Today is Rare Disease Day

Happy 19th Birthday, Emily

 

Nineteen years ago we were blessed with a beautiful baby girl. She has been the best little/big sister ever. God knew the perfect child to take on the role of sister in our family.

 

 Morgan and Emily have grown up to be very close. They helped  each other when I was  busy with Noah.

 

Emily loves her little brother unconditionally. She has never showed any type of resentment towards him. She is my right hand gal. I don't know what I would do without her.

Thank you, Emily for being a great little/big sister.

 

Happy birthday, Emily!!!  We love you.

Sixth Man Award

 We went to see the Shelby basketball team play their last home game in Joe Yohn Gymnasium tonight.  Next year, the new school will be open and the team will play their home games in a brand new gym.  It was Senior Night as well.  After all the seniors were introduced, the "6th Man Award" was given--given to Noah! 

 We were all shocked to hear Noah's name when it was announced.  It was said that Noah has taught all the guys on the team a lot this year.  We would say the same about the team.  They've taught us that acceptance and understanding are still important to the youth of our country. 

 Here's a picture of us with the 2013 seniors.  Left to right, front:  A.J. Bihl, Austin Rohde, Noah, Andrew Baird, and Tyler Young.  Back row:  head coach Troy Schwemley, Susan, Scott, and Grant Fenner (doesn't Scott look tiny next to Grant... he's tall!) 

 Turns out Emily knew about the award all along.  Troy Schwemley told her to make sure we were there tonight, and to make sure we brought our camera.  She kept it a secret for more than a week!  She brought Morgan with her to surprise us (they were at work, and left for a bit to come to the game).

 Once again, Noah was in the line to slap hands with the team as they're introduced before the game.  Noah's favorite player, Austin Rohde, has given Noah a gift at each game when he comes through the line. 

Austin, we can't thank you enough for leading the team in showing everyone that Noah is just a kid like everyone else.  It means so much to us that the team would take the time to do this over and over again this year. 

Noah is the 6th man of the Shelby Basketball team this year, but never fear... we'll all be back next year for all the home basketball games.  We're even thinking of maybe going to some of the away games next year.  And we'd like to start including other sports as well. 

Thank you, Shelby Whippets Basketball, for voting Noah as your 6th Man!  The Sheaffer family, especially Noah, appreciate it very much!

Just Like Me

 Meet Noah Bunny

 He has a wheel chair.

 Glasses

 Hearing aides

 G-tube (The one that was too short back in November that ended up giving him a staff infection.) His belly is much better today after a week on antibiotics.

His Peach's Neet Feet. (Although they could use painted. Maybe one day I will get brave and be creative. Probally not.... I would probally mess them up big time.)

Long Day at the Cleveland Clinic

Yesterday Noah had 4 appointments at the Cleveland Clinic. We left the house at 6:30am.

The first appt. was with his pulminologist. She was very pleased with how Noah looked and was very impressed that he has only gotten one cold this winter and fought it all on his own with no doctors visits. He doesn't have to go back until June. Our next appt. was with his gastrologist. He weighed 57lbs. 14oz. He hasn't gained any but, more importantly he hasn't lost any either. We actually went to see his gastrologist because since November we have been having problem with his g-tube sight. For last 10 years his g-tube sight has looked beautiful. They are always very impressed on how it looks. In November I changed his g-tube and noticed it was a bit tight. In 2 days it was very red and sore to the touch. I took it out and noticed that the part that goes down through his body into his stomach was 1/2 as long as it should be. I then put in a new one and have struggled with it ever since. One day his shirt was saturated with old blood and it continues to be sore looking and oozing goo. When his gastrologist looked at it she said, "To be honest compared to other g-tube sites his doesn't look that bad but, compared to what Noah's usually looks like I will give you a script for an antibiotic." Gosh I hope that is the answer. I hate that I haven't been able to get it to look better. Noah's next appointment was with Dr. Maholtra his ENT and the doctor that is heading up the Cochlear Implant evaluation for Noah. He feels that Noah is a good candidate for a Cochlear Implant and will need a Cat scan and a MRI to see if he is structurally sound to have a implant. They will be scheduled in the very near future. Noah also saw the 3 audiologist yesterday (They are also on the evaluation team.) to determine how much Noah is hearing with his hearing aides. They felt the same way we did, that Noah isn't responding to much to sound at all. I wonder if getting the implant will help? He deserves anything that will give him a better quality of life.

 We made it home in time to see the Shelby boys basketball team beat Galion.

Noah sitting at the game. What is he looking at you ask?

The boys warming up of course. One of the boys yelled out, "Noah"

They got one of his signature goofy grins.

Going to the game was a good way to end a very long day at the Cleveland Clinic.