August 30, 2010

Monday-Today was a good day. I got up and went to the gym. I need to get back to that and I am trying. We talked to the pilots today and met them at 1:00. We went to lunch and then to Dave and Buster's. We had a fun time and Cody enjoyed himself. We drove them to the race track because one of the pilots actually used to have a rc car. When we walked in, Cody introduced them as "my pilots". It was so cute. He liked hanging with them. We came home and he ate and then we went to the soccer field to watch the tryouts. It was so cute to see the entire team come over and high five him. It brought me to tears. He said he misses it and breaks my heart. I spoke with the coach and they are hopefully going to give him something to do. He knows he cannot commit to every game, but the ones we are there, he can help out. He said with the players and I just hung out on the grass. His girlfriend, Brittany was trying out for the girls team so we saw her too. It was cute. It was a great day and it is nice to see his stamina and see him getting stronger. Keep going Cody!!

August 28, 2010

Saturday-Well, it was a short trip but Cody did it and Casey graduated! All good!!

We got up early and went to breakfast. Casey went to pick up a friend from here that is doing Airborne school so he came to lunch too. He was here the day Casey left and Cody and I have seen him a few times. Nice guy, good luck, Frank.

We got to the airport around 11. The pilots are great. Everyone got to come look at the plane. I was hoping Casey and Nicole would have decided to just come with us.

The plane ride was awesome. Cody passed out. I knew he was tired. He was so happy to see his brother. I hope he gets well so he can get down to GA to visit him. I need to go too. Seeing all the beaches and the coastline from the plane makes me miss it all. I am thinking I should work on a weekend away, to FL before I go back to work. (Staying out till Nov. 29) Cody could stay with his dad and I think it could work. Have to see. I need to go see my family too.

We got off the plane and Cody invited the pilots to lunch. They are really nice guys, but married :) We met them at Friday's then we went for ice cream and we drove them back to their hotel. They are here till Tuesday. They mentioned Dave and Buster's so going with them there on Monday. Just my luck, two cute pilots and married ones!! So funny. I told my dad this and he says I need to go for the owner of the plane. So funny.

Hope everyone had a good weekend. The weather seems really nice. Thanks for all your good wishes and prayers.

August 27, 2010

Friday-We all got up and were out by 8:30 and headed back to the base. There was a long walk and we drove right up front. I told Nicole it was worth the try. Then once there, I spoke with a soldier and told him about Cody and he let us in. Thank god for Roy there helping me with everything. We had a front row seat and spotted Casey right away. He was sitting in the bleachers. The demonstration was good and I am just glad it is over and I did not know about all this stuff until after Casey did it. (He did not come in on a plane as we thought.) He was in the front of his battalion as a leader and called out the commands. I am soooo proud of him but I was so emotional. Once the guest speaker started and he talked about family, I lost it. Once it was over, we walked down to Casey and Nicole pinned his ranger tab on him. Then we left and Casey wanted to go to Fuddruckers for lunch. The plans were to to the Infantry museum but we came out and Nicole's battery was dead. We had two other cars there. So we had to hang out while a few went and replaced the battery. We took a ride to the army store and the museum was closed. We were all getting tired at this point. The grandparents left and so did Roy. The rest of us went to dinner, more barbeque. Then back to the room and we crashed early. It was a great day!! Cody enjoyed himself and was so glad to see Casey. I am so proud of my sons. This was a HUGE accomplishment for Casey. It is scary seeing all the demonstrations thinking about where this happens for real and I guess that is what gets me upset. Casey is a smart soldier so I know he will do the right thing and I pray that he is safe!

August 26, 2010

Thursday-We got up nice and early and got to Republic Airport. We were so excited. The plane pulled in and was definitely a lear jet! The pilot came in and he was cute! Unfortunately he was also married. We took a golf cart ride out to the plane. Cody was soooo excited. We had a smooth flight and Cody could have sat in the cockpit but his back prevented him from doing that. He did stand there and talked to the pilots about the controls. I was busy looking at magazines about estates, yachts, exotic islands and other expensive toys. I was dreaming for a while.

We landed and I saw a welcome sign for Cody hanging on the fence. Nicole was there with Cody's dad and grandparents. I made sure he was the first one out too. They were really excited to see him. The pilots were awesome. So we went to check into the hotel. So far so good. We got lunch and hung around waiting to go get Casey at 6. Cody and I rode with Nicole to the base. We waited and Casey came out with a huge bag and came to me first. I was crying of course. He looked so good but a little beat up. We left, went and showered and then we to dinner. Casey wanted to go to Smokey Bones. Nicole's parents arrived too. Roy came in late that night. It was good to have him there too. We were tired and we so excited about the graduation. Day one was perfect!

Please say a prayer to the SooHoo's. Today is 5 years since our sweet boy, Tyler passed away. He is missed each and every day.

August 25, 2010

Wednesday-Well what started out as a good day ended with a little chaos.

Cody was all set to go to the movies and stepped back into the house at the last minute to get some cologne, and he tweaked his back. He was in pain and we called the girls to come here instead. It hurts his pride. He was feeling so good and moving around well and then one little sudden move sent him into spasm. So the girls came here and watched a movies, ate pizza and played games. I got the last minute things done so that was good.

Then around 8pm, I noticed Xena lying around and panting. She was drooling too. When I called her get up, she came into the hallway and peed. Not like her at all! So I quickly got her lease and walked her outside, just in case she was losing it all. Cody started to cry at this point and was so worried. I got his friend, Tom to come help me and took her to an emergence vet. She was not looking like herself and was a mush. She is usually this happy kinda dog. So they examined her ($200) and said nothing basically. Her temp was fine and the drooling could mean she was nauseous. Like I need this now! There was a $652 estimate if we wanted blood work and an xray. Or she could get the shot for her nauseous and see how she does. Thank God for Moira. I called her and she said take her home and she would come and see how she is. We got the shot and Xena came out almost back to herself. Weird!! I hope that maybe she ate something that did not sit well or that is was just, who knows??? We got her home, Cody was still so upset. Moira came and the night ended around 10pm with her. Thank God for Moira! I hope Xena will have a good night and she will be fine. Moira knows where to take her if not. Tom took Jazzy home and we settled down for some sleep around 11. Phew! I got almost 2 years with no sickness from the dogs and now the night before we leave, first time in over 2 years, and this happens! Hoping it all works out!!! Night all.

August 24, 2010

Tuesday-well, today we got the drs blessing and are set for the trip. I have a lot to do over here to get things ready. I am making sure I bring extra pills just in case. We are allowed to skip his IV for 2 days and that will help with not having to bring all that stuff. His potassium and magnesium are still low so having to keep that going. He got a dose today and will get more in pills and we are looking at foods with both. He does not eat bananas so looking for other foods.

We had to go to Friday's for a late lunch and he ate a little there. He is napping now and I should be too and he wants more sausage when he gets up. It will be an early night for me for sure. It is a dreary night too so that should help. One more day and we are off....I am so nervous about it but I am sure he will be fine! Can't wait to see Casey. He may be deployed soon and that worries me so it will be good to see him...keep praying for us.

August 23, 2010

Monday-Lazy day and it seems like I ran errands all day. Trying to get things worked out for the trip. Cody went to physical therapy and did really well again! He ate 3 sausages today!!

He stayed up late with me till after 11 and Casey called about that time. It was really good to hear his voice and Cody (and me!) cannot wait to see him. We are leaving early Thursday and will see him that afternoon. It was another good day....I missed going to Corinne's today and missed seeing everyone and their babies. I know I could have gone but I cannot be that far away from Cody, just in case. We were both going and were going to hang out by the pool but what a yucky day!

August 22, 2010

Sunday and finally so GREAT news! Casey passed his final ranger phase and is a full fledged US ARMY RANGER!! So proud of him. I missed his call this morning but heard from Nicole. It is 8 pm and I am waiting for him to call. I cannot wait to see him and God willing, Cody and I will be flying down on Thursday! I am praying hard for this to happen.

Today we had a great day. Happy Birthday to my good friend, Corinne.

Cody and I went to TGIF's for lunch and then we had the Ducks game. He invited Brittany to come and it was fun until it rained. We decided to leave early and he wanted Subway so I dropped he and her off and went to get the movie he wanted. They are here now watching a movie. Not sure what became of the 'relationship' part but maybe he will tell. I am not going to press for the info. It was so good to see him like this.

I am so proud of my boys. They are strong troopers and so amazing. Both have a lot going on and are succeeding in their toughest endeavors. Cody will get there too. I know it. One day at a time and we are doing well with that motto.

Enjoy the rainy Sunday night. It was a good day despite the rain.

August 21, 2010

Saturday-Good day today. I got out for a little while and had lunch with a friend and Cody hung here. He was good. When I got back, he was ready to get out so we could not think of anything to do so we went to the Tanger outlets in Deer Park. We needed a gift so we took a long walk and he did well. We drove home and he wanted Subway. He had his sausage again today and ate the whole thing. He feels good. We hung out tonight and all was pretty good. He felt nauseous right before bed and I am hoping it just passes and that is it. He was so cute today. Tomorrow we have the LI Ducks game and he is having a girl come. I thought I was right in guessing that he liked her. Well, today he told me he was going to 'ask her out'. I guess this is meaning to be his girlfriend. I told him to wait until the game is over, just in case. So cute. So let's hope it does not rain and we can go to the game. I was told I have to go take a walk at some point. Funny.

So hoping for a quiet night here...sweet dreams.

august 20, 2010

Friday-Well, I am happy to say Cody is feeling better than he has felt in a long time. I hope it stays that way and he continues to get better. Today he scared the crap out of me. He usually sleeps late. Today he comes walking out of his room around 9 and I thought I was seeing a ghost. He scared me. He smiled and was up. We hung out most of the morning and then we went to get groceries. He came with me and picked out a few things. He came home and ate hot italian sausage. And he ate one whole one!! He was so happy. We then went to the car shop to get the new shocks for his truck so he hung out there for a little while. He loves those guys. It is good for him. We went to Subway then and he ate there. He is doing good with the eating. We had a nice conversation there. I asked him if he ever thought about all this. I asked him if he remembered that first day at Huntington Hospital and he said no. He said he did remember at Schneider's when we told him he had cancer and he lost it. He said he thought he was going to die and he got upset. He asked me if I thought he was going to also. He then said it has changed him and he now does not worry about the little things. He said when he hears people complaining or talking about problems, he thinks they really do not have problems. He said he still feels so lucky. It does change you and it changed him.

Our friends continue to amaze me. We got a card and a mass card from a teacher I work with. It came out of nowhere and we are so lucky. We also got a letter from a friend that Cody played soccer with. His family sent a donation to "Friends of Karen". They are a foundation that helps us with some of our bills. So special, thanks Amy!!!! We are truly blessed. With all that we go through on a daily basis, it is nice to get the mail and see how many friends think of us!

Cody feels great!! It brings me to tears. I hope to God he stays that way and we can make this trip. I hope to God that Casey passes. Keep your fingers crossed! And your toes for that matter!!

A friend from high school that reconnected with had a devastating loss. Her husband had leukemia. We had talked about all this as her husband was preparing for a bone marrow transplant next month. They had a memorial service for him and I hope she and her girls are hanging in there. It was kinda a shock as he was doing so well too. As you know, it hit close to home and I am uspet by this.

Have a good weekend everyone!

August 19, 2010

Thursday-So today we had to go back to Sloan for bloodowork. Cody feels so good! I dropped him off up front since the parking garage line was so long. He goes up and checks in and gets started. He needs to do that every now and then. His magnesium is still low so he needed a bolus of that. He is doing well otherwise. Counts are good, he looks good and seems to be getting more energy which is awesome. We got home around 2 and we went to TGIF's for lunch, a late lunch. Then we drove and ran some errands. He wanted to stay out so we took a ride and visited a friend. Then he wanted Subway. I am glad he is eating. He seems so happy that he can eat. The bathroom issues are so much better too! I hope he stays this way. In one week, we will see Casey, if all works. Please add him to your prayers. Love my boys!!!

August 18, 2010

Wednesday-Today was a good day. I think Cody is becoming stronger. We met the girls from 2nd grade for lunch and he nibbled there. Then we made a few stops and he was good. I brought him home and I ran to Kohl's and bought nothing. Thought I might find something new for Casey's graduation. Still trying to work out the details of that trip. I got a call from our girl from the Islanders, Ann and she was calling to tell us to pick the games we want to come to. We are getting the royal treatment again!! we are so lucky. There is still a slim chance that Richard could re-sign but it does not look too good. Some of the really good guys did leave but there are still some good ones there we know. We are excited and looking forward to the games!! Let's Go Islanders!!

Then we went to physical therapy. After saying he did not want to go, we go in and he says he was ready to work out! No more heat or massage, let's work out. He did well too! Then we came home and he ate sausage and peppers. He eats a few bites of everything. Then he ate a salad, some celery, some crackers, tried an egg and felt pretty good. He stayed up till 9 and seems to feel pretty good. We head in tomorrow for levels and bloodwork. All seems good over here for today...Good to see the girls too!! Miss you guys!

PS The pic is Cody chilling and spoiling his pups!!! Lucky dogs!

August 17, 2010

Tuesday- I am all confused as to what day it is since we usually go to Sloan on Tuesday. We had a nice day. Moira, our dog sitter, got a mini cooper. Cody loves her even more now! She came over and took us for a ride. We went to Victor's and a few teachers were there. I even got to the gym today too. We ended up taking a ride and just enjoyed her car. It is bigger than I thought and a really fun car. I hope Cody gets his wish some day. He got a text from his hockey player today. We miss him. He is most likely not coming back to the Islanders but we hope we get to see him at some point. I know Cody would like that. We are looking forward to the season.

We took a nice drive this evening to the beach at West Neck with Cody driving. He did pretty well too. Let's hope for a quiet night.

August 16, 2010

Monday-Early day into the city for an appt. Cody is doing well. His antibiotic level was good. His magnesium was low though and he feels good. Thank goodness. I got nervous when I realized that the trip to GA is next week. Some arrangements were made and we are taking a private jet down to GA. It will be nicer than what was originally planned with fewer stops. I am sure there is a bathroom on the plane too. Thanks to Cody's dad. He had a connection and did not know he did so lucky that we are going on a nicer plane. I am nervous for sure and hoping it all works out with Casey and Cody stays healthy. We went into the teen room this time and played a few board games with 4 other kids. It was good for Cody to do that. He had a good time I think. Overall a good visit to Sloan.

August 16, 2010

Sunday- I am wishing I could have stayed in my pj's all day today. I am really tired. We went to breakfast with Cody's dad's and his friend. Then we decided to take a ride to the race track. Cody has not been there in months but he wanted to show his dad's friend. He drove home which he has not done in a loooong time. We chilled at home this afternoon. Another good day. We head to Sloan tomorrow for bloodwork...Hope everyone had a good weekend..oxoxo

August 15, 2010

Saturday- Nice day back home. I did not know that Cody's dad's friend was coming here. So we hung out with him in the afternoon/early evening. Cody felt pretty good and is just so glad to be home. I had a lot to do but things are falling back into place. I am hopeful that the new steroid will work and things will be good. We are really trying now to get to GA for August 27, Casey's graduation. Not much longer. I really have to get my boys together. We stayed over at Cody's dad's till around 9:30 tonight. All is good....

August 13, 2010

Friday- Friday the 13th...all is good so far. We are home. We got here around 2 today. We hung out and did a few things and then Cody's dad came over. I had lots to do around here. At one point Cody felt nauseous but I think he feels ok. His pressure was up tonight and I had to call in but looks like it is under control now. Looking forward to a quiet weekend.

Night night...

August 12, 2010

Thursday-Well they got us up nice and early and we went down for the pic line. Yes, it got in and works so one step closer to being home. We chilled out in the room most of the morning and had a quiet day. Cody ate and felt pretty good and he looked good. He is worried about the swelling of his feet from his fluids and his hand is puffy from one of the IV's. I actually stepped out in the afternoon and he hung out and watched a movie.

We are so lucky to have the best nurses there. We get personalized attention in this unit and they love Cody there. Nite all...

August 11, 2010

Wednesday-Long day and no pic line. He got bumped. He vomited once today and was nauseous but I think it was the meds. He ended up eating later in the day. I had a talk with you the dr and she explained a lot to me and what the plan is for going home. She is switching a few things but sounds like it will be better. I hope so anyway. We are so lucky to be here for sure. She said he should be ok to go to GA too at the end of the month.

I made the call today to ask for more time off. I am hoping it all works out. Just not ready yet. Can't take off once a week and that is a good week. We shall see.

Have a good night everyone..wish us luck for tomorrow's procedure and then we should be home in a day or two...night

August 10, 2010

Tuesday-Today was a pretty good day after a not so good night. After vomiting at one point, his IV blew so we had to start a new one again which is not fun.

Cody was in a pretty good mood and he ate a bit of salad 2x today. His diarrhea was not so bad and he tolerated his feeds at a very low rate. I really feel it was the new lacto probiotic that made him sick. The pic line is going in tomorrow so that will help with his IV's and he will not have to be poked so much. If he can tolerate his feeds again, then home on Thursday or Friday.

They are sending me home with an emergency dose of of the stress steroids. It is a deeper shot but I will do it if I need to. Not happy about it, but I will do it.

He has become a little more obsessive again but I know that is because of the steroids. Looking forward to getting home and to get him back on a better schedule.

August 9, 2010

Monday-So what we are trying to find out now is if this incident is a result of his adrenal gland malfunctioning or was there an infection of some kind. The way I understand it is that the adrenal glands produce cortisone in times of stress. Because Cody has been getting all the steroids his adrenal glands might have become sluggish and there was a miscommunication from his brain. His gland has not needed to make some much cortisone because he was being given it. So it caused this reaction when we went down even more on the steroids on Thursday. If the endocrine drs do not feel this is the case then he will be treated as a blood infection requiring the antibiotics for a while.

He felt good today and I left for a while. We had a nurse here that we know well and she got him up and took him for a walk and hung out with him. He tried to nap later in the day but had a lot of interruptions. Jim came up this evening and we walked more. Earlier today he got the probiotic that the dr at NYU recommended (and interestingly enough, I gave it to him on Friday for the first time) and tonight he became nauseous and vomited again. He took one sip with his pills and up everything came almost instantly. We started his feeds at a very slow rate and I do not think it was that. He felt awful and fell alseep a little while ago.

Poor Cody- to see him so nauseous breaks my heart...

August 8, 2010

Sunday-Quiet day here and a tough one. Cody wants to eat and he wants to eat a salad. His counts dropped which is preventing him from being allowed to eat raw foods, making him upset and miserable. I am worried about his counts but by the end of the day they were slowly creeping back up. The drop is from the shock that his system went into. He had a great night without any movements but today it is extremely painful when he goes. Thank god he is not going as much. He was in a lot of pain tonight and needed some pain meds to settle him down. Poor thing. Then he felt all mushy. I am kinda briefing him about Casey's graduation and us not going. I am not sure we will be able to go. He was crying tonight saying all he wants to do is to see Casey. breaks my heart. Hoping for better news tomorrow.

Thinking about you Casey and hoping all is well as you complete this last phase...oxoxoxo

August 7, 2010

Saturday-First of all, Happy Anniversary to my dad and stepmom. Hard to believe you have been together this many years. Someone is getting old! :) Love you both!

Today was a long day. Cody improved little by little. The xray from last night showed some clouding in his lungs so he had another one today. It showed the same but nothing to be worried about. The long use of steroids have caused an overload and his adrenal glands are not working too well. These glands work to help your body in times of stress like last night. They are described as the 'flight or fight' glands. I hope they mellow out here soon. His cousins were here today and he was up and played games. They left for lunch then came back for more games. I am surprised how long Cody stayed up and he just went to be now around 9:30. He told me today that he feels so good that something must have been brewing for a long time. I think we are here for a while. He will get to leave this unit but is here for at least a week.

Thanks again to our neighbors and our dog sitters...we are so lucky to have you!!!

Going to get some sleep myself...night all

August 6, 2010

Friday- Well today started with Cody vomiting. He felt good most of the day until around 4. We went with his cousins to the movies and Cody ended up vomiting there and then diarrhea. He was vomiting and went down quick. We drove home and he was a mess and could not get out of the car. I shot right over to Plainview and was on the phone with Sloan. He could not walk and was becoming unresponsive. He could not stop vomiting and just kept soiling himself. They started fluids, antibiotics and stress dose steroids. They pulled his picc line and started several IV's. We were transported here to Sloan's Observation unit, the POU, and he is under careful watch. There may be something with his adrenal glands and it appears that the fistulas are oozing. There is an internal one so it is causing him some pain for sure. He is very upset. We got here around 12 and will be here for a while. Not sure what else the plan. I will keep you posted. ox

August 5, 2010

Thursday-I got up early today and did the car swap. That is basically what I did.

We had an appt at Sloan today and his magnesium was lower than Tuesday. I am a little worried about that but hoping it is because of the diarrhea. So he needed another bolus and then we are giving him some pills here at home. We also got some kinda bad news and that is that there is a fistula on the inside too. NYU read the MRI again and found this. So he in on another antibiotic to make him feel worse again. I hope I can get him on a schedule with his anti nausea med so he can function and not feel so nauseous. I feel bad for him and he gets upset too.

We have to go back on Sunday for more bloodwork. Busy few days but let's hope he starts to feel better again soon. His cousins are coming tomorrow and I hope he can enjoy his time with them.

August 4, 2010

Wednesday-A lazy day for sure. Cody stayed in all day and that was fine with me. He is still feeling nauseous so it is best to be home. He is having diarrhea again and just not feeling so great. It was so hot anyway so best to just hang home.

Stay cool, my friends.

August 3, 2010

Tuesday-We slept a little later today and headed in around 10. Cody's cousins met us there. One of them wants to be a nurse so Cody showed her around and we introduced her to a NP to talk to. They waited while we saw the drs and then Cody vomited. We took a little more time and waited for his counts. All was good except magnesium was very low for some reason. So we had to get a dose of IV mag and then we took some oral ones home. Unfortunately we have to go back on Thursday to get that checked. We did come down on the steriods, again we have to taper it.

The NYU dr called and told me her plan and as of now it is really just increasing one of the meds for a 2-3 weeks and we will go from there. We decided to take Cody's cousin to Dylan's Candy Bar and then we got a late lunch. They wanted to do another thing in the city and Cody was upset when I told him he could not go. He got really upset again. He calmed down and tonight he reminded me of that letter he wrote me on Mother's day. I know it is hard mentally and it breaks my heart that he cannot be normal. We cried tonight and he is better. A bunch of his cousins are coming this weekend so I hope he can get some time alone with them. I explained how hard it would be if something happened and his back went out or worse the bathroom issue. His cousins would not know what to do and he would be devastated. So we are working on it...long road and still far to go but we will get there...LOVE YOU CODY!!

We both miss Casey so much and I know Cody wishes he could talk to him more. OXOXOX

August 2, 2010

Monday- Lots of phone calls to make today and did not get too far. Trying to get Cody to the gastro dr and they were closed today. Kinda strange. I am wishing we could go tomorrow and go to the clinic at Sloan and then to NYU but not sure that could happen. Cody was ok today and we went and got some food at the store. It is amazing how much I spend when he is with me.

He was nauseous and did vomit and seems like he has more diarrhea. We are adjusting the meds so maybe it is that. We will discuss it again tomorrow. I do think he feels better. We went to physical therapy. It was not much but he did it. I want him to keep at it so he can get stronger. We took a little walk and he does well.

Praying a little extra that we continue this uphill trend!!

August 1, 2010

Sunday-I cannot believe it is August. I know I say that every month but it is going by waaaaayyy to fast!

Things here are good. Cody seems to have a skip in his slow step now that he knows things are better. He was up today and went to hang at his dad's for a little while. I have to decide on my car as my lease is up. I really hate that I have to do this at this time but if I can get lower payments than I want that for sure. And now since I am a 'loyal nissan customer' I get special consideration. I deal with the manager there so it helps for sure. No middle man. If anyone needs a new car, consider going this way. So tomorrow I have to finalize that. I do have some damage on the Murano so have to work that out. Gotta love those parking garages. I will do more inspection with them from now on. Not much choice for parking in NYC. And...it is just a car in my eyes.

We did that and then went to the movies with our 'dog sitters', Moira and Tom. Cody really wanted to see "Salt" with Angelina Jolie. Not my first choice but I went. It was good to have Moira and Tom with us for a change and not just taking care of our pets. Taking care of our pets is a HUGE bonus for us and we are so lucky to have them. Both dogs come back and are happy and we know they are well taken care of. It is a lot for them but thankfully they have great caretakers and it is less stressful for them.

We hung out at home, Cody is trying to eat but no appetite yet. He is working on it. We head back to Sloan on Tuesday.