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.

No comments: