Friday, January 8, 2016

A Long Day at the Clevelnd Clinic

It was a long day at the Cleveland Clinic. We left the house when the sun was rising and got home when the sun was setting. It was beautiful day for a drive.
Appointment #1: ENT to see if he still had fluid in his ear. Because of his implant he is acceptable to meningitis with the fluid in his ear. Unfortunately the fluid was still there, in fact it was in both ears. He is in having surgery on January 26th to have tubes put in his ears. Happy birthday, Noah you get to have surgery 2 days before your birthday. Lucky you...NOT
Appointment #2:  Gastroenterologist  Dr. Kaplan We had a good talk about Noah's height, weight and how I feed Noah. The Cleveland Clinic has come a long way from when I first started a blenderized diet for Noah. Dr. Kaplan used to really struggle with the idea I wasn't feeding Noah formula through his tube.She now supports me and the nutritionist is on board and willing to support me. Speaking of Noah's height and weight, He is 72lbs 15.6oz and he is 4ft. 9in tall. He has only gained about a 1/2lb, and grew an inch in the last 6 months. I think it's because of the sinus infections he has dealt with in the last 6 months. I think I figured out what has been causing the sinus infections. I changed what protein powder I was using to one that insurance would pay for and he has been struggling with sinus infections for the last 6 months. Gotta love those light bulbs moments. I'm just sorry I didn't figure it out sooner.
Appointment #3: Pulmonary with Dr. Royce He was very pleased with how well Noah's was doing and advised us to keep doing what we are doing.
Appointment #4-5 Dr Royce ordered a chest x-ray for future reference of bronchiectasis. It is the chronic collapse of his lungs in the lower left lobe from all the pneumonias in his lifetime. Good news is it hasn't getting any worse and is quite stable. For the first time a x-ray shows that Noah has a curvature of the thoracic spine with an apex angulation. I have seen this myself when I'm doing ABR and have discussed with my ABR trainer Mariana. She said in all reality it has always been there but has masked by Noah's other structural problems. Good news that with it finally showing itself means we are well on our way to fixing it.
Dr. Kaplan ordered for some blood to be drawn to check his nutrition levels in his body. Good news is Noah's protein levels are finally in the standard range. I'm going to make an appointment with his nutritionist here in Mansfield so we can go over the results and discuss what I need to do to make his nutrtion the best it can be.
The day ended up being very long and found out some good and bad things that are going on with Noah. I always say things could be a lot worse and we are very blessed. 

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