Two Steps Forward...

and one step back. Brady and I made a quick trip to Utah over the weekend for my sister's bridal shower and my brother's mission homecoming. It was a wonderful visit full of quality time with both sides of the family. Brady loved playing with his cousins, but for some unknown reason had a seizure during the trip. He had another seizure in the bucket swing at school yesterday morning so there will be no more playing outside until the weather cools down.

I took the seizure counter down for now because I just don't have it in me to watch those numbers climb then fall back to zero again. Brady's Keppra dosage was increased and we also switched back to the brand name drug as we recently started using a generic version thanks to pressure from our favorite insurance company. We are hoping that the drug switch will fix the problem... fingers crossed.

I have been MIA from the blogging world for a bit as I made a goal to stop blogging at work. Today I'm granting myself an exception because I'm grumpy! I hope you all are well and we will be checking in soon!

What A Difference A Year Makes

Yesterday Brady reached an incredible milestone that we often wondered if he would ever reach. In the late afternoon Brady hit the year mark for being seizure free. Words cannot describe what a difference this has made in all of our lives. I know we are not out of the woods by any stretch of the imagination, but a break from all of this has been much appreciated. Seizures are very unpredictable and can show their ugly face at any time but for now we are going to enjoy the benefits of living life seizure free. (I wish Brady could write this post himself because I'm sure he would be able to describe in much better detail how much this has changed his life. Those stupid seizures used to wipe him out and I can't imagine the headaches he must have dealt with on a constant basis.) It seems like yesterday that I was feeling the all to familiar range of emotions that would overtake me each and every time I watched him have to endure those 3-4 minute seizures that seemed like an eternity. We are so grateful for family, friends, modern medicine (namely Keppra), thoughts, and prayers that we know have all contributed to to helping Brady stay seizure free for this time period. We celebrated the event with cupcakes and numerous party favors from the movie "Cars"(also a new milestone...interest in a full length movie!!).
It is obvious that Kajsa usually does the posts and has fun pictures and comments to go along with them but she has the camera at work and I am not as creative as she is but I wanted to add one final thing to this post. Yesterday when I was thinking about all of this I went back and found the lyrics to a song that I had written (posted below) when I was having a hard time dealing with the seizures and some of the other challenges of raising a child with special needs. Raising a child with special needs has changed my life in so many ways. It has opened up a whole new world of emotions, questions and answers, setbacks and milestones, but most of all it has given me a life and a world filled with love. An unconditional love that goes both ways and is much deeper than anything I ever thought possible.
We love you Brady.
Congratulations on yet another milestone!

Here are the lyrics to the song:

"No matter the reason"

I have a hard time believing
That things happen for reasons
I just don't agree with what you say
Am I missing something
I must be missing something
There are things about this I would change

I'd change the pain I see within your eyes
I'd leave a peaceful smile
I'd give you strength to sit up
I'd give you strength to eat
I'd stop the charge before it starts
I watch you shake it breaks my heart
I'd calm your precious body
So you can sleep the night away

I have a hard time believing
That things happen for reasons
It just doesn't seem to all make sense
Some say that we're chosen
Why is anyone chosen
I see the kids...their moms...I feel their pain

I'd change the pain I see within your eyes
I'd leave a peaceful smile
I'd stop the tears from falling
When you feel you are to blame
I know how much you love your son
I love him too with life undone
We both could use some peace of mind
So we can sleep the night away

We try and try with doctors, tests, and therapies
We run around and second guess ourselves when we don't see...we don't see

But you see
Now I see
You be you
I'll be me
It's okay
We're alright
And I know
You'll do the best you can
In life
I'm glad I was chosen to be here for you

You want to be a doctor
I won't take that away
You may not frame the paper
But you'll heal me just the same
You want to be a teacher
Then I want that just the same
You may not find the words to say
But you'll teach me everyday
With your love...Your love
With your love...Your love

No matter the reason
You've given my life new meaning
I'm glad I've got you here with me

Device Decisions

We had a very productive and overwhelming meeting with the device people on Tuesday afternoon. Present at the meeting were the following:

• Brady's Teacher
• 2 Classroom aids
• School Occupational Therapist
• School Speech Therapist
• Home Speech Therapist
• District Speech Therapist (specializing in devices)
• Southwest Human Development Speech Therapist (the state's contractor for device evaluations)
• Southwest Human Development Occupational Therapist

Do you think we have enough support? They brought several different devices to demo and they wanted to observe Brady using the different models to determine which was most appropriate for his needs and abilities. Brady was fairly cooperative and wow'd them with his love of buttons. At one point, one of the reps was covering a few buttons at the top of the device and Brady was trying to shove her hands out of the way. He wanted sole control! The great thing is that we know he will want to use one. The challenging thing will be getting him to use the device for communication and not as a toy.

It's not yet official but Brady will likely be approved for the Prentke Romich Vantage Lite.

This is a huge, huge deal! It is known as one of the most cutting edge and complex devices on the market. Brady will be able to use the same device all the way through high school as it facilitates reading and writing. For now we can program it to be more simple. The reason approval for this device is so huge is that, in most states or school districts, it's extremely difficult to get approval for something so complex and expensive. We also have to have support at the school level because somebody has to train everyone at school how to use it. Luckily our district supports this particular device and Brady's home speech therapist has experience with it as well. Did I mention Brady's new device will cost more than my car is worth? We are very fortunate that we don't have to fund this ourselves as many other parents do in order to get the best device for their child.

It's going to be a lot of work learning the software and how to program and back up everything on a regular basis. Even more work will be encouraging Brady to use the device in an appropriate manner. I'm going to find ways to cut back at work because I want to put everything we've got into this. I want to give this boy every opportunity to finally have a voice.

Self-Taught

No thanks to his parents, SOMEONE has learned some of his ABC's. I give full credit to the VTECH Write & Learn Letter Pad...

and the Leapfrog Fridge Words Magnetic Word Builder.
The first we keep in the car and Brady pushes the buttons over and over... and over. Just for fun, so we thought. The second is on our fridge and Brady prefers to hit the middle button juuust right so it malfunctions and makes a horrible static sound.


A few nights back Troy and I were discussing how Brady obsessively pushes the same buttons over and over. His stimming has escalated lately and we figured the button pushing was no exception. On a whim I asked Brady to touch certain letters. He did so with 90% accuracy. We have tested him a few more times and, while he doesn't know all of the letters, there are several that he always gets right. I didn't know whether to cry with joy or with sorrow for the extent by which I may have underestimated him.


It's incredibly difficult to understand this boy's capabilities because he is almost 4 years old yet he doesn't speak. Not a word. He used to say "yeah" but he lost his one and only word. I don't know where it went or how to find it. He can say "sssss" when (and only when) he is on the swing. Occasionally he will babble and we may hear a "g" sound or "v" sound. He has lost (or refuses to use) most of his sign language. It's hard to tell if he is willing and unable or able and unwilling to improve his expressive communication.


We have a hugely important meeting tomorrow at the school. Brady's teacher, aids, speech therapists (he has more than one) and a speech device representative will all be there. I am praying that an augmentative communication device will be the answer. I have seen some demos online and they use the same PECS pictures Brady has learned to use and a computer will generate a voice as he chooses a picture. Somehow technology has allowed for sweet-sounding children's voices and not strange, robotic computer sounds. I hope, hope, hope this is the answer for Brady. I would love to hear what's on his mind.

Thankful

300

Brady has been seizure free for 300 days! It was exactly one year ago that he was released from the Epilepsy Monitoring Unit and what a difference a year makes. Brady has had only one seizure since starting the new medication and thankfully he gulps down his Keppra twice a day with no complaints.

It's hard to explain the shift in our quality of life over the past year. Brady used to have what we called his good days about once a week. He was happy and content the whole day and we would take him to the park, the store or a restaurant without much worry. The rest of the time he would seem to be in some sort of distress. He was irritable and tired and seemed sensitive to loud noises. We babied him on those days and prayed he wouldn't seize. I think he must have had horrible headaches a lot of the time.

Today he pops out of bed every morning with a huge grin and goes about the business of being a 3-year old boy. He is obsessed with vehicles - the bigger or louder the better. He loves wrestling, TV and stroller rides to the park, In N Out, or Barnes & Noble. He loves going to school and playing with Jessica in the afternoons. He adores other kids and doggies he sees in the neighborhood.

(giving Mom directions to the park)

Brady is thriving physically and is a pro at walking now. There is less and less carrying and more hand holding. So much has happened that I thought might never be possible. With all of the strides Brady has made there are certainly new issues that have popped up. We now need to turn our attention to his behavior and the fact that he has regressed over the past year with respect to speech and sign language. But I am thankful that we are able to focus on other areas proactively rather than just surviving each day.

Look at this kid. Not a care in the world - just as it should be.

Holidays 2008

Better late than never. We had a wonderful, 10-day trip to Utah for Christmas holiday. I'm still not in the habit of taking advantage of picture-worthy moments and events, but here are a few that I managed to snap... or, ahem, stole from someone else's blog.

It's tradition to open presents at my parents' house on Christmas Eve. Brady loves the interactive Elmo he got from Grandma.

Connor is the only other grandchild on my side of the family. He and Brady are still very close, despite the distance between their respective houses. They spent many Christmas break afternoons playing side by side. I miss this kid so much! He still calls me Kajsee.

My dad and younger sister Alexis (displaying some VERY warm socks guaranteed to keep her toasty even in Logan). Okay, I thought my camera-dodging skills were pretty sharp. Look how my mom has perfected "the lean back" in order to avoid being in the shot.

Books, books and more books from Mom & Dad. All books had wheels attached to them, of course. We open the big presents at home because 7 suitcases full of stuff do not go well at the airport. Also, Brady hates gifts, the unwrapping of gifts, and most things Christmas.

The immediate reading of aforementioned books.

We crashed Darin & Janet's Christmas morning extravaganza. Since Brady hates unwrapping gifts and doesn't yet get the whole Christmas thing, each year we have picked a place to show up early on Christmas morning and watch the fun.

We spent the rest of Christmas day at Crystal's house with Troy's family. Brady loved watching the neighbors plow snow through the front window. It snowed so much that day we all stayed overnight rather than braving the roads.

Mom & Brady sacked out during our impromptu sleepover.

A newly discovered love of Ms. Pacman.

*I have to make note of the fact that I did not take ONE group family picture and very few of family members. What the? I downloaded these and realized I have a habit of only snapping away at Brady. Jeez. I will do better next trip.

Later, we had a fun visit with the Culleys, during which not a single photo was taken. Just imagine Brady raiding Luke's pile of new Christmas toys and Luke graciously sharing, as always. We love catching up with this family! The Twilight fan extraordinaire gave me a copy of the first book. Ahhhh.. I LOVE having a good book to read while on vacation when there's no guilt about skipping out on responsibilities around the house. I had been feeling out of the loop with all things Twilight and now I am hooked. It was very suspenseful and left me really wanting to see the movie. Thanks, Jenn!

Below you will see me experiencing my dream afternoon. Reading a good book while snuggling Brady through an entire nap. I would do this every day if possible.

We also had a great night out with the Rhodes. Jane, please forgive me for blatantly stealing this photo from your blog. My photos didn't work!

We had a tastey barbecue dinner followed by a trip to the greatest place on earth... a shop FULL OF RICE PUDDING! All (okay, most) of my dreams have officially come true. Then we went to the movies and saw 7 Pounds. Troy and I usually make it to 2 0r 3 movies per year and this one did not dissapoint. We love visiting the Rhodes and it's nice to see blogging friends in person once in awhile. Speaking of which, we all stopped by the Staker's house. I think our wedding was the last time we saw them in person? I hope I'm wrong - that means it's been at least 5 years. I finally met their four beautiful boys, including baby Bronson. It was wonderful to to see them all. Thanks for letting us stop by!

Our Utah trips are always too short. I wish I took more pictures and I wish we had more time to visit with everybody. As always, thanks to Mindy & Scott Taylor for letting us show up unannounced. Every time I see Mindy I kick myself for not showing up at her house more often! I love that we can pick right up where we left off... even if it has been a year. She has finally given in to Facebook... it's only a matter of time until I can see her on blogger!

Okay, I will end this enormous post with my favorite picture of the trip. This is Brady getting bundled up for the first time, slightly baffled by the concept of wearing a hat. He is trying to sign "Brady wants" as in "Brady wants this hat off." Instead, he ended up signing "whaaaaaaat?"