Thursday, May 25, 2017

Happier and Healthier

Today marks 3 weeks from when I made the decision to keep Noah home and not take him to school. I'm so glad I did..... we are back to not having to do breathing/vest treatments everyday, sometimes several times a day. What a difference it has made for him, he is happier and healthier. At times it has been hard but it so worth it. I'm making changes in my life that will help me find time that I can have some me time as well. Sometimes adult conversation is all I need. It's a quiet lonely time when your child can't carry on a conversation with you......

Monday, May 22, 2017

Neil Armstrong Museum

On Saturday Scott and I went to the Neil Armstrong Museum for our Noah/Kehres day.

We had a fun day doing something that Scott used to do with his Great Aunt Martha. It was fun to watch Scott enjoy something he did when he was a boy. I could see the sparkle in his eye as he took it all in again.

The last time Scott was here was about 40 years ago.  I'm glad he shared it with me and I'm so glad we had a great day enjoying each other.
I can't imagine spending up to 2 weeks in a capsule like this.

I love getting text while we are out from Deanie. Our little man is so loved.......

Sunday, May 14, 2017


Noah and Bindi have busy getting out in the community.
They have gone to Dalton's AAU basketball games.
They went to go see Guardian's Of The Galaxy together.
Bindi is never to far from Noah. This is her waiting while I feed Noah.
She loves to sit on his lap.
It's been so neat to watch their relationship grow.

Sunday, May 7, 2017

Sometimes You Have To Do What's Best

Sometimes you have to do what's best for your child. The last ten months have been rough on Noah. He has been sicker then he has been in a long time. It seems as soon as we get him feeling well, he is sick again. Last year at this time Noah was enjoying all the things that came with graduating from high school. He had the best summer doing all the things he loved to do. Then it came for him to go back to school. Yes he went back to school, it gave me a much needed break from taking care of him. That's when he became very ill and was life flighted to the Cleveland Clinic. He has been fighting one thing after another ever since. I have come to a conclusion, he is upset that he is still going to school and has been making himself sick to stay home. I told him long time ago that he wouldn't have to do that again. I feel awful that it has taken me this long to admit it. I feel selfish in saying I enjoy my time away from him. I knew he was somewhere where people took great care of him and loved him. I decided that enough was enough and this week I went into his classroom and let them know that Noah wouldn't be returning. Noah is over the moon excited to be home every day. Now I think I need to find someone who is willing to come to the house and take Noah for walks or maybe just hang out so I can have some me time. Our Noah/ Kehres Days have taught me that it's okay and even good for Noah to spend time away from me as well.
Sorry Noah that it has taken me so long to listen....

Thursday, May 4, 2017

Bindi and the Clevlenad Clinic

Bindi had her first trip to the Cleveland Clinic. She really helped Noah not be so nervous. Usually he gets all junkie sounding and has a hard time sitting still.
With Bindi by his side he was pretty relaxed. Unfortunately Noah has to have tubes put in his ears again. I wonder how relaxed he will be with Bindi?Her only down fall she has with going places with us... she needs to learn to take the opportunity to go potty when she can.