Showing posts with label diet. Show all posts
Showing posts with label diet. Show all posts

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.

Thursday, November 11, 2010

Never thought I would ever hear......










Noah Nov. 2010
Noah Dec. 2009

Wow he's fat. Let me back up about a year ago. Noah had just gotten out of the ICU at the Cleveland Clinic. He weighed 45lbs. Wore a size 8 and could still wear the largest baby diaper. Yes he was very skinny and yes he needed to gain some weight. His doctor started Noah on Bena-calorie and Bena-protein to hopefully help gain a little. By February Noah still hadn't gained anything. For whatever reason, maybe his body started processing things differently, I'm not sure but, in April Noah started gaining weight. Each time Noah went to the doctor through the summer he had gained a little bit more. I kept asking the doctor are you sure he needs to gain some more weight? He kept saying yes.(He was always wanting Noah on the growth chart) I second guessed that and fed him a little less but, he still gained. I started jokingly calling him lead butt. Because most of the weight was around his middle. Last week he had an appointment with his gastro-enterologist. The appointment went pretty well. I explained to her that Noah had gained 21lbs since April and I was wondering if his g-tube was still the right size. She asked what he was eating and commented on how good he looked. She then proceeded to lift his shirt..... she took a few seconds and then said " Wow he's fat!" I was thinking to myself..... someone just called my little boy fat. Are we still talking about the same little boy that looked so sickly a year ago? I then thanked her for understanding and seeing the same thing we have been seeing the last 6months. Noah has gained weight, he is healthier and doesn't need to gain anymore weight. He is actually still 6lbs shy of being on the growth chart. I feel (and his gastro-enterologist feels) that he doesn't need to be on the growth chart.

Thursday, March 19, 2009

November 21 2007

My last post I forgot to mention that Noah has gained 2 lbs in the last month. When his nutritionist and I sat down to discuss a blenderized diet her goal for him was to gain 1/4 of a pound a month. Must been all that good healthy food he's been getting. I talked to her yesterday and she said to cut his calories down to 1550 instead of 1800. So we'll see how it goes......
Have a Happy Thanksgiving,
The Sheaffers

Noah has been doing wonderful. He still hasn't missed anymore school. He has been on a blenderized diet now for about a month. He is looking so healthy. I took him to his nutrtionest last week and she was quite pleased with his diet. Although she would like Noah to be getting 1800cal. and 85g of protien. (To work on his lean muscle mass) Speaking of muscle..... One of his therapist saw him for the first time since last May. He said," Everytime I see Noah he has better tone." Yeah Noah!!!!!
Noah was asked by his therapist to be in the Mansfield halloween parade. He went as Frankenstien in his stander. He had so much fun. He talked and laughed all the way home.
Happy Halloween
The Sheaffers

October 1 2007

Noah has been doing great. He is toleratiang his new diet well. I haven't even had to give him anything to help with his bowels. He used to be so constipated all the time.
He has been been so happy lately. It's been so good to hear him laugh and enjoy life.
I believe he is enjoying himself at school as well. He seems pretty happy when I pick him up. He is still has a pretty good record. He has only missed 2 days so far.
Thanks for checking in on Noah,
Susan
Noah says GO INDIANS