Monday July 25, 2011

Life is good! After 2 summers of treatments and hospital stays, we are enjoying our first summer without them!! Although we have spent some time at doctors appointments, it's hardly a comparison. We spent the month of June in Constraint Camp Therapy. On July 8th we traveled to Houston for Blake's 1 year follow up. After a neuro-psych apt and an opthamology apt we had his MRI. His tumor is stable. Words cannot express the joy we feel. There is a lesion that the doctors aren't really sure about, the plan is to keep an eye on it with up coming MRI's. Blake's tumor has officially remained stable for a year! I am praying that his MRI's continue to show a stable tumor. God has been so good to us! I thank you all for all your prayers and positive thoughts. My little boy is proof that miracles CAN happen!! During our stay in Houston, we were able to see all of our Texas family. We weren't able to go to the Zoo or Children's Museum due to some scheduling mishaps, and the fact that I forgot to bring Blake's old leg brace. We picked up his new leg brace on Thursday-left on Friday. I only packed the new one...oops! His new brace has less support and is designed to help build muscle, so it works him harder. After a trip to the Outlet with my Aunt and Cousins on Sunday, I learned just how hard it works him. I ended up carrying him-all 45lbs-around the outside outlet because he was too big for the 'car' stroller my aunt rented. Lets just say lesson learned! lol We didn't have a stroller, or his 'supportive' brace. So our week was filled with both Phil and I carrying him. My back is totally paying for it. It was a really great trip. I was grateful that Phil was able to go with us this time. Phil was able to try out 'salt water' fishing with Cecil-my cousins husband. He had a blast both days even though they didn't catch anything worth keeping. Our Houston family is SO great! Its funny to me how Blake needing a 2nd opinion, us choosing MD Anderson, brought us to my family in Houston...who I had not seen since I was little. Now we are so close to them, I actually am sad that we only have to go down about once a year. I miss them all so much. Blake is loved by so many. It really amazes me how many people have been touched by his story and have fallen in love with our little miracle! I pray that he continues to fight and lives a long long life!! Thank you for continuing to pray for him, and us!! We love you guys!!

Sat-Mon July 2-4, 2011

This was by far the BEST 4th of July!! Not only did we spend the whole weekend with great people/family celebrating the 4th, we were also celebrating Blake having his port removed!! (It no longer worked) The unfortunate part of this was NO SWIMMING-due to fresh stitches!! However, it was just a small price to pay! It was seriously the best 4th of July we have had!! The previous 2 years we have spent the 4th away from home. 2009 we were inpatient at Children's Mercy, last year we were in Houston without Phil receiving Proton Therapy (radiation). A friend of a friend, heard that Blake hadn't been able to really celebrate for the past 2 years and so this very generous family donated a LOT of fireworks to us. I wish I had taken a picture before they were actually set off. Oops! I think you will get a good idea by looking at all the pictures. We started off our holiday weekend in Rich Hill, MO (my bff's mom's house). We ate delicious food, enjoyed great company and went swimming-Blake sat on a huge turtle raft and stayed dry! It was a great start. The next day we headed to Nevada, MO (bff's dad's) to enjoy a bbq, more great family and a firework show. We set off about half of the fireworks, our final one for the night was especailly given to us for Phil. A 16,000 Black Cat firecracker. It sounded and looked like a bomb went off. lol It was SO loud that Blake actually tried to use righty to cover his ears. lol I actually got a picture of it. I was pretty proud of him. After a great night we headed to Pomme de Terre Lake (Phils parents live there). We took his parents boat out, then had a bbq and more fireworks. It was great to be by the water and see all the fireworks going off around the lake. Blake truly had a BLAST!! Finally on Mon (the 4th) we headed back to Rich Hill. Phil had to head home since he had to work that night, so Blake, Christian(bff), and I stayed to celebrate with her mom in Rich Hill. We enjoyed her huge 4th party with more delicious food, swimming, and then went to the town fair and watched fireworks. It was the PERFECT holiday weekend. We feel so lucky to have such amazing family and friends. Here is a slide show of our weekend!! Enjoy!!

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