Wed March 31, 2010

Mic-key button! Woo hoo!!

Hello everyone!
So Monday we went to CM and Blake's had his g-tube replaced with the actual Mic-key button. They sedated him and the actual procedure only took 20 min. They had to gage the hole where the g-tube was since the mic-key button is a little bit bigger. Poor Blake! He was in pain on Monday.
He finally was able to have a REAL bath!! We let him play in the tub till he was all wrinkly. lol I know it had to feel SO good to just sit and soak. He slept really well Monday night!
Tuesday we went to Rehab-he worked really hard but he definitely was showing signs of discomfort. He is such a trooper. He ended up falling asleep during his last session-PT. Lol. I went over to Union Hill to visit while Blake was in Rehab. I miss all the kids SO much. They have all grown so much-its crazy. I was kind of sad when I left. I was watching all the kids working and playing, realizing that a lot of the kids that were in Blakes 2 year old class are now in preschool. Blake would have been in the preschool class now too. It made me sad. Plus watching all the kids work-using 2 hands, how easy they move around. Blake still cant really use his right hand/arm. He tries really hard but still struggles with a lot of daily activities. I know they are working on strengthening it at Rehab. It really makes me sad to see him struggle with it. I want SO bad for him to be able to use it-and do things independently. After seeing all the kids doing work I have decided to try and put some preschool work in his playroom and Im going to attempt to give him some Montessori lessons. Spooning, pouring, counting work, etc. I know he cant carry a tray by himself-but im gonna try to teach him how to compensate. Even if it means carrying each piece individually. He really misses school. I want him to have some of the preschool experiences. Now if I can just get my fabulous husband to make some shelving. lol
We are at Rehab today-Blake woke up in a great mood! He just went back to do PT-he also gets 30 min massages on Wed! Lucky kid! lol We found out yesterday that Blake gets to attend the Rehab Institute's Summer Camp!! He will stay at 3 days a week. They go on field trips on Wed's, and he will get to do fun crafts and activities. Im really excited for him to get to participate. It will be great for him socially too! I cant believe ita almost been a year since this whole thing started. He turns 3 in June-I cant believe it! He is gettin so big-time sure does fly! We are already planning his party! Im gonna do a circus theme-thanks to Union Hill letting me use the same decorations they used for their Ann. week! I have a feeling this is gonna be his best party yet! :)
I will talk to you all soon! Thanks for keeping us in your thoughts and prayers!

Sun March 28, 2010

What a FANTASTIC weekend! I must say this was such a fun weekend! Sat we had Phil's sister and girls come up for an overnight. We celebrated Katie turning 4. Blake helped me make a birthday cake for her. Confetti cake with pink icing. Of course Blake picked out pink frosting. Blake had such a blast playing with the girls. Its been a while since we have seen them so it was such a nice treat. He was sad when they left today. Once we had an empty house we all took a much needed nap. lol Later on Phil made homemade hot wings and potato wedges, ugh they were SO good. We also had one of Blake's favorite fruits-grapes. Mmm. I was SO full afterwards. It was nice to just sit on the couch and relax the rest of the evening. Now im hanging out with Christian and watching "New Moon". God we LOVE this whole series. lol I know we are big nerds-but the books were SO good. Im totally sad that there aren't more. Ahh-Blakes sleeping, hanging with my best friend, full tummy, what more could a girl want! lol
Tomorrow we have to be at CM bright and early-7am. Blake finally gets his Mi-key button for his g-tube put in. I seriously cannot wait. Blake hasn't had a bath in 2 months-well a real one anyways. He has been begging me 'Bath mama, pleeeaaase'. So im gonna let him stay in the tub till he is a prune. lol It gonna be so great not to have to worry about changing his dressing anymore. Blake hates it-so I will be so thankful when I dont have to make him cry anymore. Blake has been doing really well lately. He still has 'gremlin' days but we are learning to handle them better. Im looking forward to summer. I cant wait for the warm weather! Spending time outside! Im hoping Blake likes his babypool better this year. Last year he was not crazy about it-lol. So I guess we will have to wait and see. Ahh...so on with my relaxing night. Talk to you all soon!

Sun March 21, 2010

Hi everyone! Well up until today Blake hadnt shown any side effects of the oral chemo. He woke up and within 30 min was throwing up. He threw up every 10-15 min for the following 3 1/2 hours. We tried giving him his anti-nausea med but within 5 min he would throw it up. We called our hema/onco on call nurse and she said to try giving Benadryl along with the zofran. The first time we tried it he threw it up within 5 min. So we waited 30 min and tried again. He threw it up again, but this time he seemed to be feeling better. After an hour he hadn't thrown up-and he was able to eat a few crackers and drink a little water. He is such a trooper. Ive never seen a little kid throw up without crying. He just leaned forward-threw up-then leaned back and rested until the next time. I felt SO bad for him. He is such a good kid. Through everything he amazes me. We had a super lazy day yesterday-and since Blake isnt feeling well-we are having another lazy day. lol. Im hoping the next 2 doses of procarbazine wont cause him to throw up. We are almost done with the oral chemo. So by 1:45 tonight we will be finished, then in 2 week we will go to his apt for vincristine. Thank you for the prayers and thoughts! I will let you know tomorrow how the rest of the night went. <3