Gaining an Angel

Our lives were touched today by a family that has been across the path of our lives here in our town for years. This family lost their Husband and Father. He and his wife were business clients of my own for many years. His wife was my husband's caregiver. His son was my husband's school mate. His oldest daughter is our oldest son's teacher. His youngest daughter is our cousin's dear friend. We have called them all friend and thought fondly of every one.

To town folk, their house was THE place to BE on Halloween. It THE house on "the North Side" with all the scary moving things in the windows and all the spookey ookey stuff all over. Their decorations ARE THE decorations TO out DO! That's where you made sure you went when you took the kids went trick-or-treating so that you could stand on the sidewalk and just stare in awe. When you went there, you planned to be there for awhile. Mr. Deitrich just had to come out after he got everything in the window moving and then stand with you and marvel at his creation, making sure to point them all out to you, so you wouldn't miss a thing. He loved it! Loved it, and you could see it in his eyes. He loved that the kids that used to trick-or-treat at his house when his own children were little were now bringing their own kids by.

When you saw that big red truck coming, we knew it was him, he knew it was us, and he would smile from ear to ear and give a big wave; if he could only hear all the kids in the car!

Mrs. Deitrich, your husband touched our lives and left us with such happy memories. In his passing your family in your sorrow and grief took the time to consider ours. Such a selfless and loving gesture that I can't find the words to make my brain understand what my heart is feeling.

Your family is his legacy and he will live on in you all. Kevin, Jennifer, and Kristen we mourn the loss of your father. He will be sorely missed but we will carry him on in our hearts and thoughts, forever. There is not a day that goes by that I don't think of your Dad, or your family. Thank you from the bottom of my heart for allowing Jake to be part of your Dad's living legacy. I will never be able to look at my own son without love for your family.

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CALIFORNIA UPDATE PLEASE READ!!

Hello to everyone and a special hello to our ONE FOLLOWER OF THE Blog!!
WE ARE BACK FROM THE LET THEM HEAR FOUNDATION'S Microtia Conference 2008

We got better news than we ever KNEW was physically possible. Here goes! I will try to NOT make it confusing if that is possible. The Ears:
Left side Grade 1 or the more normal looking ear..
Right side Grade 3 the little peanut:

There is a grading system used to determine whether one is a good candidate for the ear canal reconstructive surgery. (Atresia Surgery) It goes like this:1-10 10 being best (but nobody ever gets scored a 10)
<6 class="blsp-spelling-error" id="SPELLING_ERROR_1">candidate
The Grade 1 side was scored a 9!
The Grade 3 side was scored an 8!
The only thing better than that would be a 9 and a 9. They can't even remember when they had a 9 and a 9. HE IS one of the best candidate they have seen in years!

In addition: on the left/Grade 1 side....he HAS AN EAR CANAL!! He also has the opening in his skull.....no bone to drill through on that side and the makings of the ear canal, possibly an eardrum past the blockage which is either tissue or bony fragments but in any event they won't know what it is until they get in there. There will be little skin grafting needed on that side. The grafting needed should be to make the eardrum if it is not there.

What this all means: After the 2 Atresia surgeries and they open the one ear canal and make the other, he is expected to hear within normal range (0-30db) WITHOUT ANY HEARING AIDS.

Please!! Are you KIDDING ME!!!!! All I can say is, thank you God, thy will be done. Thy will be done.

So! Here's the anticipated schedule.
August 10, 2009 Left side Atresia Surgery
November 23, 2009 Right side Atresia Surgery
February 22, 2010 Right side Microtia-Medpor Reconstruction
JAKEY COMES HOME WITH 2 EARS!!!

August 16, 2010 Right side Medpor stage 2 AND left side otoplasty.
The plan is to make the earlobe on the right side, using some tissue and cartilage from the left ear, and at the same time, giving that left ear a little snip-snip tuck-tuck to make it stand up nice to hold glasses without bending down.

So! We are still in disbelief. Any time I talk about it, my cheeks tingle. What does that mean? Am I gonna have a breakdown or something?!?!? After ALL OF THIS that we have been through, the GOOD news is gonna BREAK ME?! Have no fear. I've got my super-cape on!

Oh, and to the parents and the children there in California at the conference with us, unbelievable. We are all in it together and for the first time ever, I didn't feel so alone. Talking with you all gave me such strength and hope.

What else we came home with: The most awesome of peace and calm I have felt in over two years. It's gonna be ok. Paul was right. AGAIN. It's gonna be ok.

To the "Fam" and the "Pals" thank you all for your prayers, good thoughts, crossed fingers, and toes, and some of ya, even eyes!
We love each and every one of you.
It's a tad busy, but life IS good.

NEW FUNDRAISER!

BRAND NEW 2009 FORD ESCAPE

ASKING PRICE $50!

YEAH, YOU READ IT RIGHT.......

What do you get when you mix a cute little boy with a

2009 FORD ESCAPE?

A winner, Silly! Will it be you?

Help him and give him the chance to help you back!

The American Legion Post #304 in Manville NJ is sponsoring

"JAKE'S ESCAPE"

ALL Proceeds of this raffle will benefit Jake Whitenight!

*A BRAND NEW 2009 FORD ESCAPE VALUE: $27,965.00

*Only 1000 tickets being offered at $50

*The winning ticket will be drawn on February 14th 2009

At The American Legion Post #304 234 South Main Street, Manville NJ

*To purchase tickets please mail your check payable to:

American Legion Post #304

for Jake Whitenight

mail to:

American Legion Post #304

Attn: Jake Whitenight Raffle

234 South Main Street

Manville NJ 08835

Please help us make this fundraiser successful!

Of course, I have to write $50 price identifies price of raffle ticket and not vehicle!

"Here's TWO You"

August 5, 2008 was Happy Birthday #2 for Jake. We celebrated on the island. That is the kitchen island for all who aren't in on the joke of us owning our very own island!

We had our traditional Carvel Ice Cream Cake and we all sang Happy Birthday to Jakey, who couldn't seem to break his gaze from Daddy. I don't know whether he was amazed to finally get his birthday or amazed that his father was SINGING! It was very cute, and warmed my heart, AND I got the shot. I LOVE IT when that happens! Now I shall never forget it.

Our "Little Bit" is two, I can't believe it. Ok, the stereotypical oh, where did the time go, you're not gonna get from me. I feel like it's been 20 years of information stuffed into two. Should I NOT be able to practice medicine yet? It's mentally staggering to me how much I have learned in these past two years. All I can say is, if I knew two years ago what I know now, boy, what a great deal of heartache, despair and grief I could have saved myself.

If you are stumbling across my mental blurbs, and you are a new parent of a child born with Microtia, Atresia and or Stenosis know this. It's gonna be ok. In the darkest of the night, you can still see the stars.

So COOL!

On June 2, 2009, exactly 2 days short of being 22 months old, Jake heard with TWO ears for the first time in his life! Hooray Jakey. I am happy to share the intire occasion with everyone. I am blessed enough to have Jake's Audiologist Ellen Hansen from Summit Speech School in my life. She was very happy to have me photograph the entire experience.
I will never forget this day. As soon as the second hearing aid was put on, his eyes widened and he started turning his head from Ellen, then to me. He said "Oh, oh!" and continued to point out in a picture book Elmo, Cookie Monster, Big Bird, and Grover on command. Jake was truly amazed and kept looking back at Ellen, who was sitting behind him , when she asked him a question.

I always thought that he localized sound well with one hearing aid. I was wrong. Bilateral hearing loss NEEDS TO BE AIDED with 2 HEARING AIDS. Unilateral hearing loss NEEDS TO BE AIDED. You will talk to many ENTs (Ear Nose & Throat specialists) that will tell you it's not necessary. Not necessary to hear with 2 ears.

Ask my father-in-law how much his life has changed since his sudden deafness in one ear. It is because of him and the new challenges he has that we pressed the issue of Jake's 2nd hearing aid.
Thanks Dad. We love you more than you could ever imagine.
Thanks Ellen. Thanks for loving with all that you are. It shows. We know that is why you are
SO COOL!

Somethin' To Smile About!

Well, Jake's second hearing aid was finally approved, ordered, and received!! At last. Thanks to New Jersey's Childhood Early Intervention program , Jake will for the first time experience sound from 2 HEARING AIDS.

Tomorrow is a busy day. We will drop brothers Dylan, Timothy, and Casey off at school and head up to Summit Speech School with our new BAHA and let Ellen do her magical adjusting for Jake. I think I will bring the video camera so I can show how he likes it! Camera, hmmm. Watch out Ellen. It's about time we got your beautiful face on film for this little guy to see!

Of course nothing happens without it's glitches! The WRONG band was shipped with the new BAHA. Jake needs a headband with 2 holders now, and the one shipped only has one. How special. It wouldn't be me if there wasn't at least one wrench in the spokes of my bike every day. As Al Pacino so eloquently said in the movie The Scent of a Woman, "if you 'tango' up, you gotta just 'tango' on"; and tango, we shall!

Life is GOOD.

MAY 31, 2008 ANNUAL VICKY MCHUGH SOFTBALL TOURNEMENT

Vicky McHugh, a former resident of Manville passed away after losing a brave battle with cancer. Vicky was extremely involved in her community not only as a Girl Scout leader but also involved with the Manville Youth Athletic League as well as Manville Recreation even during her brave battle with cancer. Vicky loved Manville and loved volunteering her time. A group of people from several town organizations decided to start a fundraiser to help others in need. They started this softball tournament, to be held on May 31st, in her memory as a way to show others how she would have graciously and selflessly helped anyone in town who needed it.

Jake was chosen this year by the committee members of the Tournament to be the recipient child this year.

It is our honor and PRIVILEGE to invite you all out to share a great day of laughter, love, and friendship in the name of a beautiful and loving woman for our beautiful and loving little boy.

Can't wait to see you there!

GOLD CANYON CANDLE FUNDRAISER!

Jake's Gold Canyon Candle Fundraiser is in full swing now and going well. If you would like to help out by buying a candle, and they are awesome, here is the information!



Candle Sizes and prices:
26 oz. $23.54
16 oz $19.80
8 oz $15.52



The Scents:

APPLE SPICE, CINNAMON, CINNAMON VANILLA CLEAN SHEETS, GINGER LIME, GRAPEFRUIT SPLASH, POMEGRANATE, STRAWBERRY SHORTCAKE, COTTON SPLASH, CRANBERRY ORANGE, CUCUMBER MELON, FRESH ORANGE, SUGAR COOKIE, SWEET PEA, AND WILDFLOWERS.



EMAIL ORDERS CAN BE SENT TO LYNN AT PJDIMP7312@VERIZON.NET . Your order will be totaled in a responding email for you!



Orders will be collected until May 15, 2008

For more information on Gold Canyon Candles and Prayer Child Foundation, visit www.goldcanyon.com

ANGRY APRIL IS OVER!

We have a tremendous list of events going on in the next few months! It seems that each day brings great news regarding Jake, and older brothers Dylan, Timothy, and Casey are as busy as can be.
April has been packed with research, doctor appointments, and tying the bow on the end details for the Spaghetti Dinner. Happy Birthday to my boys!
Casey March 26th turned 3!
Dylan April 12th turned 8!
Timothy April 28th turns 4 TODAY!
This last birthday marks the end of "Angry April" at the Whitenight house. Mr. Timothy gets angry as soon as Casey's birthday comes, and holds onto it until his birthday comes, exclaiming all month "I'm not sharin' 3 with you, Casey. Walk away!!" and "why is my birthday coming last again". Today we celebrate that Timmy is 4, that "angry april" is over! Everything else waits for tomorrow!

Many Thanks

Thanks to everyone who had a hand in the preparation and running of Jake's Spaghetti Dinner on March 30th! This event was a the most successful fundraiser we have had for Jake. With donations still coming in, more than $11,500. was raised.

A special thanks to the American Legion Post #304 in Manville for all of the members and officers
who donated their time, efforts, and expertice to the day and it's planning. A huge thank you also goes out to Manville Pizza, who donated all of the spaghetti and meatballs for the day.

As soon as the event was finished, more plans began to unfold for new events. I will title and keep you posted on upcoming events.

Jake's Blog

This is Jake's new blog. From time to time, we will add new information about Jake, Grace's Law, and atresia.