day 132 October 14, 2009

Wednesday-We have hit a low point. The night was not that good and we have this feeding tube issue hanging over our heads. If we have to get it, we will. Cody tried again this afternoon to sip a milkshake. It made him gag and he got the heaves. It did not come up which is good. It is just getting it past his throat. I am hoping this new med works and he can eat. He is upset a bit and just down about the whole thing. I do not feel it is a mental issue and I did read that this can happen. He got up for his tutor and then went back to bed until the next tutor came. I try to get him out each day so we went to get stuff for a care package for Casey. He is going to be overseas till Christmas. He lost a guy in his platoon so he needs to stay. I cannot wait for him to get back. He has called this week and even called grandpa Pete. I see him on facebook so we get to chat there. Cody likes to do that with him too. Let's hope we can get on this 'up' streak and put this all behind us.

Day 131 October 13, 2009

Tuesday-We had a bit of a rough night with diarrhea and then a bout of vomiting. The vomiting is from his thrush infection first causing him to gag then vomit. We left for the city around 9 and as soon as we got on the LIE we turned around to come home to use the bathroom. We stopped one other time on the way and it made the trip feel like forever. We waiting a long time today there too. We have seen this young man there a few times and he and Cody talked. He is there for his 2nd transplant. His brother was there today and he is the donor. So we met the whole family. He and Cody exchanged facebook invites and maybe they will connect with each other. He is 23 but still going through it just like Cody.

We had a long talk today about Cody's not eating and the idea of a feeding tube came up. He is scheduled for one on Nov. 9th but hoping this will not have to happen. He is starting another anti fungal tomorrow that will hopefully help his yucky mouth and then help him to eat. We tried some Insure drink tonight and that was no good. He did have a little of a smoothie I made with fruit and ice cream. We are going to try hard and get him to eating. Then if we are not successful, we will do the feeding tube in his stomach. He is not happy about it but he is wasting away as far as weight goes. We will try harder.

He was upset this evening and then we had to try to do homework which made it worse. I do not know how I could be working through this. I started his meds early tonight so I can go to bed soon too. We need to get a break and move ahead! Soon, I hope....

Day 130 October 12, 2009

Monday-Columbus Day-We thought today would be a good day to go to an Islanders game. It was a good day but it was Kids Day. Cody rested up all morning and we were able to stay for the whole game. They lost but it was a good game. We enjoyed ourselves and we loved seeing our nurse from Schneider's, Jill and her hubby. She is a die hard fan and she and her husband have season tickets. Last season they gave us them for one game and we are going to go next week with them for another game! It is a night game so Cody will have to rest up before the game.

It was great to see Jill and we are looking forward to next week's game. Let's Go Islanders!!

Day 129 October 11 2009

Sunday-Cody woke up and seemed to look more rested. We had planned to do mini golf with his dad and family so we did that. We did not get to finish the course as Cody was pretty tired. Some days he has more energy than others. We left there and had lunch then Cody and I came home. He took a bath and was resting. Everyone came here to say goodbye and we played a few games. He was pretty tired and I know he pushes it sometimes. He is in bed now (7:30) and we hope he feels rested enough to go to an Islanders game tomorrow. Thought it might not be a crowded game and not so rowdy. We will see how he feels in the morning...good night all and thanks for reading.

Day 128 October 10 2009

Saturday-Cody seems to need some days to catch up. He needs to just sleep and relax. So today he slept till around 12 and then we went to HSE's soccer game. He loves going and it is so nice to see the players and coaches and teachers there interacting with him. He leaves there smiling. Everyone makes him feel so special so it is worth going. It is getting cooler so not sure how many we will go to but we will try. They won again and I am pretty sure they are going to the playoffs now. (More games!) We came home, he took a bath and was in bed at 6pm. The colder temps knocked him out. It was a good day for sure! Thanks to all my friends there. It is support and therapy in a sense for me too.

Day 127 October 9, 2009

Friday-Long day at Sloan. We had a normal visit but he needed his IVIG, gammoglobulin. It is for his immune system. We talked about the diarrhea issue and he will be taking an antibiotic for a few days. It is not absorbed, just goes right to the gut so it should help him. We will start it in the morning. We met with the neurologists and they were happy with his progress. They are getting to know the real Cody since he was so out of it when they were treating him before. Cody's big concern is when can he drive again. The seizures and medicines are preventing him. We are going to try to get some kind of clearance for him.

We tried to see our little friend Patrick. We met him from NYU when he was just diagnosed with cancer. He had a tumor on his kidney so it was removed. He came to Sloan and we see him from time to time. Yesterday he had a portion of his liver removed. He and Cody call each other the favorite roommate. Cody wanted to see him but was not allowed. We went to leave a gift and he is in ICU but doing well, his mom emailed me to say. Please add him to your prayer list. He is this sweet 8 year old and has a rough battle ahead too.

Casey called tonight and it was hard to talk to him. He lost a guy in his platoon last week. Scary. I know Cody misses him and is worried. We are trying to work out Christmas plans.

I get off the phone and cry. I am trying to find out what I did to deserve so much pain to my heart? I will get through all of this but so painful. Thanks to everyone and continue to pray for Casey's safe return. xoxooxoxox

day 126 October 8, 2009

Thursday-Today was a busy and productive day. First we met with Cody's guidance counselor. She came over to discuss his schedule and ways we could make school a bit less stressful for both of us. I think we have something worked out so he can feel less stress and not be so overwhelmed. We cut back a few and are helping him review with some regents exams. After she left, Cody worked with his math teacher. He took a little break and then the English teacher came. He was still going strong. And after that, we went to the soccer game. We were 5 minutes late, and I think that is why the team lost. They played a very 'dirty' team and should have won. We saw a few teachers there and it was good for Cody to see one of his favorites, Dr. Stabile. He sat with a friend and it is so good to see him smile. We hung around for the pizza but he did not eat any. Then home for bath and bed. He was tired but had a GREAT day!