May 31, 2011

Tonight was HSE's award night. Cody got an award for 'overcoming obstacles and challenges' presented by Steve Stern, Suffolk County legislator. Then he received three scholarships. I am so proud of him!! Nicole came and so did Margo from work. I was glad to have them both there.

Been a while since I updated but that is all good. Cody is doing well!! Other than occasional nausea and dry skin, he is good. We rode bikes this weekend. He goes about 3 miles and does it with ease. He is getting stronger every day. He is eating better and feeling good. I will continue my job on helping him to gain strength and gain some weight. He is my hero!

Thanks for all your continued support and prayers!!

May 20. 2011

Friday-So the MRI was negative. There is some sinus issues there but no evidence of virus, thank goodness! That is a relief. Nice way to end our week.

Heard about a few sick people this week so sending out some extra prayers. Those that are involved are very close to me and it is their parents. Hoping they find the strength to make these tough days ahead a little easier. Love you, Roy.

Long week and looking forward to a quiet weekend.

May 19, 2011

Wow, I cannot believe how fast May is flying by. It is such a busy time too. We just went to the pre prom meeting tonight. They really try to scare the kids with the drinking and driving issue. They scared me so I hope it works. I have been talking to Cody. I do not feel like he will have a good time going to the Hamptons with everyone. He will not be able to drink and I really think he will be bored. I have it worked out so he can just get his car after the prom and come home. I am hoping this is the case so he will not need me to come get him.

He has been feeling pretty good although today he did not feel like eating lunch. He did eat dinner so hoping it was just a fling for today and passes. He gets so worked up over it and feels so bad. He really worries about things quite a bit and I understand this.

Little Matisse is doing ok. He gets little setbacks but is doing well.

May 14, 2011

Saturday-Great news yesterday! The biopsy is clean! Coming down even more on the steroids which is awesome! He is really doing well and I am so happy!

Today we went to Sloan for his MRI of his brain. They are checking for any inflammation from that dreaded virus which they are thinking might be a source of his nausea which is gone now. Isn't that the way it works? He did well and went in alone and had it without me sitting next to him. He took his valium and came out goofy but he did it! I am so proud of him. He is really trying to be 18 and to take things into his own hands. He gets to sign all of his consents which makes him feel grown up too. We came home and napped and are just chilling here tonight. Weather is kinda yucky so just staying home. Hope everyone enjoys their weekend.

May 14, 2011

Saturday-Great news yesterday! The biopsy is clean! Coming down even more on the steroids which is awesome! He is really doing well and I am so happy!

Today we went to Sloan for his MRI of his brain. They are checking for any inflammation from that dreaded virus which they are thinking might be a source of his nausea which is gone now. Isn't that the way it works? He did well and went in alone and had it without me sitting next to him. He took his valium and came out goofy but he did it! I am so proud of him. He is really trying to be 18 and to take things into his own hands. He gets to sign all of his consents which makes him feel grown up too. We came home and napped and are just chilling here tonight. Weather is kinda yucky so just staying home. Hope everyone enjoys their weekend.

Wednesday, May 11, 2010

Glad today is over.

Yesterday Cody went to NYC for his appt via car service. He did well and signed his own consent forms for his procedure today. He felt proud I know! His potassium levels were off but with some hydration, he was fine. As a result of that and from today's numbers, we are adding fluid to his tube to get an extra liter in.

He did well today with his endoscopy. The surgeon, Dr. LaQualia said it all looked fine inside and asked why we needed to do this. We still have to wait for biopsies to come back but it looked good. His fistulas are healed which says a lot. He is making his own b and t cells which is also a good sign. I feel very relieved and know this great path will continue. We had a long day, with getting up at 4:30am. We both napped today and are pooped tonight.

To be continued....

May 10, 2011

Monday-Happy Mother's Day! I had a great day. It started on Thursday when I got flowers from Casey and Nicole. It ended late last night with a phone call from Casey. So happy he called even though I was out of it. Cody and I went to Belmont racetrack for something different to do. We walked in and did our $2 bet and Cody won $11 on the first race. He is that lucky! We made tacos for dinner, his choice and called it a day pretty early. It was a nice day. Wish Casey was here but so happy he called.

Cody has a busy week. He is having an endoscopy on Wednesday to check for any inflammation. The drs are worried about him not gaining weight. He is maintaining his weight but not gaining. I am worried too but I think this is just him. We shall see on Wednesday. They are hoping that is there is anything wrong that it is not GVHD.

On Saturday, Cody is having an MRI. The nausea has gotten better but is there a little bit. The drs want to check out his brain to make sure that virus is not visible. Again, I do not think this is the case but just need to make sure.

He feels great and looks great too! That is what I base it on.

With that, have a good week everyone!

May 3, 2011

Crazy days and busy ones. We have been busy doing the college thing and car shopping. Yesterday Cody took a car service to the city for his appt. He did well and Uncle Jim was there to help him and to sit with him. He went to lunch with Jim and decided he wanted to take the train home. Jim got him to the subway and at that point Cody felt nauseous and dizzy. Not sure what is going on but an MRI is scheduled for the 14th to check his brain. He had a good visit other than not really gaining weight. He is not losing but not gaining. The drs ordered an endoscopy just to make sure there is no GVHD. This is all upsetting and scary for me. He seems really good in every other way. I am praying it is all just a precaution. Not sure if this is the pattern and what we can expect but it is tough.

We have been chatting online with Casey and he did call for Cody's birthday too. Yesterday we heard of Bin Laden murder by the Navy Seals. I can imagine how they feel over there. I pray for everyone's safely and peaceful return.

Nite all!