Tuesday, January 31, 2017

ABR Training 2017

Noah loves getting out of the house even when he is traveling to Canada for ABR training. Although he would like it a lot better if we were able to bring his bed with us too, because he sure doesn't sleep well when he is in a hotel.

Our evaluation went really well. I do a blog post about it when I get and it via email.
The next six months we are going to be working a lot on his chest/lungs, head control and remapping his brain to realize his does have hands and feet.  The new techniques have brought amazing results in these areas. I'm really anxious to see what the next 6 months will bring.  
Noah and I were glad that Daddy/ Scott could join us this time. It had been 5 years that Scott has been able to go with us.
We spent our free day on Saturday to see the city. We found a really nice mall, of all things one of the stores in the mall was a Walmart. We were able to find a chair/stool that will aide in doing the therapy more comfortably for me there.
The best part of training this time was seeing our trainer Gavin. It has been five years since he has seen Noah. He had left ABR and has now returned. It was so good to seem him. When I look at the difference in Noah, I see how alert he looks and how much stronger he looks. In the 2017 picture Noah is looking at Gavin like yeah buddy where have you been. :) 

Saturday, January 28, 2017

Happy 19th. Birthday Noah!!!

Happy 19th birthday sweet Noah. It's hard to believe you are 19 years old today. Some days the road has seemed so long but other days it seems that years have flown by. You have taught me so much. I'm a lot stronger person then I ever thought possible. I'm  more passionate then I would have been without you in my life. Because of you I'm a better person. I'm so glad that God chose me to be your Mom. Do I want things easier for you?  Absolutely.... but I really wouldn't want you any other way and then you wouldn't be the Noah we know and love. You have made me who I am, just the way you are. I like who I am because of you.

I so love this quote....
God gives special needs children to regular parents, who choose to step up and be strong for their child!! That special child teaches you life lessons that you never could have anticipated, and throughout your journey together, you learn how to become the parents that your child needs.

Friday, January 20, 2017

Cleveland Clinic Day

When we go to the Cleveland Clinic, I usually schedule all his specialist on the same day. It makes for a long day by it's worth it. With a 2hr drive it's nice to not have to come all the time. 
Noah first appointment was to get his teeth clean. He gets a dose of Valium to help calm him a bit. It helps but it still takes Scott and I to hold down so he can get his teeth cleaned. He is small and mighty. It may not look like it but he is very strong. Good news he didn't have any cavities.
He then had an appointment with his audiologist. It didn't go very well because he was still laid  back because of the Valium and his wrestling match he just had. They need to him to be able to respond to sound and voices to see how well his implant is working. We need to make sure to schedule the audiologist appointment first next time. I did mention while at this appointment that Noah's ear was bleeding a few days before the appointment, so they sent us over to see the ENT to then find out that he had an ear infection. He has been on antibiotic drops and goes back on Feb. 27th to get it rechecked.
Noah's next appointment was with his gastroenterologist. This the appt. that I always fret over because it's the one that they always are on me about his size, weight and what I feed him. Over the last couple of years it had gotten better and they are trusting me more. I have fought and worked so hard for every pound Noah has gained. At times it has felt like all I do is make food and feed Noah. But, it sure has paid off. It the last 6 months Noah has gained over 8 lbs. Yes you read that right.....Noah now weighs 78lbs 11oz. and 4ft. 9in tall. The best of that is they feel Noah is just the right size and looks really healthy. The hard part is now that want him to maintain. How do I do that? For the last 19 years of have work so hard for him to gain weight. Getting him to maintain weight is a whole new concept for me.
The best part of our day was eating lunch with our good friend Pastor Steve. It was good to talk and catch up. After lunch we had to see Noah's nutritionist and discuss how many calories he should have now. We were told 2000. I sure hope I can do what I need to do and keep Noah from losing weight.
We then had to get Noah's blood drawn for some test to make sure his body is getting the nutrition he needs and some other things. We did find out that his liver enzymes were off and have to have it rechecked. I sure hope it's because of his ear infection and not something else.
Noah's last appointment was with his pulmonologist.  Something that was said while looking at Noah's lungs from PICU stay last fall was that the doctor said he could see the affects of second hand smoke. Really?  We go out of our way to keep Noah away from second hand smoke. So, we aren't real sure how to take that.... I guess we will continue to keep him away from smoke the best we can. He really  isn't around smokers that much.  Besides putting him a bubble I don't know what more we can do.

Tuesday, January 17, 2017

Ohio State Men's Basketball

Scott, Noah and I were offered tickets to any game we wanted to go to. We chose the game that they played Michigan State. We bought Morgan, Brad and Emily tickets for Christmas.
We started off with pretty good seats but were soon moved to seats on the floor.
Noah was hoping to talk to Trevor Thompson but by the time we got our real seats they were done messing around on the court. Can this goof ball ever smile with his eyes open?

Brutus stopped by for a picture. What a great day we had.

Noah got really excited when Ohio State started really pulling away for the win.

When we were leaving one of the security guys said Noah needed to come back since he was the good luck charm.  We told him if they give us seats each time we would be glad to obliged.
Thank you Ohio State for a fun filled  family day and a Win!!!

Thursday, January 12, 2017

Columbus Blue Jackets

Through A Kid a Again we got to go to a Columbus Blue Jackets game. A Kid a Again is an organization that plans family fun activities each month for families that have been granted a wish through Make A Wish.
This year we invited Noah's Uncle Dan to go with us because Scott was unable to go with us.

Noah always enjoys getting out and about doing things we wouldn't normally do on our own.

I think Noah is a good luck charm. The Bluejackets pulled off a win in overtime.

Friday, January 6, 2017

Grateful for the Impact

I picked up Noah's high school yearbook today.

You have no idea what an impact the Shelby community and his classmates has had on Noah as well. Years ago all we wanted for Noah was to be excepted. The community and the Class of 2016 has done just that. We are so very grateful that we live in our little town.Thank you to everyone that has taken the time to make Noah feel accepted.