Sometimes Life Isn't So Fun

Most of my blogs post are of our fun journey with Noah. I try to focus on all the fun things we can do with Noah instead of the not so fun things. This last week was one of the not so fun things we have to deal with. Our many trips to the Cleveland Clinic for Noah's appointments.Most of the time they go really well and we get to hear how well he is doing. Last week started out having his teeth cleaned. He did pretty well after we gave him some Valium to help calm him down a bit. Although he did accidentally bite the dentist. Sorry Dr. Habercamp. Good news is he didn't have any cavities.

Our next appointment was with his gastroenterologist Dr. Kaplan. She was very pleased with Noah even though he lost 4 1/2 lbs. and his gtube looked beautiful. I take pride in how good it always looks. Now I just need to find a way to get him to gain some weight along with feeding him every 2 hours. He had some blood work done that showed his sugar at at 203. I had it redone on Tuesday after fasting for 12 hours and it was 110. I'm sure it was because the yogurt and applesauce he had before last weeks blood draw. It's always something with this little man.

Noah's last appointment was his pulminologist Dr. Royce. Noah has been pretty healthy for quite awhile but while sitting in this appointment we heard something that really shook us to our core. While looking at some xrays of Noah's lungs from January, Dr Royce pointed to Noah's lower left lobe and said here you can see Noah's chronic lung disease. That was the first time we heard someone say it  that way. We knew he has been dealing with Bronchiectasis (brong-ke-EK-ta-sis)  It's a condition in which damage to the airways causes them to widen and become flabby and scarred. Bronchiectasis can lead to serious health problems, such as respiratory failure, atelectasis (at-eh-LEK-tah-sis), and heart failure. It just really put Noah's health into perspective real quick. That's why over the years we have made sure Noah isn't around cigarette smoke and try to keep him away from germs. The idea of him getting really sick always scares me to death. I just hope we can keep Noah as healthy as we can. 

Now on to a much funner part of the post. On Saturday we helped out at the last Tim Hess Golf Scramble. We have really enjoyed helping out over the years.

Our job is to grill hotdogs for the guys and gals to have a snack while they are golfing.

This year the golf outing fell on our new Noah/Kehres day as well. Scott and I planned on going to a movie after we were done helping but dear Deanie was helping at the golf outing and took care of Noah as well. It felt odd to see Noah across the way and not be taking care of him but it also felt good that he was well taken care of while Scott and I were busy.

I'm so happy that we have found someone to take care of Noah while Scott and I reconnect with each other. He sure is well loved.

Speaking of reconnecting, Scott and I ran into our friend James Miller at the movie theater. He is a teacher in Taiwan, he is home for a visit. It was fun watching Tarzan with you.

 

Noah always go to sleep with a smile on his face after spending the day with the Kehres' 

Noah, I hope we can keep you happy and healthy for a very long time.