Thankful but Broken

This weekend was so beautiful!! Blue skies, warm weather, and bbq's happening all around =D Just perfect considering it's almot July!! We tried as much as we could to enjoy our moments. It's not always easy to keep our heads high, smile, and laugh. To be honest there are moments where it is just to hard.. Our baby on daily basis gets worse and worse. Praying and begging God for his will to have Dylan be completely restored in his name!! So unsure of all that is going on. He suffers throughout his day. As a mommy and daddy we want to fix it. We want to be able to control every aspect of this journey...We have NO control. So we give it back to God time and time again. Knowing his love, grace, and plan for Dylan is more then enough. The helplessness doesn't go away but we continue to lean into our Papa God.

He had visitors. He loved having his Grandma Sonia and Kelly spend time with him.Saturday we went and saw Cars 2. Both of the kids said it was better then Cars ;) Movie critics in the making.lol That was really the extent of all D could do. It really tuckers him out to do anything. We actually fell asleep at 715. It really wiped us both out.lol We tried swimming Sunday. He mainly floated around until he got way to cold. Since radiation has started he has been very cold. Here again it was very eye opening to us how fast he has been slipping away in front of our eyes.

We have five other families that stay in the Garden Immune Wing at Rondald House. Each one of them has already made a very specail spot in my heart. Such incredible kids!! Such incredible families!! Sharing and talking to each other has been heartbreaking but much needed. All of these kids are such strong, brave, and amazing little people =) I am truly honored to be in there presence. Each child and parent is teaching me something =') I am so thankful Lord!! Please lift them up in prayer!! So many miracles walking around us... GODBUMPS!!!

So this is our week.. Radiation Mon-Fri. We have an appt with his Doctor this morning. We were suppose to be able to lower his steriods today. I don't think that is going to happen. She thought it would improve by taking a higher dose. It hasn't worked =( He is having breathing problems sometimes in the middle of the night. Scared us to death.. So we have lots to talk about, and hopefully we can figure out some things out. We will be setting the exact dates for his Make a Wish trip today =D I believe we will be going legoland next week. Possibly the following. I will keep everyone updated. Much love to YOU and YOURS!! Make it a fabulous day!! Remeber today is a gift that is why it is called the present!!