Wed Nov 25, 2009

Blake and his cast on Turkey Day

Well, Happy Thanksgiving everyone-a day early! I have SO much to be thankful for this year: Blake and his steady pace to recovery, my family, all my fabulous friends who I dont know what I would do without, amazing docotrs who have worked miracles, amazing therapists who we depend on so much, my job that is still waiting on my return, my wonderful bosses, and so many amazing people who have reached out and helped us through everything, there is so much more...
Blake still has a cold and ear infection-poor kid. He is toughin in out though. He had a rough day at school(TLC) Monday. He fell down on the playground and busted his lip, fell asleep eating lunch, and was just not himself. lol. Tuesday we had Rehab, he seemed to be feeling a little better. His ear was draining like crazy. Cathy got the stuff she needed to cast Blake's left arm. So I got to help her cast up his arm. Blake now has a redish orange cast that starts at his fingers/thumb and goes all the way up past his elbow. The purpose behind this is to force Blake to use his right hand. Since the Botox has relaxed his tone-we are ready to do some 'intensive' therapy. Blake doesnt seem to mind the cast as much as I thought he would. He gets frustrated, but really he is doing well. This is also really helping his speech. He HAS to use his words to communicate what he is wanting. Of course right now he is not strong enough to do a lot by himself, so my new job is helping him hand over hand, and helping him with as little assistance as I can. Its hard to watch him struggle but i know its for the best. So I make him try to do everything on his own first, then once I see the frustration coming I assist. I have to help him play, eat, dress, etc. Pretty much wherever Blake is now I am RIGHT there. lol. Its a little exhausting, but I am trying to keep the big picture in perspective. I want him to get use of his right arm back, and if I have to help him 24/7 in order for that to happen-im doin it!! :) I know that the first couple weeks will be the hardest. Im hoping he takes to this the same way he took to walking. At the hospital he kept saying 'Mama walk, mama walk'. After surgery he couldnt even stand up, with his persistance he was walking with assistance before we left the hospital-keep in mind we were only there for 2 weeks. So I know if he puts his mind to it-he can do it! Im so proud of him!
Tomorrow we are going to my parents house for Thanksgiving, I cant wait for my grandma's pumpkin pie!! Its the BEST!! I hope you all have a wonderful turkey day!! Talk to you all soon!!
Love,
Mandy

Thur Nov 19, 2009

Hello everyone! So Blake had his EEG on Tues. It went well-we are still waiting on the results. By Tues night Blake had a cough, and by Wed morning he was weezing and coughing like he had croupe. I took him to the doctor Wed morning and yep he has croupe. We missed therapy at rehab to go to the doctor-but still were able to make his AFO apt. They cut the toe plate off his boot so now he can bend his foot when he walks. I think it will help a lot! So when we got home he took a nap, when he woke up he still sounded horrible. We gave him the stereroid they prescribed. After his bath I was getting him dressed and I noticed his chest sinking-I called Phil in to look too. We didnt like the way he was breathing so I called ask a nurse(I love them) and she advised me to go to the hospital to get him looked at. Since Phil had to get ready for work I called Christian, who of course met me at Childrens Mercy South Urgent Care. I dont know what I would do without her!! They checked him out and said its still just croupe and that opening his window to let some cool air in will help, and use a humidifier. They also prescribed us ear drops and antibiotic for his ear infection. The doctor advised me it would be best to keep him home today to watch him and let him rest. So another day of school was missed. :( I am just hoping that he will get better soon, poor guy sounds horrible. So that has been our fun week lol. Phil thinks staying up till midnight on Mon night and waking up at 4 on Tues for the EEG was too hard on him. Who knows. I just hope he gets well soon! We are planning on going to rehab tomorrow since he hasnt had a fever and seems to be doing better. He just sounds bad.

Mon Nov 16, 2009

We have been having such FUN weekends lately! We received 3 tickets from TLC where Blake goes to school last Thurs. and went to the circus on Sunday night. It was SO fun. Blake loves elephants-so being able to watch elephants do tricks-and lions and tigers and bears-oh my. He had a blast! I must say it was the best circus I've seen in a LONG time. I am already looking forward to next year's! :) Blake started going all day at TLC this week. 8-330 on Mon & Thurs. We are still doing rehab on the other 3 days. So he has a busy week now. Our EEG is tomorrow-which means keeping him up till midnight then waking him up at 4am-and did i mention he only took an hour and a half nap today. LOL. Its gonna be a long night! I am anxious to see the results of the EEG-im curious if we will find out more info on his seizures. I guess tomorrow we will know. lol. We also go in on Wed to get his AFO-leg brace-adjusted and hopefully get a new model that allows more ankle movement. Thats really all for this week-well i guess that actually a lot. :) Talk to you all soon!

Mon Nov 9, 2009

Botox went so well today! We took Blake in at 10. They gave him a topical numbing cream and a tylenol 3. Once the cream had been on for an hour they came in to do the Botox. I asked the nurse if it would be okay to distract Blake with a sucker while they were injecting him. They said we could try. Let me just say-it worked out really well! He would stop and look at me while they were injecting him, but he didn't cry. Well, not until they did his thumb. Then he did cry-but that was it. They did his leg next and then we were all done. We ate lunch in the cafeteria, then headed home for a nap. Blake crashed out. Then tonight I took him to Build-A-Bear workshop and he picked out a dog. We stuffed him and he named him Bo Ruff Ruff. lol. My sister Megan and niece Kirsten came with us too. We were all laughing because Blake kept picking up pink bears and pink stuffed animals. I was relieved when he finally decided on his dog. I think Bo will go with us to all of Blake's upcoming doctor apts for comforting. He hasn't put him down all night! We will be back at therapy on Wed. We are just going to relax tomorrow in case Blake is sore. Thank you all for your prayers and thoughts!!

Thur Nov 6, 2009

This week has been so busy! Monday was Blakes first day at TLC. He did pretty good. We dropped him off at school, he went running down the hallway with his teachers, and then realized we weren't coming with him. He cried for a little while, until his teacher found a police car-then he was happy. They have an observation room, its behind a mirror-so the kids cant see us. Phil and I sat and watched for about 30 min, then decided to go. He was doing art work when I went back to observe again before I picked him up. I think he will like it once he gets to know everyone.

Circle C Cafe in Paola, KS

Tues we had Rehab Institute-he is doing really well. We are all looking forward to the botox on Monday. He loves going to Rehab Institute, and he really loves all the therapists there. He talks about going to see them a lot. I know they all enjoy him too. That makes things so easy on me. Hard drop offs are the worst! Plus going to the Rehab Institute I get a chance to talk to other mom's and dad's going through similar experiences.

The amazing crew to whom we are so grateful!

Wed we went to Rehab, then that night we were invited to a Benefit Dinner/Auction for Blake in Paola, KS at the Circle C Restaurant. Man-that was such a heart warming experience. This town of people we dont know-all came together to help us out. The restaurant held a spaghetti dinner from 4-8, and the auction started at 6pm. The restaurant dontated all the money made during that time to us, along with all the money raised from the auction. It was amazing to me watching perfect strangers show up to help us. The Paola newspaper also wrote an article about Blake, it was on the front cover!! Everyone in Paola has been so generous! I am still amazed at how much support and love we continue to receive. I seriously dont know how to thank everyone enough. Thank you just doesn't seem to be a strong enough word. :) I love you all!!

Sun Nov 1, 2009



My little Pirate-1st costume



Pirate Blake trick-or-treating at rehab



This weekend was SO much fun!! Friday day Blake had therapy at Rehab, they had a parade through the whole building and handed out candy. Friday night we went to 'All Hallow's Eve'. OMG it was SO much fun. We had a blast. The maze turned out really cool, and the Mad Scientist(my dad) was hilarious. Everyone seemed to love the pumpkin painting booth! The fortune teller and tattoo booth's were a hit as well. There was a lot of candy, yummy cupcakes, cookies, and punch! I seriously haven't had that much fun in years. I felt like a kid again! It was great. Blake was Blakenstein, of course within the first 5 min he ate a cupcake removing the make up off his chin, lol. So I didnt get a chance to take his pic before the make up came off. lol. I did take a lot more photos. If you want to see ALL the photos I have them posted on my Facebook. Look me up-Mandy Blake-Danforth. Thanks to everyone who came out to support us-we seriously had SO much fun.
Sat we spent the majority of the day sleeping/napping lol. Then we went to my parents house for trick-or-treating and snacks. Blake's 2 costumes were pretty dirty after all the festivities, so we ended up buying a 3rd costume lol. Buzz Lightyear. It was actually pretty cute! We went around the block with all 3 cousins. They were all so freakin cute! Then back to Nana & Papa's for dinner/snacks. It was so much fun. I love Halloween, it has always been my favorite holiday. Something about dressing up as whatever you want, and getting a bunch of candy-its the closest thing to bein a kid again. :)
Today I tried to clean house and do laundry, I got most of it done. There is alway this week to finish up I guess. lol. Im excited for Blake's first day at TLC tomorrow. I know he will enjoy it. Also, this Wed Paola is having a dinner for Blake-it's going to be at the Circle C Restaurant in Paola, KS from 4-8. A reporter from Paola is also doing a story on Blake and it's going to be on the cover of the Wed Paola newspaper. Im excited to see it. Im looking forward to this week. Hope everyone has a good one as well!!



I love my little monster! He made a great Frankenstein!



Blakenstein and Christian at All Hallows Eve





Buzz Lightyear for Halloween night at Nana & Papas
his 3rd costume