April 13, 2010

Tuesday-We got a late start today. We were up a bit last night with the blood sugar issues and after today's appt, I hope it will be worked out somewhat. We got to Sloan and Cody had fun showing off his photos from last night. He was in a good mood but tired. We had trouble with his mediport so we had to wait even longer, just for blood results. We got a plan for the blood sugar issues and hopefully it will work. We are making adjustments so that he can get the most calories from his feeds and IV nutrition without sending his sugars so high. He is like a science project. Listening to the drs today, you really have to know your math and be able to do calculations. Let's hope it works. We will find out tonight. We had some time so we went to the cafeteria to eat and he tried a burger. It just seems to get stuck in his throat. He gets so upset and just can't eat. It took us a long time to get home, he napped in the car. As for me, I am pooped and am sitting here at 10 pm waiting for his meds to be delivered. UGH. We do not have to go back until next Wednesday. We are skipping the next two Tuesdays for family birthdays.

Enjoy the pic and look closely. This is what steroids do to you..

April 12, 2010

Monday-Today it was a beautiful day. I actually sat out and Cody took a nap. We got ready for the city and the car came at 5:30. It ended up being a limo, pretty exciting. We had a quiet ride in but it was so nice. We got to NBC and took a short walk and took a few pics. I will get them up tomorrow. We went to watch a short video. I was disappointed that we did not get to take a tour but we got to shop in the store and the candy store and then we took these hysterical pictures. I will post them too. We had a fun time with those pictures. We had some good laughs. We walked around again and it was just a beautiful night. Cody, Ally and Renee had a great time trying to get people to wave. We enjoyed the ride home and had another good laugh. Cody called a radio station and he got through. It was so funny, he changed his voice and it was a riot. It was a fun night. Thanks to Renee and Ally for coming with us. You made our night...sweet dreams.

April 11, 2010

Sunday-We relaxed most of the morning. We were up at night with the blood sugar issue and hopefully on Tuesday we will get it worked out. We hung around and waited to leave for the last hockey game for the season. We got there and we were a little disappointed because we did not get to see Richard because they were doing physicals for the team after the game. I know Cody wanted Richard to see his mohawk. He will soon enough. It was a GREAT game to watch but they ended up losing in the last few seconds of overtime. We were watching the big screen and they kepy showing montages of the season and sure enough there we were! Cody made it 2x and I was in the background. It was pretty exciting. It was a great season for the Islanders and we were glad to be a part of it.

We talked to Casey and he is going to stay and wait a few weeks for the next group to catch up and he will join them. I am glad he is staying. Nicole is going to come visit us in a week or two. It will be nice to see her.

April 10, 2010

Saturday-The night was a little hectic with Cody's blood sugars running higher than normal. He gets insulin in his IV at night so not sure why they are all of a sudden rising. I did have to give him a shot of more during the night. We will see how tomorrow goes.

We hung around this morning and then went to our first therapy appt. It was good and Cody did talk and I understand he feels in the middle of me and his dad. His dad did not come and we will plan for him to come the next time. I am going to do a better job at getting out and letting him here alone. He wants that too-typical teenager. So it was good and we will go back. We are scheduled for next Sunday but his dad will not be here so we are trying to work that out.

We had a quiet afternoon and actually both dozed again mid afternoon. I could get used to this.

Nicole got a call from Casey and he got his pass so she was driving back to Columbus last night. She will see him tomorrow for the day. I hope we get some answers. I know it is hard for him and I feel bad. I wish I could help.

Nice day and hoping tomorrow is better.

April 9, 2010

Friday- I do hope the sun comes out! Today we got bad news from Nicole regarding Casey. Not sure what all this means but he did not pass the same part again. So he has to be recycled again. Not sure when this puts him for graduation but looks like he won't be ready to see us in June. We are very sad and feel bad about him not passing. I know Nicole is upset too. They had plans and she just wants to see him. We hope to talk to him tomorrow and we will hear more about what all this means.

Cody seems to be feeling better which makes me feel better. He had his english tutor and I actually left him here with her and went for a pedicure. He needs to start being alone with others too. So it all worked out.

This afternoon we both crashed on the couch and took a little nap. We woke up and went to the lacrosse game at HSE. He saw some friends and the principal and asst principal. He was happy to be there.

We got a call from the person in charge of the outing on Monday. Monday night we are going to NBC studios for a private tour. The place is just open for a few transplant patients. So the call tonight was that they are sending a car to come get us. We are trying to get a few friends to join us. It is hosted by a man whose grandson died of leukemia. So sad but so nice. So we are looking forward to that.

Should be a good weekend. I am getting 2 estimates for the damage and bathroom and then on Sunday we go to the last game of the season for the Islanders. Hope you all enjoy yours.

APril 8, 2010

Thursday-I was up early so I could be ready for John the Plumber. He got here and had to rip a bigger hole in order to see the leak. Thank goodness we found it. Now just have to figure out what to do.

Cody slept pretty well, he got the new med last night. He did well last night and today as far as diarrhea goes. He is very frustrated with the eating part. He wants to eat again but does not know what he wants. He asks, I make it and then he takes one bite if we are lucky and is finished. Today was another example. He wants TGIF's sesame chicken so hoping to go there tomorrow. As for me, I have no problem eating. Not good. Not happy with the way I look. UGH. He had his math tutor, took a nap then we got out hair trimmed. You can see he got a mohawk. It looks good. Jerry did a great job, thanks for fitting us in!! Then he had his spanish tutor and he did really well with the practice part for the regents speaking test. (Perfect scores!) We took a ride and he drove and we went to see Jean who was hanging around. He did really well driving. So we are sitting here tonight watching the Islanders play and Cody's player is out due to an eye injury. It is not the same without him playing. I miss him. I do hope his eye is ok too. We go to the last game on Sunday.

I have heard the nice weather is ending. I surely hope not. We are loving it! Have a good Friday my dear friends...oxoxoxo

April 7, 2010

Wednesday-It was a hot one! Nice for April but a little too early.

We were really tired this morning so we canceled the science tutor. We took a ride to Target to get a few things. Cody will go anywhere if he can drive. :)

We tried the 5 Guys place. We had not been there. Cody is not eating again so he watched me pig out. He had his social studies tutor today and did well. I went to visit next door and when I came back in, it looked like maybe an ice cube had melted on the kitchen floor. Not unusual since I give them to the dogs. Then I feel this drip. Now my upstairs has an old bathroom and it does need remodeled. I do not use the shower, that leaks so I use the tube, sink and toilet. Well, I look up and the ceiling is hanging. I get a broom and touch it and it falls! Yes, there is a whole there from leaking over time I suppose. So I clean up the mess, make a call and cover the area with a garbage bag. I feel like I could really qualify for Extreme Home Makeover now! I have a friend/former parent/plumber from SH coming in the morning. Guess I will have to re-do that tub at the very least. Just what I need now.

I have been emailing the drs and the team at Sloan decided Cody should go back on the med he was on back in July for the rejection. They said it failed and caused diarrhea but I think they are wrong since he has had diarrhea all along. So we took that last night and will hopefully be ok without more diarrhea. Time will tell. I hope it works.

We had a quiet afternoon/evening.