Saturday, November 22, 2008
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!!!)
Wednesday, November 12, 2008
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!!!!!
Monday, September 29, 2008
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.
Sunday, September 14, 2008
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.
Saturday, August 30, 2008
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.
Thursday, August 28, 2008
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!! !!
Tuesday, August 26, 2008
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.