Mon Dec 28, 2009

At the Danforth side, Blake and Katie heading out

I hope everyone had a VERY Merry Christmas! Blake had a really nice Christmas. We left Christmas Eve to go down and see Phil's family. They live 2 hours south of us. It was really nice to see everyone. We came back on Saturday-and boy what a shock! There was A LOT of snow. lol. They only had like 1 or 2 inches where we were staying. I was so excited to have a 'white Christmas'. We had Christmas with my family on Sunday. I really missed spending Christmas day with them. This was the first year we were away for Christmas. Blake had so much fun opening gifts. I actually think he liked that more than actually getting gifts. lol. He got a lot of fun stuff this year! The Fisher Price Batman Cave-he loves Batman, a stuffed dog-Lola that he drags around by a leash lol, some books, a couple movies, some clothes, and of course Disney's Car 'cars'. I think its about time for a garage sale-lol. I never thought one kid could have so many toys. Once you have a kid-toys seem to come out of the woodwork. lol. So my job while we are on a little 'winter break' is to organize and go through the house and bag up what we dont use. Ugh! What happened to playing with new toys and just bein a kid. I am really an adult now. lol. Blake has 2 apts next week, and let me tell ya the week is going by really slow. I am really ready to hear what Dr. Shore is planning for Blake. We still need all the prayers we can get-I know everything has already been planned out-but miracles do happen! So pray for us please!! I am looking forward to the new year and I hope its a good one! Thank you all for keeping up with us! Your support means SO much to me. I will update you as soon as we find something out! Talk to you soon!





Always doing things to make us laugh!



Cousins on my side-Kirsten, Mason & Blake



Sat Dec 20, 2009

Hi everyone! So I wish I could say that everything is the same and that we are moving closer to Blake being discharged from Rehab. However we got some disheartening news last week. Blake's MRI showed that his tumor had slight growth. So at the beginning of the new year we will be going to talk to oncology/hematology. They are going to get Blake on some sort of treatment plan. We wont know what kind of treatment until we go talk to Dr. Shore. I also talked to Blake's neurologist about his seizures. I found out that he has epilepsy and most likely he will have to be on seizure medicine for the rest of his life. Dr. LePichon said a small amount of kids outgrow their seizures, but due to the scar on his brain he thinks this is unlikely for Blake. I know Blake has suprised us before, so I still have hope! Due to him not being discharged from therapy and us looking into treatment this means, unfortunately I wont be able to return to work in January like I hoped. I still hope that one day I will be able to return. I really loved my job-and my class!! I have such an amazing group of parents and children. I miss them A LOT! I also have such INCREDIBLE bosses-to whom I cant thank enough for all their support and understanding.
So other than our recent news, Blake is doing really well in therapy, and he is such a happy kid. We are going to continue to look at the positive. We still have a lot to be thankful for. Please keep us in your thoughts and prayers! I know you all are thinking of us! It really means a lot to us! Hope you all have a very Merry Christmas! I know I am looking forward to spending the holidays with our families!

Fri Dec 4, 2009

I cant believe its already December! This week has been so busy. Blake's cast has really helped his right arm become stronger. He is already showing improvement. I am so proud of him, he is being so patient with the cast. When he does get frustrated I just tell him to use his words and ask for help-and he does. I am trying to stay as patient as I can, its hard though because he isnt sleeping very much due to the cast. So being tired and having to be patient is quite a challenge. Im hanging in there though. Blake is doing really well in therapy at both Rehab and TLC. He has his MRI next Wed, im hoping we stay well until then, otherwise we will have to reschedule. He has been sick for the last 2 weeks. :( So I am keeping my fingers crossed. I am really anxious to see the results of the MRI. I am curious to see if things are the same/different/better. His speech therapist at TLC asked if we could get rid of the binky. Sooo after next Wed-we are doin it. Im not sure how Blake is going to do with it, Im just praying that its an easy transition. He really loves his binky. Lol. I know it has come in handy a lot. But its time. I guess thats all for this update! Talk to you all soon!!

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



Sun Oct 25, 2009

Hi everyone! Im excited to say that we have a lot of things getting ready to happen-
First, the Paola newspaper is coming out tomorrow morning to do a story on Blake in their newspaper. Im a little nervous, since i've never done an interview. lol. I am very excited that they are dong a story on him though.
The Halloween Party is this Friday and we are really looking forward to it. Blake's costume is finally finished, still looking for shoes though. lol.
I am so happy to say that Blake was accepted into the Children's TLC preschool program and he starts Nov. 2. He will be going Monday's and Thursdays from 8am-11am. This school offers a preschool environment as well as all 3 therapy's! We were trying to figure out the financial part, but after applying for the scholorship-we were accepted and now get a 65% discount. :) I cant tell you how happy and thankful we are about that. I am amazed how everything has a way of working out.
Also, in Novemeber, we have Blake's EEG coming up, as well as Botox and a new brace for his leg. We also have several doctor's appointments, nothing too crazy. Just check ups. This is going to be a good month I have a feeling. Oh and Thanksgiving too, lol. I have a lot to be thankful for this year. Its amazing how quickly time is flying by.
Thank you all for your support and constant prayers! It means so much to us!

Wed Oct 14, 2009



Blake working with Lynn-his PT



Blake working with Cathie-his OT



Hello!! Blake is finally feeling a lot better. Therapy is going good, he has been working really hard and is doing a lot better picking up/releasing with his right hand! :) His therapist Cathy is very excited! We are looking at getting Botox in the next couple of week, hopefully. Our insurance finally sent the letter of approval. Last week we went and toured Childrens TLC (therapeutic learning center). We really liked it. We have an application that we are filling out, and we are applying for their scholarship. Blake would go Mon & Thurs. 8-11am. He would be in a preschool environment with kids his age, AND get all 3 therapies while he was there. They have a pool for aquatic therapy, and a gym for physical therapy. They have 2 indoor playgrounds and an amazing outdoor playground. The classes are small and there is a teacher and a couple assistants as well as all the therapists. We are very excited about this. Just trying to figure out the financial part of it now. Blake loved the school, he didnt want to leave. lol. First steps is going to cover the therapy at TLC, so we would have to end the therapists coming into our home. I love our in-home therapists, but I know this is what Blake needs now. The social interaction would be so beneficial to him. Thats the one thing he isnt really getting now. I think he misses playing with kids his own age.

I am so proud of him, he is working so hard and not getting discouraged. Being sick set him back on the potty training, but really im not too worried about that right now. He is just doing so well with his therapy. Its still a slow process, but we are getting closer. They have pushed our goal date to be done with rehab back to the end of the year. I had a feeling that it would be longer than Nov, especially since we haven't had the Botox yet. Im hoping once we have Botox, he will be able to go full time at TLC, or come back to Union Hill. I look forward to returning to work. I really miss all my kiddos. I haven't been able to see them for a couple weeks and I miss them like crazy!
The Halloween Party is approaching and we are VERY excited. Blake is going to be Frankenstein-real scar and everything lol. I LOVE Halloween, its my favorite holiday. :) Christian has so many fun things planned. I cant wait. Also I just found out that a lady my dad knows from Paola has put together a benefit dinner for Blake on Nov 4 at the Circle C restaurant. I was so suprised! Its amazing to me that people who haven't even met us are willing to help us out. My dad also told me that there is a guy who has put boxes around Paola and is collecting empty cans. Then he takes the empty metal cans (from canned goods) and gets cash for them. I cant tell you how touched we are that strangers are willing to do so much to help us out. All of the support we have is truely AMAZING!! I cant thank you enough, EVERYONE, for everything!! We are extemely grateful!

Sun Oct 5, 2009

Well, we didnt go to therapy on Wed, or Fri. And we didnt have in home therapy on Thurs. Blake hasnt been feeling well-he has a cold. So we took a few days to relax and get better. We had a pretty relaxing weekend. We swapped Blakes playroom and bedroom-again. lol So now his room is back in the bigger room. I think the 'playroom' was a little overwhelming for him, so we broke it up a little. He seems to like it! I know I do. We finally got approved for the Botox by our insurance, we have been waiting for them to give us the ok. Now we just have to wait to get the letter letting us know exactly what they will cover, then we will be scheduled in for Botox. Other than that there is nothing new. So I guess thats it for now. :) Talk to you all soon!!!

Children's Halloween Costume Party

Christian has given me the info for the Party! Im so excited!! Here is all the info that is on the flyer:

All Hallow's Eve Children's Halloween COSTUME Party as a Benefit for Blake Danforth
sweet or scary,
ghost or fairy,
dead or alive,
don't be late to arrive...

Friday, October 30th, 2009
7:00-the witching hour

$8 per child

New Life Family Church
4835 Shawnee Drive
Kansas City, MO 66106

Please join us fro a fun-filled night and a chance to party with Frankenstein (Blake)!!
This is an open invitation, so invite your friends and family!
Children MUST BE accompanied by an adult.
Feel free to dress up with your child.
Bring trick-or-treat bags!
Games, crafts, a movie, and much more!! (We will be watching Hocus Pocus from 9-10:30pm)

PLEASE RSVP by October 15th
Catch Me Running: The Blake Danforth Foundation
blakedanforthfoundation@gmail.com
(417)684-5461

Wed Sept 23, 2009

Hi everyone! So we had our neurologist appt today at Childrens Mercy South with Dr. Lepichon. He was AMAZING!! We were able to look at ALL of Blakes MRI's and he explained them to us. From what I understood, Blake still has a lot of swelling left, at least that is what they hope it is. We also learned that Blake MIGHT be having seizures-which could be causing the falling down, waking up in the middle of the night, etc. He ordered a EEG, which we have scheduled for November. Until then he has given us a seizure medication to try. We started the seizure medication tonight. He told us if it is seizures that Blake is having we should see an improvement in 2 or so days. He gave me some books to read about seizures. He gave us so much information, it has really helped me feel more comfortable about our situation. He agreed with Dr. Hornig that the best thing to do now is wait and see what the next MRI tells us. He said that good news would be that the MRI looks the same or better. Obviously if its bigger thats bad news. So we are waiting with hope that the next MRI will bring good news.
Also, we are looking into starting Blake in a half day preschool program. We aren't sure where he will be going just yet, we are looking into a specialty school TLC, where he would recieve 1 on 1 care along with OT/PT/Speech. This is our next big decision. I would love for him to go back to Union Hill, but due to his physical limitations im not sure how that would work and if it would be the best place for him due to his limitations. So we are waiting for TLC's social worker to call us back and set up a time to go visit their school. I am so excited for Blake to be getting a little 'normality' back. Blake loved school before all of this happened so I know he will be excited to be back! We would still continue at Rehab Institute 3 days a week, but would be going only half days. I know Blake would love to be around kids his age, he is quite the social butterfly these days. :)
One more thing...My friend Christian wanted me to put a bug in your ears. She is planning a Halloween Benefit Party for kids on Fri. Oct 30. I will be getting more info soon. So mark your calendars!!
I want to thank you all again for all your prayers and thoughts! I cant tell you how blessed we feel to have all of you supporting us!!

Fri Sept 18, 2009

So our MRI was Tues. As far as news goes-they were able to get a good look at the tumor that is still in his brain, but were unable to tell us what is causing Blake to fall down and drool so much. This MRI is our base. It is our first MRI since the surgery, and our next one will be in December. Hopefully at our second MRI we will find out if the tumor is growing or not. Dr. Hornig(our neurosurgeon) is sending us to go see Dr. Lepichon-he is a neurologist, next Wed. I am hoping he will be able to explain more to us. Blake is doing well otherwise. I want to thank all of you for praying for us. We were nervous about the MRI and even though we dont know what's causing him to fall/drool, I was relieved that there was no bad news. So we wait now. Thanks again for all the prayers!!

Tues Sept 15, 2009

I need everyone to pray for us! Blake's MRI got bumped up to tomorrow. He has been falling down more frequently and drooling more. In addition to not sleeping that great and his eyes being puffy, the therapists are concerned. So tomorrow we go in for his MRI. I am praying that everything is ok.

Thurs Sept 10, 2009

Happy to be on Grandpa's boat-his very
first boat ride!



Blake and his cousin Katie, she was diagnosed with lukemia
only 5 months before we learned of Blakes brain tumor.
 Talk about 2 tough kiddos!



Hello! So we had a great time at the lake. Blake took his first boat ride. He loved it! We had so much fun seeing all of Phil's family. It was really nice to get away and not have a schedule to keep. I took my watch off and turned off my cell phone(I had no signal) and lost track of time. It was SO nice. Phil really enjoyed fishing with his niece Lauren, and he got to water ski too! It was just so nice to get away. When we got home, Phil got Blake his first 'ice cream truck' ice cream...he chose Batman of course! :)

So, this week was supposed to be a big week for us. However, it actually ended up being some what relaxing. Tuesday Blake went in to get his AFO(leg brace) modified. They decided to go ahead and order a whole new one. So in two weeks we will have a new brace. His current brace was made when we were still in the hospital and he wasnt walking yet. The new one will be angled a little. Im not sure exactly what else they are going to do to it, but I am excited to see the improvements Blake will make with a new brace! We were supposed to be scheduled for Botox on Wed. However, it got cancelled because they are still waiting to hear back from our insurance. I was a little disappointed. Its going to be rescheduled as soon as our insurance gives the okay. So we instead had a fun day with Nana and Mason. We went to the book store and got some books to work on colors, counting, and shapes. Today we had First Steps. Blake really enjoys playing with the therapists. :) He is working hard and showing improvements. There are a couple of things we are keeping an eye on. He is falling down and his drooling is picking up again. The falling could be caused by the tone that has built up-and the drooling could be caused by how tired he is from working so hard. I think we are going to try and bump his MRI up, just to be on the safe side. Other than those two things he is doing really well. His talking is improving daily. He is slowly getting better control of his right arm. That is his biggest challenge right now. He still neglects things on his right, and we are working on it daily.

Tomorrow is not going to be a fun day for me, im getting my wisdom teeth pulled. :( Ive been putting it off for a while and decided that since I am off work right now I might as well get it over with. I am sorta scared. I know I will be ok. Megan is going to watch Blake for us all day tomorrow so I can come home and relax. I know Blake will have a lot of fun at Aunt Mimi's. Plus he gets to hang out with Kirsten.
Well, I think that is all for now. I will let you all know once our Botox appointment is rescheduled. Keep us in your prayers!! Talk to you soon!

Thur Aug 27, 2009

First, I want to say THANK YOU for coming to the benefit dinner and support from those who couldn't make it. Another BIG thank you to everyone who helped with the dinner. And of course a BIG thanks to Alyssa-it was a big success!! We had SO much fun seeing everyone. I really loved the social aspect of it. :) It was so good to see everyone. Blake had so much fun that we ended up having a lazy sunday to recover-lots of naps. ;) I cant tell you how grateful we are for all of the support from everyone!
Blake's therapy is going well. Its in full swing. We have outpatient therapy 3x a week from 9-2 and now first steps-in home therapy 3x a week. Blake is working hard. We are scheduled for Botox on Wed Sept 9. I am excited to see the results. Everyone I have talked to say the results are amazing.
I am so excited for this weekend, Phil's birthday was the 25th-so we are going down to the lake to see his family. Blake is excited to ride on the boat! Phil really wants to water ski, and I am looking forward to getting out of the house for a few days. I think it will be good for all of us! I guess thats all the news for now.
P.S. I finally have an internet card that I can use, so look forward to more frequent updates!! :) Thank you Liz!!!

Sun Aug 16, 2009

Hi everyone!! This was a pretty productive week! We met with Dr. Hornig-our neurosurgeon. It was just a follow up appointment. We didn't really find out any new information. Our MRI is scheduled for Oct.14 and hopefully we will know more then. There is a chance that we will have to wait till the next MRI after this one to know anything. Waiting, waiting, waiting-ugh! I hope we know more at THIS coming appointment. lol. Blake is still doing really well. The therapists put us on the schedule for Botox, but there is a long wait for that too. Like a couple months. So once its closer to his appointment they will re-evaluate him, to see if he still needs it. We had our scheduling meeting with First Steps on Thursday. Starting this coming Thursday, we have a PT-Stacee coming to our house to work with Blake. I am still waiting for calls from the OT, Speech, and the Special Instructor to schedule them as well. We are going to have PT, OT and Speech once a week and then the Special Instructor once a month. Basically the Special Instructor is a teacher who comes and evaluates Blake to make sure he is meeting all the developmental marks for school/preschool. Blakes scar is healing GREAT!! A lot of people tell us they barely notice it. Dr. Hornig did an amazing job! We are excited for the dinner on Sat. I am looking forward to seeing everyone. It will be nice to talk face to face and see everyone!! :) I am sorta missing all the socialization. Blake is getting really good at talking. lol. Its still not the same as 'grown up' conversation. :) Well I guess thats it for now. I will talk to you all later!!

Thurs Aug 6, 2009

Hi everyone! We are all doing well. We found out on Wed. that there is a possibility that Blake will need Botox injections in his leg and arm. He is having difficulty when it comes to putting his foot flat on the ground, he looks like he is on his tiptoes but the tone in his leg is what’s causing it. He is also struggling with opening and closing his hand, they are trying to get him to pick up weightless objects and he is doing really well, except he has a hard time releasing things. Botox will help relax the muscles so the therapists can help Blake work on those areas. I hate the idea of injections-it sounds painful, but I can see him struggling and I know its all for the best. The therapists are also looking at extending his time at therapy an extra hour. In reality that means 9-12 therapy, 12-1 lunch, and depending on Blake’s moon 1-2 nap or therapy. If he naps from 1-2 then therapy would be 2-3. This makes a LONG day for both of us. I know we can do it, and I am very excited about getting more therapy in. However, I have to stay at the institute while he is getting therapy, and honestly it’s getting to be pretty boring for me. :) There is no wireless network-and I am having a hard time keeping busy while I’m there. I have read a book, started into another one, read countless magazines, and worked on my lesson plans. So what’s a girl to do? Lol. I know my creative little mind will come up with something. If anyone has any ideas-please let me know. I am definitely up for suggestions. Let’s see what else. Oh there is also a chance that we will have to get his leg brace (AFO) modified. Our PT Lynn said she is going to look at it on Friday and let us know. We are looking forward to the ‘Park Party’ on Friday. Blake really enjoys seeing all the kids. He is having a blast!! Please feel free to join us, even if it’s just for a short time. I love seeing all the kids too! I am really missing them! Right now the plan for Blake is that we will continue 3 days a week till November. There is no set in stone date, it all depends on Blake recovery. This means I could be back to work sooner, or later. This is hard for me because I miss work and my class and there is no set date to plan on. I do really well when there is a plan. I am trying to get used to all this ‘unknown’ information (i.e. brain tumor, therapy, everything we have to be patient with) . A new life lesson I guess. ;) I just keep praying that we will be back at school soon. Blake is amazing and I am going to do all that I can to help get him back to where he needs to be. I guess I will talk to you all later! I miss you all and am so grateful for everything you have done for us!!

Benefit Dinner!

My cousin Alyssa has put together a benefit dinner to help raise money for Blake. If you would like to attend here is the information:
Tacos/Burritos-Ice Cream-Face Painting-Bean Bag Throw-Door Prizes
Meal tickets $10 plate for 6yrs and up, $5 plate for 5yrs and younger
Location: New Life Family Church 4835 Shawnee Drive, Kansas City, KS
Date: August 22, 2009
Time: 5-8pm
RSVP: Alyssa Blake 913-832-5228
All money raised/donated will be put in the account that has been set up for Blake at:
Enterprise Bank & Trust on the Plaza
Attn: Jackie Blake
4717 Grand Ave Ste 100
Kansas City MO 64112
Hope you can make it out-we would love to see everyone! And show off how great Blake is recovering! :)

Thurs July 30, 2009

So more big news!! At therapy on Tues. Blake extended the fingers on his right hand, they were working on having him pick objects up!! Before this he hasn't really had any control over his fine motor. So this was GREAT news. Our therapist Kathy almost cried. :) He is doing so good. Everyone is so amazed with him. Each day at therapy he works so hard. Im trying to get us in with First Steps. Its through the gov. and they would come into our home and give Blake therapies. On Wed. we had therapy, and then our First Steps evaluation. Stacey(our evaluator) hung out with Blake and I for an hour. We are still waiting on the call to let us know if we are accepted. Blake is doing great. He gets a little frustrated with me when I try to work on some of the stuff he does in therapy. He does, however, work really great with the therapist's. As long as he is doing great for them, I guess I dont mind. ;) Well I will update you more later. :)

Mon July 27, 2009

So today was the big 'hemotology/oncology' appointment. We finally heard the results from the 2nd pathology report: a low grade glioneuronal neoplasm. Basically, its exactly what the report said it was in the first path report. Right now there are NO malignant(cancer) cells. We are very happy/thankful/relieved about that. As far as treatments go, we already had the surgery so for now that is all that is needed. We will be taking Blake in for MRI's every 3 months for the next year, then if everything looks good we will be bumped down to every 6 months then finally once a year. Brain tumors are tricky things and are not reliable. What is slow growing now-may not be later. Thats the scary part. I try hard not to think about it. I wish so bad they could tell me that the tumor is all gone and that we never have to worry about this again. Dont get me wrong, I am so grateful that everything so far has been so positive. Its just that I hate not knowing if Blake is gonna have to go through more later on down the road. I keep praying that when we go in for that MRI, there is no more tumor. :)
We also had an appt with our pediatrician Dr. Hartman. I must say that I do love her!! :) She was so happy to see Blake, and how well he is recovering. She does want us to go see a ophthalmologist to get Blakes vision checked out. Just as a precaution. Before surgery he ran into tables and things that were just above eye level. So we are just gonna go get it looked at. Im not really worried about it. We have that to look forward to next month.

Blake and some friends at the Park Party on Fri

So the last week has been good. We went to therapy. Blake goes back all by himself now, so im not really sure what exactly they are working on. They do give me things to work on at home. So thats what we do. First Steps should be coming to give us an evaluation. We are still in the process of getting that set up. On Friday we attended our first 'Park Party'. That was SO much fun!! Blake had a blast. We are going to try to attend all of them. We just cant do the playground-Blake doesn't know his limitations, and there are a lot of big kids. Unsupervised big kids. :/ So you will find us hanging out in the field, flying kites, blowing bubbles and just relaxing. I was so excited to see all the kids at the park. I so badly miss my class, and all the UHDS kiddos. I cant wait to come back!! Pam, Terri, and Debby have been SO amazing through this all. Just knowing that my class/job is waiting for me, takes a huge weight off my shoulders. Everyone at UHDS has been SO amazing. I honestly dont know what I would do without them. I dont think words alone can express how thankful I am of all of you. You help keep me strong, just by being there. Ok so enough of the mushy stuff, im all teary eyed. Oh gosh! :P Ok. So until my next update. Thanks again.

Tues July 14, 2009

Busted! lol He was trying to stand to
walk and I told him to crawl. This is
the look he gave me. lol

Today was our first day at Out Patient Therapy. We are scheduled 9-12 Tues, Wed, and Fri. This therapy is a lot more intense than the therapy we had in the hospital. Blake did such a good job. I was a little concerned that he would be tired doing all 3 sessions back to back. Man is he a trooper-I was amazed that he lasted the whole session without one break. He did such a good job. He only threw one or two temper tantrums. That’s pretty good in my book. He is definitely 2. The OT and the PT have decided to work together for a while, to help get Blake crawling. We have a lot of work to do, and he is a smart lil guy. He has already figured out that he can scoot on his bottom to get around. This is a BAD habit and the therapists are not so happy. LOL. He has totally figured out ways to NOT use his right side. This is no good because it will make it harder to get him using his right side once he has movement back. So they are going to show him how to roll, crawl, and do the army crawl. They don’t want him walking just yet. He is still too unstable. Explaining this to a 2 year old is impossible. :) He is determined to get up and walk, somehow I have to figure out a way to just have him stand, and they also said if he insists on walking to let him hold on to something and walk around it. This has become my greatest challenge. He is doing so much better than expected. I still am in shock that 2 weeks ago this wasn’t even a thought in my head. Life can sure throw one heck of a curve ball. :) I am just so thankful for all the support and love that surrounds us. I know that I get a lot of strength from watching how amazing Blake is, he is such a strong little guy-well not so little. :) I seriously think he is doing so amazing because of all the prayers and support of all our friends and family. I honestly can not thank you all enough for everything you have done and continue to do. You are all so amazing to me. I know I have said it before but thank you SO much!!

Our weekend home! 7.11.09-7.13.09

Hi everyone! Sorry its taken me so long to do an update. Our internet doesn’t work so great at home. I have to say it is SO good to be home. I think my own bed and shower had to be the two things I was missing most. This weekend was great! I feel so lucky that Phil was actually able to spend the whole weekend with us. He works midnights so normally he works Friday night and sleeps most of Saturday, so having him home Friday meant we were all able to hang out this weekend. That was GREAT!! We went shopping on Sunday to find Blake a pair of shoes to go over his leg brace. Man-that turned into its own adventure. We ended up getting navy blue converse. His left foot is a size 8 and his right foot is a 9 because it has to go over the brace. So 2 pairs of shoes. They are a pain to put on, but he can walk a lot better once we have it on him. I looked for crocs-but we had a hard time finding a color we liked-along with 2 pairs in the same color. You wouldn’t think finding 2 sizes in one color would be that hard, but man oh man was it a challenge. Blake found one pair of yellow converse that he loved-but of course they only had size 8-no 9. So we just got navy. :) I must say we LOVE CONVERSE! It has to be my favorite kind of shoe. As for his ‘home therapies’ Blake is doing really well, I was nervous he would get frustrated since he cant really walk without assistance. However, I think home was just the medicine he needed. His ‘new’ train set is really turning out to be a great therapy tool. :) He has to stand up to play with it, and occasionally he will drop a train and have to bend down to get it. So its working out well. We still watch Elmo and Cars, not quite as much as in the hospital thank god! Everyday we play with his cars. I think cars and trains are definitely what makes him the happiest. If you add friends/visitors to that, he seriously couldn’t be a happier kid. I think the hardest thing for me right now is not being able to let him out of my sight. Since he is really moving-crawling and pulling up, trying to walk he falls down a lot. He is one motivated little guy. I am so proud of him and his determination, but man does it wear me out. I am just so glad that he is doing all that he is. The nurses really made me understand that a lot of kids who have brain surgery aren’t as fortunate to a quick of a recovery. I thank god everyday for his daily improvement. He is my little miracle.

Friday July 10, 2009

Well im sitting here, packing up the rest of our room. I have to say this room looks SO different without all the decorations. You all made this room magical with all the HAPPY things you brought up. I now see why the nurses loved coming into Blakes room. It was magical and I honestly believe it helped him recover quicker! We had speech and music therapy this morning. I think Blake knew we were going home today because boy did he fight us on doing his therapy. lol. We just finished ot and pt back to back this afternoon, so Blake is napping hard. He had another GREAT day of therapy. We are so excited to be going home, its been a little over 2 weeks since we got here. I am so thankful for all the amazing nurses and doctors. I cant tell you how much of a difference it made. I dont know how I would have made it through all of this without them, and all the love and support from all of you! You are all so special to me! Next week we have all of our appointments set up for outpatient therapy. We would still love visitors-again if you would like to come by the best time is gonna be after 5pm. On the weekends we will be a lot more flexible, so just call me. I will try to update you on his progress, however we dont really have the internet at our house. So unless they have wireless at the rehab institute, its gonna be a lot harder to update everyone. So bear with me. :) I will figure something out im sure. I just want to thank you all again, for your support and prayers. Keep praying for us, we still aren't totally through the woods. We should be getting the 2nd opinion pathology report soon. From all the signs and readings so far, it sounds positive. Dr. Shore said to call it a low grade level 1 tumor. I pray that it stays that way. I also pray that our next MRI will show that there is no tumor anywhere in his brain. I have a lot of hope in Blakes recovery. I know that he is gonna start movin his arm-its just a matter of time. He is one of the strongest 2 year olds I have ever met. We are gonna make it through this-and I cant tell you how much easier it is to do with all of you surrounding us and showing us all the love and support! Thank you thank you thank you!

Thurs July 9, 2009

I cant tell you how amazing Blake is! Everyday we go into therapy he is stronger than the day before. He is such a fighter! Its hard to believe that he has come such a long way in such a short period of time. Day to day he gets stronger and its miraculous to watch. Today he did so good in therapy. One of our challenges was to have him lay on his tummy and play on the floor on his elbows-putting weight on his shoulders. At first he couldn't do this for very long without support-only days ago. Today Marcy didnt have to help him hardly at all. She was shocked. He also did great work this morning with Angie-doing lot of sit to stand. His leg muscles are really coming back! We also finally got his leg brace this afternoon. He doesnt seem to mind it at all. Of course its totally cool. :) The brace is white with yellow foam and black velco straps, the middle strap is decorated with a rock band. Now that he has a true mohawk all the nurses are calling him the 'coolest kid on the floor' not to mention everyone thinks he is SO cute. I am one proud mama. He amazes them with his rocker look and sweet personality. Watch out girls-he is gonna be trouble. I know Phil is already coming up with all kinds of cool stories about how he got his 'cool scar'. Boys will be boys! :) Tonight we actually took Blake down to the cafeteria to get him out of the room for a little bit. He really seemed to enjoy it. I am really looking forward to going home tomorrow. At first I was a little nervous about taking him home, but after seeing all the improvements this week-I know that being home will be really good for all of us. We start outpatient therepy next week at the rehabilitation center. Nikki is the head of the outpatient therapy-she also happens to be a parent from my preschool class. Her daughter is in my class, and one of the speech therapists-Molly-her son is in my class too. How crazy is that? I feel so lucky to have such GREAT parents. I still cant believe how much fate/god has played in this whole situation. I need to just make a whole update about it! Maybe tomorrow I will. ;) Thank you all for all your support and messages! I love you all!!

Park Parties!!

Several of the amazing girls that I work with have come up with a way to help raise money for Blake. They are calling it "Park Parties". Basically they are donating their time to watch children at Loose Park on Fridays from 6pm-9pm. They will be doing this EVERY Friday through August. All money donated will be put in an account to help Blake. They are still needing volunteers to help and lots of kids to watch. If you have any questions or would like to sign up your child/volunteer your time call Christian at 417-684-5461
**Children must be potty trained and you can bring a sack dinner to eat at the park if they haven't already had dinner. :)
I feel so blessed to have such amazing friends and family! Thank You So Much for everything!!

Wed July 8, 2009

Good News! Good News! We just found out that we will be going home FRIDAY!! We will be moving to outpatient therapy 3 times a week. I will be working with him at home on the days we don’t have therapy. They are starting us out with 3 days and will work our way down. We only have 30 days of outpatient-so we are trying to use them wisely in case we need them later on down the road. Lucky for us the out patient counts Speech, Occupational, and Physical Therapy as 1 session. We still have a long recovery ahead of us-but being home is going to be wonderful. I know all the nurses have loved having Blake for a patient. He is quite good at listening to his heart and tummy. :) He raises his arm for the thermometer, and picks which leg he wants 'hugged' by the blood pressure machine. He is a great helper. He will miss all the nice nurses im sure. I hope you all keep visiting once we are home. Visitors are honestly the best medicine for him.
Today we had P.T. with a dog named Cabby. She was a border collie. Blake loved her! He read her a cheerios book and was able to feed her cheerios. I think he was her favorite patient because he kept giving her more and more cheerios. We have O.T. later this afternoon, and then we are done until tomorrow. His leg brace is expected Friday morning, and im sure not to long after we get it we will be headed home. Today has been a great day!

Tues July 7, 2009

Blake's new creeping splint

Well Blake sure did work hard today. We had Speech and Ocuptional Therapy this morning from 9-10am. He did such a good job. What an improvement he has made since last Friday. The speech therapist was amazed at how many words he was putting together. Last Friday he could only say one word at a time, and today he was putting 2 and 3 words together. She said that she really isn't worried about his speech, she thinks he is going to improve daily. His right hand is his biggest challenge right now. He still cant conciously move it. The therapist has him do a lot of crawl positioning-putting weight on his arm/hand helps strengthen his muscles. That is what we are really working on for the moment. I am praying that he will begin to conciously move his arm soon. Blake crashed after our session was over. Our rehab team of doctors came to check on him, they said they were going to have a meeting at noon to determine Blake's plan. We ate lunch, then had Music Therapy. Blake seemed to enjoy it. Right after that we had Physical Therapy. We worked on standing-to strengthen his right leg muscles. Wow! I cant tell you how much stronger his leg is from last week. Its so amazing to watch. He did really good. One of the last things Angie(our PT) did was have him walk to me-assisted of course. Since he was so tired she showed me how he began to pop his leg back. Hyperextending it. The more he got tired the worse it got. Right now they really want to focus on crawling-he just isnt strong enough to walk by himself yet. She said she thinks once his leg brace is finally here-hopefully Friday-that it will be no time before he is walking again. I know he cant wait until that day!

 

I cant thank all of you enough for all the support and love you have shown us. Blake is doing as well as he is because of all your visits. Kids are truly the BEST therapy for him right now. And let me just say-the nurses have all complimented us on his room. All the pictures and signs-balloons and flowers-stuffed animals and all the cars, they are GREAT!! Everyone tells us he has the coolest room on the floor! I know he loves all of it. I dont know what I would do without all the support. You are all amazing and I love you all!! So THANK YOU!!!

Monday July 6, 2009

We had Physical Therapy this morning. Meagan was amazed at how much stronger he was since last week. He did a lot of sit to standing. We had Music Therapy after we were done with Meagan. Blake loves the little drum. Then we were off for a nap and lunch. His schedule in the hospital is a little different than normal. The therapy really wears him out so he needs a nap around 11. He ate cheese pizza, grapes, a yogurt smoothie and a couple french fries for lunch. He is still eating really good. At 1 we had our Ocupational Therapy. Blake was fit for his arm brace. Its gonna help him keep his hand in the correct position while playing. He still cant move his arm if you ask him to, but sometimes he moves it while he is playing. He still doesnt know he is doing it. We are playing with cars A LOT and we watch movies inbetween. Cars are really all he has played with since we got here. Even in therapy they bring in the cars. You would think he would be sick of them by now. lol. Well its movie time, Blake always insists on Disney's Cars or Elmo. If I have to watch Elmo in Grouchland one more time-Im gonna go crazy. ;) Luckily the hospital has a small collection of other movies. We are looking forward to our visitors tonight! Thank you all for your amazing support!

July 5, 2009

What a great lazy day!! We all slept in until 8 this morning. That was so great! We ate some breakfast then took a nice long nap. When we woke up, the nurse let us know that we had another 6 hour pass. So we signed the papers and left the hospital. We ran home to get a few things that we forgot yesterday. Then stopped by Target to get a couple things. We ate lunch in Westport at El Rancho-gotta love mexican! We returned to the hospital and continued our lazy day. Phil left at 6 to go home and get ready for work. He is back on midnights now. So my friend Christian said she would stay the nights with me-she is so amazing! I dont know what I would do without her. Im a little nervous about doing all the therapy alone and handling everything without Phil. I know I will get the hang of it. Phil will come hang out with us in the evenings before he has to be back at work. Keep us in your prayers.

Sat July 4, 2009

4th of July morning in our room



Finally going for a car ride!



Happy 4th everyone!! We got some good news yesterday-we get a 6 hour pass to leave the hospital today!! So we are going to go home and restock our supplies for next weeks stay. Blake is gonna love gettin out of here for a lil bit. He has been such a trooper. We have physical and occupational therapy this morning. Then we will get to leave for a little bit. All the therapist are amazed how fast Blake is recovering since he is only 9 days out of surgery. We are working on the 'tone' in his right leg. His calf muscle is stiff right now. If we dont stretch it out, when he goes to walk its gonna hurt. We are also working on helping him stand without hyperextending his right leg. He likes to lock it so that he is stable. He is doing SO good. There is a long road ahead of us though. I just hope that he continues to be motivated and doesn't get discouraged.


Hanging out at Nana & Papa's playing with Mason



So we were able to leave the hospital for 6 hours!! We went home first to pack more clothes for another week. Leo (our cat) was so happy to see Blake. I know he misses us. Blake liked being home, but was very frustrated because he couldn't move around like he wanted to. We then went to my parents for dinner. We tried ordering chinese but they were closed. So we got Arby's! Yum yum. Blake seemed to enjoy his dinner, a lot better than hospital food. :) We got back to the hospital a little past 9 and were able to watch the fireworks from the window. It was really beautiful seeing all the fireworks going off across the city skyline. Blake liked watching the "boom booms" a lot. Once they were over we all went to bed. It was a pretty good 4th I think.





Heading back to the hospital...



Friday July 3, 2009

Wow our daily schedule sure has changed. We had Ocupational Therapy this morning at 9:30, and that ended at 10:30. We had a nap from 11-12:30. Lunch from 12:30-1. At 1 we had Speech Therapy then right into Physical Therapy. Speech followed up at 2, then right into Music Therapy. Finally we were done for the day. All of our visitors are due after 5 tonight. We are doing really well. Im extremely proud of how well Blake is doing!

Mon June 28-Thurs July 2, 2009

Monday-We had a pretty good day-well we knew it was gonna be a waiting day. We were still waiting on Pathology results. Blake was trying to walk more and more. We held him up and he started moving his leg to walk. All the nurses were amazed. He was not gonna let anything keep him down. He is truly a fighter.

Tuesday-We had our intro to Physical Therapy, Occupational Therapy and Speech Therapy. They each came up to talk to us. We did our best to be patient waiting for the results. They day seemed to creep by. We were told that we would find something out, so it was a long day of waiting. Later that night Dr. Nightingale came by to give us path's report. It was confusing and overwhelming and she couldn't really explain it all. We went to bed with heavy shoulders, wondering what the next day would hold. We needed Dr. Shore to explain it.

Wednesday-We went to the gym for Physical Therapy and then Speech came to do an evaluation on Blake's comprehension. While we were down in the rehab gym we missed Dr. Shore. We didn't realize this until 6 at night. All day we had been waiting for his visit. So needles to say we were getting frustrated. We just wanted to know what the pathology results meant. Another long night.

Thurs-Dr. Shore came by and let us know that as of right now there is NO NAME for the tumor blake has. Right now all we really need to know is that it is low grade, level 1, and its a slow growing tumor. He said that for now surgery was the only treatment, and that our plan is for Blake to go through rehab. We were moved up to the 5th floor, tower s, room 15. We are very happy that they moved us to rehab. Blake is going to be getting a lot of intense therapy. They sent the pathology results out for a second opinion. It would be another long wait-at least we knew we would be staying off 4th floor-oncology/hemotology. So good news is how we took it.