Friday May 27, 2011

I totally meant to post yesterday. However, with the way my week is going I am lucky to get on here today.

Ok, so last post Blake's port wasn't working. We went back to Children's Mercy yesterday and they attempted again. With it still not working we were sent to Radiology for a chest scan. They pushed a liquid into his port line to see if they could see the obstruction. Oddly enough, there was nothing in his line. The radiologist thinks that scar tissue has formed at the end of his line, causing a trap door.  They can push fluids in his port but when they try to draw blood, nothing. So basically his port is useless. So here is the good news, next week our oncology nurse is going to schedule a port removal! YIPEE!! No more port! This is great news, although I have had my concern about 'what if the tumor starts to grow?'. Basically though, his port is no longer useful, so we would have to replace it anyway. If his tumor would, God forbid, start growing we would just put in another port. So all in all-I am one happy mama!! :) I honestly think its his bodies way of saying 'Hey get this thing out of me-Im all better!' lol.

My tough guy!

Today was a rough one for lil man. We were headed down the stairs to go to therapy and Blake was half way down our basement stairs when he fell. I was several steps behind him, with my arms full of everything-therapy bag, art for our show June 2, laptop bag, and purse. So as I am following behind him I totally couldnt get to him fast enough. When he fell-it looked REALLY bad. I thought for sure we were gonna end up going to the ER. The down side to having right sided hemiparisis-he cant catch himself. When I picked him up off the basement floor he was crying pretty hard. For those of you who dont know him very well-he is a tough kid-he falls a lot and most of the time he gets up and keeps going without any tears. So since he was crying pretty hard, I was scared. I yelled at Phil-to let him know what happened-and then sat in our basement holding Blake, waiting for him to let me know he was ok. Once he was a little less upset we looked him over. The poor kid had a 'sandpaper' burn on his neck from the steps, a bump on his head, and a knot on his shin. Not nearly as bad as I though it was gonna be-but nonetheless a painful fall. We were late getting to therapy, but the time I spent making him feel better was totally worth being late for. He went to therapy and did his work, he was a little crabby-but did pretty well with group, pt and speech. He missed his OT apt cuz it was first. Thats okay though. When we finally made it back home-he crashed out hard. I am so glad he is ok.

Poor kiddo-rough day of falling, getting poked and having tegaderm torn on and off his tender skin.

Wed, May 25, 2011



right before the temper tantrum set in...

Life sure does have a funny sense of humor. We had quite the day today. We started the day off with Blake waking up at 6:30. Way earlier than his normal '7:45 wake up call'. I should have known at that point it was going to be a long day. lol So we got ready, Blake only wanted his 'pink' milk (strawberry) for breakfast. He normally has a big bowl of cereal-boogers; ie crunch berries. He has quite the imagination these days. lol We headed to Children's Mercy for his 1st dentist apt. We talked about it for 2 days, I thought he would do great since he loves having his teeth brushed. When we get there I realize I don't have a 'dental' card. Ugh. So after a few phone calls to our insurance company, Phil, and finally our normal dentist, I am able to give the receptionist enough info. We get called back, and as soon as we are in the room Blake has a melt down. Crying and not cooperating. I was a little stressed. I didn't know who this kid was-he was not acting like the Blake I knew. So after the assistant left the room, I calmed Blake down and we had a little talk. It actually worked. Yippee!! So he cooperated with the dentist. She checked out his teeth-NO CAVITIES!! I was so happy. She had just finished a fluoride treatment when we find out that there is a tornado warning, we all have to go to the stairwell in the basement of Children's Mercy. Oh boy! So down we go with all the other patients. We are all crowded in the stairwell and Blake decides he wants Mac 'n Cheese. Oh no! Let the 2nd temper tantrum of the day begin. He is crying and I am trying my best to calm him down, thank god for technology. I pulled out my phone and let him play a few games. Phew. 10 min later, the tears are back. lol We were in the stairwell for almost an hour. Finally a nurse came down with a basket of Teddy Grahams and Gold Fish. THANK YOU!! That kept Blake quiet for a few more minutes. Again-this is NOT like him. He is normally so good. Must be the weather! lol Ok so we finally get the okay to go back to our apt. We find out that we are done with our apt. 

However, now have to stop by the oncology clinic for a port flush-which I had NO idea was even scheduled for today. I thought for sure it would be quick, right?! So we check in and I apply numbing cream to his port. We go back to the waiting room and Blake is happy to be playing with the toys. Then the nurse actually gets to us pretty quick-a fast poke and he is ready to be flushed. Well, unfortunately Blake's port wont flush. Shoot! So they call in a medication that will dissolve the blood if its clogged in his line. In order to do this we have to wait 30 min for it to do what it does, then if it still doesn't flush we wait another 30. No flush-Blake's port isn't working. Aw man, and then to top it off Blake pees his pants. I have NOTHING with me-remember I thought this was going to be a quick dental apt. lol So the nurse finds a pair of undies and pants that fit Blake. I am SO grateful!! Also at this point I am starving because its already 2:30, so we run down to the cafeteria for a quick snack. When we get back just in time to do the whole process over again. Another hour passes. Still NOT flushing. There is talk about us getting pictures of his chest. Due to the time we cant get it done today so our nurse Paige decides to de-access him and let us go home, we have to return tomorrow to get more tests done. His port still isn't working. I am praying that tomorrow we will figure out what is going on. I guess they are going to flush some type of fluid that will show up on x-ray.

I probably shouldn't be complaining, but sometimes a girl just needs to vent about her bad day! lol Thanks for letting me do that!

Ok so on a brighter note, I have been applying for financial assistance to help with some of the medical bills, Blake's braces, and to help with our trip to Houston in July. We received a call yesterday from an organization called 'Be Head Strong'. They sent us $500 in gift cards to Target. How great! A lot of the brain tumor/cancer organizations that I have applied to have stipulations that prevent them from helping 'glioma' tumor patients (havent found a reason yet). Which happens to be the type of tumor Blake has. Others are not offering help to new applicants due to the economy. I know God has a plan for us, and wont give us anything we cant handle. My faith remains strong, although I do have my days when I don't know how it will all work out. Then I remember its all in HIS hands. I continue to look for a job that will work in conjunction with Blake's schedule. A friend of mine might need childcare for her daughter 3 days a week starting in August. So my fingers are crossed that it will work out. Until then, babysitting jobs are helping and Phil has been able to pick up some overtime at work. I will keep you guys posted on how tomorrow goes! Thanks for all your prayers for Blake and our family! xoxo

Monday May 16, 2011

"Fight for Blake"

May is Brain Tumor Awareness Month!! I have bracelets that say "Fight for Blake" on one side and "Catch Me Running" on the other. If anyone would like to show their support by purchasing a bracelet they are $5. I have 3 different sizes small(child) medium(adult) and large(Man Sized). Its an easy way to raise awareness! They are grey and lime green!





Blake continues to fight his brain tumor, he had his MRI a couple weeks ago, and everything continues to look stable! Thank you God!! If we can make it to one year with NO growth it would be a really great. Blake is doing fatastic! His birthday is approching and all he talks about is Batman and superheroes. lol So, I get to figure out how to make a 'Superhero' party. Last year we celebrated his birthday in Houston, so I am excited that this year we will be home for the celebration. His birthday is June 16, but due to fathers day being the 17 I have decided to have his party on the 25th. He is already super excited about his birthday.

Waiting for his numbing
cream to take effect.

Blake is doing great in school, he is on break from rehab since May 7th he got botox. He received 5 in his arm/thumb, 3 in his back and 2 in his leg. He was not happy about it. Its such a hard thing to watch your child go through something that is painful. Once the last injection was done I picked him up and held him-and he was fine within minutes. I love that he is a momma's boy! I know it will change soon, so im soaking it up while I can. His next MRI will be July 13th in Houston. I am so excited to go to Texas and see all of our family there. Phil gets to go with us this time-so that makes me really happy!





All the gear...



Dr. Rinaldi injecting his leg



Poor kiddo!





As many of you know my best friend started an organization called 'givingSOLO'. You can go to the website: http://www.givingsolo.org/ and check it out. We have our 1st event coming up June 2nd at The Gallery at 19 Below. They are hosting an Childrens Art Exhibit and Auction that will be benefiting SOLO. We are very excited. Blake has created a masterpiece for the show-and it is quite the masterpiece! I am gonna have a hard time seeing it go! Also, Phil and I are putting in some art as well. It is going to be such a fun night! Blake starts constraint camp June 6th. Its a 5 days a week camp-for 4 weeks. I am just praying the gas back and forth doesnt break us! We are due for another AFO apt at Children's Mercy to look into getting a new AFO for Blake's leg/foot. The boy just keeps growing. lol Lynne, his PT, said it might be time for Blake to get a new style of brace. That is exciting, because that means his leg is getting stronger! I keep praying that one day he wont need the brace anymore and he can walk like all the other kids-brace free!! Its funny to me the things I look forward to, new braces, Blake being accepted into PT and OT at school lol. I am so grateful for all the strides Blake has made this last year and I look forward to many more!!