Quarterly Update?

You know it's been a long blogging break when you try to leave a comment on someone's blog and have to give up after 9 incorrect password notices. There has been a lot of stuff going on in our world. Where do I start?

After 4 years in Phoenix we finally bought a home. We were in the process of buying a 2-story home and got cold feet as it was being constructed. It had a huge loft with a low railing and honestly, we just don't know if/when Brady will understand the danger of heights or figure out how to go down stairs safely. Instead we moved into this one story. With a pool. Danger lurks everywhere, people.

Brady started kindergarten and it hasn't been an easy transition. We have questioned our decision about which type of classroom he should attend and still, there is just no really great fit for him. It's incredibly frustrating and this issue has been overwhelming us since the first day of school. We will again visit all possible classrooms in the district and make a decision. Other parents be forewarned... the district just may change every single teacher/classroom/program two weeks before school starts and therefore those 7 classroom visits/possibilities you agonized over last spring will be for naught. We did win our fight for a one-on-one aide for Brady which is a positive. Observing him in his current classroom (8 kids/3 adults), we now realize there is no possible way he would be kept safe and have his unique communication needs met without an aide. Fight, fight, fight for what you need and deserve. Troy can give you some pointers. He made some ladies cry in our IEP meeting because he presented such an emotional case for Brady. That, and a log of all of Brady's classroom falls and injuries over the past two years didn't hurt... aside from our kid coming home from school with a black eye more than once. Oh, the irony.

Brady has had more seizures, including two back-to-back totaling almost 20 minutes and resulting in his first ambulance ride. The episodes seem to be evolving into a different type of seizure which is less intense. One time he was conscious throughout and trying to eat french fries. Thankfully the seizures still occur infrequently, although it has been tough emotionally to come to terms with the fact he is not likely to outgrow his epilepsy. We may be adding an additional medication soon as he is on the maximum dosage of Keppra. I now carry a diaper bag on me at all times with a blanket, rescue medication and if anyone can find me an attractive women's watch with a stop watch let me know!

And for better news... Brady has had a recent burst of communication. No talking. I have fully accepted that verbal speech will not likely be a possibility for Brady. I will never limit him or lose faith in his abilities and determination. And I still wake up from dreams where he talks to me. It's never anything of the melodramatic "I love you, Mom" variety but more random conversations wherein he asks me to "pass the syrup" or something. And in my dream it's not really a big deal. And some things happened in the last few days which made me realize it just doesn't matter if he speaks verbally.

We were playing catch (yes, he can catch a ball - amazing, right?) the other day and when I told him I was all done he signed "more" + "ball"+"mom." He has never strung signs together as a sentence. He loves catch so much he would stop at nothing to tell me he wanted more. I am learning it is all a matter of motivation for him. He also signs "more" + "water" when I turn the water off in his bath. With his talker he is telling me what he wants for all meals and I have been known to drop everything and run to the gas station on the corner to buy Pop-Tarts or donuts to positively reinforce his use of the talker. Healthy? No. Effective? Absolutely. Last weekend he used his talker TWICE to tell me he needed to go to the bathroom. It was the BEST.DAY.EVER.

Through all of the recent changes in his life (moving, new summer program, new school, massive medication increase) Brady starts every day with a big smile on his face and a hug for Mom. He brings so much joy to my life it doesn't seem fair. His smile makes every heartache over his classroom situation or seizures disappear every morning.

Oh, and he loves watching football now. Will sign "touchdown" and announce it with his talker. Dad is understandably ecstatic.

1p36 Deletion Support & Awareness - Please Vote Today!

It's been a long time. I have many new things to add to the blog but would first like to draw attention to a cause which is near and dear to my heart. I have posted before about Brady's diagnosis of 1p36 deletion. I know the name can be confusing and intimidating. And most medical professionals have never heard of this syndrome. However, it is the most common chromosome deletion and is estimated to occur in 1 on in every 5,000 to 10,000 births. Unfortunately, many individuals remain undiagnosed as newer technology (microarray versus traditional FISH testing) is often required for a correct diagnosis.

A group of parents whose children are affected by 1p36 Deletion have devoted their time and energy to furthering awareness and support for other families affected by this syndrome. These parents have created a non-profit organization, fundraised and hosted several annual conference where families can meet face-to-face with other individuals affected by 1p36 Deletion.

I am asking for your support to further these efforts by voting for 1p36 DSA at the Pepsi Refresh Project site. This cause is in the running for a $50,000 grant which would allow the 1p36 nonprofit group to create brochures and other materials to further awareness and more accurate diagnoses of 1p36 deletion in the medical community.

You can vote for 1p36 DSA every day during the month of August by texting "101439" to Pepsi (73774)... AND...

Sign up to vote at http://www.refresheverything.com/

Search for 1p36 to find this cause and click "Vote for This Idea"

You can vote for 1p36 DSA every day (by both text and on the Pepsi Refresh website) during the month of August.

Please show your support by voting and passing along this information. You couldn't say no to this face, could you?

I know it's an old picture but it is one of my favorites. It was also taken before we received Brady's diagnosis when we felt so very lost, alone and confused by Brady's global developmental delays and other medical issues. Please vote for 1p36 DSA so other families can receive the information and support we have been so lucky to have found.

More information can be found at 1p36 DSA.

Potty Talk

The Flip Family Potty Seat: $44.95

The Potty Stool: $99.00 7 Stickers in 10 Days... Priceless!

Okay, so maybe he missed one important step (pants off)! But Brady can climb up on the potty all by himself without us having to utilize an expensive and bulky special needs toilet. We have been looking for potty training options which would accommodate a child who is older/larger than the average potty training-aged child and The Potty Seat is perfect. The supportive handles slide right off if you want adults to be able to use your guest bathroom. The stool can also be used by little ones to access the sink. Most importantly, it is helping bring Brady one step closer to being more independent. We have been working on this goal for about a year now and, although he doesn't communicate when he needs to go, we can usually sense the need for his #2 each day. The best part is, for a child with very low muscle tone in his trunk he is now able to eliminate more easily. We still use Miralax almost daily but the constipation issue has definitely eased with the use of the toilet for some reason.

That's enough poop talk - I just had to share this product because we have been searching for a really long time and love it.

The Middle

For the past several months Brady has undergone extensive evaluations carried out by the various educators in his classroom and at the district level in an effort to place him in the most appropriate kindergarten classroom later this year. The result was numerous pages of information documenting his abilities in all areas of development. The verdict? I couldn't tell you. Please see below.

There was an age-equivalent score of 11 months somewhere in the report. I forget the category of development to which this score pertained because I can not and will not dwell on that number.

Brady's expressive language skills were placed in the 4th percentile of the disabled population. I doubt he can even be placed on the chart for the general population. His almost complete lack of speech has disqualified him from every single speech therapy camp I tried to enroll him in for the summer. We are willing to pay thousands of dollars for these camps with adult to child ratios ranging from 3:4 to 2:10. They wouldn't take him. They said he is too disabled for those caregiver ratios. They said he has to be able to speak to go to speech therapy camp. Irony is a cruel bitch.

With respect to most other areas of development, Brady scored somewhere in the middle. I guess I would call it "pretty delayed."

I'm not trying to paint a bleak picture or evoke sympathy. These are the specifics of Brady's development. And we feel they are accurate for the most part. Troy and I filled out a questionnaire which yielded almost identical results.

And now things get confusing. Brady scored within the range of average for his age group in pre-academic skills. He knows his letters, numbers, shapes and colors. This qualifies him for a higher-functioning special education kindergarten classroom. We visited these classrooms and all of the children can talk. All of the children are toilet-trained. All of the children can navigate stairs and other hazards to which Brady pays little attention. None of the children wear helmets, as Brady does, so he doesn't injure his head or come home from school with any more black eyes. (This is starting to sound highly similar to a fretful post about Brady staring pre-school!)

He can learn. He is an exceptional memorizer of things, labels, pictures, landmarks. He can navigate my cell phone and his talker like nobody's business. He does silly things, purposefully, because he knows they are funny. He has found a way to tease me, to poke fun at things I do without using words. He is smart and resourceful. He is in there, even if he can't always communicate it. Other people see it too. I have been accused of exaggerating his condition because "he doesn't seem disabled." I have been excluded from discussions by other parents because he's not as disabled as their child. Yet it is becoming increasingly difficult for Brady to relate to his typically-developing peers, even those several years younger than him.

I guess all of this lands him somewhere in the middle. So we continue to carve out our support network, our family, friends and caregivers who get it, or compassionately try to understand. We continue to consult with other parents of the differently-abled and have been shown tremendous resources and support. We continue to hope for the best for Brady and are consistently reminded to be grateful for the middle.

Since We've Been Gone...

Someone rides his new friend Applejack every Saturday morning...

Someone learned to ride his bike... with a bit of help...

Someone now insists on feeding himself... doesn't spill a crumb of In N Out...

The healthy stuff is a different story...

Some new things have proven more difficult than we bargained for...

Others... not so much...

Someone's seizures have continued... but are thankfully rather infrequent...

The Keppra-Rage has reared its ugly head with recent dosage increases... but as the weeks pass someone continues to return to his sweet self every time...

Someone is busy getting ready for Kindergarten (?!) this fall...

And later this summer... someone's parents will have finally committed to living in Phoenix...

And oh, how we have all missed our little blogging world!

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?"

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.