Nurse Appreciation Month

We would like to thank all the nurses that have taken care of Noah. From the ER to his PICU stays. You have all showed so much compassion and took such great care of Noah.  But there's one particular nurse who needs to be singled out here:  Deanie Kehres.

 Three years ago  Scott and I  were needing time to reconnect as a couple and looking for someone willing to keep Noah once a month so we could get away by ourselves.  What we ended up with was not only that, but new friends for life.  Deanie Kehres,  mother of two of Noah's favorite basketball Whippets, responded to our plea almost immediately.  She's a nurse, and she already knew Noah from the basketball games, so we felt safe leaving Noah with her.  For most months since, Scott and I have taken Noah to the Kehres house--usually a Saturday--and left Noah there with Deanie and her family.  We'd then pick a direction and go that way and see what we found.  We were usually gone for 8 hours or so.

From finding time in both family's schedules for a Saturday that worked to having our day trips ruined by Scott's mandatory overtime, we've gotten away quite a bit.  Scott and I enjoy our time away and we've found some interesting places to go, like the Neil Armstrong Museum in Wapakoneta, and the Marblehead Lighthouse, among others.  

And through it all, Deanie, her husband Todd, and sons Tristan and Brock, have all bonded with Noah (and us) and become the respite care Noah needed and the friends that Scott and I needed.  From getting past the initial experiences of feeding Noah and changing his diapers--both poopy blowouts and geysers erupting--to reading Noah's facial expressions and decoding his body language, Deanie and the others have come to know Noah practically as well as we do.  Noah has spent time with Todd going over game video or just watching sports on TV, and has spent time with them out at their camper at KOA, to hanging out with Brock watching March Madness.

There was also that one LifeFlight trip where Susan was 5 pounds too heavy for the trip, so Todd went with Noah so he could be Noah's voice until Deanie drove Susan up to the Cleveland Clinic.

There are no words of thanks that feel adequate to the gratitude Scott and I have for the Kehres family.  They've become part of our extended family too.  We love and appreciate them so much for their time and support while Scott and I have reconnected as a couple and become each others best friends again.  

Noah/Kehres Day

Yesterday we enjoyed our Noah/Kehres Day.

I've been wanting to check out the Wizard Oz exhibit at Easton mall.

Susan got to pretend she was Almira Gulch!

Scott got to pretend he was the Wizard!

This is a neat little exhibit where you can change the lighting effects on the Wizard.

A pair of replica ruby slippers!

 

When Scott turned the  gear the the lights came on.

Noah/Kehres Day

We had a beautiful day on Saturday enjoying  our Noah/Kehres day.

We went to German Village. We checked out the Bookloft. It's hard to believe but I was the one that walked out with books not Scott. I can't wait to share them when with someone special.

 

I love getting picture text while we are out. Noah is so loved by hte Kehres' and Zoro too. He really enjoyed his day with them at the KOA campground. It was a bit chilly but it sure was better then sitting and sweating the whole day.

Neil Armstrong Museum

On Saturday Scott and I went to the Neil Armstrong Museum for our Noah/Kehres day.

We had a fun day doing something that Scott used to do with his Great Aunt Martha. It was fun to watch Scott enjoy something he did when he was a boy. I could see the sparkle in his eye as he took it all in again.

The last time Scott was here was about 40 years ago.  I'm glad he shared it with me and I'm so glad we had a great day enjoying each other.

I can't imagine spending up to 2 weeks in a capsule like this.

 

I love getting text while we are out from Deanie. Our little man is so loved.......

One Year of Noah/Kehres Day

It has been one year of being blessed by the Kehres family.They have made leaving Noah with someone besides family so easy. We may have thought about Noah while he was in their care but we were never worried.

Noah loves going to the Kehres' He loves to hangout with Todd and watch sports. In fact the last time he was at their house Noah got upset because Todd and had left to go do something. Deanie ended up calling Todd to tell him he needed to come home because Noah wanted him. Talk about spoiled.....

 

 Thanks you again Kehres' family for all you do. Scott and I have really enjoyed our time together. It has really made a difference in our relationship with each other. You've been such a blessing to us and the words thank you don't even seem enough. We appreciate more then you will ever know.

Our 6th Noah/Kehres Day

I look back on the last 6 months and realize how far Scott and I have come as a couple. A lot has to do with our opportunity to get out and spend some time together, just the two of us. It;s been a great six months going on little dates with each other again.

It was a beautiful day for a picnic lunch at the lake.

 

Noah had fun with his new friend Collin at the Kehres'. Scott and I are so blessed to have someone that we can trust to take care of Noah while we spend time together. Even though it still feels weird to not have Noah with us, it's something we look forward to every month.

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.

Noah/ Kehres Day 2

Scott and I had a great day in Marblehead. It was a beautiful day by the lake.

It was a bit cold but the view was amazing. Next time we'll have to pack a picnic lunch.

While we were gone Noah got to enjoy his day with the Kehres'. We are so blessed to have someone we can truly trust and they love having him around. He went on a walk and cried when they went back home, so they went for another walk. I guess he is pretty easy to spoil because it sure didn't take the Kerhes long for Noah to wrap them around his little finger.

Noah even got to help the Kehres get their camper at the KOA ready for the summer.

Talk about being spoiled, Scott and I were to be out spending time together without Noah and we couldn't help ourselves when we found some pjs we knew he would like. How can you not spoil a face this cute? 

I would just like to thank the Kehres' from the bottom of our hearts for making respite not scary anymore. Noah gets so excited when we tell him he is going to your house and Scott and I have really enjoyed our time together. Once a month just seem enough only because Noah enjoys spending time with you.