Chance's Journey

2008-11-22T10:00:00.013-05:00

Chance's party was exciting, great, exhausting, I could go on forever. We had about 150 people there to yell 'SURPRISE!!!' when he walked in. There was so much going on, I know that I didn't get to talk to everyone and I'm sorry about that. If I missed you, thanks for coming. Here are some pictures to let you see the fun Chance had. Everytime I looked around for him, he had a huge smile on his face and was with a different group of people. I want to say thanks to the Assembly of God church for letting us use the Family Life Center for this 'shindig. The size of the building allowed us to have several different things going on at one time. It was great. For everyone that helped out, THANK YOU from the bottoms of our hearts. Chance was so happy!!!!!

The girls recycled the decorations. Looks like future designers!!

This is Justin. He is the husband of Chance's teacher from last year. He played the guitar for the kids for awhile and we did an awesome job!! We even did the Hokey Pokey which Chance picked up somewhere and has been singing alot lately. He also made a few of us big people get up infront of the kids and sing and do the motions to "I'm a little teapot". I hate getting in front of people but it was so fun. Thank you Justin!!

Look at that smile!! That was pretty much the look on his face all night.

After a very loud song of Happy Birthday, he blew out his candles. Notice the picture on the cake. He is still very much a Steeler's fan. The decorations were all black and yellow and football stuff.

Here is Big Barry with the pinata. Our stick broke and Bryan ran home to get a bat. Before he got back with it, the group decided just to tear the pinata apart and throw the candy. We also had a plastic bin FULL of candy. We threw it out into the crowd and it was gone in seconds....ok maybe it was minutes but not very many.

We had a moon bounce. Thanks Kathy and boys for letting us use it. I don't know how to turn the picture around on this blog so it is sideways.

This is a picture of Chance walking into the party. He was so overwhelmed and didn't know what to do. He thought we were taking food to a party that Quinton was at. He had absolutely no clue.

This is Blair giving Chance a big hug. Blair is one of Chance's favorite big kids.

We had about 50 people stay overnight. I really thought that with as much as the kids ran around and played, that they would be exhausted. That was not the case. At 2:30am, we still had kids running around and talking and just being kids.

We turned the lights back on at 6:30 and made them all get up to have breakfast and clean-up. They cleaned up their stuff, ate their breakfast, and got back to playing. I just don't know how they did it. I was so exhausted. We went home and slept until 3:00. I'm just too old for this kind of stuff. But, as Chance said - 'This was the best first sleepover ever, I can't wait for the next one.' (I don't think I can handle a next one!!!)

2008-11-12T17:10:00.003-05:00

Ok. First off, I know it has been awhile. Sorry about that but life is just chaotic.

It has been 3 months and 6 days since Chance's surgery. He still has not had any seizures!!! I think that that is amazing!!

Tomorrow is Chance's 10th birthday. He has had such a long and busy life in those 10 years. He can't wait to wake up in the morning and get his ears pulled. He talks non-stop about it. He is so worried that we are going to give him underwear for his birthday.

The sleep-over party is on Friday. I'm so scared. I can't believe that we have pulled this off!! We have 155 RSVPs and it is still a surprise to him. Half of the 155 is kids. I'll post an update on the party as soon as I am able to function on Saturday. I'm planning on not sleeping on Friday night.....just in case. When he walks into that room, he isn't going to know what to do.

Therapy is still progressing nicely. He continues to improve in his speech and actually pays attention to what he is saying. OT is still trying to get more movement out of his right hand.

Chance's name is now on AMBUCS which is the website for the bike we are trying to get him. The link is http://www.ambucs.com/amtryke-wish-list-grant-a-wish/?phpMyAdmin=5ccfcc52777b7aca5bb43e5100c847cd.

Check back later this weekend for an update on the craziness from Friday!!!!!

2008-09-29T22:00:00.006-04:00

I can finally load my pictures. These are from the football game where Quinton's coach let Chance lead the team onto the field and let him 'coach' from the sidelines.

Chance is progressing nicely. He continues with his speech, OT and PT. Great news with OT.....there is movement in Chance's left hand. This has NEVER before happened. The therapist stimulates his arm and hand and he is actually able to pick up small objects. He can't let them go yet, but with time, she is confident that it will happen. She feels that this surgery was probably the best thing that could have happened to his hand.

He got his new orthotics on Thursday....yellow cushions inside with black velcro. We found sneakers this weekend that are black and........yup.....yellow.

Tomorrow, we go for his follow-ups with Dr. Vining, Dr. Jallo and Heather. They are going to be so amazed with him.

I just have to say....I am SO GLAD that we went through with this surgery. Chance's last seizure was on August 4, 2008. That is 8 WEEKS AGO!!!! 2 months have passed and there hasn't been any seizure activity at all!! His speech is better, his attention span is better, his right fingers can move (with conscious effort), there isn't anything that I can say that I am not happy about. It has been an amazing journey.

We are still waiting for the bike wish to be posted. Hopefully, it will be out there soon.

That's all for now, thanks for checking up on Chance.

2008-09-14T08:17:00.004-04:00

Chance's first day at school went really good. They were all really surprised to see that he was in school so soon. I stayed with him most of the day to give the teachers a comfort level. After awhile with him, they could see that he is the same little boy that he was when he left in June. The only thing different about him is the scar on his head.

He brought homework home on Monday. He had to read a few sentences to me. He has never been able to say words correctly that begin with 'F'. One of his words was 'fish'. He read it the way he was used to which was more like 'shish'. I corrected him and now he is saying it the right way. All week has been like this with his speech. He says something the way he used to before surgery and we tell him how to say it and he is picking up how to say it. I am so amazed!!! Everyone that he talks to says how much clearer his speech is.

Quinton's first football game back after Chance came home was awesome. The coach asked Chance to lead the team out on the field. When it came time for the game, Chance was really nervous because he wasn't sure that he could run without falling. He had one coach on either side and they held his hands and they ran him out on the field with the whole team behind them. To me, it was such a beautiful sight. He also went out with the captains for the coin toss, shook hands with the other team and got to stand on the sidelines to 'coach' the kids. Quinton's team ended up winning the game. The kids came up to Chance afterwards and told him that it was all because of him that they won. Apparently, the coach told them to give it their all and play the game for him.

Chance made the front page of our local paper. The reporter asked him what he wanted for his birthday which is in November. He said 'a sleepover with 100 kids'. CRAZY!!!! But, we found a place that we can do it. The Family Life Center in Newport will be where we all will be on November 14 to see if we can get the 'sleepover of all sleepovers'. We are going to try to keep it a secret so if you know Chance and you read this, please don't tell him. We hope to have his bike there to give to him too. Here's hoping we can get one in that time.

Chance has started outpatient therapy at Rehab Options in Carlisle. I really like this place. The therapists are great with him. He is working hard so far. He has speech and OT on Tuesdays and speech and PT on Thursdays.

His new orthotics have come in so we will be going to pick them up next week. That will be one more thing that he has that will be black and yellow.

2008-08-30T19:58:00.008-04:00

We made it home!! It feels so good to be here.

When we got home yesterday, there was a nice crowd down at the midget football field waiting for Chance. It was very nice. He seemed so shy at first and then started working his way around to everyone. He even went out on the field with a group of the boys and played some football.

Today has been a bit hectic. We went school shopping and till we got home, we were just tired. Chance's mouth hasn't stopped since he woke up this morning. It is nice that he is back to his old self but we think that Dr. Jallo added a couple of amps to his talking ability and maybe a giggle box with a snort machine. We want to ask him about that when we go back next month for his check-up.

Chance starts school on Tuesday and I get to go with him. It will be good to see him meeting up with all of his friends from school. He missed everyone so much. Wednesday afternoon, we have appointments set up with a rehab in Carlisle. He will have to go for outpatient PT, OT and speech for a couple of months. He still needs to get a little bit stronger, but he is almost back to where he was with abilities from before the surgery. He is still a happy-go-lucky little kid. The only thing that he is afraid of, is that his friends are going to be scared of his scar. Somehow, we'll work through that just like everything else that we have gotten through.

Even with the heartwrenching week and a half after surgery, seeing the way Chance is now, how happy he is, we would choose to do this surgery again. Monday morning will be 4 weeks since Chance has had a seizure and he is glad they are gone.

Another thing that we realized today - we picked up Chance's new prescriptions. He is on the same meds and will stay on them for at least two years or maybe for life, we don't know yet. But, we noticed that his dosage was different. He used to take 7.5 ml of Keppra twice a day and 450 mg of Trileptal twice a day. His Keppra dosage has been changed to 1.5 ml twice a day. I called the hospital to check and make sure that was right. I thought for sure that someone had made a mistake and thought the 7 was a 1. They verified for me that nope, it is supposed to be 1.5 now, not 7.5. The whole time he was in the hospital, they have been giving him 1.5 and still, no seizures. I take that as another very good sign.

I am going to eventually figure out why I can't post pictures from my computer and you all will be able to see Chance in his water battle, trying out the split treadmill and his welcome home pictures. Quinton has a football game tomorrow and Chance just can't wait to go. It will be the first one for him to see this year. He said that he is going to cheer for our team. I don't know though. Historically, Chance has always cheered for whatever team Quinton's team was playing. We'll see.

2008-08-28T13:21:00.006-04:00

Well, we have one more day here. We just can't wait to get home.

Chance got to pick out new braces for his feet and new splints for his arm/hand. I'll give you all one guess as to what colors he picked......yup, you're right. His braces for his feet have yellow pads, black velcro and a camo strap. His day splint is going to be black with yellow velcro and his night splint has yellow and black velcro straps with a Steelers logo in the center.

Tomorrow is the BIG day!! I keep trying to get him to go to sleep and he won't. He is working on keeping his night time splint on his arm so that he gets a sticker for the night. If he keeps it on tonight, he will have met his goal and gets a gift card to Best Buy. This morning, it somehow fell off. Bryan kept checking it all night and it was on as of 5:00 am. When Chance woke up, he woke up Bryan and was upset because his splint wasn't on. So, we gave him the sticker because we felt that he didn't take it off on purpose.

He said alot of goodbyes tonight. It is sad to leave these people and the friends that he has made, but we just can't wait to get back to Perry County.

Chance told Bryan and me that when we get home, we have to go back to our room because alot of people have missed him and they were going to come see him. Since there are going to be so many people coming to see him and he is going to be so busy, we need to be in our room so that there is room for all of his 'people' to sit. And he doesn't want us to get in the way. He is such a funny kid.

We're working on getting him one of those bikes that he was riding so watch out Newport. You may have a new crazy driver in town (or close to it). I have some new pictures that we will put out after we are home. Miss you all.......only one more sleep!! !!

2008-08-26T21:19:00.003-04:00

Hi All!!

Not too much new to tell you about. Chance was kept very busy today. For the last few days, he hasn't even needed to take a nap in the middle of the afternoon. I just don't know where he gets the energy. He is in constant motion from the time he wakes up until the time he goes to bed. And talk!!!! Non stop. And I mean non stop. (but I'll take that over not talking anyday)

We're just gearing up to come home. We're trying to get Chance to run. It's kind of funny because you always hear - Don't run in the hall. Now I'm hearing - Run Chance, run!! He's afraid of falling so he won't. We hope to have him there or close to there before we go home. Every day he gets to ride the bike. He LOVES it! That is one thing that we are going to miss. Seeing that look on his face when he is riding.

He gets to leave his wheelchair out in the hall by his room tomorrow. He doesn't even need to use it to go from floor to floor. Everyone down here gives him a hard time about being a Steeler's fan. The speech therapist and him made a sign for his 'parking spot' that has a picture of Big Ben. We have two of them just in case 'something' happens to it. You never know with the jokesters down here. The yellow/gold could suddenly turn purple. Chance will have a cow.

Chance is sleeping already. I can't believe it. I'm going to go to bed early tonight. Hopefully, he doesn't wake up again at 6:00. I know that when I am working, I get up earlier than that but man, it's just different. Talk to you all later.

2008-08-25T21:54:00.007-04:00

Apparently, Pappy Joe and Chance had a really good weekend together. Everyone was talking about the mischief the two of them were up to and how they giggled all weekend.

This morning, Chance tried out the split treadmill. He did really good on it too. It has two tracks instead of one and each track can go different speeds. They put little infrared lights on him and that enabled them to track his movements. When he was done, he got to see himself in a stick figure form on the computer.

They had a water fight this evening outside. The kids had a choice, do you want a gown to cover your clothes or not? Chance, being the brave soul that he is chose not to wear a gown. They used big syringes filled with water. He was soaked when they were done. His wheelchair was still dripping water when we got back to his room. I took him to the playroom and left for 10 minutes and when I came back, they were having a beanbag battle. The people that play with these kids are great. They are always doing something for everyone. Everyone is included regardless of ability. They make you able to participate. They are talking about doing flashlight tag tomorrow!!!! When you get off of the elevator, you can hear the whole room laughing. It makes the heart warm.

Dr. Vining and Diana Pillas came to check on him today too. They are very pleased with his progress. They think that he looks brighter than before surgery and that his speech is clearer too.

He got his stiches out today. There were 9 stiches. He said they tickled when they were taken out. He doesn't have anything left to be taken out now. YEAH!!!

He has a few bald spots in the back of his head. They are from the surgery where the posts were holding his head. We hope that his hair will grow back there soon. His incision looks great.

Our days here are very full. He sees the speech therapist twice, the occupational therapist twice and the physical therapist twice (at least). There are also other activities going on all of the time and the kids have such a great time. Chance even had a chance to skip one of his PT sessions today because of working on the split treadmill but he chose to go to all of his PT sessions (the harder he works, the stronger he gets, the sooner he goes home is the philosophy.)

Watch out Coach Rick. I told you on Sunday that Chance was only walking, not running yet. The therapist told me that alot can happen in one week. Who knows???

2008-08-22T21:36:00.006-04:00

Ok. Sorry about not putting a note out last night. I don't have an account at KKI yet to hook the computer up. And, on top of that, we are moving Dee to college tomorrow so there won't be anymore pictures until we come home and I can download them to my computer at home. She was gracious enough to let me use her computer before she went and that means the world to me.....Thanks Dee!! I will try to update next week reguarly.

Now, on to the important stuff...........Quinton and Dee, this video is for you. You guys have tried to help Chance do this......This is something that he has NEVER been able to do, even with help. Check it out!!!!

Beth would be so proud!!! (that is one of his previous PTs)

The next huge thing to tell you all.......Chance received his expected release date...are you ready for this????? 8/29/08!!!!!! That is 23 days from having major brain surgery. Chance gets to come home next Friday!!!! How awesome is that??

His swelling is going down, drastically. I can't wait to see him on Sunday when I go back down. That is the only thing that Chance is worried about, his friends seeing his 'wave' as he calls it. He is proud of his scar though.

We had a family meeting today at KKI. This is where all of the people working with Chance get together and tell us how he is doing and also where we were told about the release date. They all had very nice and encouraging things to say about him.

Physical Therapy is where Chance got to ride the bike. He rode that thing for 15 to 20 minutes and then the therapist wanted him to walk. He started down the hall and headed for the door. The therapist told him, 'No, that's the stairs' and he said, 'I want to do the stairs'. She said ok, but that is very agressive for him considering he spent all that time on the bike just riding and riding in circles. He went up one flight of stairs and back down again with no problems!!! Needless to say, she was very impressed with him.

The speech therapist said that she just can't believe that Chance is talking like he is. He talks the same as he did before surgery, it is just a bit higher in pitch. The left side of the brain controls speech and that is the side that was removed. She said that she has never had a kid that has had the left side removed talking as soon and as well as him. Amazing!!

They all feel that he is a hard worker and very determined. (note to teachers.....remember this)

Before surgery, Chance couldn't follow 3 step directions and sometimes, he had problems with 2 step directions. Well, now he can do 2 and 3 steps!! I don't know if all of this has to do with the surgery, but something definitely clicked.

They had told us before surgery, that with the left side gone, his right side would be able to concentrate more and be able to relax a little bit. Well, they were once again, telling us something that we just weren't sure was true. I'm the type that has to see to believe and I'm a true believer now.

Chance also is a very early riser. He is up no later than 6:30 and wants a snack because breakfast doesn't come until 7:30. I think he is eating more now that he did before. Maybe that's because it is more spread out. It seems like every two hours he's telling us that his belly is hungry. Those snack packs that everyone sent down have come in handy. I now keep a supply in his nightstand so that he has them any time he wants. I have also been known to take them to therapy to help him get through the session (we wouldn't want him to be famished!!).

His emotions are coming back too. He is extremely happy in the morning, every morning. Bryan had him giggling and snorting this morning. The two of them together are a handful. They aggitate each other and it is kinda funny to see.

Chance had the last of his staples removed today. I will also have a picture of this, if I can get it to work tomorrow.

Our friends that Quinton is staying with told me that he has been excellent for them. Imagine that!! I'm really proud of him too.

Well, I have an early morning and a long day ahead of me so I'm going to go. I hope everyone has had a good week and hope you all have a wonderful weekend. There won't be an update tomorrow but I'll try to put one out on Sunday.

2008-08-20T22:46:00.008-04:00

On Chance's last day at JHH, he got to play a PS2 game with the therapists, Matt and Francesca. Here is a video and picture of them. I didn't know that PS2 made interactive games. It was funny to see, if you didn't know that he was interacting with the tv, it looked like he was swatting at flies.
(For some reason, when I put a video out here, it shows up twice. I don't know why. Sorry about that)

Hanging out in his new room with all the necessary comforts(for him) - Steeler's jersey, Steeler's pajama pants, Steeler's blanket and a few animals. Man, what I wouldn't give to just hang out like that!!! Although, I do believe that he deserves it more.

This is the PT Heather. She is fitting him for a new temporary orthotic on his right leg.

They have us taking Chance everywhere we go in the wheelchair so that he doesn't get tired out before they get him to do some actual work. We're also hoping that it will cut down on the incidents of his headaches. When he has a headache, he can't stand to have any kind of lights on. Right now, his pupils are really dilated. We don't know if that will change or not, but I sure hope so. This doesn't help with the headaches.

Chance had a hearing test today. Good news......his hearing is within normal range for high, medium and low frequencies. Yeah....the surgery didn't affect his hearing.

He told us that he was going to work really really hard so that we could all go home soon. I'm holding him to it and pushing him when I can.

He gets to go on a field trip on Saturday. They are going to go to the Science Museum and his Pappy Joe is going to go along. Deanna goes off to college this weekend and I will be going home on Friday so that I can take her out on Saturday morning. Four hours out and four hours back. Yuck! But that's ok. It's the beginning of a new chapter for her too.

Chance had speech therapy today and the therapist asked him if he knew where he was. He told her, yeah, the hospital. She asked him if he knew why he was in the hospital, and he told her, yeah, they cut my head. She asked him if he knew why they cut his head, and he told her, Yeah, seizures suck. Plainly said. I agree.

A few of my coworkers came down to visit. With them, they brought lots of goodies for Chance. Thank you everyone, he loved everything that he got. The activity stuff will help to fill some of the hours that we don't know what else to do. From the looks of things, Chance has very busy days through the week with lots of hard work. Let's hope he can keep up and get stronger quick.

Thinking of everyone at home and missing you all. Hope to see you soon....Oh yeah, I will see some of you. As long as Chance is doing good, I'll be at Quinton's football game on Sunday. See you then.

2008-08-19T19:34:00.002-04:00

Hi everyone. Chance moved to Kennedy Krieger Institute today so there aren't any updates to make. Most of the day was spent moving, unpacking and getting oriented to our new surroundings. From the looks of things, tomorrow brings lots of work. I'll let you all know how he makes out.

Thanks for all the thougths and prayers and well wishes. I truly believe they have a lot to do with how well Chance is doing.

I'll talk to you all later.

2008-08-18T20:48:00.009-04:00

This is a video of Chance walking down the hall with his daddy today. Awesome!!! Less than two weeks after having half of his brain removed, this is what he can do!!

Today was an awesome day!!

Chance, Bryan and I got to go downstairs for breakfast this morning. It was so nice to get him out of the room for different scenery.

Half of his staples were removed. He had 92 staples total. Now there are 46. When they began, Chance said 'This is easy!' Till they got to the back of his head where the swelling is, he wasn't too happy. Hopefully, when the other ones come out, it won't hurt so bad in the back.

We had Chance walking several times today. He worked really hard for his therapists. They actually got him to walk the whole way down the steps to the playdeck, played some games, kicked some balls, and walked back up the steps and to his room. We also took him on 4 wheelchair rides all around the hospital.

Dr. Jallo came in today and is happy with the way Chance is progressing. The swelling is to be expected. It should gradually move down and out of his body. Chance saw himself for the first time in the mirror. I think it kinda freaked him out. Now, he won't go into the bathroom because he doesn't want to see it. Bryan hung a towel over the mirror when I gave Chance a shower. Chance is going to Kennedy Krieger Institute tomorrow to start his rehab. The way things are going, we may not be there long!!! They think he may be the fastest in and out ever.

You know, back when we started talking about this surgery (three years ago) and up until a few days ago. We didn't know for sure whether we believed the doctors. They have continuously told us how kids like Chance that are already hemiplegics, bounce back after this surgery better than kids that aren't hemiplegic. As a parent, you want to believe that the doctor knows what they are talking about. You are putting your child's future in their hands. But, until you actually see that your child is doing even better than what the doctors expected, you truly, deep down aren't sure whether you believe them. The feeling that we have right now is unbelievable, words can't even describe it. I have nothing but the utmost respect for what these wonderful people have done for Chance. They have opened up a whole new world for him and I will forever be grateful. This gratitude goes for everyone that has had any interaction with Chance during his stay.

This is a picture of nurse Laura. She has had Chance for several days and is awesome. We won't go into detail of why she holds a special place for us, just know that she does.

I also want to thank Jane S. from the Hemispherectomy Foundation. She has been here several times to offer support, bring us goodies, sit with Chance so I could get some Motrin and more. Tonight, she brought me a birthday cake. Talk about good!! We were able to share it with another family down the hall. It was enjoyed by all. She pays attention to detail without you even realizing it. For anyone that has to go through this experience, she is a good person to have by your side and guide you through the process, offer assistance and just be there to listen when you need it. Thank you Jane!!! Here is the cake she brought....
And finally, my wonderful kids had these beautiful flowers delivered. Aren't they pretty??

2008-08-17T20:01:00.005-04:00

Not too much to report today. We were going to go for breakfast this morning but before we left, Chance got one of his headaches and we had to stay in the room. This is a picture of him as we were getting ready to go. His hospital breakfast had come and there was a donut on the plate. He got really excited and wanted to eat it. Well, before when he was a big eater, he took big bites. In all of the excitement, I think he forgot that he can't take those big bites now and that is what caused the headache. He is posing in this picture with Quinton the bear and a new monkey friend he just got. Thank you Alex and Abby Shaffer, he LOVES it.

Nana and Dave came for a visit today. We had a nice visit. While they were here, the PT girl came and Chance did NOT want to walk. After she left, he wanted a chocolate milk and I told him if he wanted it, he had to go get it. Wouldn't you know, we had no problem getting him to walk down the hall to the fridge.

He is feeling better and eating more. I see more of his devilishness coming out too. I love to see that.

Well, wish us luck tomorrow. We're going to try and go to breakfast again. See you all later.

2008-08-16T20:05:00.009-04:00

Chance had lots of visitors today. Bridget and Justin Lee (Chance's teacher for the last couple of years), Gram, Annie, Dee and Quinton. He showed them all how he walks and took them down to the playroom to look at the fish. We all had a very nice visit. It was so nice to see some familiar faces from home. Bryan and I got to spend alittle bit of one-on-one time with Quinton too and that was nice.

Annie brought a whole bunch of goodies from her coworkers at the Perry CAO. Chance actually got into opening the presents and was smiling.

Gram brought a GIANT poster from the football association. It was signed by all of the players, cheerleaders, coaches and some other friends. We're keeping it in his room and when he goes to rehab, we'll hang it on the wall to remind him his friends are waiting for him to come home.

Kim Wood made us an awesome meal. Lasagna, italian bread and chocolate cake with peanut butter icing.,..,.absolutely delicious. Thanks a bunch!!!

We are still watching the swelling. Hopefully, it goes down. No throwing up, and no gagging. He's eating a little bit more and we found out that we are allowed to take him off of the floor so we promised him that we would take him to the cafeteria for breakfast tomorrow. He is still getting a lot of headaches so we're giving him tylenol regularly with the occasional stronger stuff.

He also just got his last IV out. YEAH!!!

Hope all is well with everyone and we miss you all.

2008-08-15T09:41:00.008-04:00

Chance is staying at Johns Hopkins until either Monday or Tuesday because of the swelling of his head. It's better for him to stay here than move him over the KKI and then back here if his head keeps swelling. He went for a cat scan this morning. They told us tonight that this type of swelling is pretty typical for a kid that had as much removed as he did. They explained to us about shunts and the possibility of Chance needing one. This is a permanent tube that is inserted to drain fluid from the brain down to another cavity. It is still too early to really be talking about that in depth or have to make decisions. The swelling usually goes down in a week. We will see. I don't know if you can see the swelling here, but his ear doesn't stick out anymore. It touches his head.
For therapy today, Chance went outside to the playdeck. We took his football along to throw. He walked the whole way from his room and down the steps. For a kid that has been in bed for as long as him, this was a major feat! Him and the therapists tossed the football for awhile and then played bean bag tic tac toe.

He refused to take his pain medicine (even Tylenol) since yesterday evening when he threw up. I finally talked him into taking the Tylenol but it just wasn't enough. So, he got a dose of the powerful stuff this evening and is finally resting.

They have switched just about all of his medicines to pill form because the liquid makes him gag. He hasn't thrown up anything today.

His eating is getting better and better everyday. He even ate 1/3 of a fresh pear today. I'm going to get him some more fresh fruit. He's drinking more too. If he keeps up at this pace, they will take the IV out. That will give him some more freedom.

Daddy was being bad today and Chance was counting to 5 on his fingers just like I do to him. It was the cutest thing.

Uncle Tom, Aunt Tina and Rachel sent him a basket of snacks. He raised his eyebrows when I showed him the cookies and wanted to know if he could have one. I said "Of course!!" Well, he ate 1/2 of the cookie and was done. It's a start.

He also got a bouquet of flowers with a balloon and bear on it from his orthodontist's office - Dr. Apiscella in Mechanicsburg. Right now he is in his bed and has his Steeler's bear, the new bear and his cow all in a row, under the blanket. Usually he picks one to hold onto and the other goes on his other side. Tonight, they are all there under his arm.

Not too much else to report for today except for the fact that Bryan and I just don't know what to do with ourselves. We have magazines, tv, games - plenty of stuff to do, but after awhile, you just can't do it anymore. I can't wait to get to the point where we don't have time to read a magazine or play a game or watch our show on tv because Chance's mouth is running, he wants to play or go somewhere. I know that it will happen, I just have to be patient.

2008-08-14T20:38:00.005-04:00

Today was a busy day.

A dog visited today from pet therapy. His name was Jason. Jason got on the bed and Chance got to pet him.

Chance walked the whole way around the circle today holding his daddy's hand. Then he got in his wheelchair and went to the playroom. We watched the fish for awhile and then went for a ride.
Later in the afternoon, clowns came to the floor. Chance decided at the last minute that he wanted to go see them and when we got to the playroom, he got to carry the torch in (for the Olympics). I actually saw spontaneous smiles and clapping. This is something that is few and far between right now. Cris Hall and I were talking last night and he said that his daughter, Jessie is the same way. It's almost like they don't have many emotions right now. Jessie's are starting to come back so that gives me hope. (By the way Cris, Chance got his package today. Thanks)

Every time Chance tries to eat or take medicine, we have to fight a throw up spell. He has learned to focus on my voice and take deep breaths instead of focusing on the feeling in his belly. So far today, he has NOT thrown up. Whew!!! The amounts that he is eating is getting better with each meal. For breakfast, he probably had a tablespoon's worth of food. Tonight for dinner, he had a quarter of a grilled cheese, half a bowl of chocolate pudding and about 10 bites of fruit. Big difference.

He still has lots of headaches. They started measuring his scalp yesterday. Today when it was measured, it had grown. The left side of his head is what is growing. The fluid is between his skull and scalp. As long as the staples stay in place and the cut doesn't pull apart, he is ok. They don't really want to go in and drain it because of the risk of infection. We'll see what happens tomorrow.

We will find out tomorrow if he is going to Kennedy Krieger Institute tomorrow or Monday.

The nurses on this floor are the greatest. You couldn't ask for more personable friendly people to be taking care of your child. The ones that had him earlier in the week can't believe the difference that he has undergone. One even said that Chance could be the poster kid for Hospital Makeover. Isn't that funny????!!

Note: Okay, so maybe I spoke too soon. He just threw up. But it was only the pain meds, which he has been refusing to take half of the time anyhow. If his head hurts later, he can have something then.

Hope for the best tonight and tomorrow. Please keep him in your thoughts and prayers and thank you for your continued support. Good night.

2008-08-13T22:01:00.006-04:00

I'm adding another blog onto tonights list. I got some really great photos from my trip to Baltimore and wanted to share them.

Also, some people have mentioned the fact that they cannot get to older posts, there is an archive section on the left side. Clicking the different dates takes you to past posts.

2008-08-13T22:01:00.001-04:00

Well, a little set back for the night. Chance threw up again, right after taking his pain meds and seizure meds by mouth for the first time. They are going to hook his IV back up to make sure he doesn't get dehydrated. Hopefully tomorrow goes better, which I'm almost positive it will.

Oh by the way......no seizure activity yet!!!!!

2008-08-13T18:42:00.003-04:00

Today was a really good day. Chance walked way down the the playroom and back. This is at the other end of the hall. There were a couple of girls in the room and they yelled out "Hi Chance" and all he did was grunt at them.

He has seemed to be really down in the dumps and wasn't responding to me or anyone else when asked questions. I talked to Dr. Vining about it and she told me that it was normal. She then proceeded to talk to him and told him it was unacceptable to be that way. She asked him why he wouldn't talk to me and he told her 'because I don't want to'.

Well, there you have it. She talked to him a bit more and I haven't had any problems since.

Daddy, Dee, Trevan and Pappy Joe came down today. Daddy is here to stay for awhile. Yeah!!!

Chance got a whole bunch of cards from Katie's church. He also go balloons, checkers and a cow from my coworkers at AES. He is holding onto that cow. Marci sent him a blanket for his bed and I had to put his quilt away. He wanted that instead!! Thank you everyone.

Chance threw up a couple of times today. They pulled out his feeding tube and now he can eat a bit easier. He isn't eating much but it is a start. Chance is a HUGE eater. For him to put away 3 pieces of pizza is nothing. For dinner tonight, he had a small bite of meatloaf with gravy, 3 small bites of mashed potatoes with gravy and a few spoonfuls of chicken noodle soup broth. Now he's full.

After he ate dinner, he wanted to go for a walk. I was so suprised because all he has wanted to do was sit in his room. Daddy and I got the wheelchair fixed up and he walked over to it and had a seat. Then we showed Daddy around the floor. We showed him the playroom and tried to get the fish to kiss his finger but they wouldn't. We made it the whole way around the circle and didn't get sick. Now he is worn out and in bed watching one of his favorite things in the world, wrestling. Let me just say - woo hoo.

2008-08-12T20:56:00.003-04:00

Chance had a pretty decent night last night. He still woke up regularly but it was more like every 1 to 1 1/2 hours. Much better.

He was allowed to sit up today, so this morning, I sat him up (with his help). Well, that was a mistake. About 2 minutes later, he told me his belly hurt and then he threw up. They think it is something to do with him moving around. After that, he felt much better and for the rest of the morning and afternoon, we practiced sitting up in bed for about 10 to 15 seconds at a time.

Thank goodness we did because then PT came in to work with him.

Chance walked today about 50 feet! He held my hand and the PT guy (Matt) held onto him for support and we walked as a group. When we got back to the room, Chance got to sit in a wheelchair. By that time, he was tired and just wanted to get back in bed, but he had to stay in the chair for at least an hour. We went down to the playroom twice to see the fish. He didn't have any interest in them right now, but I did.

Right now, he is laying in bed sweating and shaking. His head hurts pretty bad. He doesn't have a fever any higher that it has been so we will see how he feels in a little while. I had to give him another pillow because the one he had is soaked.

Jane from the HemiFoundation came to visit today. It was nice to have someone to sit with for awhile. Chance's IV machine was beeping and you could see it was driving his head crazy and she went to get someone to turn it off. I have one of my monster headaches too. She sat with Chance and I went to get some Motrin. I hope they work tonight.

He got his first piece of mail down here. Even though he doesn't feel all that great, he had his finger sticking in the hole of the envelope to open it. He loves getting mail. It made him smile when I told him he had it. Thank you Carol.

I don't have any pictures today because Mr. Pouty Pants wouldn't let me take any of him standing or walking. Maybe tomorrow.

One more day closer to being home. Talk to you all tomorrow.

2008-08-11T21:25:00.005-04:00

Last night was a very long night. Chance would wake up saying that his head hurt and that he wanted to go home. Then he would sleep for 30-45 minutes and it would start all over again. I felt so bad for him, but there is nothing that I can do but be there to comfort him.

Dee and Mom came over at 8:00 and I went back to the Children's House to sleep for a few hours and grab a shower. Heavenly!!!

OT and PT came in today and did some stretches with him.

The afternoon was peaceful. The long night and the PT/OT must've really wore him out.

Chance's bed got moved to the 60 degree mark. He drank some apple juice and then he threw up. I guess the movement, the apple juice and the food in the feeding tube were just a little bit too much. We cleaned him up and turned the tube off for a little bit. The tube is back on but flowing slower than before. We have water for him to drink tonight if he gets thirsty.

Tomorrow Chance is supposed to get out of bed to walk a little bit. That is something that he really wants to do, but he's gotta get off of the drugs too. He figured out how the pain button works. When he wakes up in pain, he says, "Where's the button?" Isn't the funny. The boy is amazing.

Talk to ya later!!!!

2008-08-10T20:01:00.008-04:00

Well today has been one of many changes.

Chance pulled his IV line out of his left arm (not sure how he did that,both his hands were tied to the bed and the right hand doesn't work anyhow). He reminds us all so much of my father. My dad ripped out his IVs most times and even snorted out his feeding tube. These not so good traits are coming out in Chance as well.

This morning, he told me that he loved me and asked for a hug.

They decided that he was being moved to the floor sometime today too. So, to get ready for that, we removed his catheter, the central line in his neck, the drain in his head, the bandage on his head, the tube that was in his nose and the face mask of oxygen. In their places, we put in a feeding tube and the oxygen tube that has the two little prongs that go up your nose. They actually let you help here. Not the serious or scary stuff, but the minor stuff they do. He has a PCS system which is basically something that continuously gives him pain medicine and then also has a button that if he hurts, we can push it for some more. It is set so that he doesn't get too much.

He was moved to his new room at about 1:15. The rooms here are cool. I can't wait until he wakes up enough to enjoy this place. In his room, there are a few chairs, a bed, a chair that folds to a bed, a tv, a game system, dvd/vcr player, a bathroom with a shower and his 'area'. And that is just his room. They also have a laundry room, a playroom for the kids and a pantry that has lots of different snacks when he can eat again. It's just like a hotel for kids.

He has spent most of the day semi sleeping and crying/moaning that he wants to go home, his head hurts, he wants to go home, he wants chocolate milk, he wants to go home, he wants to sit up, he wants to go home (are you noticing a pattern here??).

He got to talk to his daddy twice today, well he mostly listened to him. Bryan had the most amazing calming effect on Chance. He loves his daddy.

He also got to talk to Quinton, Dilan, Tracy and Gam.

Just a little while ago, he told us that his hand hurt. Dee got the nurse and when she looked at his hand, it was swollen WAY BIG. She took the IV out and we're waiting for the IV therapy people to come and put a new one in. She gave him a warm pack to put on to help with the swelling but he doesn't like it.

I want to say a special thank you to my mother and daughter. My mom has been here to help with Chance and support is in any way that we need. My daughter set up this wonderful web site (or had it set up) and helps me because I am so web incompetent. She is helping with Chance yesterday and today and has been a huge help. Chance was pretty mean to her this morning but he didn't really know any better.

I know that each day is going to get better as we go along. The difference between yesterday and today is amazing.

I can't wait to see what tomorrow brings.

Here are a couple more pictures.

Chance and his teddy bear "Quinton". He went on a trip today, he flew across the room.

Chance and his Annie (that's my mom).

VISITING INFORMATION
Chance is now on the fourth floor. However, we would like all mail to be sent to the Children's House-hopefully we won't be staying in this room for long. If you'd like to visit, please call first.
7AM-11AM are for parents and grandparents to visit.
11PM-7AM only one guardian can be in the room at a time
12PM-8PM are open visitation hours.

2008-08-09T23:17:00.004-04:00

My mom decided to spend the night with Chance tonight. After dinner, we went back over to the room and they said that he needs to go three hours of breathing on his own until they will take out the ventilator. They started the clock at 7:15 and we had our fingers crossed. Around 10:30 they started getting things together and talking about what they were going to do. Mom and I chose to leave the room while they took it out. The nurse came to get us around 10:50 and said that Chance did wonderfully-what else would you expect? The tube came out without any problems and he said Mommy...

Since he isn't sedated any longer and is off the ventilator, chances are, he'll be awake a lot more. It was best for mom to stay with him so that he knows he isn't alone. We've got some pictures of him without that nasty tube-they'll be up tomorrow morning. Hopefully, all goes well tonight. Since I don't have any pictures of Chance, I'll leave you with a quote that I find fits perfectly with Chance. Throughout his entire life, he has surprised us and done so many things we thought he never could. I definitely know that he won't stop now.

--Dee

2008-08-09T19:45:00.006-04:00

Today has got to be one of the most stressful days so far.

We didn't take Chance off of the ventilator last night, he just wasn't ready to breathe on his own yet. This morning, we started trying again and we have been trying ever since. They started weaning him off of the sedation medicine this morning, and completely stopped it at 3:30 pm. He has been breathing on his own (with the ventilator in) since about 4:00 but he keeps stopping breathing. He has to go at least 1 hour of continuous breathing without us telling him to breath and that hasn't happened yet. We are still hopeful that it will happen sometime tonight. He also only has tylenol for pain medicine right now because they can't give any other stuff until the ventilator tube is out.

He was moved to another room earlier today too. That was scary because he was hooked up to portable machines and happened to be awake during this time.

They make us leave at 7:00 am and pm for 1 hour while the staff changes. Tonight, I got back to the house and Deanna had made ham steak, fried/sliced potatoes, and macaroni and cheese. We had a real home cooked meal. It was awesome. When Aaron and Maggie dropped Deanna off today, they also dropped off all of the food that they hadn't eaten this week at the beach. Thanks a bunch for that!!

Hopefully by the next time I post something, Chance will be completely breathing on his own. I'll talk to you later.

Here is a picture of Chance in his new bedroom. Can you tell that he loves the Steelers? You can notice him all decked out on surgery day in Steelers gear as well.

Here are a couple of other pictures. They are what Chance looked like 1 day after surgery. If you don't think you can handle looking them, please don't click on them.

2008-08-08T19:38:00.002-04:00

I'm putting the post out early tonight. I want to stay with Chance tonight but we will have to wait and see.

He had a VERY peaceful night and day. They found the right mixture of medicines to keep him comfortable. Things look great and the doctors are still pleased. His face is a bit more swollen than it was yesterday. They think it may swell alittle bit more tomorrow and after that the swelling should start to go down. They told us that his brain cavity is probably already filled with the spinal/cerebral fluid.

We are planning on taking the ventilator out and start the movement of his head to midline sometime tonight or early morning. They are pushing up the levels on the ventilator that allows him to breathe on his own. If they can push it enough, they think that the ventilator may come out around 3:00am. If I come back to the room tonight, and they are ready to pull out the ventilator, they will call me so that I can be with him. After they remove the ventilator, they will give him a cat scan. It's going to be a busy night!

We haven't seen the incision yet. They don't remove the bandage unless there is seepage.

Talk to you all later. Hope you all have a good night.

2008-08-07T22:44:00.002-04:00

Well, today was another long day. Chance had a peaceful night last night.

For most of the morning, he slept. Around 3:00, he woke up and mouthed 'I want my mama'. How exciting is that? He spent quite awhile awake and agitated. This happened twice today.

He still has the ventilator hooked up and still has his head taped down. They are trying to keep him sedated so he doesn't get so agitated but the medicine just isn't working for him. They tried a new mixture on him tonight. We hope it works and that his night goes better than his evening has went. One time he was trying to sit up and I was telling him to lay back down and relax, that he had to get his rest and you know what that boy did to me? HE STUCK HIS TOUNGUE OUT AT ME!!!!!

The things that he has tried to say are (and anyone that knows him will really appreciate these) 'I want to talk', 'I want to play football', 'I want to play xbox', I want to get up', and 'I want to go home'. He told us that his head hurt a few times and they gave him so medicine for that.

All of the doctors are very pleased with the way that things are going. The things that he is trying to say are appropriate for his age. It isn't garbled up. He can't wait to come home and see all of his friends and have a sleepover with Noah and Adam.

The plan for tomorrow evening is to try and take the tape off and the ventilator out. As long as his head is taped, he has to stay sedated and as long as he is sedated, he has to have the ventilator. With the way things are moving along, we think he will be tapefree and ventilator free by the time bed time rolls around tomorrow.

We have some pictures that I am still thinking about on whether or not we should share them. They have mostly been taken for him to see someday down the road to show him where he started his 'new life'.

I don't remember if I told anyone or not already, but right before surgery, they asked us to donate Chance's brain tissue to be studied and of course we agreed. Anything that we can do to help doctors understand what happened when Chance was forming, we will do so that maybe someday, they can fix it or stop it from happening. Who knows, maybe some more good will come out of this.

Thanks for all of the support and we'll talk tomorrow.

2008-08-06T23:05:00.002-04:00

Hi everyone. It is 11:07 PM. We just got back from the hospital. Chance is resting peacefully in the PICU after being in the OR all day. His face is already a little bit swelled and they told us that it would be worse tomorrow. There were no complications during surgery.

He was to start surgery at 7:30 this morning but they had some issues with beds in the PICU. Apparently, they can't start until they know that they have a bed for the patient to go to for sure. Bryan and I walked him back to the OR around 9 and Bryan went in with him to the OR for him to go to sleep. They started the first incision around 10:30 and the waiting began. The doctors were really good. They either called or came to the waiting room every hour to update us on his progress. Every time it was 'he is stable, vitals look good, we're moving along'. They came out around 7:30 pm and told us that they were finishing up, so by 9:30, we were getting a little bit antsy. At 10:00 pm they wheeled him down the hall and we got our first glimpse of him. What an emotional 60 seconds. Then we had to wait for another 30 minutes while they got him situated in his room in the PICU. They gave him a wake up test and he moved all four extremities and tried to pull his breathing tube out. (THAT'S MY CHANCE!!!!) After that, they put him back to sleep.

His head is taped down, to the side, to the bed. His hands are tied to the bed too. This is for his safety. They will keep him sedated all of tonight and we're not sure about tomorrow. We gave him his Steeler's teddy bear last night and it is on the bed with him to watch over him and be there if he wakes up. He has many tubes coming out of many places, LOTS.

I have to go call Quinton now and let him know that his little brother is doing good. Thanks for all the prayers and thoughts, they mean the world. We'll keep you updated and love you all.

Timeline

2008-08-06T12:25:00.005-04:00

--I recieved a phone call this morning, when they woke up, from Chance around 5:30am. He seemed rather tired but was very excited to get rid of his seizures.
--They had said that surgery would be around 7:30, however, they didn't take him back until 8:43.
--They started the actual procedure around 10:37. Chance chose to go completely bald.
--The skull was removed at 11:42.
--They began cutting the brain at 12:00.
--At 3:53, my mom texted me and said that they were done with most of the first and second parts of the brian--there are four parts alltogether.
--At 7:25, I recieved a text that said they were closing his head.

They called around 7:43 to tell me that the surgeon was very tired. They couldn't get all of the left side out because it was very hard, unlike what the right side was like. Everything went as expected.

This is just a rough draft of todays timeline thus far.

--Dee

whoops.

2008-08-02T18:38:00.003-04:00

So, I'm adding this blog to Chance's website so that whenever my mom sees it, she knows these three kids are going to stay strong and love her very much. I realize how hard it is to stay strong and have a happy face on in such a situation-definately being so far from home--but you do an amazing job, keep it up. Quinton and I will constantly be thinking about you both.

We love you Mom,

Deanna, Quinton and Chance.

The Beginning

2008-07-02T08:10:00.003-04:00

This blog has been created as a way to update friends and family on Chance's latest journey. Please feel free to pass along any information you see to others that know and love him.

Chance will be having a hemispherectomy at Johns Hopkins Hospital on August 06, 2008. The surgery is to start at 7:30am. Please keep him in your thoughts and prayers.

We will try to keep the site updated as often as possible and post pictures for you to see.