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.

Fri June 26 & Sat June 27, 2009

Friday morning we had our 2nd MRI. They took him down around 10. The nurses told us that it would be an hour or so before he would be done. When we left our room to go eat we found out that we had visitors. Sarah and Dorthy were waiting for us. A few minutes later my parents showed up. So we all went down to the Orbit cafateria and ate lunch together. After lunch we came back to see Blake. He was doing good. We all hung out waiting for the MRI results. Our surgeon was in surgery all day so we would have to wait till Sat. Blake was able to eat his first 'real' meal. We were so excited to see him already doing so well. We had lots of visitors. Blake was so happy to see everyone. The hardest thing was the whole rotating visitors-we were only allowed to have 2 people in our PICU room. So phil and I traded turns going to the waiting room so friends could visit.

Saturday went by slow. Blake was more alert and eating well. Finally around 3:00pm they told us we would be moving back to 2 Henson. I was so excited. Sleeping in the PICU was a challenge. We had 1 recliner in the room-that was it. It was a small room, so phil slept in the waiting room. They had some pull out beds. I slept beside Blake in the recliner. It was hard to sleep because the nurses had to check him every couple hours. I ended up just cat napping. Once they moved us to 2 Henson room 12 I was happy. It had a twin bed and our own bathroom!! PICU we didnt have anything. Being able to have a mini fridge and our own toilet and SHOWER was great! We finally were able to unpack and settle in.