Last night the Manville/Hillsborough Elks hosted a comedy show starring Denny More. For those of you who don't know who he is, keep your eyes peeled for his next show, this man is amazing! Denny is a comedian, magician, hypnotist that did some things that I would never believe if I hadn't seen them with my own eyes and known practically everyone in the audience who participated! I just can't stop thinking about this show. The night was a huge success with the Elks raising a total of $1700 for our son Jake. Paul and I were fortunate enough to have help help from our friends with Weston School's PTA, who succeeded in selling $300 in chances, totaling 6 tickets to 6 lucky winners for the night for "Jake's Escape" New SUV raffle set to go off on September 12th at The American Legion Post #304 here in Manville NJ.
This night for us was more than entertaining, more than a fundraiser. I want to extend a heartfelt thanks to everyone in attendance. You all made the night exactly what it was and that is a night to remember! Thank you all for the memories and good times. I just keep remembering more funny things that happened!
The Elks members who volunteered in the organization, set up and presentation of this event did a fantastic job! It is solely because of them that this night was possible. I can only hope that the evening was as enjoyable for the folks working the event as it was for those of us in attendance. It was really hard to sit still and not be constantly on the move helping out with the event, but it was made very clear to me when I first arrived for the night with Jake to meet the volunteers that this was my job for the evening. The night started with us being surrounded by the warmth and love of everyone there and ended with us all in hysterics!
We were blessed to meet many of you, who were friends of friends, coworkers of someone who knows someone else that knows us or someone in our family and then some! I have so many stories that came from this one night, it's incredible! We discovered that our friend's sister is good friends with our cousin's girlfriend! We also realized that a family that has been very helpful to us with several events for Jake is the same family that entrusted their own son's daily care when he was a child to my own mother. Small World. Getting smaller every day, and that's just two of the stories!
Coming into this great weekend we received a call from Jake's Endocrinologist and he doesn't want to see us back until the end of the summer with instructions to keep adding calories to Jakes diet whenever possible. In closing tonight I look to my left at our "Little Bit" sitting and eating a bowl of Haagen Dazs Chocolate ice cream, drinking his milk, and singing "We're on our way to Grandpa's Farm".
I'll say it again; life is good!
Sunday, March 29, 2009
Wednesday, February 25, 2009
This is a tough one
It has been since October that I posted and my apologies for that. The holidays do get the best of me, especially because they are so time consuming.
I am writing this post under duress, as I really don't feel like posting, but the need to keep everyone informed is out weighing low mood so I will suck it up.
The good news is that we are all in a new year and I welcome 2009 with open arms and a fresh new outlook for great things to come this year!
Our family is doing great. Paul and I are on the "weigh down" so to speak. Having 4 boys to chase is not easy and being overweight doesn't make it any easier so here we go! Being an emotional eater doesn't help me much. I have to balance my head and my heart in the right place to do this the right way.
Dylan is just finishing his wrestling season and looking forward to his 9th birthday and a new baseball season, as well as his first part in a school play coming up in May. Casey will have the first birthday of the new year and turn 4 on March 26th, he is so excited! I am sure that we will all experience displeasure, as "Angry April" is just around the corner and since Timmy has to wait out Casey's birthday, Dylan's on the 12th of April and hang in there until the 28th, I am sure he will be his troll like self again while he waits! I am hoping that the distraction of T-Ball beginning for Tim and Casey will make April a little less angry for him.
The newest edition to our family, Mya is doing great and is a very pleasurable girl, but as Dylan would tell you, she's no lady! Mya is a 1/2 & 1/2 Newfoundland/Black Labrador that joined our family on July 12th 2008. It was back in June that our Sheltie Mollie was giving us a scare and we thought we should "prepare" and get the boys a new pup. Mollie miraculously got the spring back in her step soon after our new arrival so now we have 2 dogs! Mya has made herself Jake's dog, and loves him (and all of the boys) endlessly. We are blessed to have rescued her from PAWS NEW ENGLAND through www.petfinder.com and she will be 1 year old in (you guessed it!) April on the 22nd! One more birthday for Timmy to have to sweat through!
Jake is doing wonderful and is learning more and more every day! He is "wicked smart" as Will Hunting would say for all of you movie buffs. At 2 1/2 he is doing quite nicely, despite the hearing loss with such a great vocabulary that we haven't counted words on over 6 months. You can't walk past him without him identifying numbers and letters frantically, it's awesome! Jake is quite a little instigator and spends a fair amount of time egging on is older brothers, especially Casey! It's very entertaining here to see our "Little Bit" causing big trouble, then sitting back and laughing about it. I do have to say that he is my child most like his father and is the most laid back one we have. Thank you, God for giving him such wonderful patience and such a warm and sunny personality! Together with his HOH teacher Nancy Hovey from The Summit Speech School, I enjoy watching Jake rise above and beyond expectations of my wildest dreams for him at this young age. It's sometimes hard to believe that he's only 2 1/2. Despite all of these great things going on around us, Jake was recently diagnosed with FAILURE TO THRIVE. I've inserted a link that describes things there, although I myself can't go "googling"; I know what it is. The short of it is simply this. It's a physical diagnosis. The bottom line is that he is not growing and he has to. We have begun the process of lining up doctors again.
Jake has already seen a nutritionist and followup every two weeks is required with food logs of his every meal to count his calories, fat, & protien.
Today we will see the Ear Nose and Throat specialist and if I'm going to go with my gut here, I will say that we are going to come home with the reccommendation of surgery for adenoid removal . I will be surprised if we are not moving at least in that direction.
Immediately after ENT, we go for cardiology follow up and we are hoping to be discharged from cardiac care. Say a prayer.
If the visit today does not lead us towards adenoid removal, then we will move onward to a pediactric endocrinologist, and gastroenterologist to uncover any other complications that may be holding back Jake's growth.
Although at times I am tired of being tested, Paul reminds me every day I can't falter in my faith and I don't. I just get tired of fighting every day of my life and sometimes feel like I've been beaten with a tree branch. It never seems to fail that when I am feeling at my lowest, around the corner comes my "Little Bit" smiling ear to little ear :0) to remind me what I'm fighting for.
Today I'm wearing the shirt with the glass on it that says half full. Good things are coming.
I am writing this post under duress, as I really don't feel like posting, but the need to keep everyone informed is out weighing low mood so I will suck it up.
The good news is that we are all in a new year and I welcome 2009 with open arms and a fresh new outlook for great things to come this year!
Our family is doing great. Paul and I are on the "weigh down" so to speak. Having 4 boys to chase is not easy and being overweight doesn't make it any easier so here we go! Being an emotional eater doesn't help me much. I have to balance my head and my heart in the right place to do this the right way.
Dylan is just finishing his wrestling season and looking forward to his 9th birthday and a new baseball season, as well as his first part in a school play coming up in May. Casey will have the first birthday of the new year and turn 4 on March 26th, he is so excited! I am sure that we will all experience displeasure, as "Angry April" is just around the corner and since Timmy has to wait out Casey's birthday, Dylan's on the 12th of April and hang in there until the 28th, I am sure he will be his troll like self again while he waits! I am hoping that the distraction of T-Ball beginning for Tim and Casey will make April a little less angry for him.
The newest edition to our family, Mya is doing great and is a very pleasurable girl, but as Dylan would tell you, she's no lady! Mya is a 1/2 & 1/2 Newfoundland/Black Labrador that joined our family on July 12th 2008. It was back in June that our Sheltie Mollie was giving us a scare and we thought we should "prepare" and get the boys a new pup. Mollie miraculously got the spring back in her step soon after our new arrival so now we have 2 dogs! Mya has made herself Jake's dog, and loves him (and all of the boys) endlessly. We are blessed to have rescued her from PAWS NEW ENGLAND through www.petfinder.com and she will be 1 year old in (you guessed it!) April on the 22nd! One more birthday for Timmy to have to sweat through!
Jake is doing wonderful and is learning more and more every day! He is "wicked smart" as Will Hunting would say for all of you movie buffs. At 2 1/2 he is doing quite nicely, despite the hearing loss with such a great vocabulary that we haven't counted words on over 6 months. You can't walk past him without him identifying numbers and letters frantically, it's awesome! Jake is quite a little instigator and spends a fair amount of time egging on is older brothers, especially Casey! It's very entertaining here to see our "Little Bit" causing big trouble, then sitting back and laughing about it. I do have to say that he is my child most like his father and is the most laid back one we have. Thank you, God for giving him such wonderful patience and such a warm and sunny personality! Together with his HOH teacher Nancy Hovey from The Summit Speech School, I enjoy watching Jake rise above and beyond expectations of my wildest dreams for him at this young age. It's sometimes hard to believe that he's only 2 1/2. Despite all of these great things going on around us, Jake was recently diagnosed with FAILURE TO THRIVE. I've inserted a link that describes things there, although I myself can't go "googling"; I know what it is. The short of it is simply this. It's a physical diagnosis. The bottom line is that he is not growing and he has to. We have begun the process of lining up doctors again.
Jake has already seen a nutritionist and followup every two weeks is required with food logs of his every meal to count his calories, fat, & protien.
Today we will see the Ear Nose and Throat specialist and if I'm going to go with my gut here, I will say that we are going to come home with the reccommendation of surgery for adenoid removal . I will be surprised if we are not moving at least in that direction.
Immediately after ENT, we go for cardiology follow up and we are hoping to be discharged from cardiac care. Say a prayer.
If the visit today does not lead us towards adenoid removal, then we will move onward to a pediactric endocrinologist, and gastroenterologist to uncover any other complications that may be holding back Jake's growth.
Although at times I am tired of being tested, Paul reminds me every day I can't falter in my faith and I don't. I just get tired of fighting every day of my life and sometimes feel like I've been beaten with a tree branch. It never seems to fail that when I am feeling at my lowest, around the corner comes my "Little Bit" smiling ear to little ear :0) to remind me what I'm fighting for.
Today I'm wearing the shirt with the glass on it that says half full. Good things are coming.
Wednesday, October 22, 2008
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.
Tuesday, October 21, 2008
Saturday, October 18, 2008
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.
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.
Monday, September 22, 2008
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!
Saturday, September 13, 2008
"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.
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.
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