Sunday June 28, 2009

Hanging out in our room

Blake trying to stand and jump

We had a lot of visitors!! Blake was really awake and alert. He was eating tons of food. :) My mom and Meg brought us up groceries. They brought me a bag of goodies and they had used tissue paper. Megan wadded the tissue paper up to make a ball. I was helping blake stand up-megan grabbed his leg and made him kick the tissue paper ball. He thought this was so funny. He was laughing and saying more...more. Then out of the blue he raised his leg and kicked that ball. I almost passed out. I was so shocked. He was not able to move his right side hardly at all after surgery and all of a sudden he is kicking a ball. OMG!! It was the happiest moment. We had a great day!

playing cars...

Kirsten in Blake's gown lol

Thurs June 25, 2009

Surgery day. At 7:15am they came to get Blake for his MRI. My mom and dad and grandparents were here. We all walked down the hallway till we couldn't go any further. They sent my family to the waiting room, and then after kissing our baby, we too were sent to the MRI waiting room. They told us it would be about 1 1/2 to 2 hour wait. We met Dr. Shore from Hemotology/Oncology. Then finally we were able to see Blake. Since Dr. Hornig was still in surgery with another patient, they sent us back to our room to wait. I was happy to spend some more time with Blake. An hour or so later the anethesialogists were here to get Blake ready for surgery. We walked down and sat in the prep room till Dr. Hornig came to talk to us. He let us know that the tumor was deep and very large. He said he was going to be conservative with removing the deep parts. We were scared. I still remember his face as he was telling us-the look of seriousnous and he told us factually not misleading or trying to give us false hope. We gave Blake kisses goodbye and walked down to meet our family in the surgery waiting room. We had a long wait ahead of us. 4 hours atleast. I was so scared. I couldnt eat, it was consuming me. I have such a great support team. The only thing that held me together during our long wait-was our amazing family and friends. We had so many visitors come up that the time seemed to go by quickly. I honestly dont know what I would have done without them. Blake's surgery started at 1:15 pm and he was done with surgery at 5:15pm. We weren't able to see him till closer to 7:30pm. We all went to the PICU to wait for the nurses to call us back. I went back first, and thats when everything caught up to me. I was going on 2 hours of sleep, no food, and I felt like I was going to pass out. After seeing Blake for 5 min I had to leave to go back to the waiting room to eat something. I ate 2 pieces of pizza was given a cup of ice chips and a cool washcloth. Three nurses and a doctor came to check on me. I kept tellin them I was ok. Once the color was back in my face everyone took turns going back to see Blake. One of the first things he said to me was "thank you mama thank you". This was a big deal because prior to surgery he never put words together. I almost cried. I was so relieved to see that he was still 'Blake'.

June 24, 2009

Today started off like all other days. Woke up, ate breakfast, got dressed, and went to school. (Blake goes to the school I work at.) I had an appointment to see his pediatrician at 1:45pm. We went to the appointment and Dr. Martin immediately said she would like us to go to Children's Mercy downtown for a CT. I asked if I could take him after I got off work at 6pm, she said that would be ok. We headed back to school, on our way she called my phone and said to be at Children's Mercy by 5pm so Radiology could look at the results. This had me concerned. I got back to school and waited to find out if they had someone to cover my class and what not. And after only 15 minutes they were sending me out the door. Before I could even think anything through I was headed to the Children's Mercy ER. Dr. Martin had called ahead for me so our wait wouldn't be so long. We arrived around 2:45, and were back in our ER room by 3:15. Phil arrived around 3:30, and soon after they took Blake back for his CT. For the CT they needed him to lay completely still-not an easy thing for a 2yr old to do. Luckily he hadn't had much of a nap, due to the doctors appointment, and Phil was able to help get him to sleep. He slept through the whole thing, not moving once. We returned back to the ER room, and within an hour Dr. Hornig came in and was evaluating Blake. At this time we still did not know the results from the CT. Dr. Hornig (our amazing neurosurgeon)and the head doc from radiology asked if we had heard the results. We said no, and he asked if we cared if he told us. We didn't care who told us-we just wanted to know. He then let us know that Blake had a very large tumor on his brain and that they would be doing surgery tommorow. I cant even describe the feeling I had. I was completely shocked and numb. They then went on to tell us they ordered an MRI to look at the tumor in depth. There was a lot of phone calls being made to figure out if they were going to do the MRI that night or the next morning. After much waiting for us and a lot of phone calls for them, they decided to wait and do it all on Thurs. We hung out in the ER room till 9pm. At that point we were admitted to 2 Henson room 20. As soon as we were up there Phil left to go home and get our stuff. There really was no time for us to process what was about to happen. My sister and brother-in-law came up with my niece and hung out till 10:30 or so. It was nice to have a distraction while Phil was gone. My best friend Christian came up later that night and hung out till Phil arrived back at the hospital. We tried to get sleep-I only was able to get 2 hours. How can you sleep the night before you know your baby is going into surgery-brain surgery at that. The night crept by.





Blake was checking out his hospital crib



Poor kid didnt get dinner since we were in the ER for so long-so the nurse brought some snacks-Jello was the only thing Blake wanted to eat



Aunt Mimi and Blake







Playing with Kirsten locked inside the crib

Locked in his crib

Wed 6.15.09 through Sun 6.19.09

Hey everyone! Sorry I haven't made an update-I am having a hard time finding internet. We dont have internet at home-yet...hopefully we will figure something out. :) Ok so BIG news!! Blake moved his right arm on Wed at therapy!!!! YEAH!!! I almost cried. It was so exciting. The therapists had his left hand in a 'mit' and were telling him to pop the bubbles with righty. He raised his right arm and you can tell its hard for him to do-but he is trying his best! I am so proud of him. We stopped by UHDS after therapy so we could see all of our friends. I felt like a rockstar walking in and being ambushed by all my kids!! I miss them all SO much! Thursday we had a nice relaxing day, Friday was another day of therapy. We also went to Childrens Mercy and had the nonskid rubber sole removed from the bottom of his brace. Man what a difference that made with putting on his shoes! I really wish I would have know that came off before we did our shoe hunt. Oh well. :p Saturday we went shoe shopping with Christian! I was looking for a pair of 'easy' slip on shoes for therapy. The back of the converse arent very stiff, so they can be a pain to put on. I ended up getting 1 pair of DC-skater shoes, they are nice and wide so they are easy to put on and off. Now that the brace is off I didnt have to buy 2 pairs. However, he still has to wear 2 differnt sizes when he is wearing his converse. Sat night we were invited over to the Reichenberger's. We had dinner and the kids all played together. It was really nice to get out of the house for a little while. We had a lot of fun. Today we all went with Christian to her mom's house to go swimming. Blake had a blast. He sure does love bein at the pool. We did learn that he HATES the water slide. Lol. Christian held him as she went down it and he was not impressed. It was so funny. We are all doing well. Still trying to get used to the schedule. We have our 'First Steps' meeting this coming week. I will try to update you all soon! Thanks for all your support! We love and miss you all!!!

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!