Wednesday, November 03, 2010

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.

Friday, August 06, 2010

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...

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.

Thursday, May 13, 2010

Potty Talk

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.

Tuesday, March 30, 2010

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.

Wednesday, March 17, 2010

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!

Wednesday, June 24, 2009

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!

Wednesday, June 10, 2009

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