Trick-or-Treat?!

Mason's first trick-or-treating adventure occurred this year. We loaded him up, mickey costume and all into the wagon and followed the cousins around the block. Mason got a few things in his candy bucket, mostly things he can't have...but when we got back, he devoured half of a reese's pb cup. So many kids to see!

The rest of our trick-or-treating crew - two witches, a vampire, a bumblebee and buzz lightyear!



Hi!

Never a dull moment...

One weekend each year, the Konkol and Mrdutt families get together to cut wood at the Mrdutt farm. They do this as a "thank you" for allowing everyone to use the land during deer hunting season. It's a boys weekend, but the girls go along to play inside with Mason, and take some time to go shopping. This year, George, Mark, Ben, Chris, Jim and Randy all spent the day cleaning up some major wood piles.

While the boys worked away, the girls went shopping. Mason, Barb, Katie, Mom and I all piled into our trailblazer and visited the nearby Grain Bin Market and Bakery, and then the Country Cabin. Mason wasn't in the best of moods, as he is fighting a slight cold, so we decided to head back to the farm. The trailblazer was acting up, so Mom, Katie and I piled into Mom's Buick to head to Pleasant Valley Tree Farm to do a little more shopping. Barb was nice enough to stay home with Mason.

(Note: The trailblazer was in all-wheel drive, so it was "missing". Oops.)

The tree farm was very busy, with lots of people checking out the corn maze, the many kids activities and the hay ride. For us it was a bust, as we were craft shopping and their store had already transitioned from "fall" to "Christmas". So, we headed back.

Mom was driving, and we were pulling from Hwy 25 to Hwy FF. I was laying in the backseat, fighting a slight headache I'd had all day and Katie was making fun of Mom because she started slowing down about a 1/2 mile before our turn. We were about to turn left, waiting for a truck to pass, and then slowly started our turn when....

Crash.

I jolted up to our car being plowed into the ditch. We had no idea what happened, it happened so fast. Katie and I were okay, but we looked over to Mom and she was bleeding from the head. Mom was asking what happened, and I was getting her bleeding under control while Katie hopped out and checked on the other car. I called 9-11, as did another person that stopped.

Thankfully all of us are okay. We aren't sure about the other couple from the other car. They did not appear to have any injuries but the man was airlifted by helicopter because of some memory issues. The woman complained of chest pain. We never did catch their names.

Had that car hit only 1 split second later, who knows what could have happened. I'm not sure Mom would still be here. I was also on the driver's side in the back, so who knows...

We took a few pictures of the damage:





We made the news.

The one thing I'll always remember from it was when Mom asked one of the EMT's to move slightly to the left as they were talking to her, to cover up her view of the big white cross right outside her door. This corner has a history in that neighborhood of being unsafe.

Regardless, it was one of those moments that scare the crap out of you and make you realize how lucky you are to be living. You count your blessings.

I'm going to go hug my boys now. :)

WARNING: Dramatic Post!

I struggle to find a way to start this post and not have everyone out there scared that I'm losing my mind...because some days I truly feel like I'm losing my mind. Days where I can't focus on anything for more than 2 microseconds because my mind is flooded with horrible, unrealistically insane thoughts and I have a pounding headache to the point I think that if someone with a cheery smiley face comes up to me I just might jump at them and literally bite their head off.

Days like this S.U.C.K. Days like this make me want to drop everything I'm supposed to be doing and run home and crawl into bed and not deal with any of it.

Then the realistic Jen comes back.

I will try to keep all the overly optimistic people in mind as I write this so that I don't scare you too much, but just so you know, I am NOT the overly optimistic type and overly optimistic people drive me crazy...so please, keep that in mind also.

Today was Mason's medical genetics appointment. The last one we had was at 6 months of age. I've been putting this appointment off for 2 years...mostly because I didn't think it had value...I mean c'mon, we've gotten his diagnoses...what else is there to know? I also put it off because I didn't want to deal with what I knew was going to be said.

Our first genetics appointment was with a Genetics MD and a Genetics Counselor. I believe that they do this to have the "medical" person in the room with the facts and the counselor to make sure you are mentally okay with what they are saying. We had both today, too. The MD kicked things off by asking about Mason's progress.

MD: So what can you tell me about Mason's development?

Me: He can sit unassisted for a little bit, is starting to roll, is starting to take steps.

MD: So can he stand holding himself with the help of furniture (or anything)?

Me: No.

Michelle: If he's sitting on a couch, eventually he will fall to the side, he can't hold his trunk in one place.

MD: Okay, so this is what I think...

Prepare to have a round of bullets unloaded at your chest at point blank range...(again, drama)...

"Because we've seen what Mason's progress has been over the past 3 years, which has been very slow, it is my medical opinion that he will never be able to walk. He may be able to take steps, which should still be a goal of yours, but he will not be able to walk himself around as a normally functioning adult".

UGH. Pause for me to collect my thoughts...

Then we got talking about his speech. Mason should be able to talk...and its not the "system" he's been given that is preventing him from talking, its the brain to organ connection. Mason's cortical dysplasia is the biggest inhibitor of anything for him. It is what has caused his tongue thrusting, muscle inconsistencies, cerebral palsy and developmental delays. If Mason had VCFS alone, he would be a highly functioning individual. His VCFS symptoms are definitely on the lower end of the seriousness range. It's the cortical dysplasia that fucked everything up. Pardon my French.

So, again, in the MD's medical opinion, Mason will never be able to communicate through speech or signing. His brain cannot send the messages to his hands or his voice to communicate the way he needs to. It was at this point that she brought up the possibility of other devices, such as devices with pictures that he can hit to show what he wants or "switches", where he can answer "Yes" or "No" when prompted with questions. She explained that it can be very frustrating for individuals like him to communicate without adaptive equipment. (I agree - but for the parents also!)

Up to this point, I did not picture myself with a full grown son moving around assisted in a monster metal contraption, wiping drool from his face, having him move a switch to answer me yes or no. I just didn't.

Whew...Lastly...

There is a tiny chance that the cortical dysplasia is not a result of the VCFS. There are cases of VCFS with cortical dysplasia, but very few. Our Genetics MD is going to send Mason's brain MRI to a nationally-renowned brain geneticist. Talk about medical advances...apparently he can view the images to see if they suggest that the two are not genetically linked. If he suspects that they are separate, we may get more genetic testing for Mason. If Mason's genetic tests show that the cortical dysplasia is from a different gene altogether, it may be necessary for Chris and I to have more genetic testing....which again, means that the idea of more children is on hold.

Keep in mind that this is a very tiny chance...but part of me wants that confirmation before making a decision for another child. I mean, Chris and I have proven that we can handle a lot, but let's not push the limits here!

So baring all the other unimportant details, that was my day. My super crappy, head-pounding, tearful day. I'm still considering the "drop everything, go home, get into bed, ignore it" plan...but I'll get over it. Life goes on. At the end of this day, I still have an incredibly supportive family, a great husband and a cute-as-hell, happy son.

But for now, allow us to drown in a little self-pity.

You know what this day needs? A simple "Hi".

Simply "HI"

If this post seems a little different the reason may be that this is Chris and not Jen. Yea, yea I know I don't say much on here. I would like to think that is because Jen does a wonderful job at this and I save my post for those very exciting times that merit my comments. Well tonight is one of those times. I was down cleaning up the kitchen when I heard Jen yell my name, and to hurry upstairs. Jen and Mace were playing on our bed and she asked Mace to say "Hi". After some coaxing and fighting a huge smile Mace said HI. I know it doesn't seem like much, but the last round of seizure took that word away from him, and we never knew if he would get it back. I'm so proud of our little man.....

HI HI HI

~Dutt

Happy Anniversary sweetheart!

I've been married to this great man for 4 years. For 4 years, this guy has put up with me and all my craziness...and that alone has earned him his angel wings, I'm sure.

Mason and I are so grateful to have such a wonderful man in our life...keeping us happy, keeping us laughing, keeping us safe and keeping us loved.

Happy 4th Anniversary Sweetheart!

The Adventures of Mommy Mrdutt

Being a mom is full of adventure. I've done things as a mom that I never imagined I would have the stomach to handle. When my son is constipated, I've assisted with extraction. When my son is sick, I've had him puke on me and will sit in puke for as long as it takes to get him back to sleep through a sleepless night. When he has boogers, I pick 'em. Everybody has seen me do it.

Tonight topped the crazy moments of mom-hood...for a mom that can handle just about anything now. For those of you with weak stomachs...do not read on...

Mason was in his stander, watching Mickey Mouse (who else), while I was enjoying a glass of wine and catching up with people on facebook. Mason was starting to get annoyed (aka tired) so I walked over into the living room to let him out of the stander and change his diaper. I had forgotten that his G-tube extension set was still attached and looped through the stander, so when I pulled him out, the entire Mic-button came out...of his stomach.

I FREAKED. We thought this could happen at some point, as the balloon holding it in can shrink over time but the balloon didn't look small at all. In fact, its usually filled with 5 ccs. This one still had 4 ccs in it! (for those you wondering what CC's are, its a unit of measurement, same as mL).

I laid him on the floor, called up to daddy, and we put in a new button. They aren't kidding when they tell you its important to have an extra on hand. We could have put the old one back in but it was due for a change anyway...I had even placed the order for a new one today!!!

So of course, the first thing I say to Chris after the new one is in and Mason is calmed down...I need to blog about this....