July 31, 2011

We did the press conference on Thursday! It was really fun. I spoke and messed up the diagnosis date, go figure. Cody did well and seemed a lot less nervous than I was. I mentioned at lunch later that he did not drink too much.

Later that day he went to work and called because he did not feel well. He tried to stick it out but came home and said he felt dehydrated. I started water in the gtube and then we called in because he was so nauseous with it. The fellow said to switch to pedialyte so we did that the rest of the night. We had our monthly appt in the morning.

So Friday we went in and labs were ok. His weight is up to pre transplant weight and that is what we were shooting for. He still is getting 3 cans of feeds and needs to drink to get caught up. It might take a little longer since we are catching him up at home. He is thrilled about his weight. We saw the boy, Karl and his family there. They live 10 minutes from us. Karl is having a tough time too. He was in the hospital for 5 months following his transplant. His mom is stressed and she has 2 little ones at home. I begged her to call me to even just talk. I think she will. We met Uncle Jim and Matisse and had lunch with them. Matisse looks adorable in his shaved head.

We are having a quiet weekend but a good one. Can't believe it is August tomorrow!!! Not looking forward to going back to work. Looks like a busy month too!

July 28, 2011

Very exciting day here for us. Cody and I were asked to do a press conference for the NY Islanders to help promote the vote for a new coliseum. While I was very nervous just thinking about it, it was something I knew we could not refuse. We both wrote little speeches and had fun with it. It was a fun experience and we learned how his diagnosis had an impact on the community at the coliseum. It was really special. As always, thanks to Ann!!

Cody did not drink enough today and I knew that. He came home and relaxed and went to work for a little while. He came home and said he felt dehydrated. I started water here and pedialtye and called the team. Our appt is for tomorrow so hoping we get through tonight and can just go there tomorrow. He is really doing so well and the fact that this is not an emergency is a huge step. Keeping fingers crossed for a restful night!

July 24, 2011

Sunday-Busy week. We went to the kidney specialist on Wednesday. All was great there. He is still going to stay on the enalapril to protect his kidneys from the damage of his treatment. Enalapril is a blood pressure med but it works to protect the kidneys. His urine was negative, no evidence of proteins which is perfect. We stopped in at Sloan and Cody visited Karl and looked for the girl he knows from graduation. I actually connected with her dad on a website and we found out that our kids both did the Sloan graduation and then we connected the kids. Cody wants to meet her. She lives in NJ but hopefully we can see her the next time we are at Sloan which is this week on Tuesday. On Thursday we went to our good friend, Dr. Pliskin to take a look at Cody's toe. I had a feeling he would need it cut and he did. Dr. Pliskin gave him a few shots in his toe which were pretty painful and then he cut the nail. We called Sloan first and spoke to Dr. Boulad to make sure if was a go and he is just so awesome. Cody had some pain later in the day and was upset about not working. He did try to go to work on Friday but it was 100+ degrees here and he called me about 30 minutes after he was there. I brought him his anti nausea meds but he really just did not feel well so he came home. He felt really bad because he wanted to work. He is really trying. We went there yesterday and he told them he feels better. I am so proud of him and how hard he is trying to get back to some kind of a regular life.

We talked to Casey yesterday and he sounds amazing. I am so happy each time I hear his voice. He was talking about Cody coming there around Christmas-to Savannah. I think it might be good for Cody to go visit him. I am not sure when I will get there but maybe in February. I really miss him. When we talk about Cody and his care, I realize how far he was during all of his treatment and scary times.

To all my NYer's, stay cool.

July 18, 2011

Monday-Great weekend!! We went swimming on Friday and Cody finished the camp. Then Saturday we went to the Islanders scrimmage with the new players. A few of the people that work there came up to him and said how well he looked compared to that awful night back in the spring when he was whisked away by ambulance. That was the night he ended up needing blood because of a medication. So we watched the game and then got up early Sunday for the mini rally, the pirate run. It was a long day and fun. Cody loves that car and he enjoyed being around all the others that love their cars too. I am working on him and helping him to make new friends.

We got tickets to a Yankees game for August. We get to have a special dinner there, go in the dugout and have great seats. Cody wanted to ask "Neighbor Bill" from the race track. He is a Yankee fan. I talked him into asking his friends Ben and Tom. He needs to be with kids his age. Ben can go and we are waiting to hear if Tom can go. It will be a fun night.

He feels good, acts so silly and he looks good too!! Thank God.

July 14, 2011

Thursday-So Cody is doing the rowing camp this week at Dowling. He is doing well. He is the front guy in the boat screaming out the commands. The crew rows backward. I think he likes it. He missed today to catch up on his sleeping. We went to Riverhead Aquarium today. It was beautiful out there. We took a boat ride and had a great time. It was a really nice day. Tomorrow is the last day of camp this week and we are going swimming afterwards at my friend's Corinne. I know Cody will be exhausted but he will catch up on Saturday. It has been a great week!!

July 10, 2011

Sunday-Cody is doing so well. He jumped on the scale tonight is 50 kilos!! He is thrilled. He is really eating and we are working on the drinking. We talked today about how he needs to drink more so we can get ready of the g tube. Yesterday he went to a graduation party for a little while. I am glad he went but he was bored and came home early. It is hard for him to get in with his friends. I know he will make new ones too.

We went to a mini club meeting today. We met some nice people and will do a rally with them next weekend. It sounds fun and we just need to meet some new people too. Tomorrow Cody is attending a half day camp for rowing at Dowling. He is pretty excited and is driving out there alone. We met with the coach last week and I feel better about it and I think he will be ok. He needs to get into something for sure.

All is good. I have been thinking about the McGowan's this week. It is already a year since Dina passed. Tough time but they are getting through. Extra prayers out to them.

Have a good week friends.

July 3, 2011

Sunday-Things are good. It is the weekend of the 4th and Cody and I are keeping busy. We got a call from Casey yesterday which was awesome. Cody started back at McDonald's this week and he loved telling his brother about working. We ended up going to Riverhead Raceway and we watched fireworks there. It was definitely an experience. Today we just rode out east and did a lot of nothing. It was crappy weather here so hoping tomorrow it is nicer.

We booked our tickets for Casey's wedding so we are looking forward to that.

Happy 4th to all!