Preparing For Our New Norm

I want to start out today's post by saying how amazing Nolan's benefit was on Sunday. I feel like I have been at a loss for words since then. I am so blessed to have an amazing group of friends that put together such a well organized and incredibly fun event. It was so great seeing so many of our

friends and family; as well as members of the community that were there to provide support to our son. I wish I could hug each and every person and tell them how much it meant to me and my family. The day was also a reality check for me. Seeing pictures and the video made me realize how far we have come. Not only that, what our life has now become. I am scared and excited for what is ahead. Tomorrow we will most likely be discharged to the Ronald McDonald House. Today was really hard for me. I am being taught so many things and we are about to be responsible for keeping up his care. Learning how to place his NG tube, hooking up his feeds to his pump, hooking up his picc line to a pump that will administer his antibiotic, the list of meds he receives from 8 am until midnight every day...I really had a minor panic attack and thought to myself, "I can't do this alone for the first few days." So, I called Matt and he is going to join me tomorrow. Thank God. We probably should have planned to be together in the first place, but I really think I was being naive into what goes into his care. It will get easier and we will acclimate - but I was just scared thinking about being alone with him!

Cleaned and ready for Nolan's arrival!

Today I spent the majority of the day learning, organizing Nolan's hospital for the move and my best friend from college, Alisa Zisman, came over and we cleaned our room at the Ronald McDonald house for about 3 hours...top to bottom. So, in my true OCD fashion, I feel a little better having a day of "organizing." Tonight or tomorrow, Jamie (Faith's mom) is going to give me a run down on how she organizes Faith's medicines. She even got me a label maker! (I like her style!) So, with Matt's assistance, a clean apartment and a medicine run-down, I think we will be ready to go!

It has almost been 5 months since the day our life changed. We made it to the day that we have been dreaming about since this started. I am SO happy Matt will be here because this is an important day for the both of us. We have SO much to learn in the next 24 hours. A lot of our instructions will be given at discharge. Nolan will continue both physical, occupational and speech therapy as an outpatient. He did amazing at both today! He actually let me place a bottle in his mouth and he seemed to try and suck. He also ate some pears...actually swallowed them! He is so active, rolling to his belly, grabbing his feet, bringing toys to his mouth...his coordination and mobility seem to be improving well.

Well, I am off to check on Nolan's meds and plan on getting a good nights sleep since our coming nights may be a little hectic in the near future! It's like bringing a brand new baby home!

#nhos