September 30, 2010

Thursday- we waited all day for the rain to come. Guess it is coming tonight.

We interviewed the first person for the companion we are looking for for when I go back to work. I do not think she is a good fit but it was good. I def feel like I can go back to work.

Then Cody met with his tutor for English. He did well.

He went to the his girlfriend's soccer game with his dad this time. When he got home, he broke down. He is so worried about the rash on his arm. Rejection can be in the skin and he is so afraid. It is all treatable. I feel so bad when he gets so upset but in a way, I am glad he does let it out.

We got his suit for Saturday and he looks handsome!!

Spetember 29, 2010

Wednesday-Got to see my teachers for lunch today. Love doing that. It was good.

We ran around trying to get stuff for homecoming. Then we came home in time for his tutor but he could not come due to a cold. So he talked to him on the phone instead. Sounds like a good class. Then we had the boys varsity team at 7 pm. It was a great game and it was be recorded for TV. They won 5-0 which was awesome!! So glad Cody is part of the team.

September 28, 2010

Tuesday-Today started out ok despite the rain. Cody had his bloodwork done and counts were really good. We discussed his dry eyes with the dr and she thinks it could possibly be another form of rejection which affects the skin. There are all ways to treat it so no reason to be alarmed. It really upset Cody. He is so worried. We also talked about his surgery and are hoping he will not need it if we can get him healed. There was a mix up with one of the meds. He was supposed to be off of it but I kept him. It was overlooked. That did not make me feel too great but it will be ok. Then we went for the pulmonary test and he went in alone. About 30 minutes into it, the tech came out and said he wanted me. Well, he was thirsty but then felt so nauseous and winded and tired. He was not able to finish the test. He was not himself. So we got out of there and did the echo and EKG and he was much better. He also did not eat this morning and that is a problem. I have to work hard on getting him to eat.

We got home around 2 and both took a nap. We woke up in time to go to the girls soccer game. It was so yucky out but we went.

Good night all...

September 27, 2010

Monday-Rainy Monday and a lazy one. We stayed home all day and Cody had his tutor for Spanish today. He did well. I made some appts and phone calls and cleaned out a closet. Trying to get things done here while I can. Things have been neglected for awhile. I need to do a painting.

Tomorrow we have lots of tests. He is getting all the same tests he got at the beginning of the transplant so now we will see how he is after the transplant. All points to a good sign...good news.

September 26, 2010

Sunday-Lazy and gloomy day. Cody woke up with a bloody nose. I know it scared him a little, as it has been a long time since he had one. I am hoping it is just the change in the air. It stopped and he was fine but I know he was worried.

We ran around all day and did errands. We ordered his suit for homecoming, I am renting it. So he is all set for that. We have his Woody costume for the skit. Thank goodness for Nicole, she is making him a little vest. That will make the costume. Hope he can do his skit. That is all on Friday.

Hope everyone had a nice weekend despite the yucky weather today.

September 25, 2010

Saturday-Off to the boys' soccer game this morning. It was unbelievably hot, like 90!! The boys were very hot. Tough playing conditions. Thank goodness they won! Then home to change and off to a party for a good friend. Mary Picarello's husband graduated from law school. He took the BAR exam and will hear about that in November. He went back to school and did this while keeping a job and with a young adorable baby at home. It was a nice party. Cody ate a little and enjoyed watching all the kids. Mary and Brian and their families are great and always welcome us with open arms. It was a fun afternoon.

We are still nursing his sore back but he is dealing with it.

September 24, 2010

Friday- Today Cody's back is still bothering him. We did go to the girls' soccer game and it was a really nice day out. That is why I take him. It is nice when the weather cooperates.

We hung around for the evening and decided not to go to the race track. He was good with that.

Hope everyone has a nice weekend.

September 23, 2010

Thursday-Very busy day but we did it. My day started early but Cody's did not start till around 1. We went over to HSE so he could take a picture with his princess for homecoming. It was the first time Cody was back in the school in almost 2 years. He knew where his locker was and wanted to go to it and open it. Of course it was empty. We sat in the student center and a few friends popped by to say hello. Once all the kids from homecoming got there, he walked outside for a photo. He felt kinda sad to be there but I think it was good for him. I am so happy he is doing this. The kids have been amazing. Then we came home and he met with his english tutor. She is very sweet and he likes her. Then we left for the boys soccer game. Thank goodness it was a nice day out too. At one point, there was a coach of jv standing on the field with last year's tshirt on with CB on the back. Then I look and the varsity coach is wearing the one with CB on the sleeve. It is really touching how much support we have gotten and how good everyone is to Cody. I can't explain that feeling of sitting there and seeing that but I do get emotional.

We left right away and came home and changed and went to the Islander scrimmage. Cody was excited to see Ann. We were the only ones in the stands and some of the players said hi to Cody which thrilled him. We did not get to hang with any or really talk to them but I am pretty sure they knew we were there. We went to Friday's with Ann after the scrimmage.

It feels good to be writing about Cody's happenings and not about his health so much. He is in pain as his back is bothering him quite a bit. I feel bad. He does well sitting but walking is tough. We are both exhausted and looking forward to just chilling tomorrow...night all and thanks for reading...

September 22, 2010

Wednesday-Today we went to the girls varsity soccer game. They have Cody's initials on their sleeves so I wanted to go and support the team. It was a great game with them winning.

Cody's back is hurting again so he is moving kinda slow. He ate at Subway and did pretty well. It was a good day and a pretty good night...looking forward to tomorrow.

Septmber 21, 2010

Tuesday-Today Cody had a procedure under anesthesia to look at the fistulas. They are healing but they may need surgery to help them along. We will talk to our dr next week. He did well with it and the best part was that we wrote "Be Gentle" on his butt. It was great! It is always hard being there and seeing all the sick children. I see moms holding their kids on their shoulders and the sick child is just crying softly. I see big kids needing help walking and babies crying in their strollers. I see the ones that look so healthy too. It is really sad and hard to be there. I talked to other parents today and it is tough. We talked about his bone density test where there is significant bone loss which we know. They will wait a little while and begin some treatment but it comes with side effects too. We finished up everything and left and made it home in time for the soccer game. He was thrilled. He sat with the players. We saw the girls team and they have CB on their shirts. So touching, once again.

We are excited about homecoming and the plans are falling into place. It will be fun.

Have a good night everyone....

September 20, 2010

Monday-Good day today. We hung out and then Cody had his first class today here at home. It is his first class for his senior year. I tried to take a picture but he would not let me. He did well and we have the same teacher and he really likes her. Then we went to look for a suit for his homecoming court. He was nominated and he is pretty excited. Tonight we found out who his escort is and he seems pleased with that too. Too bad it can't be his Brittany but I hope she understands. She has not been around as she has been sick. We ran to the mall and then to the outlets. He is looking for a watch and he is so persistent. Geez, I wonder where he gets that from, Dad...I know your answer.

Good day and a busy one tomorrow, off to Sloan for the exam of his bottom under anesthesia.

Wish us luck.

September 19, 2010

Sunday-Another beautiful day here on Long Island. We went to an Italian fair at Hofstra today. It was a bit crowded but interesting to say the least. Then we ate at Friday's, well he did. Then we walked around the mall. I am trying to get him out more and walking. I think he enjoyed himself. He can be impulsive at times so it is hard to take him shopping. He always finds something to buy. I got him to hold off but in a lot of ways, he is just like me. (I know, Dad!)

Hope everyone enjoyed their day and weekend....

September 18, 2010

Saturday-It was a boring day according to Cody. We did not have any plans and took a ride and basically did nothing. It was nice for me not to have anything. He feels good and is improving so that is all that matters to me...keep up the awesome job, Cody.

September 17, 2010

Friday-Today Cody had a very long MRI of his abdomen and pelvis. They are looking for the internal fisulas and hoping they healed or are healing. It was a long MRI. Thank goodness they allow me to be in there with him. I actually nodded out and I know Cody slept. Thank goodness for valium.

The next bit of information is extremely confidential. Cody was nominated for homecoming court. There is a lot that goes along with it and we are hoping this happens.

This evening we are both tired. It is only 6 pm and we could both crash. Long day and hoping everyone enjoys their weekend.

September 16, 2010

Thursday-Not much to report today. That is a good thing. We hung around most of the day, of course, went to eat at Subway and then to the boys' soccer game. It was in Lindenhurst so we needed to take the drive. It was threatening to rain but it held off until after the game. It was a horrendous storm too. Thank goodness we were spared of any damage here. The boys won and Cody sat on the sidelines. I had to ask the coaches to tell the boys to protect Cody if the ball came near. He would be protected, I know. We came home and had a nice quiet night here and just chilled. Early morning at Sloan for the MRI tomorrow. Night all.

September 15, 2010

Wednesday-What a beautiful fall day. Nice and cool and so sunny. Cody slept in and then we waited for his spanish teacher to come. It was his teacher from last year and she is his tutor this year too. She went to Spain and Portugal this summer and got him a Portugal Ronaldo jersey! He was thrilled and put it on right on the spot. Of course he had to wear it to the girls' game so his fav GERMAN gfriend could see it! So cute. He ate pretty well today too. After the game he tried Chipolte but did not really want it. He came home and ate his normal snacks here. It was a nice day. Tomorrow we are going to take a tour of Winthrop hospital and meet the doctor there.

September 14, 2010

Tuesday-We got up really early and headed to Sloan. We parked at the hospital and then had to take a cab down to 53rd for the bone density test. It was totally invasive and Cody did fine. We will get the results at some point. Not too worried as I know he has bone loss. Not sure what exactly they will do but we will wait to hear. Then we took a cab and headed back to Sloan. We had a good visit. I had thought we were going to do the MRI for his fistulas but we are doing that Friday. Also they are putting him out Friday to look at the fistulas internally. Hope all goes well with that. He is fine about it, I worry, of course.

Then we went to Subway and he ate really well! We came home and relaxed for a little, well, he did then off to the soccer team. He is so proud and he wears his jersey and sat on the bench. It is so great for him to just hang out with the boys. It brings me to tears to know he is not playing but he is happy for now.

His dad showed up so after the game, he went to Friday's to eat with him. And he ate again! He was off the feeds for over 12 hours so he was hungry! Good for him!

It was a great day.

September 13, 2010

Monday-Great day. I got to the gym and did some things here. Cody got up and Bobby his drum teacher came by to tune up his drums so they would be good for his 'band' practice on Thursday. He is so proud of that little band that is forming. Brittany picked him up and they went to Dunkin Donuts before her game today. He came back and then we hung around and went to her game. We had to go early because he was meeting the boys team. Cody walked over and I kinda hung back. I try to let him have his time. The guys huddled around and they clapped. Cody was then given a jersey with his number 19!! He came back to me and said he was on the roster. It is funny how making the team was such a big deal, now, making the roster is. Cody is so proud to be included. We hope we get home in time tomorrow to make it to the game. We watched his girlfriend's game today too. She is number 19. So cute. Some of the guys came and hung with him after practice. So happy for him. He is feeling so good, he looks so good and that just makes me smile!!! Hoping, hoping, hoping this continues.....

September 12, 2010

Sunday- Gloomy day here. Not much new in the health status of Cody which is a beautiful thing. He slept and then he went to a friend's house. They are trying to put together a band. It was the first time he went to someone's house. He was there for 2 hours and he did well. I am so proud of him. He looked so happy sitting there and hanging with teenagers. He needs this more than anything right now. So the plan is for them to come here on Thursday and jam a little. His drum teacher is coming tomorrow and will tune up the drums and play a little. So happy.

Hope everyone enjoyed their day!

September 11, 2010

Saturday- September 11, 2010. It was 9 years ago that the disaster happened. It was the same clear morning. I watched the names being announced and I did shed a few tears. It is so sad and so many lives were lost. So awful. We will never forget.

We had the Contractors For Kids picnic today. It was nice to see the turnout and the donated time and goods. We brought Brittany and there was not much to do for the teenagers. We left there and took a drive to see the bike track where Cody used to race. Then we drove to Port Jeff and walked around there for a little while. We got home and he wanted to eat. It is so frustrating. He wants to eat but only wants a few things. And now the frustration from me comes from the lack of funds. I make it work for sure. So he and Brittany had a date and went to Friday's to eat. She is a sweet girl. They are both innocent and do not realize the financial stress we are under. I do what I can and will always do what I can and I will be so glad to get a paycheck again.

Saying a prayer tonight for all those families affected by 9/11. God Bless America.

September 10, 2010

Friday-Cody slept in and I let him since I know he would be up late at the race track. He hung around most of the day and went to Subway with his friend, Tom. I was able to do a little shopping and running around. We got to the track, I really did not want to be there but I did it and he compromised and left early with me. I think he was really tired too. It was a good day.

September 9, 2010

Thursday-Another beautiful day on Long Island. Perfect weather. We went to the outlets with Cody's girl and her friend. Cody got a new hat and we ate at Chipolte. It was a nice afternoon. We came home and they watched a movie and I was able to have my guy here to get a haircut. It was long overdue so I ended up getting 4 inches off which is kinda short but I will fix it later and see if I like it. I was so tempted to chop it all off but not ready just yet.

I got some sad news today. The boy, Tyler that we were next to in our first stay at Schneider's is not doing well. He has a rare brain tumor and they were able to do surgery and remove it years ago but part of it was left in the brain stem. He had that zapped with radiation. Well, he had some symptoms this summer and the tumor grew back. He is not doing well and surgery is not an option nor is radiation. The chemo drugs only have a 25% chance of working and that is very low in the big picture because this a rare tumor. He was all set to start college too. His mom and I keep in touch and she emailed me yesterday. It is so sad. He was really supportive to Cody through his time there and he is a really special guy. Please add him to your prayers and at this point, we are looking for a miracle. Thanks.

September 8, 2010

Wednesday-Looong day at Sloan. We knew it would be but seemed longer than usual. And then with the holiday traffic, ugh. It was a good visit though. Cody had an xray of his knee which showed no breaks and just the fluid. We have to make sure it does not get infected and to baby it a while until the swelling goes down. He got his infusions, all went well. We decreased a few of his meds, which is always good too. We asked for a letter for school and talked about him possibly returning sometime this year and it just might happen!!! We have to keep him healthy and hope things continue this way. Long road but it could happen. Hoping and praying! He feels good, is eating and has more energy. He met with the psychiatrist too and we talked a little but got cut off. I think he needs to work through this and he will.

He is a trooper! Love you Cody!

September 7, 2010

Today was the first day back to school for the year. It is always a fun time for me and I really missed it today. Cody especially missed it as this is his senior year. He was trying to make plans for the afternoon and it was also the first home football game. I canceled my hair appt when I saw his tears. It is hard for him and he said he just wants to be with his friends. I felt bad. I do my best but it is not enough in cases like this. He wishes he had his life back, could work, could play soccer and be with his friends. I know how he feels but on a different level. It breaks my heart. Tomorrow we have a long day at Sloan so I set up a meeting with his psychiatrist. She might be able to help him. I am also trying to find out if there is any chance he can go back for some of the time. Maybe in the spring?? I hope so.

The football game was fun. I tried to sit in the distance but still I have to keep an eye on him. I did let him leave after the game and go with Brittany and her friend to eat at Subway and then to the candy store. He seemed happy when he came home but quiet. It is really tough.

I hope all my teachers had a good first day back. Short week.

September 6, 2010

Monday-it was an absolute perfect weather day here on Long Island. I think it was 70 degrees and breezy and not a cloud in the sky. We went to the LI Ducks Baseball game. Our last game was rained out and they honored our tickets today. Cody's girlfriend came with us.

We met her parents at TGIF's for a late lunch. Cody wanted to meet them and since they have cats, he is not allowed in their house. It was nice. Her mom used to be the PTA president at my school so I knew her sorta. Then we went for ice cream and came home very full and very tired. It was a great day. Good day was had by all.

September 5, 2010

Sunday-Today we went to visit Corinne, Michael, Colin and Aidan. We had a great time and stayed till 7pm! Cody loves being out and watching the kids and just hanging. Some of Michael's family and Corinne's friends were there so they are fun. We came home and crashed. I was lying in bed last night and was thinking about how much I miss my friends. It was really good to relax and just sit and bs with everyone. Thanks for having us!! Would have been nice to see the Picarello's too but I think they may have had too much wine at the wineries because I never even heard back.

Cody did really well but did not eat much. He did try a bite of a hot dog but wasn't hitting the spot. He ate a little when we got home but taking him to TGIF's after the baseball game. He is craving that. Going to the Ducks game tomorrow...have a great day.

September 4, 2010

Saturday-Well, I keep looking at that knee of Cody's. It did swell up pretty good last night. I am making him stay off it and hoping it goes down. Otherwise we will take a ride to Sloan before Wednesday. I found the Adelphi men's soccer game tonight so we took Brittany and her friend to it. It was a fun night and now Cody is looking at that school. I hope to somehow get the $$ so he can go to college. It was a nice place too and close to Winthrop hospital which is even better.

Good day and I feel the coolness!

September 3, 2010

Friday-So today was the day of the hurricane that never came. Hurricane Earl did not even bring us a drop of rain here in Melville. Oh well. I ran a few errands and then we hung out. We ended up going to the race track and Cody was pretty tired. It was disgusting in there. We stayed till around 10 and then came home. Cody's knee was really swollen and of course, that scares me. I have been surrounded by cancer and have seen so much the past 2 years that everything scares me. Tomorrow rest day and then see where we go from there...

September 2, 2010

Thursday-Well, today my teacher friends all went back for the conference day. Hope it was not too brutal despite the heat.

Cody and I stayed in most of the day. I did my usual errands and then Cody's girlfriend came over and they watched a movie. He woke up with a stiff neck so he was a little sore. He feels really comfortable around her and she seems pretty comfy here too.

Later we took a ride and he ate and then went with me to Chipotle. We were going to go with the soccer guys to Hooters but it was kinda late. We stayed home and watched a show together. His blood pressure was up so I kept a close eye on it.

Hope everyone has a relaxing day tomorrow, heard there will be rain.

September 1, 2010

Wednesday-Busy day but a good one. I went to the gym and then went to SH to meet with my principal and Mary Picarello was there. I talked to my replacement and things look good. I really want to be back!! I know it will happen!

We found out today that Casey will be deployed. All we know is soon. Don't know where or when. UGH. Of course, we are upset. Cody consoled me saying this is what he trained to do. It is hard to think about.

We ran a few errands and got smoothies and then hung out at home. It was so hot and disgusting here. A good day to stay in and chill. Thank God for ac!!!

August 31, 2010

Tuesday- We had our appt at Sloan. All went really well. They are concerned about the way the fistulas are healing so may have to do something about that. Let's hope that with the sitz baths we are doing 3x a day we can get them healed this week. We got home and were both so tired so we took a snooze. I woke up in about an hour and we went to the soccer tryouts. Brittany (Cody's girlfriend) is on one field and the varsity team on the other. It was so disgusting hot and smelly out. I had a hard time hanging but he was so happy. The boys are always glad to see him and they were sharing funny stories about Cody playing soccer. We then left to go to Subway and Brittany was going so Cody rode with her, she drives. It was cute. I met them there and gave them money and went to run errands and met them back at home. So cute. I am so happy for him. He seems so happy. So working on increasing the calories in his feeds since he has more energy he is burning more. Looks like things are definitely improving!