Saturday, August 16, 2008
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.
8:05 PM
Friday, August 15, 2008
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.
9:41 AM
Thursday, August 14, 2008
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)
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.
8:38 PM
Wednesday, August 13, 2008
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.
10:01 PM
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!!!!!
10:01 PM
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.
6:42 PM
Tuesday, August 12, 2008
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.
8:56 PM
Monday, August 11, 2008
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!!!!
9:25 PM
Sunday, August 10, 2008
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 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.
8:01 PM
