can't be a picky eater, for those who's kids can't walk and run and make messes, and for those who have never heard what their child's voice sounds like. Thank you for reminding me how amazing my life, and my little boy are.