A Day With The Ohio State Buckeyes

Noah and Scott got to have a day with the Ohio State Men's Basketball team.

They both received a bag, shorts and a shirt to wear. Scott was so excited that he can finally fit into a 3x shirt. He says he didn't feel he looked real well in it yet but I thought he looked great. Keep up the great work sweetie. I love you.

Noah with David Bell.

Jae Sean Tate and Marc Loving

Trevor Thompson remembered Noah from last year. He has been following Noah on Instagram. He said that Noah has made a good impact on his life.

Noah and Scott had a great time playing basketball with Jimmy Jent.

Micah Potter saw Noah sitting off by himself and he came over to say hi.

Thanks Micah for taking the time to talk to Noah. It made his day.

 

Noah and Scott had a fun day playing basketball with the Ohio State Buckeyes but the best part of their day is when we were invited to come to a home game of our choice. Noah is so excited to see them play a game for the first time. Thanks A Kid Again for another fun day just being a kid.

Sometimes Life Isn't So Fun

Most of my blogs post are of our fun journey with Noah. I try to focus on all the fun things we can do with Noah instead of the not so fun things. This last week was one of the not so fun things we have to deal with. Our many trips to the Cleveland Clinic for Noah's appointments.Most of the time they go really well and we get to hear how well he is doing. Last week started out having his teeth cleaned. He did pretty well after we gave him some Valium to help calm him down a bit. Although he did accidentally bite the dentist. Sorry Dr. Habercamp. Good news is he didn't have any cavities.

Our next appointment was with his gastroenterologist Dr. Kaplan. She was very pleased with Noah even though he lost 4 1/2 lbs. and his gtube looked beautiful. I take pride in how good it always looks. Now I just need to find a way to get him to gain some weight along with feeding him every 2 hours. He had some blood work done that showed his sugar at at 203. I had it redone on Tuesday after fasting for 12 hours and it was 110. I'm sure it was because the yogurt and applesauce he had before last weeks blood draw. It's always something with this little man.

Noah's last appointment was his pulminologist Dr. Royce. Noah has been pretty healthy for quite awhile but while sitting in this appointment we heard something that really shook us to our core. While looking at some xrays of Noah's lungs from January, Dr Royce pointed to Noah's lower left lobe and said here you can see Noah's chronic lung disease. That was the first time we heard someone say it  that way. We knew he has been dealing with Bronchiectasis (brong-ke-EK-ta-sis)  It's a condition in which damage to the airways causes them to widen and become flabby and scarred. Bronchiectasis can lead to serious health problems, such as respiratory failure, atelectasis (at-eh-LEK-tah-sis), and heart failure. It just really put Noah's health into perspective real quick. That's why over the years we have made sure Noah isn't around cigarette smoke and try to keep him away from germs. The idea of him getting really sick always scares me to death. I just hope we can keep Noah as healthy as we can. 

Now on to a much funner part of the post. On Saturday we helped out at the last Tim Hess Golf Scramble. We have really enjoyed helping out over the years.

Our job is to grill hotdogs for the guys and gals to have a snack while they are golfing.

This year the golf outing fell on our new Noah/Kehres day as well. Scott and I planned on going to a movie after we were done helping but dear Deanie was helping at the golf outing and took care of Noah as well. It felt odd to see Noah across the way and not be taking care of him but it also felt good that he was well taken care of while Scott and I were busy.

I'm so happy that we have found someone to take care of Noah while Scott and I reconnect with each other. He sure is well loved.

Speaking of reconnecting, Scott and I ran into our friend James Miller at the movie theater. He is a teacher in Taiwan, he is home for a visit. It was fun watching Tarzan with you.

 

Noah always go to sleep with a smile on his face after spending the day with the Kehres' 

Noah, I hope we can keep you happy and healthy for a very long time.

Monster Bash 2016

 

Monster Bash is a convention that is geared toward the classic monsters like Frankenstein, Wolfman, Creature from the Black Lagoon etc. We've been going to the Monster Bash for the last 17 years. We have met a lot of great friends over the years. In as much that Monster Bash has become a family reunion. The first person that always greets us when we come in is Eddie. He is a sweet kind hearted gentlemen. He is always so excited to be at Monster Bash.

 

Around everyone corner is a classic monster.

Jon and Mary are good friends of ours. The last couple of years they helped raise money to help out with Noah. They have helped purchase Noah's bed, several years ago they helped pay for ABR training  and last year they helped with Noah's ramp and our new porch. What a blessing they are.In case you want to check out their website. Femme Fatale Records

Monster Bash has a movie room where they show black and white movies, have guest that played in the movies and a comedian named Don Reese. Don is a good friend of ours as well. Some of you may remember when Don came to our very first fundraiser for Noah.

This year Mark Statler presented Don with some headgear.I know he looks goofy but it brought back memories of one of his jokes he used to use  years ago that included talking about wanting an antenna on his head. Now he has his antenna.

On Sunday morning the Bash offers church. Father Mike does an awesome job.

Another good friend Barb Heiss with the Robot Monster

Noah with Abbott and Costello.

The Sheaffer Family with Brian Nichols.

Scott and Greg Nicotero, of KNB EFX Group and second unit director of The Walking Dead. Greg wasn't a planned guest he just popped in to see Tom Sivini.

The Sheaffer Family with Sam Borowski. He is the producer of a Creature Feature: 60 Years of the Gillman It's a documentary about the Creature from the Black Lagoon. Noah is in it at the very end when he was 5 years old.

Sam and Matt ( the director) presenting the Creature Feature at Monster Bash.

Noah  bashed out in the hotel lobby on Sunday night.

A Bash tradition, dinner out with friends on Sunday night.

Bash goodbyes usually start on Sunday night and continue on Monday morning. Until next time.

 

Usually our first hello is also our last goodbye. Love ya Eddie, until next time.

Baseball Awards Night

On Wednesday July 6th Noah's baseball team had an awards picnic. It was fun getting together with all the families and coaches. Troy and Chris Smith have coached the challenger team for the last 10 years. They do an awesome job. Their love for the kids are seen are their faces. They have decided that this was their last year. They have small children of their own now and want to spend time with them. They will be greatly missed but we know they will enjoy spending time with their families. Thanks Troy and Chris for being a part of Noah's life.

 

Noah has played baseball for the last four summers.  It has been amazing to see Noah change in his ability to push the button on his own to make the bat swing. I just wish we would have know about the team before we did. It has been a great experience for all of us to be a part of.

Cedar Point 2016

We had a great time at the MTD picnic at Cedar Point. The weather was perfect.

Sometimes other people ask if Noah is enjoying something or if he is happy. His smile says it all, Don't you think?

We were out walking around and Snoopy and Franklin rushed over to say Hi to Noah.

 

Noah and I on the big Ferris wheel. I don't think Noah has grown much in 6 years but he sure has matured.

Because You've Got Me and I've Got You

 

You miss the things I haven't done,
the goals not scored, or races won.
The steps my feet have never walked,
the words my lips have never talked.
In my wide eyes you know my fear.
You take my hand and hold me near.
In children, all around you see,
the child that I may never be.
Not so able, tough or agile,
often tired and much more fragile.
You see the tears I've often cried,
and cried them with me, side by side.
Your heart is heavy for my trials,
but you wear it well, with weathered smiles.
I know that you know, I am enough.
But I know the bad days can be tough.
You thank the world for giving me to you,
but you're sad for all I cannot do.
And not because you feel let down my me,
but you can't help wonder how I'd be.
If I could do what other do

like ride a bike or run to you.

You think of all the things I'll miss: 

                               first love. first date, first kiss                                                         

 Yet here I am, as I should be,
  not missing out on being me.

Do not fret or worry so, 

                               and make your spirit tired with woe.                                                                              

 And when those nights are feeling longer,
  lean on me until you're stronger.
  Hold my little hand in yours,
   peacefully we'll pass the hours.
    For all we have is one another,
 special child and care worn mother.

 Nothing matters more you see,
  than seeing all the life in me.
   I don't need to be able to,
   do the things that others do.
     See the words I do not say,
  in the smiles I give you everyday.
  When I'm tired let me rest,
  with my little head against your chest.
  And for that moment in that peace,
     let your loving worries cease.
  Look at what I can achieve

and celebrate me, do not grieve.
 Please do not be sad because,
  I'm not that child I never was.
    Different isn't less you know,
  and you're the one who told me so.
   Some days will be hard to take,

             and you'll feel as though your heart might break.                                                                               

But we'll bounce back, we always do. 

 Because you've got me and I've got you

*Author Unknown