The Lazy Diary

I'm home now. I wanted to check the computer then get some needed sleep. I just hope Glenie's doing ok with Glen. He was asking about him all morning so I know he's happy that daddy is there. My poor baby just wants to come home! Every time he wakes up that's what he asks for. I know letting him play with his Leapster would help a lot but he has boards on his hands because of his IVs. I meant to ask the nurse to move them. I'll tell Glen to ask later. I left before getting the MRI results so I'll update you all when I find out. Thanks so much for all the love! Here's my baby after the surgery: And this morning:

As posted by Jaime.... Jody is one tired mama! Poor thing was up for 20 hours straight and only got 6 hours of restless sleep last night. She said that Glenie was really restless last night. She ended up sleeping in the bed with him, but it was difficult because of all his wires. The nurses check on him hourly. They are monitoring his fluids very closely. Glenie LOVES to drink so they did let him have some water last night. Looks like he's going to be in ICU until Sunday or Monday because his doctor is off for the weekend. And she said he was going for another MRI this afternoon. Lets pray she can sleep some while he's gone. This has been so hard on her. She misses Sara so much too. I think she said it would be at least Monday before she sees her again. And Glen is going to go stay with him Saturday night so Jody can go home and sleep some.

Posted by Jaime (thanks!)

6:40 She just got to see him. Jody sounds terrible. The doctor gave her some good news, it's was a craniopharyngioma (not cancerous). He thinks he got it all. His optical nerve looks good so the doctor expects him to have improved vision, she started to tell me about the hormone therapy but started breaking up (the cell service was bad) She said he looks awful. He has a drain in his head. IV's in both arms. A blood pressure cuff on his foot. She said he's in a room with 4 other children and she just wants to crawl in bed and comfort Glenie but can't. :( She said she tried to talk to him but he is out of it (to be expected) Just think of her and send her some strength as she is going through this.

Posted by Michele (thanks!)

4:30pm The nurse came out and told Jody that they are "stitching him up" and he'll be out to recovery in about 25 more minutes. Jody says she wants to see him open his eyes and say HI She will talk to the doctor and then sneak outside to update us some more.

Posted by Michele (thanks!)

12:30pm Glenie JUST went in for surgery. It is going to take FIVE hours or more. Jody will call with an update later tonight. Still thinking of him!

Posted by Michele (thanks!)

10:50am - Jody just called, they took Glenie in for his MRI and Cat Scan. He was suppose to be scheduled for surgery at 10am but they are running behind. So the surgery is suppose to last through this afternoon, I will update you as soon as I hear anything else. Praying for Glenie!

Posted by Michele (thanks!)

Well we're almost all packed for tomorrow. We decided to take the car because we have 3 heavy bags and don't want to tote them on the train and bus. I've been so busy this week that I haven't had the chance to sit down and think about things, which I think is good in a way. But tomorrow is going to be so hard. I know this has to be done but it just makes my stomach drop. I hate this so much. I know so many people are praying for Glenie and I thank you all so much. If I can find internet access I'll update tomorrow evening after he's out of recovery.

Today was such a LONG day! Glenie's appointment with his pediatrician went well. Then we went to his school to play with his friends for a bit and say good bye to them and his teachers. After that it was off to NYC! Glenie really enjoyed the train and subway rides.

So we visited with the ophthalmologist first. It turns out that Glenie has decreased vision in is right eye and it's highly likely caused by the tumor. He said there's a good chance his vision will return to normal after the tumor is removed.

We were running late from the ophthalmologist so we grabbed a cab to go over to meet the neuro-oncologist. After getting out of the cab and crossing the street I realized my phone fell out of my pocket! Would you believe I actually got it back! Anyway, back to the doctors. I met with the surgeon's nurse and the neuro-oncologists nurse and they both took a history. Then I met with the oncologist. He got more in depth about Glenie and his autism and his diabetes insipidus.

After that appointment we hopped a bus back to Penn Station. We didn't get home until almost 8PM. I'm so tired!

Tomorrow is another long day and it starts pretty early too. We have to meet the endocrinologist at 10:30AM, have pre-admission testing at 11AM, go for a CT scan sometime after that, then take a tour of the pediatric unit at the hospital. Luckily it's all at one place so that will make it a bit easier.

Glenie and I have a lot to do tomorrow. First I have to make a few calls in the morning, one to let his school know he won't be able to do the summer program and another to the surgeon's office to see if they made us appointments with the other 2 doctors. At 10AM Glenie has an appointment with his pediatrician. I'm hoping that goes relatively fast because I want to take Glenie by his school to see his teachers and friends, since he's missing his last days of school. Then we have an appointment with the ophthalmologist in NYC at 2:30PM. This is going to be a fun trip for us because we're taking the train into NY and the subway to the office. I think Glenie's going to enjoy it. I already told him and he's pretty excited about the train. My in laws picked up Sara late this afternoon and took her back to PA. It was heartbreaking because she wanted me to come and Glenie wanted to go too. I hope to get decent sleep tonight as I haven't been getting much lately. That's all for now.

I'm starting this Blog to keep everyone updated on our family, in particularly Glenie's surgery and recovery.

As most of you know, doctors found a small, most-likely benign tumor in the center of Glenie's brain. It's caused damage to his pituitary gland and has caused him to develop diabetes insipidus.

Next week Glenie is going to be admitted to New York University Medical Center to have the tumor removed. He's going to have to remain in the hospital for 2-3 weeks until his endocrinologist can get his medication dosages correct while he remains under supervision.

We appreciate all your love, prayers and support. We will keep you updated.