february 28, 2009

Sunday-Well, today was a great day. We started off not so good with the blood sugars but got them in line this afternoon. We will talk on Tuesday to see if there is anything else we can do to make this better. I am putting less insulin in his TPN (IV nutrition) tonight so that should help from the dipping numbers we got this morning. Cody spent the early afternoon with his dad and I did a few errands. I even went and got a manicure! The plan was to go to Dave and Buster's to watch the hockey game and Cody went there with his dad. I ended up going because his blood sugar dipped and he needed insulin. My plans got cut for sure but the day was good as far as his stool go. He had a pretty regular day as far as that goes. Thank goodness it is working.

I did find out that Cody ate candy yesterday while I ran to the store. He did not admit it until he found the wrappers and he remembered. I felt bad and I know the steroids are making him nutty with food so we talked and hopefully he will not do that again. His sugars are out of whack so this was not a good thing for him to be eating.

I am happy that he is feeling better and stronger. I pray this path continues. The weather has to get nicer as he gets better. It just goes hand in hand.

Casey is off for his 3 week no contact training period. I got a text this morning before he turned his phone in or off. Nicole is moving to their new apartment and her parents are helping her. I am proud of her too.

I hope everyone has a good week!

february 27, 2009

Saturday-Cody slept pretty good last night. He woke up at 8 with a low blood sugar. This is scary. He was very thirsty and shaking. I had to give him his sugar pills and waited for it to come back up. If it is not one, it is another. Well, all day this was an issue only with it going high during the day. It was a day of fingers sticks and insulin. He ate some pretzels today. He actually emailed the doctor to ask and I made chicken broth with noodles. He ate that with crackers. He went to physical therapy and we ran some errands. He seems to be stronger and is not requiring naps which is good. His dad came later in the day with his family and we played a game.

It was a good day. Just praying that the food does not cause irritation.

february 26, 2009

Friday-We got up nice and early. Cody slept well but I was too worried about him. I did not have the necessary stuff I needed for the night so I was worried. The pump they gave him for his IV fluids was rather loud too. Cody finally had a bowel movement this morning without blood. We had to do the laundry at the Ronald house (part of the reason it is so cheap-no maid service) so we had to wait for it. The shuttles were all covered with snow so we decided it was best to walk to few blocks to Sloan. We would have waited for a cab so we hauled our suitcase on wheels and hiked the few blocks to Sloan. Now luckily, I had some winter coats in the car but we did not have gloves or boots. We took our time and we go there relatively dry and not freezing. Once there, we discussed the plan and they checked Cody's blood again and he was fine. He had a bowel movement there but he forgot to look so not sure if there was blood in it. Is this what teen's do??? UGH! We left there around 1:30 and got home around 2:30. The roads were clear but there was a lot of snow blowing around. Hard to believe we got dumped on again. Once home, he had another bloody stool. Still nothing has changed so unless it gets worse, we will be here at home and not eating. It is tough. He is obsessed with it. He went to play his video game and that was broken. So we managed to get him a new one. I feel so bad and he was so bummed and upset. We are trying and I am being kinda hard but he has to not eat. I spoke to the psychiatrist there today and asked her to talk to Cody but we left before she came back around. We will touch base again on Tuesday. So let's hope tonight goes well and we can continue to stay here this weekend. Oh I hope so!

Hope my teacher friends enjoyed the day home and have a good 3 day weekend. Drive carefully out there everyone!

february 25, 2009

Thursday-well, I had thought it was going to be a good day. Cody had two bloody stools and we had to go into Sloan. We beat the snow until we got to around Great Neck. Then we hit it. We got to Sloan around 3 and decided he was well enough to not be admitted but they wanted us close. There was nothing they did there. We concluded that it the salt and vinegar baked chips he ate from Canada made him bleed again. So he is back to not eating and we will rest his GI tract again. He is not happy and it is very upsetting to say the least. So we got a shuttle last night around 7 and went to Ronald McDonald house. It was ok but just a lot of work for one night. I know it got bad here so I guess it was best that we stayed there. We were to report back to Sloan if there were any issues and/or blood, we would need to go back. That is why they wanted us close. It was a quiet night, he slept well. I was kinda nervous with no blood pressure cuff or stuff for the high blood sugars. But we did it.

february 24, 2009

Wednesday- I really cannot believe it is coming up on the end of February. Where do the day go?

Today we kinda blew off the morning tutor. I just needed a day to lounge around in bed. The rain was so soothing this morning. We were in my bed so we could hear it on the roof. It was a pretty good night, Cody did not get up at all during the night. Today was good too. He ate a little bit of snacks, not real food yet. Might try something tomorrow. I have to push it a little bit but he is eating what he wants and so far so good. We ran a few errands in the yucky weather and then he waiting for the afternoon tutor. We did not really do work as we were waiting to watch the hockey game...GO USA! It was exciting. Then we went to physical therapy to work on his foot drop. He did well and got some stretches to do at home to strengthen his ankles and calves. I think part of it is his shoes.

We heard from Casey last night! He finished his 10 days in the woods. He did well but is tired and was very cold. A mother does not like to hear that especially when she cannot provide comfort. I wish he was home with us. Keep up the great work my soldier boy! Love you lots!

february 23, 2009

Tuesday- we got up nice and early and headed in with lots of traffic. The day went well and we barely had any waiting time. We met the team and talked about foods which continued throughout the day. We then went to get his IVIG infusion in the bed area. That takes 2 hours. It is that blood plasma product. He did well without any side effects. Then the girl came to set him up for his EEG. It takes a while to put all those leads on his head. Then he had to sit there for 20 minutes and keep his eyes shut. They try to provoke a seizure with a blinking strobe light and then they had him hyperventilate for 3 minutes. He did it all and then we waited a few minutes for the neurologist. He checked him out and I brought his attention to Cody's feet. He flaps them when he walks. I know he lost a lot of reflexes with chemo but his ankles are very weak. I am going to bring it my the attention of the podiatrist I know. The EEG was normal so no evidence of seizures. We had a long drive home in lots of traffic again. We got home in time to watch the end of the Olympic hockey game with one of the Islanders playing so that was exciting. That team won too. Then Cody tried to eat toast but felt nauseous. He also got a headache tonight. So he went to bed pretty early but I think it is what he needed. We were up early, then the traffic in, then the EEG with the lights, then the stress of worrying about it, then the traffic home. Long day. I am hoping to be in by 10 myself. Hope the rain did not cause too many issues out there...night night.

february 22, 2009

Monday-We both woke up very rested but the day exhausted us. We got the clearance to start eating. So around 12 we started with plain rice. Well, we all know how plain rice tastes and it brought on the tears. I know he was expecting something so much more. He tried a few bites of banana which I am very proud of. He has never liked bananas. He tried broth I made with a cracker. It was all too bland and he was so upset. Finally we left to take a ride and then go to physical therapy. He had emailed the doctor and she said he could try baked chips and/or a baked potatoe with chicken. So we left physical therapy and went to get the chips. He ate 3 of them and seemed ok so far. It is such a tough process and it is hard to deny your child food. It is all he wants and so hard to not be able to provide it. He is really doing well and being strong but he is so upset. So we got all set up so he could go to bed at 8. We have a very early day tomorrow with lots of appts at Sloan. He is getting the EEG tomorrow too. I am waiting until 10 to do his finger stick and I am crashing too. Hope this weather is not so bad for us...have a good night.