It is so hard to fathom that in just 5 days, we will be leaving for Kennedy Krieger Institute (KKI) in Baltimore, Maryland, for Stephen to begin the 2-month intensive feeding program there. We are leaving earlier than planned so we have time to visit a friend on the way and have time to rest and rejuvenate after the long drive before Stephen starts therapy.
I'm such a crazy mix of emotions right now. One minute I am so excited for my little man, and it feels surreal that we are FINALLY getting to do this! The next minute, I feel my heart plummet just a little bit and think "oh my word, what is happening??!" In my heart of hearts, I know that this is the right thing for Stephen. I am so grateful to the people at KKI for accepting Stephen into the program, for believing that he has the ability to eat and be tube-free, and for the way they have worked with us so far on everything to get him there!
At the same time, I am scared about what this really entails. 2 months is a long time to be away from everything and everyone we know. I'm worried about being away from my husband and Stephen being away from his Daddy. I'm worried about being lonely. I'm worried about being totally overwhelmed and exhausted. I'm sad that we won't get to be home for Thanksgiving or Christmas. Also, it is going to be hard work for Stephen. I'm worried about him hating it. I'm worried he'll want to give up.
But I am choosing to focus on the good that is going to come from this time...so much good! I am trusting God to bring so many blessings from it. I know that His presence is with Stephen every step of the way, and that His strength will uphold Stephen no matter how hard it gets. I keep remembering how long we have waited and prayed for Stephen to be ready for this, and God has been faithful in providing up until now. He is always faithful, so He will keep providing. I am fixing my eyes on that. Jesus has been good to us in a million ways. Without Him, I know I couldn't get through all we have been through!
So, here is a little bit of a run-down of what I know so far. Stephen will be in therapy all day long, with several breaks, 5 days a week for the 8-week period. They will be focusing on getting him to accept more foods, to learn to drink more than just water, to improve his chewing and swallowing skills, to drink/eat a greater amount/volume of food, and to lessen his tube-feedings as he eats more orally. They will also work with him on his fine motor and gross motor skills, just as his therapists do here at home. The therapy is rigorous and taxing, but the therapy team is patient and professional. I keep reminding myself that KKI is at THE TOP of the list of places for Stephen to go! It really doesn't get any better.
We are staying at the Ronald McDonald House now. Originally we were going to stay at the hospital; however, after everything changed with our insurance, the program is a lot less expensive for us to not stay inpatient. To me, this is a blessing, because we will have our own room with privacy, there are 2 kitchens where I am able to make Stephen's food, we will have the ability to participate in the fun events at the RMD House, and thanks to all of the wonderful people there, many of my meals will be provided and I won't have to eat hospital food all the time! RMD also provides free tickets to many fun adventures in Baltimore, so that will be perfect for the weekends when we really need to get out. All in all, I am very happy we get to stay there!
My Mom came over this past weekend to help me with lots of stuff around the house. We got so much done. I still have a lot to do, but my Mom works harder than any woman I know. It is nice to not have to prepare for this completely by myself!
Please pray for safety in traveling, for me to remember everything I need to bring, for Stephen to have an easy time with this huge transition, for God's peace to overflow, and for my heart as I'm away from my hubby. Pray for the team at KKI, for the therapists to know exactly what Stephen needs, and for everything to go smoothly.
Finally, thank you to everyone who donated and helped with the Yard and Bake sale, those who bought an awesome t-shirt, those who helped with the Chicken-Spaghetti fundraiser, everyone who purchased the spaghetti, and a BIG thank you to several specific people who gave straight from the heart and allowed God to use you to bless us financially. We are utterly grateful for all of you! God bless you!
I will update again soon! :)
"So be strong and courageous! Do not be afraid and do not panic.. For the LORD your God will personally go ahead of you. He will neither fail you nor abandon you." ~ Deuteronomy 31:6 (NLT)