Thur July 29, 2010

Blake and Mason playing with cars

Well, four days into being home, we are up at Childrens Mercy-Inpatient.
:( Wed night after dinner, Blake was walking and fell a few times. I was hoping it was just him being tired, with a weak leg and from not wearing his brace after bath. Then this morning he fell a few more times, took a nap, and for the rest of the day he wouldnt walk. He crawled around, played and watched movies. He tried walking a few times, but within a few minutes his legs were giving out on him. I called our Neurologist here in Kansas City. He recommended we go downtown to the ER. So at 5pm we headed to the ER. Finally at 730 we were taken back to a room. Then at 9 Christian showed up to relieve Phil so he could go to work. Dont know what I would do without her. By 10:15 Blake had an Xray, labs were drawn at 11:30, and then finally at 12:15 he had his CT. The Xray and Labs came back normal, so they ordered the CT. The CT came back with some abnormalities. We wont really know anything until tomorrow morning when they do an MRI. Blake has been a trooper once again through all of this. We didnt get a room until around 3:30am. Blake is still awake-watching his favorite show 'Backyardigains'. This kid LOVES Backyardigains. So here I sit in Childrens Mercy, praying that this is just some fluke side affect of the Proton Therapy that will go away in the morning, or something not serious. I am again, looking forward to going home. Thanks for keeping us in your prayers! Blake is one very loved little boy! Thank you soo much!!

Wed July 28, 2010

Hello to all my faithful readers and supporters! I am glad to say that we are home, and enjoying a relaxing week! We had a long drive Sat, the last 2 hours it rained SO hard. We were home by 11:30pm! It was so great to be home. Blake has been really enjoying all his toys he hasnt seen in 2 months. Its like Christmas all over again. lol We went to the pool with Christian, my mom, Katie, and Mason yesterday. I was so excited to get some much needed sun. However, I didnt realize how much I was getting until it was too late. I am so burnt. Its painful, lol. I was supposed to take Blake to the pool again tomorrow, but we had to cancel. His little arms are a little red too! I applied spf 50 before we left the house, and again at the pool, somehow he still got red. We have been having such a great week. It feels so good to not have any apts scheduled-no hospital visits. We have an apt on Friday with Dr. Le Pichon, I want him to give us some advice, and look over the scans from MD Anderson. I am also very excited for Saturday. Christian is going to take Blake to a birthday party then to Nevada for a few days. Soo I have a date night with Phil Saturday!! Woo Hoo!! I think we are going to go have a 'nice' dinner and maybe go see a movie. Then I will have a few days to clean house, organize, get things sorted. There are a lot of things I am getting rid of-we just need the space! It will be good to have a few days to do whatever I want to do-kid free! Blake will have a BLAST with Christian too! She has some fun stuff planned for him. I am totally missing my family in Houston, but just checked the schedule on MD Anderson's website and Blake is due back on August 24. So looks like we will be back in just a few weeks. I think we will leave on Monday and come home Wed. Phil's birthday is the 25th. So he says if he goes he wants to eat dinner at Adobe cafe in Houston. lol I think that sounds great!
We will start back at Rehab Institute on August 10th. I am very excited to see all Blake's therapists. He has been missing them. He seems pretty excited to go back! I am looking forward to getting him back into the intensive therapy. He really needs it We just spent almost 4 months without therapy. I can totally see a difference. It will be really good to be back! There are so many people we want to see now that we are home, I guess it will all be a matter of time. Make-A-Wish is scheduled to come out on August 21. I dont know any details yet, but Joan or Nikki I am sure will call us soon with all the details. I can hardly wait! Our backyard has already been bulldozed, there is a huge area of dirt. They said they would come soon to lay the sod down. Its gotta be put down before they do the playset since it has to be watered and not walked on for a while. So I guess thats really all for now. I cant believe how good it feels to be home-minus the sun burn lol. I will talk to you all soon!

Thur July 22, 2010

Well, this has just been a week of good news! The Angel Flight pilot called me yesterday to confirm Phil's flight out of Lees Summit. I asked if they had found a 2nd pilot. He didnt know-he was getting ready to call them. He goes on to say, "well, if they dont have another pilot, I will fly him the whole way." I was so happy! He then went on and even offered to stay overnight in Houston, and fly all of us home Sat. Amazing!!! Truly amazing!! A stranger willing to help us out like that! Wow!! I feel so blessed! I let him know that I had to drive our car home-but thank you so much for the offer. What a nice guy! So Phil will be here tomorrow afternoon, Im guessing around 1230 or 1pm. How exciting!! I cant wait. I cant believe our trip in Houston is over for now. Is doesnt seem real. We have really enjoyed our stay here. Now a whole new adventure home. :) Hopefully life will slow down a little without all the doctors apts and chemo out of the way. I am looking forward to it!
Oh, and Make-A-Wish called and they are looking at coming and doing our backyard playset Aug 7...I can hardly wait! What an amazing week of good news we have had! I pray all the good news continues! I def. could get used to receiving good news after all the bumps we have gone through! :) Ok-so this is my last post before we go home...I just couldnt help but share my good news! lol Thanks for all your support and prayers!