MRI Delayed

Not too much to report today. Nolan's MRI was rescheduled until tomorrow at noon due to issues scheduling with anesthesia. He will have to be sedated for the MRI, so I imagine we will be in the hospital until at least Thursday. Once I hear he is being discharged, I will make my way back to Pittsburgh (if before Friday). As for now, I am trying to stay focused on being productive at work and home. The minute I unpack, I repack. It is exhausting. I am so excited for this to be over and all of us to be home. But, then reality hits me knowing that this won't be "over." We have at least a year or more of therapy - and a lifetime of medicines and worry. I am sure we will acclimate to all of this, but coming into it for the first time is overwhelming and scary. But, I know Matt and I will make a great team - along with our family and friends.

Matt didn't report too much on the day since it was pretty quiet. He did have physical and speech therapy. The word is that he had a nice throw up for the PT, however, that was the only one of the day! (So I have heard!) The doctors did start him on erythromycin to help aid with the gastric emptying, which should help decrease the throwing up. Also over the weekend they adjusted his Cell-cept, an anti-rejection medicine that can cause nausea. Hopefully these two adjustments will help him out. He has lost some weight, so they are just hoping to maintain where he is at and continue to increase he weight accordingly.

So, it's already the month of March. Tomorrow will mark the 5th month that we have been at Children's Hospital of Pittsburgh. I still have a tough time accepting that this is real life. I know we will learn and our new life will become the norm. I am still SO incredibly amazing at the support we have received during these past 5 1/2 months. I loved every minute of the benefit two Sundays ago because I got to see so many of my friends and family - and meet many new friends that have been following and praying for us during our journey. I hope you ALL know how loved and comforted we feel because of all of you. I have moments where a thought punches me in the gut and I immediately shed tears. But, I remind myself how lucky we are to have a strong support system who will never let us fall no matter what happens in life. We are so blessed.

I HOPE I have news as to what our near future holds. We are trying to wait patiently to close the inpatient chapter of our lives and begin our new life on the outside. So many adjustments to be made, so much to learn...but also so many new memories to make. I can't wait to look around and have Matt, Riley and Nolan all in the same room, outside of a hospital. It's the little things that mean so much!

#nhos