Sunday, December 18, 2016

We have a surgery date and plans are in place!

We found out at the end of October that Preston was needing his 2nd airway reconstruction surgery sooner than later due to his current struggles. Not the news we anticipated. In fact we were shocked and completely crushed. We pray this is the last one he will ever need. We have waited a while for a surgery date. We have one! Its Feb 13th. I tad sooner than we hoped but now that we have one, i have been in full planning mode. I will be driving to Cincy with P the weekend before surgery to get checked into our hotel and settled. The best part......my sweet dad is joining me on this journey. Boy am I GRATEFUL for this gift. I imagine his support will be needed more than i know! Preston will be inpatient for 2 weeks post surgery and a follow up scope will be done each week after that until we are cleared to come home. I am packing for 12 weeks like the nurses suggested (with hopes to come home around 5-6 weeks- all will depend on Preston's recovery, healing, health etc). The good news is I have been down this road before so I know the city, what we can do to stay occupied, and I trust the doctors more than ever before. I know what to pack and thankful for laundry services at the hospital. I will stay as long as needed to get Preston to 100% health! We will be placed on a wait list for a room at the Ronald McDonald House 24 hrs prior to surgery. Last time it took 11 days to get in and that was their peak season so i am hoping with us coming in the winter time, we will get in sooner. Staying at a hotel is not ideal when the RMH is literally a few steps from the front doors to the hospital. Plus the cost adds up quickly. This is not in my control so i am trusting we will get in when we need it. 

So many people have asked me all about the details of this adventure so i thought I would lay it all out there and share. Plus, I plan to print my whole blog for the boys to read when they are older for memories! Funny how i almost printed it this summer and just didn't feel right about it. 

My first priority has been to plan for Reid's care and lighten Tim's load as best I can. I can't even describe the feelings I have with leaving both of them for an unknown amount of time. Its killing Tim to miss being in Cincy for this. We both feel Reid needs at least one of us with him this time around. I keep reminding myself that I did this when the boys were 18 months old for P's first surgery but something about them being 5 years old is making this so much harder. They had no clue what was happening before and now they are aware of everything. After being told last week to isolate the boys 6-7 weeks prior to surgery and remain home 100% for sake of germs, I made the decision to pull Reid and Preston from their morning church preschool for the rest of the year for several other reasons too. It has been a great decision already as hard as it was to do. The boys will be doing school at home with me till we leave and once we are gone, Reid gets to resume afternoon school at Oak Hill Elementary where he is a peer model. He has made a few very close friendships that he really loves and I want him to continue having that each day. I also know a few of my dear momma friends at that school will love on Reid and be able to text me and let me now how he is doing etc. Preston will most likely be done for the remainder of the year with school but we will see. We received WONDERFUL news from his teacher last week that he was approved for homebound speech services till he leaves for Cincy. His A.M.A.Z.I.N.G. teacher and speech path were able to get him services for them to come into our home and do speech with P a few times a week in the evening! How awesome is that? They are doing this outside of school hours. I am so blown away! He needs to keep up with speech more than anything so this is awesome. I am making a whole corner in our living room as a set up for school and we will have a daily routine and I know this will help the time fly by and I won't lose my marbles a few days into them being home FULL TIME. Pray for me people! ;) Good thing I put wine on my xmas list! :) I could not do this without the huge help from Preston's teacher and all of her guidance and work for them to do! They need the structure so badly as do I! I know the boys will miss each other terribly when we are gone so this will be lots of quality time together.

I am so fortunate to have so many loving friends and family jump in to offer help in SO many ways. Tim will be a single dad for this duration (on top of Grad school- he is a rock star!). Reid will get his 1st parent teacher conference experience with Tim at his school one evening. The memories will be great for both of them and the list will grow as things pop up I am sure! My mom will be with Reid each day in the mornings and take him to school and Tim will pick him up. Thank goodness for Tim's folks and our sisters who are just a call away when we need them! Our church life group (which we didn't have the 1st time around) is solid as a rock for us. That has been the biggest difference we have noticed this time around......we have more grounding in our faith and support from our church. We didn't even realize what a tremendous difference that makes.  I have a few wonderful friends having Reid over for play dates to give my mom some relief too. And a very generous friend taking Reid on Fridays! This mama's heart is feeling more calm as plans are becoming more concrete! We have been offered a meal train set up for Tim and Reid and invitations to have Tim over for dinner. The list goes on and on and we are so fortunate! The enormous generosity just keeps us humble and makes us realize why we have fallen in LOVE with giving back. I personally never 'got it' till we were put on the receiving end time and time again and the past few years I have done my best to give. Not enough! But now that we are on the receiving end yet again, it makes me more eager to get all of this over with so i can be on the giving end again. Its so much more FUN! 

I will keep the blog updated as we near the departure to Cincy and surgery for P. Tim will hop on and update too. We covet any prayers being said and couldn't do this journey without them!