Drake Naylor Invitational 2012

What a great opportunity to share Drake's story and help our cause!!! If you like our video, PLEASE share with all your friends through e-mail and Facebook. If you love our video, make a donation...LOL!!!

Make sure to go to Shane's Sporting Clays for more details... or find us on Facebook!!! CONTACT TRISH for ways to donate, give to our silent auction or volunteer, drakenaylorinvitational@gmail.com

Bone Anchored Hearing Aid Implant

So today marked a new notch in Drake's sweet life . The photo above is from when he was about a year old (5 1/2 years ago), you can read more about it here. It's a picture of him with his Baha for Children (Bone Anchored Hearing Aid) which is connected to the headband, not his skull. Drake has microtia (meaning small ear and/or deformity) and aural atresia (meaning absence of ear canals) of his ears.

Even though I took this cute picture, it doesn't show how is dislikes the tight headband. The company calls it a "softband", but to Drake it seemed to not be very "soft". He could easily knock it off, left red marks were left where it has to be taught enough to conduct sound, and not knowing if the sound bothered him on top of it all.

Here are photos from Baha of the titanium screw & what it does that Drake had implanted yesterday. We had to FIGHT the insurance, make multiple calls, get an extra ABR test to prove he needed the chance to hear. Which by the way, the insurance considers it a "luxury" to be able to hear...WTF?!?!?!

Below is a photo of the implant post-surgerical. It completely stunned us that you can be put to sleep, have a titanium screw drilled in your skull, stitched/glued back up and go home a few hours later. We were even able to schedule a teeth cleaning while he was sedated (not as simple as it sounds, but done none the less)! He came home with slight nausea, possible sore throat from the intubation (another NOT simple process with Drake), but HAPPY to be home!

The youngest that you can impact this device is 5. At 6 1/2, he has implant of the screw. There is a 4-6 month healing time for the bone to fuse and heal. Only time will tell how he handles the sounds! But as for today, we have added an other notch of what Drake can do!!! And not to mention... he has CUTE ears!!!

We all have demons...

Since last March we have been very fortunate with the entire seizure fiasco. With the uncontrolled, unknown causes & multiple types of seizures, we were able to have some peace with medications. I decided NOT to post about the conversations with the Neurologist about implants, brain surgery, Drake's future and more. It was too many days and nights of crying to ordeal putting into words. Putting it here on Drake's blog seemed cruel and unusual punishment at the time (to myself). Looking back, I wish I was able to capture that moment so I could refer back and see how far (once again) Drake has come.

The cocktails of medications the doctors put together have been mixed & remixed several time. They will forever be changing (as this monster does), but we are happy all the same for the past year being so smooth. I'm not saying we don't still fight that demon called seizure every day, but I am saying we have built a small wall to keep him at bay.

That little devil still sneaks in every week. He stays longer some days than others. He acts and looks different each time, he's become  a chameleon of the demon world. I read about others who fight this battle each and everyday as well. I have cried for other mother's and their children who are in the deepest part of their journey trying to rise above to win. I have seen this demon win and steal their spirits and love for life.  I have seen this demon loose, but not as often as I would like.

So as for today, we are grateful. "Bring It" you UGLY demonic monster! You may steal our fears, but you will NOT steal the love for our child!

6th ANnual Drake Naylor Invitational ~ 2011

I know it's VERY late in posting this video! I just now realized that in my slackness of updating,  I never shared this incredible video of the 6th Annual DNI (I was watching today with tears in my eyes).

To-date, we have raised just over $320,000!!! We are so very blessed at what Drake has accomplished in just 6 short years!!! Please leave a comment for more information (as of now, we don't have a website set for the event) or e-mail me at trishnaylor@me.com.

For more information about our event, visit Shane's Sporting Clays!!!

I Love my Brother!!!

There is a bond between these two... one I can't explain... one that need no words... one that has no sibling rivalry... one that is deeper than any other I know.

A day in Washington DC...

We went to Washington DC back in the spring for a much needed family break (and birthday get-a-way for big brother)! We did ALL we could in 4 days. Drake trucked along and enjoyed every minute of the cold, the rain, the subways, the museums, the driving... but being together, out of town was just what the doctor ordered!!!

Drake Naylor from a year of life...

Here I am after an ENTIRE year of not blogging about my sweet sweet boy trying to play catch-up in one lump sum of pictures!!! They might not be in order... but none the less, they are cute!!!

Something make me laugh... notice the lady in the background NOT laughing!

This picture is from Drake's 5th Birthday... MY ALL time FAVE pic of him...EVER! I even enlarged it and framed for his room. It truly shows his love for Sock Monkey's, a beautiful day and LIFE!!!
This is what my boys were for Halloween, the cutest baseball players in town. Grant decided he wanted to be a ball player. With a little help from Ebay for his official NY Yankees jersey, and very little help for Drake, I decided to pull out the crafts and get the BEST baseball costume for 2010!!!
This is a picture from one of Drake's PT sessions this past summer... Mrs.M has been with Drake since he was 4 months old! Gotta LOVE her for her passion for these kids!!!

Look what my BIG boy made for me & Shane for Christmas... so DANG sweet and I will cherish forever!!! Thanks Mrs.K & Mrs.C at Gateway for an extra special gift!!!

Need I say more? Hope ALL your dreams come big boy!!!