Finally A New Chair

 After a 2 year fight for a new wheelchair, Noah got discharged from the hospital at 2pm on Friday and we headed to Millers because we weren't leaving Cleveland without his new chair!!!

They sat Noah in his new chair and figured out what needed to be changed and tweaked to fit him better. 

 Noah was able to take a quick break while he waited for them to make changes.

 Then back in his chair to make the final adjustments.

The physical therapist that worked with us noticed how much better he sat up from the last time she saw him. I told her again that we do ABR. Thanks ABR,  Noah wouldn't be where he is without you. 

 We are happy to say, it's the best chair he has ever had.

Our Healthy Streak Ended

 On Monday Noah had been sick for about a week and I decided it was time to get him checked out. Instead of calling his pediatrician I made an appointment with his pulmonologist. On Wednesday my Mom, Liam, Noah and I headed to Twinsburg to see Dr. Hart.

 I thought it would be a quick check in with the doctor and get some antibiotic and be on our way. Unfortunately, his chest was retracting and his pulse ox was 86. 

 This little guy was the best baby. He was well taken care of the nurses. One even made him some macaroni and cheese for his lunch.

 Liam had fun and occupied himself with anything he could find.

 It was so hard but I sent Noah in the ambulance by himself and met him at the Main campus.

I think Liam was  calling his Mom and telling her to come quick he was running out of things to do in Uncle Noah's room. 

 Grandma, my Mom just told me that I have another 3 hours in this place...….

Finally after taking a walk to see the fish, Mommy and Daddy came to get me.

 After a night of breathing treatments, steroids and antibiotics, Noah had gotten a little bit of rest and doing so much better. Goal of the for the day was to get out of the ICU and move to a regular room, and continue to improve so he could be discharged on Friday.

 I think he is saying, Get me out of here!!!!

 He is such a Goober. It was determined through blood work that Noah had Parainfluenza 3. Yeah I  have never heard of this one either. He started at 15L. of oxygen and worked himself down to 1 liter by Thursday morning. 

By Thursday evening Noah had weaned himself of oxygen and continued to stat at 95 all night.

His biggest problem while being in the hospital is being able to rest for any amount of time. When the doctors were doing their rounds on Friday I convinced them that Noah would rest and heal better at home. They weren't doing anything for Noah that I couldn't do at home, so they discharged him.

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.