Well I first start off by saying …There is no place like home!!!!! We are so glad we’ve had a week at home and although it passed so quickly we thoroughly enjoyed each and every day. I must apologize I have not updated since last week…let’s just say our trip home started a little rough but nothing we couldn’t handle.
I will back up to the Friday we got to finally come home…we decided to tell Bailey we were coming home despite the fact she had an EKG scheduled before we left in addition to the normal routine medicines and all that good stuff. So that morning we starting packing up her room (which thanks to many of you was like packing a small apartment…LOL), but we were pretty much finished up by noon. Once we finished packing it was time to do the EKG, which went very well and gave us some good news to go home with. According to her cardiologist, the tumor is not pressing on her heart as much as it had been on week 1 of our stay at Tulane (when the first EKG was done), so that made us very happy to say the least. He did not speculate as to how much the chemo had effected the tumor around her heart because he still had to compare the two but the fact that it had not grown and was visibly smaller was music to our ears.
After the EKG, we headed back to Bailey’s room to wait for our discharge papers. While in the room as I was putting Bailey back into her hospital bed I noticed the incision on her back from surgery had opened. I immediately called her nurse who then called the neurosurgeons to come and take a look. At that point they were unsure IF we would be allowed to go home due to the severity of the open wound. Needless to say we were a little disappointed but began praying that somehow God would figure this one out for us…and sure enough HE did. The neurosurgeon decided he would teach us how to properly care for the incision (which I might add is not an easy task for us or a painless task for Bailey) so we could go home. We were all ready to go, with our two page long list of medicines, injections, wound care instructions, etc.
Of course our ride home seemed to take forever only because anticipation will do that to you. As we were pulling off the interstate in Rayne, Bailey began crying as she was so happy to be home. Needless to say when we pulled into our driveway we were met by all of our family members and a collage of posters, balloons, and messages from our family and friends. It was truly the best homecoming ever! We settled in and no sooner than an hour after we were home, I was picking Bailey up to get into bed and pulled my back out!!! So now you understand why I haven’t been updating as much. With our new home routine, and me not being able to walk, needless to say the first few days home were a little rough for everyone. Thankfully I have great family to help, sleepover, cook and wash clothes, etc. etc. Also I was paid a visit by the most awesome chiropractor ever, Jason Abshire, he is definitley a God send(literally). Not only did he fix my back but he also had a message for me that I wan’t expecting that helped me put some things into perspective. I have been dealing with emotions I am sure every parent in my situation deals with but somehow God had given this man a message which was meant just for me to put my mind at ease and I am so very thankful HE did. Amazing how God does things sometimes.
So for all of you who have been wondering how our days at home have been spent, I will fill you in. We have had a crawfish boil, strolls outside, an abundance of visitors, a trip to Bailey’s school to visit her classmates and a whole bunch of quality time that was much needed. I am so very thankful for each of you who have made this transition in our lives easier by doing the little things…a kind word, a care package, a cooked dinner, etc. I am so overwhelmed not only by your generosity but by your sincere care and love for my daughter. I could never say thank you enough. You really have made our lives alot easier.
Tomorrow Bailey has her first physical therapy appointment at Women’s and Childrens, so please pray this will go very smoothly for her. She is a bit nervous as this will be a whole new set of faces and routines she will have to get used to. Also, it will be our last day home because we are headed back to Tulane on Friday for round 2 of chemo. I appreciate all the prayers and ask that you keep them coming. Believe with me that round 2 will go as good as round 1 did so that we can come home on Monday when chemo is finished. Thanks again for everything and for caring about my little girl like you do. I am forever grateful! And I promise I will update as much as I did before now I can MOVE!!!! Thanks again Jason……..