Tue Aug 24, 2010

I am praising god!! Blake had his MRI today and it showed his tumor is STABLE!!! It shrank a lil bit more-not much-but I am SO grateful!! It was a LONG day. We started off having 9:15 check-in, 10:15 MRI, and 1:30 follow-up with Dr. Mahajan. However, they didnt put on our schedule that we needed to go to the Pedi-clinic and get Blakes port accessed. Ugh, so we ran across the hospital. We had to wait for almost 45 min, then after we finally got his port accessed-ran back to the other end of the hospital. Blake had his MRI, then we went to see Dr. Vatts, who after waiting another 45 min learned that he had an emergency. So we headed to our apt with Dr. Mahajan. She let us know his MRI results-we were very happy. Then went back to see Dr. Vatts. Waited another hour or so. Finally we went back, and he looked Blake over, read us the MRI results and then were sent back to the waiting room. Blake still had to get his port de-accessed. Ugh!! More waiting. We finally were taken back and were finally ready to head back to Jean's. We were all exhausted. We have to leave here tomorrow at 5am. This has been a suicide trip. Next time, I am going to plan on adding in a few more days. We werent able to see a few family members. :( We will be back in February, so I am going to make sure we see everyone then. Its been hard to do anything other than our apts this trip. Phil was able to eat his fish tacos last night. His birthday is tomorrow-we get to drive home for his bday. lol. Woo Hoo. haha. Oh and we were able to get Blake's 'Flashes of Hope' pictures while we were at the Pedi-clinic. I am SO excited!! I will post some up-again if you have a facebook-I have WAY more photos posted there. Carepages only allows me to post 100 pics. So look me up if you have a facebook. Talk to you all soon!! THank you for all your prayers! We are so blessed!!

Sat Aug 21, 2010

Hi everyone! Guess who just had their wish granted! lol Blake has had quite the day! I know you are all dying to see photos-they are coming!! So here are all the details:

Getting picked up in a limo-he loved his "big car"

Friday, at 430pm Joan and Nikki our Make-A-Wish coordinators came by to wait with us for our ride! A HUGE Cadillac Escalade Limo pulls up-talk about cool!! Blake wasnt sure what was going on at first-but let me just say he thinks we have a 'BIG' car to ride in now. lol He LOVED it once we were inside. No carseat, no seat belts-he was living it up! The limo took us to the Sheraton-OP Convention Center. We were put up in a really nice suite-3 rooms. A master, living room, and another bedroom with 2 more beds. Whats funny is we all slept in the Master. :) We went down and had dinner at the hotel restaurant-I think its called 1906. Phil got all you can eat shrimp, I got the fillet, and Blake got a hamburger with apples-not fries, he is such a healthy eater! lol For dessert we got a brownie duo and banana pudding. It was all VERY delicious. Then we checked out the swimming pool. We had planned on going upstairs, changing then going to swim. However, once we made it up to our room, Blake was looking a little tired, and Phil and I were feeling tired. Sooo Blake picked out a movie off the tv-The Chipmunk Squeakquel, and we all climed into bed and just relaxed. It was so nice!

Breakfast in bed

Saturday, we woke up early, had breakfast in bed. Breakfast included Belgium waffles, buttermilk pancakes, omlet, yogurt parfait, chocolate milk, sausage, toast, and some really cute little syrup bottles. lol It was so good. We all got dressed, then met our limo driver at 10am. We headed home, and there was so much antisipation leading up to our arrival. lol I havent been that excited in a long time! Such a great experience. So we arrive home and everyone is waiting for us. Blake got out of the limo, he was being really shy due to all the people. lol So my mom scooped him up and showed him the backyard. He went running up to the play system. So so so cool! His play set includes swing, see saw, slide, latter, ramp, rock wall, rope swing, chalk board, binoculars, steering wheel, sandbox, and a trapeze swing. I cannot believe they had that built in less than 24 hours-with all the rain we had Friday night-its amazing. We had a big cook out after the reveal. It was such a fun day. I am so glad we had so many people to share this special day with. Its a day I know I will never forget! Blake is such a lucky lil boy-and loved by SO many. We are truly blessed! Ok, so now I will try to get some pic posted. lol Talk to you all soon!!

The BIG reveal-his new swing set!!

Our amazing coordinators-Joan and Niki

Blake's yummy ice cream cake

Wed Aug 18, 2010

Hello everyone! I am sorry I havent written an update in so long. Geez! Things have been really good. Blake has returned to Rehab. He acutally is doing really well! He hadnt regressed as much as I though. So thats really great! Blake is getting a electro-shock machine to stimulate his muscles. On Friday the therapist are going to show me how to use it. I am pretty excited to be trying something new. He calls it the 'tickle machine'. I am hoping it will help his brain register with his arm a little better. Then in November Blake will get his 3rd session of Botox. Followed by some intensive therapy. Right now we are going to Rehab 3 times a week from 9-2. He is enjoying his sessions and he loves his therapists!
This is actually a really busy week for us. Saturday at 10am, Make-A-Wish is going to be revealing Blake's wish! So anyone who would like to come out-please do! They are picking us up Friday night around 5 and taking us overnight somewhere, then bringing us home at 10am on Sat. We dont know where they are going to take us-lol. Its hard for me to not know details...but fun and exciting at the same time! I can hardly wait for Saturday to be here.
Then on Sunday morning we leave for Houston, TX. Blake has an apt on Monday with opthamology, then MRI and follow up visit on Tues. We hopefully will be returning on Wed. The plan right now is to fly Angel Flight. However, they were having a hard time finding a pilot to fly all 3 of us. So we are keeping our fingers crossed. Worst case we will have to drive. lol I am praying that the MRI will show his tumor being stable. I know how unpredictable they can be, so I keep praying for Blakes to be stable. I am looking forward to spending time with my Houston Family. Blake has been talking about them, so I know he will be excited to see them as well. And if we get to fly-he is going to be so excited. It will be his first time flying. I just think that would make this one of the best weekends in his life so far: a playground and a ride in an airplane. lol Talk about exciteing! Such a lucky kid!
I know how you all have been praying for us, and I want to ask a favor of you. While we were in Houston, we made several friends. Its was like we became a family. Unfortunetly, one of the little boys we met went to heaven this morning. You can read his story at Declansjourney.com. I would really appreciate it if you could all keep his family in your prayers. I cant imagine losing Blake, and it breaks my heart knowing that Declan didnt make it. He was such a strong little boy, and had the best smile. I would really appreciate it! Declan's Journey

Sun Aug 1, 2010

Sorry it took me so long to post a new update. Things are going much better! We were in the hospital until Friday evening. They put Blake on a steroid, to help with what we are hoping is just swelling from the radiation. So far-its working. Blake is walking and playing like normal. Thank God!! We are still waiting to hear back from his doctors at MD Anderson. This is one of the down sides to out of state doctors...a lot harder to get a hold of. Now we are trying to find a neuro-oncologist, and its a lot harder than I thought. Kansas city doesnt have any that I have found, so far. Since seeing the amazing difference while in Houston, I am very motivated. lol
This weekend has been pretty nice. Christian took Blake to Nevada, MO Saturday afternoon. To visit her family and to give me some time to get stuff done around the house. Blake is of course having a blast!! I cleaned out the basement and garage. I have 2 HUGE bags im giving to good will, and another 3 HUGE bags to give a friend of mine. Plus a huge bag of trash. I am 'paying it forward', I have been given a lot of clothes and toys for Blake through out his life, and now instead of trying to sell them, I am giving them away to help someone else out. Its kind of my new moto. Pay It Forward. Helping someone feels SO good. I feel so forunate and have had SO many people help us and Blake, I am so happy to be helping a couple friends out. Its amazing how good helping people out can make you feel. :)
Well, I guess thats all for now. I am going to enjoy my much needed kid free time. I almost forgot how good it can feel to be kid-free. Of course I miss him, but its a nice break. Talk to you all soon. Thank you again for all your support!