happy being trevy

Yeah!! Trevy will learn some words quick being cha...

2012-05-24T10:13:30.932-07:00

Yeah!! Trevy will learn some words quick being chased by Aidan in a power chair. Send him north!

I think there are pros and cons to both approaches...

2012-05-23T15:15:04.972-07:00

I think there are pros and cons to both approaches.

...danielle

what do you think is better, online piano lessons ...

2012-05-23T14:49:27.492-07:00

what do you think is better, online piano lessons or the good old fashioned human teacher?

Had ou been increasing the Topamax with weight gai...

2012-05-23T09:07:11.357-07:00

Had ou been increasing the Topamax with weight gain? If not, then technically he's slowly been weaning anyway. I truly hope it's a smooth transition and that he'll be much better off without it.

thinking of you (even if I rarely comment!)
Jen

Julia was briefly on Topomax shortly after her IS ...

2012-05-23T08:32:48.331-07:00

Julia was briefly on Topomax shortly after her IS diagnosis at about 5 months old and I HATED it! Her babbling stopped altogether and only came back when we weaned. I'm sure the increased language is not in your imagination...when we weaned Vigabatrin after surgery it was amazing the leaps and bounds we saw with each decrease. These meds are horrible but seizures...ugh, those are worse. Good luck!

I think you just solved my summer camp dilemma. I&...

2012-05-22T16:34:44.828-07:00

I think you just solved my summer camp dilemma. I'm sending him to YOU! ;)

...d

Ugh. Yes, life really is about the grey. I remembe...

2012-05-22T16:14:46.853-07:00

Ugh. Yes, life really is about the grey. I remember our doctor framing it as quality of life, which seemed to be neuro speak for, how bad do the meds suck and how many more seizures can you take before you go bonkers? No good answers.

I'd be sooooo excited for Trevy's speech to take off since he's been doing so well. Tell him I'd love to hear him say "no" and "poop" more with a few "get out" and "don't touch me" thrown in!

Mommy Scott (how do I not know your first name?!) ...

2012-05-22T06:39:39.729-07:00

Mommy Scott (how do I not know your first name?!) and Jody...love you girls too. And your preciously unique little ones!

Susan...thank you SO much for stopping by and ditto our family to yours!

...danielle

You have a wonderful blog and beautiful post and p...

2012-05-21T07:39:05.978-07:00

You have a wonderful blog and beautiful post and photos. I'm your newest follower from KBN. My daughter has a seizure disorder and a Vagus Nerve Stimulator which has helped - but not cured her disorder. Our prayers and hugs are with you and your lovely family.

Danielle- Just love this blog- I've referre...

2012-05-20T13:52:40.424-07:00

Danielle- Just love this blog- I've referred your blog to a friend of mine who is looking for information about hemispherectomies....So helpful....

Oh how I love your posts :) Love you have found a...

2012-05-18T12:40:45.045-07:00

Oh how I love your posts :) Love you have found a way to type how I think and feel so often.

Ugghh...totally get ya when you talk about how people see Trevy, or how they think they know him so well.

After a year, Kylie will finally play with all the kids from our church group without us around....yet, she always comes back for snacks and to go potty. People think we never feed her, but this is her way of escaping from the play time with all the kids...its too much, and she doesnt know what to do.

Oh how I wish you lived closer, Trevy and Deacon w...

2012-05-17T17:23:43.001-07:00

Oh how I wish you lived closer, Trevy and Deacon would be BFF's! I am so glad I found your blog, it gives me hope for progress in the future. We just called our first ABA facility today and are waiting to hear how much our insurance is willing to help out.

So glad you had a great trip. I LOVE Disney. Jeff ...

2012-05-11T06:24:13.042-07:00

So glad you had a great trip. I LOVE Disney. Jeff proposed there, we honeymooned there and have been back I think 4 times since.

Totally crazy. A 22 hour drive? I need a straight ...

2012-05-11T05:58:20.365-07:00

Totally crazy. A 22 hour drive? I need a straight jacket after about 3 hours and now I need a nap after reading your post. You're a super crazy fun mom!

There have been many MANY moments when I've le...

2012-05-10T06:17:13.723-07:00

There have been many MANY moments when I've learned to appreciate my mom over the past 11 years. (my oldest is 11 ;)

And you're right, it's worth it.

Also, thank goodness for cameras so I have the happy pictures to keep reminding myself it's worth it! :P

...d

Just a short story you will appreciate. My daught...

2012-05-09T18:30:11.002-07:00

Just a short story you will appreciate. My daughter is married and has blessed me with 2 wonderful grandsons. In January her husband had to go to Dalllas for work and she thought they would tag along. Afterall, the baby was 6 wks old, it was winter, she was bored, etc. First off, the 4 1/2 hr trip took them 8 hrs! I don't think the babies traveled well. But the best thing was when she got home and said to me "Mom, you and Dad took us somewhere every year, sometimes twice a year. You worked full time at a very stressful job with long hours. I always wondered why you made such a big deal of getting everything ready and packed and always wanted to get home a day a before you had to go back to work. I get it now, Mom. It is a lot of work to take a trip. I never understood before." Then the words that made all of those long weeks after the vacation when you te so exhaused worth while "thank you so much, Mom, for doing that for us, I know now how hard you worked to make our trips so much fun and such wonderful memories." So yes, even though you are exhausted, it's all worth it. Moms don't do what we do for the thanks, but it sure doesn't hurt to be told every once in a whlie.

This looks like a lot of fun! We will try this dur...

2012-04-30T11:17:59.981-07:00

This looks like a lot of fun! We will try this during the summer on the fence in our backyard.

This looks like a fun way to "work" on h...

2012-04-28T18:34:04.578-07:00

This looks like a fun way to "work" on hand strength,fine motor and visual motor skills! I think I will be borrowing your great ideas! Thanks for sharing at AfterSchool. I'm going to feature this post tomorrow.

I'm thinking that sounds like tons of fun. Wou...

2012-04-26T16:38:28.866-07:00

I'm thinking that sounds like tons of fun. Would it be weird if I did that without my kids or if I squirted my kids? We also put food coloring in the squirt bottle and "paint" the snow, you know, when we have it.

Although I am sure you keep your eye on Trevy 24/7...

2012-04-24T18:13:12.278-07:00

Although I am sure you keep your eye on Trevy 24/7, just be sure you keep the squirt bottle away from any electronics. Especially TVs that have audio connections in the front. I speak from personal experience. Just imagine Jason. With s Squirt Bottle. For 2 minutes alone in the living room about 2-3 years ago. Nuff said.

Barbara...you always encourage me in the soul! XO ...

2012-04-17T07:51:28.360-07:00

Barbara...you always encourage me in the soul! XO

Hope all is well...

...danielle

Belated extreme validation that you work miraculou...

2012-04-16T14:50:58.754-07:00

Belated extreme validation that you work miraculously with Trevy to keep him on the progress track. (I cannot, however, vouch for your wifey-pooh behavior.) Consistently you make my heart beat a little faster between singing for the miracleness of validation from an MD and just how you weave a blog post.

XXXX

LOL! "Oh my gosh Trevor!" Bristel is so ...

2012-04-13T10:26:30.351-07:00

LOL! "Oh my gosh Trevor!" Bristel is so funny too!
How cute are they?!!!
Bup was thrilled to see that "he has Elmo like me!"

I'm exhausted just reading all of that, and ye...

2012-04-11T16:13:13.415-07:00

I'm exhausted just reading all of that, and yes, the drug merry-go-round just plain stinks. Yeah for great doctors! Now go take a nap!

Thanks, Guys, for the support. :) Love yas... A...

2012-04-10T10:07:35.156-07:00

Thanks, Guys, for the support. :)

Love yas...

And Kenly...email me. I feel like you gave me a new email address but I didn't save it.

...d