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?"

For You, Grandma

Christmas Card Rejects...

It was so hard to choose...

Naughty or Nice?

We just decorated the house for Christmas and, for the first time, someone noticed there were shiny ornaments to be yanked from the tree. Brady has developed in leaps and bounds this past year. In the same year that he became both mobile and aware enough to harass the tree, he was also smart enough to wait until both of us left the room to have at it. He doesn't realize I have evidence...

Poor Frosty is still hanging by his ski boots because I get a kick out of seeing him like that every time I pass by the tree. Not only is Brady skilled enough to remove the ornaments, he's also smart and naughty enough to attempt hanging them back up before he gets in trouble. His fine motor skills won't yet allow him to hang them properly, instead he slams them into the branches hoping the ornament will stick. Thus, the Frosty yard sale.

Another new "no-no" at our house is tearing ALL of the pictures out of the PECS book over and over each day. I am so sick of hearing myself repeat the same lecture about how the "schedule book is not a toy - it's a very important book that tells Mom & Dad what Brady needs."

Do you see him looking at the book and scheming? I do. But he will wait until I leave the room to tear it apart! When I come back and give him "the look" he grabs all of the cards and tries to shove them all back into the book at once, like if he's fast enough his mom surely won't notice.

This naughty boy is getting so smart. Thankfully, there are some things that haven't changed...

...gotta love those crinkly eyes.

Just Because

Some pictures. Just because...

...this boy can't be bothered to hold up his own head while watching cartoons

...because I saw a dog wearing sunglasses the other day (only in Phoenix)

...because the other night my wildest dreams came true :-)

Green Light

I'm still not back in to the blogging swing of things. To say I have been a bit preoccupied is an understatement. Three weeks ago Troy and I met with a genetic counselor who looked over the tests that we took after we received Brady's diagnosis. As we suspected, although we were told at the time that everything looked fine and we were given the green light to have more children, there was an additional test which needed to take place to determine if either of our chromosomes carries a balanced translocation.

I am horrible at the waiting game. Waiting around while those vials of blood are sitting in some scientist's office is almost more than I can bear. In the mean time, life-altering decisions wait in the balance. I go about my usual day-to-day business but the thought is ALWAYS in the back of my mind. Luckily, we only had to wait a couple of weeks this time around. Brady's series of tests in 2006 each took 6 to 8 weeks for a total of almost six months in limbo. And if you did not have the pleasure of seeing me during that time, trust me when I tell you I did not handle those 6 months gracefully.

This morning I got the call. The real, official GREEN LIGHT. Everything looked fine! Fine! Why can't I figure out how to make big, colorful letters on blogger like everyone else?

So I thought I would share the good news... even though we have no near-term plans to give Brady a sibling. My anxiety over the tests is slightly ridiculous considering we have procrastinated this process for almost two years. I don't think I was emotionally ready until now to hear the results if the outcome was not the outcome I wanted to hear.

And I need some more time to ready myself for the possibility of more children. When we met with the counselor regarding potential possibilities and tests we quickly learned that the only thing the testing options provide is knowledge and the choice of terminating a pregnancy. This is not an option for us. Religious beliefs aside, it would be as if I were telling Brady that he shouldn't be here. And nothing could be further from the truth.

So if there is a next time, a next pregnancy, we will proceed no matter what.

Last summer a good friend of mine asked me if we would have more kids and I explained to her that we hadn't completed the tests to determine if Brady's syndrome would occur in future children. She looked at me innocently and asked, "You don't want another Brady?" Her question was so naive and full of love that I felt a bit guilty and responded defensively. I sputtered on about all the potential issues. I might not have enough time to devote to TWO children's therapy appointments, hospital stays, etc. And when Troy and I get too old to care for Brady, I would go through DOUBLE the agony of figuring out who would take care of him. And blah, blah, blah. Later I played out the conversation in my mind and realized I needed to have an attitude more similar to my friend's. While these issues are legimitate, they are life. Some things are difficult to bear, but with a little patience and an open heart, you start to see the person. Not the person with the disability. Not the boy with the seizures. Just the beautiful boy. Another Brady would be just fine with me. I have officially reached that place. I just want more time to enjoy him all to myself.

Tony Hawk Helmet

Fall is in the air and we are finally emerging from our summer hibernation. Since we live in Bizarro world we will be spending as much time outside as possible this winter. Brady has difficulty regulating his body temperature and this new addition to his wardrobe makes things even hotter…Brady’s physical therapist fitted him months ago for a specific helmet which had to be ordered through our insurance company. Thanks to a heap of red tape and bureaucracy, the helmet has never arrived, despite the fact that Troy ordered it in July. After Brady got, literally, a golf ball-sized lump on his head from a fall at school (one of many), I got very upset and angry with myself for not finding another helmet. Since it’s much easier to be angry at someone else, I blamed Troy. Not my finest moment. He rushed out and bought the Tony Hawk helmet.

A few nights later, I found him cutting up a tennis headband and hand-stitching it together. Troy will kill me for sharing this, but seriously... he hand-sewed this padding over the helmet’s clasp so it wouldn’t pinch or irritate Brady’s chin. I don’t know very many guys who would do something like this. So I am an even bigger turd than I previously thought for pointing my anger towards him. Check out his work...

Brady doesn't love wearing the helmet, but it’s allowing him so much more independence to cruise around without us hovering there to catch him.

He is walking really well these days. He cruises so fast and has a newfound confidence that, ironically, is making him more susceptible to falls. He does NOT like to hold hands and insists on doing everything his way. In fact, I think his little strut is turning into a full blown swagger.

Inspired by 100

It's been awhile. I have started countless posts about nothing and never finish them. However, I have recently been inspired back to blog-dom by a 100-item post which I will now forever refer to as the mother of all blog posts . Jenn's creative list reminded me of all I am thankful for and the fact that Brady's seizure counter hit 100 the other day.

100!

I have to admit that I check my own blog almost every day around 5:00 pm to watch the ticker roll over. I reached a point where I didn't think 10 days seizure free would be possible. I love being proven wrong. In fact, I have been proven wrong a lot lately by this one...



It took awhile but Brady now says "yeah" on a regular basis. He also makes a very dinstict "rmmm-rmmm-rmmmmmm" sound when he sees, hears, or thinks about cars, trucks, planes, school buses, etc. This boy was in heaven watching airport activity from his window seat a few weeks ago.




I have always had confidence that Brady would walk but I have been pretty skeptical on the whole speech issue. It's not that I'm trying to limit him in any way, but his numerous speech evaluations have been pretty tough to swallow so I have attempted to manage my own expectations for Brady in order to plan ahead appropriately. Either way there are a number of communication options out there, and currently we are working on three.


Sign - I love sign language. It's amazing what people can do with this tool and it has proven invaluable in Brady's life up to this point. Hands down, Signing Time is the best resource for babies and kids that we have come across. A recent press release on their website stated they will no longer be airing on PBS so fill up your DVRs, people. And if you have any interest in sign whatsoever, I would strongly recommend purchasing some of their products. The Signing Time folks have produced two more Baby Signing Time DVDs which are geared to babies in particular (and worked great for us as Brady's developmental delays put him in this category for longer than usual). I have been asked to review the new DVDs on our blog which will occur within the next week. Two posts in one month - stop the madness!

PECS - Picture Exchange Communication is new to us. We had to get on board because this is what Brady's pre-school class uses (along with some sign). Brady has learned to pick the appropriate picture and give it to his teacher in order to get something he wants. I though there was NO WAY this would work (even told his teacher this before school started) and, of course, Brady now struts into class each morning and grabs the card for circle time. This system is a lot work to implement so I will post more about it once we become more proficient at home.

Speech - we continue to work on speech through weekly speech therapy. It has been a tough, very slow process but Brady babbles a little more each month. I was reading through Nate's notes from the 1P36 conference in Boston and one of the speakers reminded parents to be patient and that speech may come later down the road. I hope this is the case. If not, we have the other options to fall back on.

We missed the 1P36 conference and I'm really grateful to the other families who have posted information so we can stay informed with what's going on. We are hoping to be there next year - the candidate cities are SLC & Indianapolis which are both closer options for us.

First Week of School

Tuesday was Brady's first day of school! He was so excited when we pulled up. Of course he started running the opposite way so he could get closer to the school buses.

What is up with little boys and large vehicles? He would have sat for hours watching the buses (another favorite spot is the airport pick up lane).

Can you tell which one of us had a hard time letting go?
He left us in the dust and marched into school.

Brady's teacher let us follow him into the classroom where he promptly ignored us and started smiling and bouncing on his butt for circle time. We left, I made Troy go look at some land in the west valley with me for work, then we headed back and picked Brady up four hours later.

The Brady we dropped off was NOT the Brady we picked up. He did great at circle time and, from what we heard, cried/fussed/slept the rest of the day. He wouldn't eat his snack or lunch so we made an emergency stop at Chic-Fil-A. Look at this exhausted boy.

Brady ate but wouldn't really respond to us in any way for several hours. He couldn't calm down and sleep until later that night. Troy and I were both so upset and worried. I held my breath the next morning when I pulled up to school once again. Just when I thought Brady would start screaming, he clapped and squealed. I couldn't believe he wanted to go back to school and when Troy picked him up later that day his teacher reported that "he had a phenomenal day."

Huuuuge sigh of relief. Thursday also went well and I swear this kid was so bored on Friday and over the weekend. I can't wait to drop him off on Monday morning!

Practice Run

This morning was Brady's pre-school orientation where we met his teacher, aids, school therapists and the other students. There will be 5 boys in the classroom and 4 adults (one teacher, two aids, and various therapists that will rotate in). We are seriously spoiled with that ratio and have been able to put aside many of our concerns. The teacher was very experienced and confident and had tomorrow's schedule written on the board. The classroom was adorable - I have never seen such a huge room full of miniature stuff. Everything was at toddler eye level, even the kitchen sink. Brady is one of the youngest and most delayed students so I know he is going to learn so much from the big boys. Tomorrow is the first official day of school so we'll see how things go.

Brady's favorite activity lately is helping us with dishes and laundry. In fact, I can get him to do almost anything if I call him my helper (oh, how I hope this stage lasts!). He was thrilled to discover that his classroom had several little kitchen and laundry centers.

Every toy in that room was in the kitchen sink after the first hour so Brady moved on to his second favorite activity, bouncing on his butt. Let's hope he soon figures out those chairs are for sitting.I'm having trouble wrapping my mind around the picture below. We don't follow behind Brady anymore with our arms hovering out to catch him. Still, I am usually close by and have never watched him walk from this perspective. "Walk" isn't even the correct word - look at him strutting his way down the school hallway!

If he could talk I'm pretty sure he would say What you looking at, Mom? Get outta the way!

Lazy Blogger Here...

I am having a hard time getting back into the blogging swing of things after coming back from our trip to Utah a few weeks ago. I keep starting a gigantic post with about 100 pictures from our trip and I never finish! I WILL eventually post it because we had such a great time I don't want to forget any details. In the mean time, we are doing great and managing to survive the heat. Troy and Brady are doing a lot of this...

And, of course, a lot of therapy...

My assignments at work lately have gotten really complicated and are always taking up more time than what I had planned. Luckily Brady has several therapy appointments near my office so I can usually see him at lunch if I can't make it home before bedtime. Still, it's hard on me to be away from him. He is getting so grown up, signing "mom" sometimes when Troy picks up the phone at home.

So please forgive me for checking in on my fellow bloggers via Google Reader and rarely leaving any comments. I love reading about all of your vacations and summer happenings and will be checking in properly very soon.

Anticipation

Brady is getting steadier and more confident in his walking. Look how effortlessly he cruises around with toys in hand...


He can also stand still in the middle of the room...


We love that Brady is confident and now prefers to walk everywhere. The only problem is that he has to concentrate solely on walking or will take a nasty fall which is a whole lot different when you are in the parking lot at Target versus at home on the cushy carpet! At our IEP meeting we noticed that the floors were vinyl or thin, commercial-grade carpet with no padding. It's hard to imagine how things will go when one of us isn't hovering and ready to catch Brady. His defensive reflexes have improved tremendously, but it's the unexpected stuff like tripping on something he hasn't anticipated or attempting to lean on kids who might move out of the way at the last second that is causing most of Brady's falls.

In our IEP we agreed to purchase a helmet for Brady to use while on the playground. I guess we will just see how things go while he is indoors at school. He has been known to fall off chairs unexpectedly so we have been practicing for school...

I have never been so excited and nervous about something as I am about Brady going to school. I can't wait to meet his teacher and I am thrilled that Troy will get a break for a few hours each day. I guess the hard part for me is that I can't ask Brady about his day. Do you think they will let me peek through the windows for the first few weeks? Hmmm... didn't think so.