I was pretty excited this week to have only one appointment at the hospital. I got a call on Wednesday and found out I had another one. On Thursday I went over to the Rotary Flames House to meet with a nurse and doctor on site. The Rotary Flames House is located directly in front of the children's hospital and is for children with life threatening or life altering illnesses. Hope has been accepted into their program, this allows us to have 30 nights of respite care through them. It works a lot differently than the current care we receive through Shawn's insurance. Our coverage through the Rotary Flames House allows us to drop Hope off at the house to be cared for on site. It's a lot like a hospital, but more comfortable and home like. We are able to stay there with her as a family or leave her on her own. I'm not sure how well I'd do leaving her. She is so familiar with us now and would wonder where we were if we left her. It is a blessing that we even have the opportunity to use these services. If we ever needed to go somewhere for a wedding or family emergency, the house would allow us these freedoms.
We plan to use this opportunity to take Sadie away for a night and focus on her completely. Knowing that Hope is well cared for and not alone will make this more enjoyable for us all. We plan to go to the house as a family to get a break from Hope's medical care. We can spend time as a family, but not have to worry about the medical portion of Hope's care. I'm sure we won't be able to utilize this program for too long, once Hope is no longer tube fed and has had her Glenn, we won't need this type of assistance any longer. I'm looking forward to that stage in our journey with Hope!
Tomorrow is Sadie's 2nd birthday party and the weather looks like it's going to be beautiful! Thank you to everyone that has been praying for nice weather for us. Sadie has been loving having her cousins in town and has gotten a lot of attention. Even Hope has cried less, she truly enjoys watching all the kids play. I'm sure Sadie's party will be a highlight for her. I'm excited to spend a day just focused on her, it doesn't happen too often right now. We have hired a nurse to watch Hope, the party in the backyard is not a safe environment for her.
Next week is a little crazy, we have 4 appointments at the hospital! It will be a tough week with Sadie, but also with Hope's schedule and all of her appointments. I find weeks like this one coming up to be very hard. I'm not able to spend a lot of time with Sadie and am constantly running out the door. We are hoping to finally get an official MRI date, no word on whether or not that will happen yet. Please hold our family up in prayer as we head into a really busy week that will require a lot of patience.