Thursday, February 24, 2011


It has just been getting crazier around here...we actually did not think it was possible!

The truck is packed and gone. It was kind of like herding cats. Cole has had more major seizures in the last two weeks than he did in the last two months. My new hard side suitcase that I purchased to pack all of the KetoCal, IV pole, pump, meds, etc just lost a wheel. Brian's flight was cancelled, so we had to go to the airport-bring him home for a few hours, then find him a ride back. The hoops you have to jump through to bring oxygen into an airport are ridiculous! Thank goodness for family members/MDs ;) I am not sure that I want to tackle the process of trying to figure out how to get 8 oz of liquid KetoCal through tomorrow. It is surprising what did not make it on the the picture on the wall that we pass every 5 minutes. The chaos is turning Cole into a permanent angry elf. Lots of snot and other bodily fluids are still flowing. Camping in your house, really isn't that fun. It looks like we have squatters, just random piles here and there. We should charge admission for the death-defying stunts and clown show that is our life right now.

On the plus side-I have gotten to squeeze in some quality time laughing and crying with dear friends. My stories provide comic relief for others who think they are going through a bad spell. I am helping to plan one of the most beautiful baby showers ever's going to be fabulous! I hit up Lugano one last time before our departure-wow, still best place in SLC, according to me. Got a gel manicure for the first cool. I was scratching things off of the kitchen counter and it still looks fresh.

If you need a laugh, just think of me facing my brother-in-law next week and having to go through that awkward "Hi-last time I saw you, you were partially clothed and unconscious" moment. Me, not him.

Laughing about it to keep from crying about it, is the theme for the week!

Saturday, February 19, 2011

Ode To A G-Tube

oh g-tube how i love thee
let me count the ways
alas, there are too many
i am so glad you came to stay
in your short existence
you have repeatedly saved the day*

Oh, blessed g-tube! It kept us from checking in at Primary Childrens yesterday. We could do exactly what they would have done for us there, with multiple pokes, here at home.
I spoke too soon. Cole did indeed contract whatever funky flu we have and spent the majority of yesterday seizing. We had to give him rescue meds 4 times. That, is a lot. His fever spiked at 103.5 and would not go down and we had a very, very sick little boy on our hands. However, we were able to give him fluids and meds through the tube and kept him out of the ER, where he probably would have caught whatever was floating around.

I don't want to repeat this week anytime soon. Major seizures, chaos, moving and stress. I am so grateful though that I didn't have to add hospital visit to that list!

*this has absolutely no iambic pentameter, ABA format or anything remotely resembling proper poetry. It's just for fun!*

Thursday, February 17, 2011


Sleep deprived, Sick, Stress.

Perfect combination for seizure. It was a lovely 20 months. We'll just have to start a new countdown;) I was naive to think I could make it through this move without one.

So, on top trying to wallow through one of the nastiest illnesses i have ever had; I got the present of sore muscles and a macerated tongue and lips. Brian and I have never been this sick, together, for this long. Perfect timing, eh? We are counting our blessings and so far Cole shows no signs of illness. If he got this, it would send him to the hospital for sure. Praise the g-tube! I'm beginning to wish that I had one!

Thank goodness for our heaven sent grandma! Without my mom, we would have just had the neighbors come over and put everything in garbage sacks. The body aches and high fevers are rendering both of us pretty useless. With her help, I think we just might make it. I have no idea what we are going to do without grandma and grandpa within a few hours. They have saved us more than once in the last few weeks.

The next few weeks are going to be full of organized chaos, adventure and hopefully a little bit of fun. A much better combination.

Monday, February 7, 2011


Who knew people that go to church for three hours, follow a whole bunch of health guidelines, try to be service oriented and have "the more the merrier" attitude when it comes to family size, could be so violent? We did. When it comes to church basketball, that is! ;)

I am competitive. It's in my genes. I may or may not have had a Wii inflicted injury over Christmas break. Brian is competitive too. So much so that he decided to body check a guy that fouled him and did not get called for it while playing church ball. He got a bloody lip...and cracked ribs. X-ray confirmed it, NEVER underestimate the skinny guy! I remember my dad coming home bleeding multiple times over the years when he would play basketball. I think he even got stitches once? Or maybe he gave someone a wound big enough that they needed stitches? I'll have to clarify that one.

So while Brian has been turning a simple basketball game into a full body contact sport, or possibly living out his WWF dreams, and wrapping things up at work; we have been busy around here. I have been shipping Cole out most days so I can concentrate on the "Sort and Separate". He has been having a rough time adjusting to all of the chaos around him. He keeps wondering where the dogs are, where the car is, why are these boxes here? He is acting out by doing things like running into walls and falling on the floor, to get that deep tissue pressure that will reset his nervous system. Lots of screaming in the has been rough.

During all of the packing and the selling and the cleaning out of the freezer....I made three different kinds of steak on Saturday-WHOA (it was good); we have had multiple messages of sad news. Life is rough. Whether you have a child with a disability or not. We all struggle. I have yet to find anyone whose life is perfect 100% of the time. There were just a couple of reminders this week. Two children with Dravet passed away and another one might be taken off of life support today. One child, who was 8, died because he contracted the flu. For a disorder that only affects 1,000 people, losing three in one week is devastating. One of my dear friends lost her second child, in almost exactly two years, yesterday to another rare genetic disease. Life is short, whether you have a mutation or not. Enjoy living.

Today when Cole woke up, I convinced him that it was not morning yet. I took him into my bed and just cuddled with him for an hour. We watched a little Mickey, and talked (as much as we can communicate). Then we got up and had a little dance party before I sent him off so I could get some more accomplished. Take tender moments like this, even in the midst of what could be the craziest time of your life AKA moving across the country. You never know when someone you love may be gone, whether they are 3 months or 80 years old. Take the time to tell someone that you love them. They just might be having a rough day.

P.S. I love you guys!

Sunday, February 6, 2011


Gone: The car I have driven for seven and a half years. My first "I'm a grown up" dog. Most of my beautiful bedroom set that I spent over a year researching before I found the "perfect" one. The cedar chest my parents gave me for my high school graduation. Can't even get into what saying good-bye to the house has entailed.

Replaced with:
Hope: For the future, for Cole, for important people to recognize just how wickedly talented my husband is.
Faith: That we will find the place that is going to be the best for Cole, for school to provide for his needs, that we will make new friends easily.
Joy: That I can finally, after three years of trying, do something that is totally within our control to make a direct impact in Cole's condition.

Never Gone: The memories I will carry in my heart of family and friends and the time we spent here together.
Photos by Capture Me Candid