January 29, 2012

Well, Happy belated New Year! We are heading into 2012 with positive thinking and humbled hearts! I know its been forever since my last post, I will do my best to catch you all up.



At my art show...looking so handsome!

December 2-I had my first official art show! I was VERY excited. It took me months of planning and painting to prepare for it. The art show was held at The Gallery 19 Below. Several months ago Joy (a friend of mine who is creative director and editor at 19 below) asked me if I would want to join her and another one of our crafty friends-Jamie Lyon, for an art show at the gallery. I of course said yes!! It was so cool too, because all 3 of us-without any coordination or talking-had very similar subjects. Lots of birds and trees. lol It was such a fun show! I really had so much fun. That was my first and I hope to do more in the future! I actually received several painting jobs from that show. I got a lot of positive feed back on my work. It was a very cool experience and I am so thankful that I was able to be a part of it! You can check out my art blog at www.punkparlor.blogspot.com! Let me know if you need any art for your humble abode!



A glimpse at some of my art. (the white wall has my art hanging)

Christmas: We had such a wonderful Christmas this year. Several months before Christmas we were introduced to the 'Blanket Fairy'. Its an amazing organization and if you haven't heard of them you should definitely check them out. http://theblanketfairy.weebly.com/ Its such a great thing that they are doing! Blake was selected to be part of their 'Christmas Hope Fairy' program. Basically an anonymous volunteer receives Blake's info and helps with Christmas. Its so miraculous how when things are tough and you arent sure how they will ever work out...God opens that door. This has been a consistent part of Blake being diagnosed with his brain tumor. I am always amazed at the way things work out. Confused? Let me back up a little.




So excited to get his 'Blanket Fairy-Christmas Hope Fairy' present!

This past year things have been tight financially for us. We make the bills each month but its been hard to buy any of the extra things (i.e. clothes for our very fast growing little boy, shoes, ya know all the extra stuff beside bills/gas/groceries) When I started my part time job, it was perfect timing and we really needed the 2nd income. Although I found a part time teaching job, a few weeks prior to me starting, all overtime was cut from Phil's job. It really stinks but I dont feel I can complain because we are making enough to survive-things are just tight. So here we are working to make the bills and Christmas is right around the corner. We sat down and decided that we would have to tell our families that this year we couldn't afford presents for all the kids. (We usually buy for just the kids in our families-Blake has 5 girl cousins and 1 boy cousin) This was VERY hard for me to do, because I look forward to giving gifts each year. I think I might have cried when I told my mom. I know I'm a wuss. So, Phil and I were trying to figure out how we were going to buy Blake anything for Christmas. I know its not about the presents, but if you would have heard Blake talking about Santa and what he wanted...you too would have done anything to make it happen. lol He was SO into Christmas this year!



Can you see how excited he was! lol Love this pic!

Ok, so you already know we get hooked up with the Blanket Fairy and I am so excited! We honestly didn't think things could get better...well guess what-it got A LOT better! After work one day I saw I missed a call from Blake's school. I listened to the message and it was from his counselor-Lisa. Hmm what was this about I wondered. I called her back and after playing phone tag, we finally got to talk. She explained that each year this church in Lee's Summit asks the school to pick 2 kids that they can help with Christmas. Lisa said Blake was the first kid she thought of. She said Blake has made such an impression in the school, and meeting us-our family, has really inspired a lot of the staff. She went on to say how we are such a deserving family after everything we have been through, and how we have such a positive outlook, and how after everything Blake has been through he is such a happy and inspiring little boy. She said she didn't know if we needed it but she wanted to call and offer it to us. I was so surprised-and SO thankful-and so taken back! My heart was just melting! I let her know that in fact we could totally use the help, and how thankful I was that she had thought of Blake. She asked me what he needed and what kinds of things he liked. She let me know the day we could pick up everything, and that was it. As soon as I got off the phone I balled like a baby. God was looking out for us once again. Let me just tell you that the church-Holy Spirit Catholic Church-totally hooked Blake up-as well as us too! I'm talking a TON of clothes for Blake from Old Navy-coat, snow pants, hat, gloves, socks, several pants, several shirts, a pair of shoes...it was crazy! Plus Star Wars Lego's, a Star Wars Light Saber (the kind that lights up with sounds!!), Batman Car,  even hair spray for his faux hawk. lol They also gave Phil and I gift cards to Target & Hy-vee...we were in tears when we got home and looked through everything. (no it wasn't wrapped-oh and they included some wrapping paper and tape along with boxes for all the clothes!) AMAZING!! I'm sure I forgot to list some stuff because there was a lot. I cannot thank them enough. It really made our Christmas!! I will forever be grateful for what they provided us!

By the time Christmas was here I ended up painting canvases for all my nieces and my nephew since I had bought a bulk pack to replace the ones I sold after my art show. I think they loved them. Home-made gifts are my favorite! It was such a happy holiday! I still can't believe the way things work out.

So here we are and its almost February. My birthday is coming up on the 12th and I will officially by the BIG 30! I am not really sure what we are going to do to celebrate, but I do know that a Hello Kitty ice cream cake will be a part of it! I love Hello Kitty!! :) I may be 30 but I still feel like a kid at heart. I have always told myself that I will NEVER grow up and I want to stay a kid at heart forever! I hope I can continue to live that way! It sure is a lot more fun!! I still love to play with Lego's and Barbies, I love to sit and color with Blake, and I am a sucker for the toy isles! Ha ha! Life is pretty great right now!

Ok-now for the 'medical' part. Feb 7 Blake goes in to get fit for a leg brace to sleep in. His tone is pretty bad right now. Botox didn't really work this time-or maybe it was a combo of his growth spurt and cold weather. We wont really know until his next Botox apt. Tone is a pain when its bad. Constipation and tone go hand in hand-tone causes constipation which causes tone which causes constipation...you get the drift. Thank goodness for Mira lax. It really has saved us-Blake really! lol We also meet with our neurologist on the 29th. I always look forward to our appointments with Le Pichon. He is so great! April is our big trip to Texas. I'm still looking for some financial help to get down there-so if you know of any organizations that do that sort of thing...please email me! I would really appreciate it.

I want to end this post by saying how unbelievably thankful I am to have all the supporters and followers praying and continuing to keep Blake and our family in their prayers. We have been so blessed through everything we have been through. I know God has had a huge part in our path, but we really couldn't have gotten through all these years with out the love and support of all of you. So thank you for caring and loving us and never forgetting about us! We really appreciate you all!! Sending you all my love!! xoxo -Mandy





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!

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