Thursday, January 28, 2016

Happy 18th Birthday Noah

 Happy birthday, Noah!!!!  
I'm so glad God chose me to be your Mom. Last week  when I got overwhelmed and stressed out, I said I was tired of being your Mom. It's not that was tired of you, I was tired of all the things that come along with being a special needs Mom. I love you to the moon and back. We have an unspoken language that allows us to communicate. We have a bond that is knit tightly in my heart. I would be totally be lost without you. You are my world sweet boy and I love you.....
 I love to see you and or Dad interact with each other. It makes my heart melt watching the love between you two.
 Your sisters Morgan and Emily have been through a lot over the years. They didn't get the attention that deserved but that never stopped them from loving you.
 It's hard to believe that you are 18 years old. You will always be my little man.
You are only 4ft. 9in. tall
You weigh 72lbs 15 3/4oz.
You wear 12/14 boy shirts
and 14/16 boys pants
Your shoe size is 13/1 toddler
I'm so glad you are still small enough for me to hold and cuddle and you still allow me to.
Happy birthday, Noah!!!!
You are well loved.

Monday, January 25, 2016

To the Shelby Whippets community,

To the Shelby Whippets community,

There are times when the words “thank you” don't seem adequate. I don't mean that we don't feel gratitude; quite the opposite. We feel so much gratitude that the simple words “thank you” just don't seem to convey our appreciation.

This past Saturday night at the Whippets game against St. Peter's, my family was the recipient of what I can only describe as the most selfless display of giving that I have ever seen. But I'm getting ahead of myself.

My son Noah, who will be 18 soon, was born with trisomy 8, a genetic condition. He was also deprived of oxygen at birth, which resulted in cerebral palsy. He cannot walk, talk, or even sit up on his own. He lives his life in a wheelchair.

All we've ever wanted for Noah is to be accepted by his peers despite his limitations. We've been taking Noah to the boys basketball games for several years, and in that time, he's been called the Whippets number one fan. He won the Sixth Man award several years ago.

His mother and I use a van modified with a ramp to get Noah around. It wasn't new when we acquired it, but it more than fulfills our needs. Recently, the van has been experiencing problems which we found out would be quite costly to fix. We had no idea how we were going to afford these repairs.

Word of this got out and Noah's Earth angels took over. We were informed that at the basketball game Saturday evening, the 50/50 drawing, the three-point shooting contest, and other events would all be used to help raise the money needed to fix Noah's van.

We didn't know what to expect. The residents of Shelby have been very good to Noah in the past when we've held benefits for him. We've always felt blessed to live in a community that responds so quickly to help others.

To say the money-making efforts were successful would be an understatement. The total collected was announced at the game; I won't bother to write it here, but rest assured, the repairs to Noah's van are paid for, with extra left over to start a contingency fund for the future.

It wasn't only the Shelby fans who responded. We received an envelope of money from St. Pete's fans as well, and the Spartans JV team all came over and gave Noah fist-bumps before their game started. Classy stuff, St. Pete's. Thank you so much.
So, with all this gratitude in our hearts, and the words “thank you” feeling quite inadequate, what words do we use? I wish I knew.

Thank you, Shelby.

I think I'm wrong when I say those words are inadequate. They're perfect in their simplicity. It's the heart behind the words that completes their meaning.

From the very bottom of our hearts, Thank You, Shelby.

Thank you for once again responding to Noah's needs. Thank you for stopping to say hello to Noah and to us when you see us out and about. Thank you for the love we feel around us every day as we continue our journey as Noah's parents and caregivers. And thank you for embracing both Noah, because he's so deserving of love, and us, which helps keep us strong as we live day to day trying to make Noah's life as complete and full as we can.

Thank you.

It's a privilege and an honor to live in this community.

Thank you, and God bless you all.

Noah's family
Scott Sheaffer, Susan Sheaffer, Emily Sheaffer, Brad and Morgan Schneider

Friday, January 22, 2016

A Much Better Week

As I look back on this week, I can say it has turned out much better then last week. Last week I was really struggling. This week I took the time to reflect and try and get to the bottom to why I was feeling so beaten down with life. As I looked at each layer of it I tried to do something to make it better.  I can proudly say that I have dealt with must of it and feel so much better. Bottom line its my job to make sure Noah is Happy, Healthy and loved.
 Doesn't he look so awesome sitting up in his bed by himself? The things wrapped around him are his bladders for his ABR machine he wears to bed.

At this point he was getting tired and was about to go all the way down and I asked him to look at me and this was the look I got. the little booger....
One of things I was struggling with is our ABR therapy. I was feeling overwhelmed with it and Noah wasn't cooperating at all. With a phone call into the ABR center and new plan of action, I have tweaked what we were doing and worked on our ABR schedule and it has went much better this week. In fact Noah is back to falling to sleep during therapy, which means we can get much better quality of therapy in. 
It can be very hard sometimes but I just need to keep trusting in God that he is going to help me deal with what I have been given.

Friday, January 15, 2016

Give Up Give In or Give It All You Got

Most days I don't have a problem putting on my big girl panties and do my best to be the best special needs Mom I can be. Not sure why but this week has been really hard for me. Every once in awhile I tend to have some bad days and it feels like I can't keep doing what I'm doing for one more day or sometimes even for another second. 
As I was putting Noah to bed one night this week, I hate to admit that I had the thought that I just couldn't do it anymore. I even told Scott I felt bad saying it but I was just tried of being Noah's Mom as he held me as I cried. What is wrong with me that I even felt that?  Please don't feel ill of me. I love Noah with all of my heart. I would do anything for him but some days are just hard. Being a special needs Mom can be a very lonely place to be. Noah and I spend a lot of time together doing things that are making him stronger and giving him a better quality of life. Sometimes my life can be so overwhelming that its so hard to do anything. I hate when I get into feeling this way. I'm going to do my best to wake up in the morning and remember how blessed I am and keep being the best Mom I can be to Noah. Because, I do love him so very much and I thank God that I get to have such a beautiful soul to love.

Friday, January 8, 2016

A Long Day at the Clevelnd Clinic

It was a long day at the Cleveland Clinic. We left the house when the sun was rising and got home when the sun was setting. It was beautiful day for a drive.
Appointment #1: ENT to see if he still had fluid in his ear. Because of his implant he is acceptable to meningitis with the fluid in his ear. Unfortunately the fluid was still there, in fact it was in both ears. He is in having surgery on January 26th to have tubes put in his ears. Happy birthday, Noah you get to have surgery 2 days before your birthday. Lucky you...NOT
Appointment #2:  Gastroenterologist  Dr. Kaplan We had a good talk about Noah's height, weight and how I feed Noah. The Cleveland Clinic has come a long way from when I first started a blenderized diet for Noah. Dr. Kaplan used to really struggle with the idea I wasn't feeding Noah formula through his tube.She now supports me and the nutritionist is on board and willing to support me. Speaking of Noah's height and weight, He is 72lbs 15.6oz and he is 4ft. 9in tall. He has only gained about a 1/2lb, and grew an inch in the last 6 months. I think it's because of the sinus infections he has dealt with in the last 6 months. I think I figured out what has been causing the sinus infections. I changed what protein powder I was using to one that insurance would pay for and he has been struggling with sinus infections for the last 6 months. Gotta love those light bulbs moments. I'm just sorry I didn't figure it out sooner.
Appointment #3: Pulmonary with Dr. Royce He was very pleased with how well Noah's was doing and advised us to keep doing what we are doing.
Appointment #4-5 Dr Royce ordered a chest x-ray for future reference of bronchiectasis. It is the chronic collapse of his lungs in the lower left lobe from all the pneumonias in his lifetime. Good news is it hasn't getting any worse and is quite stable. For the first time a x-ray shows that Noah has a curvature of the thoracic spine with an apex angulation. I have seen this myself when I'm doing ABR and have discussed with my ABR trainer Mariana. She said in all reality it has always been there but has masked by Noah's other structural problems. Good news that with it finally showing itself means we are well on our way to fixing it.
Dr. Kaplan ordered for some blood to be drawn to check his nutrition levels in his body. Good news is Noah's protein levels are finally in the standard range. I'm going to make an appointment with his nutritionist here in Mansfield so we can go over the results and discuss what I need to do to make his nutrtion the best it can be.
The day ended up being very long and found out some good and bad things that are going on with Noah. I always say things could be a lot worse and we are very blessed. 

Friday, January 1, 2016

A Great Small Town

I'm so glad our kids have grown up in a small town. I feel so blessed to have a community that supports us and sees Noah as the great kid that he is.