November 29, 2010

Monday and I am back at work! I had a hard time falling asleep and Cody did too. I think he was anxious for me and he was def excited. I left him this morning after I woke him for his pills and he said "goodbye, my little teacher". So sweet!! Everything went off without a hitch but we did get his feeding tube clogged for a few. No sweat, we unclogged. I have had a song for Casey and I finally found one for Cody. It is "When You Believe" by Mariah Carey. This is what I listened to on the way to work and of course, I lost it. They were happy tears and I just pray that it stays this way. Everyone at work was great and welcomed me with lots of hugs. My principal made a special announcement and I saw a lot of the older kids I taught. It was weird because a big group of them are in 5th grade, some I had in kindergarten and some in 2nd grade. One boy said he was was so glad I was back and that brought me to tears at the end of the day. The class is cute, the sub did a GREAT job and looks like I will have a lot of extra goodies and ideas from her too. It will be really fun working with my friend Mary Picarello and my other friend Corinne Short that has been in 2nd grade for a while now. Should be a good year.

Cody did well. He had 2 tutors today and did not really get to be alone. Tomorrow he goes to Sloan with his dad for the first time. Should be interesting.

I am pooped and am trying to get things done so I can go to bed soon...nite all.

November 28, 2010

Sunday-Well, since I fell asleep last night, I got up to watch the rest of my movie. It was "Eat, Pray, Love". I really like Julia Roberts so I wanted to see it. It was cute and makes ya think about life. We took a stroll around the mall and tried to do some shopping. We ended up taking a ride to Woodbury to get a present. Then we settled back at home and chilled. It was a nice day. I am excited about tomorrow but nervous. Tonight before Cody went to sleep he said 'Good night my teacher". So adorable. I know he is ready for me to go back too...Sweet boy!

November 27, 2010

Saturday-Well I had to finish up some shopping today so I ran out early. Then Cody wanted to take a ride out to Sayville and Oakdale to see the areas around Dowling College. It was a nice day so we just took a ride. Then we went and rented movies. It was a nice day. I have lots to do to get ready for work.

November 26, 2010

Friday-Well, the Islanders ended their 14 game losing streak by beating the NJ Devils today. It was a great game too. I did a little shopping and took Cody to the grocery store so he could get some things to eat. He seems excited to be home alone. We both need this.

I am trying to get prepared for work and find something to wear. Sitting around in the hospitals for 2 years and not exercising did not help this body. UGH. So going to do a little shopping tomorrow.

Have a good night everyone...

November 25, 2010

Happy Thanksgiving to all of you. We have a lot to be thankful for. I got up early and made the turkey for Cody and I. We are having a quiet day but we are thankful. Last year, we were in the hospital for Thanksgiving. Maybe go to a movie later but not sure.

Casey just called from his cruise. SO happy to hear from he and Nicole. They are having a good time, as you can imagine.

We did not go to a movie but watched one here instead. It was yucky out and just nice to stay home. We were glad to be home this year, Hope everyone had a nice day.

November 24, 2010

Wednesday-I got up nice and early and went to SH to meet my class. The kids are cute and had great questions. I was going to read a book but I decided to just talk with them. They shared a few things about themselves and then I talked a little. They asked about Cody and I was happt to answer. I miss my friends there and it will be so nice to get back in the swing of things. I am looking forward to it.

This afternoon we got a pie delivery from the Glassers..so yummy! Thanks!

Great day and fun at the hockey game. They almost won in over time.

We went with Cody's girlfriend, her sister and boyfriend. Kinda like a double day but with mom.

November 23, 2010

Tuesday-We had our visit at Sloan and we got great news. Cody is over the 50 Kilo mark which made everyone happy. That is 110 pounds! His pre transplant weight was 52 kilos so he is doing well! His skin is a little flared and we think it is either allergies or GVH of the skin. We have some new creams to try and I personally, think it is dry skin. We have to keep an eye on it.

Yesterday and Sunday I baked my banana/chocolate chip bread and Cody had fun giving it out to his NP's and dr's. I will miss seeing them every week but I know I can go at anytime for the visits. Cody will go with his dad next Tuesday and I will go probably over the vacation.

We went to meet the kidney specialist at New York Hospital too today. He is concerned about the protein in Cody's urine. Cody is on a medication for blood pressure which can cause this but he needs the blood pressure medicine. We have to do a few more urine studies and see how it goes. I do not think it is anything serious but we have to look into it. I took some papers over to the kidney dr with us. I saw the one that our dr at Sloan wrote discussing Cody. She wrote: "Despite the hell he has been through (meaning Cody) including HHV6 encepalitis (brain swelling) from which he has full recovery, he is a wonderful kid with a great sense of humor."

Thanks, Dr. K.

We also got a call from Dowling College saying because of Cody's wonderful GPA, he does not have to take the SAT for this school. It is Cody's first choice right now so he was thrilled.

Another great call was from the soccer coach. He nominated Cody for a special 'courage award' given by a military captain and Cody got it. We have a dinner to go to and Cody will receive that. He will be surprised. There will be over 1000 people there. So exciting. That happens in 2 weeks. So happy for him.

Pretty good day and looking forward to meeting my class tomorrow!!!

November 22, 2010

Monday-Well, here is the last Monday before I go back to work. Yes, I am anxious. I know it will be fine. We had lots to do today and the day flew by. Cody feels great and is eating more. I am happy about that for sure. Let's hope this week is a good one.

November 21, 2010

Sunday-Well today, Casey and Nicole left for their cruise! I know they are having a blast. I am so envious. I know I will go again, just waiting. Matter of fact, I asked my dad and stepmom to go with me next year. I would love that!

Cody felt pretty good today and we did not do much. Well, I did. I baked for my hospital friends and raked some leaves. So exhausted. Cody took a ride to the race track and hung there for a little while. Then he went to eat and we are chilling at home tonight. I am really pooped.

Hope the weekend was good for everyone...oxoxoxo

November 20, 2010

Saturday- A pretty good day. Cody worked on some homework and studied with a friend for his Global exam. He is working hard and I am praying that he gets a passing score.

We hung around and my friend Jean came to the game with us. We picked up Cody's friend, Matt Russo as they gave us extra tickets. Cody sat with Matt for the game and I sat with Jean. It was fun but the Islanders lost....again.

It was a nice day..

November 19, 2010

Friday-For some reason, Cody did not sleep too well last night. He was up at like 4. I ended up giving him Benadryl to help him sleep. Not sure what that was all about.

We were up early and went to take a tour of Farmingdale College here on 110. It is huge and Cody did not like the impersonal feel you get there. It was a lot of walking and I just kept thinking of him walking around in bad weather or something. Lots of walking. I did not picture him there. We will see how it goes.

Hanging home tonight and relaxing....

November 18, 2010

Thursday-Not much going on today. Cody had his tutor and we did some homework and filled out a college application. He is really happy to be doing this. I am happy for him and I admire his drive!

November 17, 2010

Wednesday-Very busy day. We took a ride out to Dowling College and went for a tour. It is a beautiful campus and nice and small. Cody was really excited and liked it there...a lot!

I think he would fit in there for sure.

We made it home in time for his tutor and then about halfway through he felt nauseous. We cut the session early and he took a nap. I ran to pick up his friend Matt. He has session hockey tix too so we gave him a ride. I tried to find someone for the extra seat but could not give it away. They are on a losing streak so I guess that is why. After he slept and rested, he felt better so we went to the game.

It was sad to see them lose again but we had a good time....

November 16, 2010

Tuesday-We both slept like rocks last night. I slept right through his feeding pump beating and he did not hear it right next to his head. We will have to play catch up today. We were up and ready early and went up to the school to talk to his guidance counselor about college. He is feeling like we are behind so he wanted to go. We are going to take a look at a few local ones this week and start with the applications It is so good that he is driven. He gave a recommendation form to his soccer coach to get a letter and the counselor is handing out a few more.

We did some homework today and he ate pretty well, thank goodness. I am so glad his appetite is back.

November 15, 2010

Monday-Long day but we are home. Everything went well. Cody got his mediport. They had a hard time this morning getting an IV in so I know we made the right choice. We got there nice and early and we went to the 9th floor to see his fav night nurse. He loves Erin! She is this dark haired, light eyes, Irish nurse. She spent a lot of nights with him.

The port procedure was about 12 today but by the time we got back up to the 9th floor, it was around 4. Cody nibbled on some chips and then he had to get an infusion and we left around 6 pm. It was a long day. Hope everyone had a great Monday...oxoxoxox

November 14, 2010

Sunday-Long day at Long Island Raceway but fun. I know Cody had a good time. He stayed the whole day and I ran around and then did some work in the car. He loves hanging there. Early night for us since we have to leave here at 6 for the city so he can get his mediport.

For the record, for the past few nights, I have been sleeping up in my room. We got baby monitors so I can hear him and it is so nice to have some normalcy here for bed. Baby steps for all of us...Hope everyone enjoyed the nice weather this weekend!!!

November 13, 2010

Saturday-Today we went to HSE's boys volleyball county championship game and they won! It was great. We drive 3 girls there. We ran to the hobby store and Cody spent a gift card. He is eating a bit again so we went to eat. We hung out here at home for the evening until he went to watch a movie with his dad. It was a good day.

November 12, 2010

Friday-Today was a great day. I went to talk with my principal about my return. We had a nice chat and I am happy to be returning. I hung around and saw my friends but did not go into the class. I am going to set up a time to go meet the kids in a week or so. Should be fun.

Cody actually had his gfriend pick him up and they went to another girl's house to watch a movie. He did well. Then we came home and he went to hang with his dad. I went to get a bite to eat with Jean and actually had a glass of wine!! So excited to have some kind of normalcy.

All in all, a good day!

November 11, 2010

Thursday-Happy Veteran's Day...so today started out funny. I texted Casey and said "So proud of you, my boy". The funny boy he is writes back, 'thank you my mom'. So funny. Well the MRI came back and we found out that Cody has a stress fracture in his ankle. He needed to be fitted for an air cast or boot. So I took him to the place I took Casey and we are all set. We hung out and his science teacher came and he took a test then Brittany came over. Cody ate a little more today so I think he is clearing the fungus. He cannot do the solution that gave him to rinse with, it is so thick so he tired Listerine and he likes it. So maybe that is working.

Hope everyone enjoyed their day off and thanks to all those that are fighting for us, especially my favorite soldier, Casey.

November 10, 2010

Wednesday-Good day today and Cody ended up eating a little. He decided to try Listerine for his mouth and it helped.

We met with his guidance counselor and the asst principal we know at his school to discuss his return. He is anxious so he wanted to do this. It was a great meeting with Cody feeling so happy and said he could not believe he would say this but he is so glad to be going back to school. His day is Jan 31, for the 3rd quarter. He is really thrilled. He was so cute and did not want to say "what if I need my mom?" so instead he asked "what if I need her?" I know he is nervous. We will do a walk through so he can see where he can go if he needs help. He can just walk out. He needed to hear this for himself. He will go back at 11 for two classes and then he can stay for lunch to socialize or just leave. It will all work out and he is excited.

He worked hard with his tutor then we went to the county playoff game for volleyball. So exciting and HHH won!!

Waiting to hear on MRI results for his ankle.

November 9, 2010

Tuesday-A very long day at Sloan today but made lots of progress. I should have known the not eating was attributed to something in his mouth. He has that thrush or fungus again, that babies get. He is on antibiotics and that contributes to it. So that makes sense. All he was drinking was sprite so that I have to be aware of that next time. He got some stuff to swish but really makes him nauseous. We will see.

His pic line was oozing last night and he was all worked up. He has the skin rash again so I really wanted to see about taking this out. After a long and stressful discussion, the pic line was pulled. He is not longer doing the daily infusion at home. We will see how it goes. He is set for a mediport on Monday. We were in discussion about whether to get the port or not. The port is under the skin and allows his freedom without being accessed except for when we need it to be like at the hospital. There is a lower risk of it getting infected since it is not accessed and under the skin so lower risk of bacteria. We thought long and hard about not even getting this as it is surgery but to worry about getting IV's in every time we go to the hospital would add more stress and anxiety. He is very anxious lately. We did not get to speak to the psychiatrist as she was away today. We are giving him a little more of a medication for anxiety. This could also be heightened because of me returning to work. He says no, but it could be.

His foot is still bothering him so an MRI was ordered and we got it for today at 5:30. That meant a huge break. He was upset because he could not get to Best Buy to get the new video game he pre-odered. So calls were made and we were supposed to be able to pick it up in the city at Best Buy. We hopped in a cab and were pleasantly disappointed when after we were told we could get it there, we could not. More stress and disappointment for Cody. So I grabbed a quick slice and we headed back down to Sloan. Finally I got him to calm down and take a nap while we waited for the MRI.

We did not get home till almost 8 but we did get the video. He played till around 10 and we called it a night...Phew-LONG Day...

November 8,2010

Monday-today was a busy day but frustrating with Cody eating very few bites. I know we will get to the bottom of it at our visit tomorrow. He had 2 tutors, then we went to the volleyball playoff game again. He gets time with his friends so I do my best to make it happen.

In three weeks from today, I will be returning to work. Crazy. I am nervous and anxious but it will be great to be back with everyone.

Hope your Monday was a good one...

November 7, 2010

Sunday-Well, today did not start out too well. Cody got up and was getting ready to go the race track for the first annual BBQ Race. He felt totally fine but ended up vomiting. Thank goodness it was just that and not sure where it came from. He spent the entire day at the track and had a good time. The car ended up breaking in the end but he enjoyed hanging out. I ran a few errands and forced myself to stay away as much as I could.

It was a long day and we are both tired....sweet dreams

November 6, 2010

Saturday-Great day. I ran around and Cody slept. He got up and we set up for his friend Sammy to come tutor him for the regents exam. Brittany brought her over and they did some studying. Thank God for her.

Then we waited around before we had to go get ready for the game. I had already been emailing Ann, our Islander girl about getting Cody down to see his new fav player, Josh Bailey. After Richard left, Cody decided to pick a new player and Josh was it. Cody had a tough week and has been feeling down about this whole eating thing so I thought this would cheer him up and it did, of course. I kept it a secret through the whole game. We sat with the Russo's, Matt is his friend from school. So right after the game I asked him if he was tired, too tired to maybe go see the players. That brought a HUGE smile to his face. So we said our goodbyes and off we went to see the players. A few came out before Josh did. Josh said hello and shook my hand too, wearing Cody's bracelet mind you, and then took Cody to the locker room. Cody just about jumped over the railing. It was so cute to see him perk up. He spent some time in the locker and saw the newly renovated features and saw most of the players and met the new ones. The new guys want his bracelets too now. Cody comes out beaming and with an autographed stick from Josh. They posed for a quick pic and Cody could not thank Ann enough!! It was a great ending to the night.

November 5, 2010

Friday-TGIF..I tried to keep Cody home most of the day today to rest his ankle. He had a good day and tried eating tonight. He ate a little so I think he felt better. He just seems down lately. I was hoping Casey could get here but doesn't look like that is going to happen. We went to the boys' varsity volleyball playoff game. It was cool seeing the boys play. Cody sat in the middle of the bleachers with all his friends. I tried to give him time. Brittany did not come. She is preparing for her German dance tomorrow. She is a good girl. We ran a few errands, trying to get things organized here. A parent from school is going to help us out when I go back to work. She is really nice and not sure how much we need her but it will be good to have her. Cody seemed ok with it too.

Quiet night and hoping it stays that way. Have a good weekend.

November 4, 2010

Thursday-pretty yucky day here today. I went to my knee dr and found out that my 'good' knee is now my bad knee. The knee with the replacement is ok but will need another replacement in 5 or so years. Not good at all.

Cody was not feeling too well today. He had more diarrhea than usual. He had no appetite and it is really bothering him.

To top it off, we had to go to the shiva call for his friend that passed away from Schneider's hospital. He was 18 and had a brain tumor. It was tough and got worse when we went to see the boy's room. Very tough. Then he did not eat after he suggested we go to the place. It is affecting him mentally now too. While at the call, he got a huge email from Richard his hockey player. He was thrilled!! It was one of the nicest emails he ever got too. I hope they reconnect again soon. He is a special man.

Tough day so going to bed now too...good night all.

November 3, 2010

Wednesday-Long day at Sloan today for IVIG and pentamadine. We are cutting down of the steroids and found out that I was actually coming down too quickly with it. I miscalculated the dose. It was all ok and he is doing fine. He is very worried about any kind of rash for fear it is GVHD of the skin which it is not. He is worried about not wanting to eat too much lately and he lost a half of kilo. He just seems a little stressed lately.

Tonight I talked to Casey and he has some time off, actually more than he thought so I am trying to get him here. It would be good to see him since we will not see him over the holidays. Maybe he and Nicole would drive here. It would be a huge pick me up for Cody.

Pretty good day overall and a good dr visit.

November 2, 2010

Tuesday-we did not go to Sloan today. We switched it so we could go to the playoff game for the boys soccer team. It was a tough game and they lost. The boys were so upset with some of them actually crying. It brought me to tears too. Very sad.

We went to Friday's to eat with Brittany after the game and we did not really eat that much. It was an ok day.

November 1, 2010

Monday-Happy November. Today is my friend, Mary Picarello's bday. She decorated my house with a HUGE 50 for my birthday and I am not yet 50. So it was my turn. Cody slept till 12 and then had his science class and we took off to SH to decorate her car. We had so much fun and did a great job. We got her. Guess I am supposed to be afraid of my bday next year. Oh well.

The rest of the day we just chilled.

October 31, 2010

Sunday and Happy Halloween! Today we started off remembering Tyler SooHoo for his birthday in heaven. We joined the family at the cemetery and it made for a very warm start to the day. Then we went to eat and came home to wait for the kids to come. Cody dressed up in his scary scarecrow costume and scared the little tykes. We did not get many. Bobby his drum teacher came by and said there were a lot of kids at his parents' house so we took a ride over there to scare a few. It was fun but disappointed as to not many kids at all. Where did all the fun go?

Happy Halloween!