Winter is here...

Can you believe its already December. Looking back this has been our best year in a long time! Just hard to believe in a few weeks 2011 will come to an end and it will be 2012! Time is sure flying by!

Ok, so last post we were getting ready for Blake's routine MRI. I am VERY happy to report that his tumor is still STABLE!! We have made it a year and 3 months with a stable tumor! Hooray!!!!!

Our little rocker is doing well, he is ready for Christmas to be here. Not a day goes by that he doesn't ask me if its Christmas yet. I am amused at how last year I thought he was really excited about Christmas, and how this year he is even MORE excited! We were invited to the Leukemia & Lymphoma Society Christmas party again this year. We had a lot of fun last year, he is so excited to go see Santa! He has been making all kinds of 'lists' and wants to sit on Santa's lap and tell him everything he wants. (A lot of his ideas involve Lego's) Blake was also really excited about decorating the house for Christmas. He was very eager for the tree to go up after we took down all the Halloween decor. This year he helped put the tree up (which was quite the process this year due to half of our pre-lit tree not being lit) So instead of one night of decorating it became a few! lol Blake's favorite thing this year are all the lights on the houses. He has been trying to talk Phil in to adding some more lights on our house. (we just have them around the gutters) He really wants Phil to add them to our garage doors. Lol He is becoming quite the negotiator. Its been a lot of fun driving through the neighborhoods and hearing him squeal with delight as we pass the lit up houses! :) His spirit is contagious!!

So this month I participated in First Friday's. Its the first Friday of the month where all the art galleries in the Crossroads downtown open their doors and feature all kinds of artists work. The Gallery at 19 Below is who hosts givingSOLO's Children's Art Exhibit every year. For December, Joy Moeller (creative director @ 19 Below) decided she wanted to have her first show, and asked Jaime Lyon and myself to join her. This is like a dream come true for me! I love painting and creating crafty stuff, so of course I agreed!! December 2 was my first show. It was SO much fun! I sold several pieces, some monsters, some hand-made ornaments & shrinky dink necklaces/key chains. The crazy thing was that all of our art worked well together. Great minds think alike right?! It was such a fantastic night!

This year has been so good to us. I think I am actually a little sad for it to be ending. However, I know 2012 will be another great year for us! God has really helped us through a lot. This year has proven more than a couple times that our faith in God has carried us further than we expected. Several times this year we have come to what felt like a dead end, and each time when we least expected it, God has opened a door for us. I can't imagine going through this journey without having the faith and love of God surrounding us. Your prayers and support have guided us through some difficult times. Knowing we are surrounded by all of your love and support and prayers...its the BEST feeling in the world! So thank you!! Merry Christmas...and Happy New Year!! (if I dont talk to you before then)

Fall 2011

Fall 2011

Its already November, and my last post seems forever ago. Life has changed quite a bit over the past several months. I am going to do my best to catch you all up! This is gonna be a long one!

August-

School started August 22. Blake was very excited to return to Ms. Ashley's preschool class. He is making friends and has taken a liking to a little girl in his class named Audrey. She is a cutie! Lol She has white blond hair and blue eyes, so you can imagine they are quite the pair! I have been told that they always pick each other for centers. 

September-

Blake had a very fun and very busy September. On Sept. 10 First Hand Foundation (the organization that helped us get to Texas) gave us 4 free passes to the Sporting KC vs. Texas game. Kansas City vs. Houston...Ironic-I think not! Lol. We received VIP treatment, our seats were in the Victory Suite!! Buffet lunch, open bar, and Blake got to sit in the Lance Armstrong seat. He was treated like a king! We really had the best time, and KC won!!

Blake also started playing soccer on a special needs team here in Lee's Summit. The team varied in ages 4 to 16. They ran drills and learned the rules of soccer. Blake was excited to wear shin guards and his cool soccer shirt, even if it was a little big. He didn't want the one that was his size. Lol. If he still wants to play next year we will get him some cleats.

Blake also was the “Grand Marshall” for the Dalton Burner Foundation's 5k and Family Fun Run on Sept 11. The Dalton Burner Foundation has helped us pay several medical bills. We have met several incredible people through them, including Dalton himself! They also asked Blake to be in the Comet's calendar. He had a photo shoot down in the West Bottoms with Leo Gibson #14. We cant wait to see the calendar. I will let you all know where you can get one when they come out! We also were given tickets to go see the Comets home opener. Thank you Brian Harris and The Dalton Burner Foundation!! That was seriously the most intense game I have ever been to! It was awesome! I am totally a Comets fan now!! I hope we will be able to go to more games in the future! Blake was able to go down on the field after the game and get a lot of autographs on his Comets shirt!

On Sept. 26 I started teaching again for the first time in 2 years. I found a part-time job at a Montessori Day School in Blue Springs. Its been an adjustment. My hours are 845-130, so Phil and I are working opposite shifts. He does the morning routine with Blake, along with getting Blake off the bus and feeding him lunch. The boys take a nap around 130. I get home around 2ish and then I do the afternoon/bed time shift. I see Phil for about 30 min before he goes to work, that part really stinks. However, receiving a paycheck sure does make it worth it...and we still have our weekends!

October-

On Oct. 11 Blake's best buddy Marley earned her angel wings. Marley and Blake became best buds through the Rehabilitation Institute. After meeting Nikki-Marley's mom we learned that they both had the same type of brain tumor and both had right sided paralysis. They enjoyed doing their 'work' at therapy together, eating lunch together, and Blake loved making Marley laugh. They were quite the pair! A few months ago Marley's tumor quit responding to chemo, and radiation was not an option for her due to the location of her tumor. She touched so many lives during her short time here on earth and I truly believe she was an angel here on earth. We took Blake to her visitation and funeral. He really wanted to see Marley. When we went to go up and see her “sleeping” and he looked at her and said “Hi Marley”. She looked beautiful. It was a very sad day for us. Blake still talks about Marley, and tells me “I miss Marley” often. We talk about her being in heaven and how one day we will see her again.

On the 26th Blake had his botox apt. It was a hard apt, the older he gets the more aware he is, and the more tears we see. Dr. Roge did a great job at being quick, however it was still very hard to see him go through it. He still kept his sense of humor. That morning before we left for his apt, he found a fake mustache in our Halloween box. He wanted me to put it on him, so I did thinking it would be off before we left the house. Nope. He wore it all day...even through botox. He walked through Children's Mercy cracking everyone up. The doctors and nurses were laughing and Blake would look at them and say "whats so funny?" with the most serious face. It was hilarious. I asked him after botox was over if he wanted to take it off...and he looked at me like I was crazy. lol He kept it on all the way through his nap. He amazes me everyday. Never a dull moment. lol

Halloween is my all time favorite holiday. Every year I look forward to what costume Blake wants me to make for him. This year he wanted to be a “Inja Turtle” lol. Ninja Turtle Raphael to be exact. So off to the craft store I went. After planning on how to construct the shell, 3^rd time was a charm. His costume came out pretty well, I think. We also built a card board box maze in our driveway for our Halloween Party. It was a huge hit on Halloween. Only took us a day and a half to construct and paint it, and only a matter of hours to take it all down. We used about 255 boxes, and LOTS of tape!! Thanks to some great friends we were able to pull it all off! For the first time Blake went trick-or-treating in our neighborhood.As excited as he was to go trick-or-treating he was more interested in the kids hanging out at our house going through the maze,.We only made it to a about 10 houses before he decided to go back home. Lol Who needs candy when you can make new friends! He really is a special kid!

November-

This month is already flying by. Blake started back at therapy on the 2^nd. This has been our longest break, he hasn't been since camp in June. Starting Nov. 15^th he will be getting serial casting on his right leg. The cast will help improve his range of motion over a four week process and help his botox last a lot longer. I am anxious to see the results.

Blake has his routine MRI tomorrow morning. I will be sure to let you all know how it goes. Things have been so great over the past several months, I keep praying that it continues. Life has a sense of normality that it hasn't had in a long time...and its been nice! We are so thankful for all the memories we are making, and time we are enjoying with our little man. He is getting so big, and although I am sad that my lil guy is getting bigger, I am grateful for every minute of it! He is becoming quite the comedian. Lol I hope you continue following us on our journey. We appreciate all of your support and love!! Talk to you soon!

Another slideshow by Smilebox

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!!