Tuesday, December 23, 2003

 

Up and Down

That is what is happening with Devin's weight. It is up, it is down, it is up...today it was down. I don't know what is going on with it. He is getting the same amount of NG feeds, he is eating foods yet he dropped weight. ::::sigh:::: Maybe I should sew some lead weights into the hem of his pants before his appointments.

Other than his weight, Devin's appointment was uneventful. His counts look good and he is looking great. After his appointment, he went over to the floor to visit his nurses. While he was there, he peeked in to wave hello to Barrett. Barrett is a 6 month old little girl from Clarksville who got a bone marrow transplant last week. She is doing very well so far.

School is now out on break so Devin is happy about that. He is not so happy that I am still having him work on his phonics and reading to me. That is still his weak area in school, reading. If he takes his time and thinks, he does very well but he wants to rush through it.

We have been told that Devin's page has a massive silent readership who follows our journey...including some of the soldiers in Iraq. Please feel free to click on comments to say hello so we know you are reading along. We do read the comments to Devin and he asks us if anything new has been added.

Have a great Christmas!

posted by Devin's Mom 9:33 PM

Tuesday, December 16, 2003

 

Crystal Boy

Devin was thrilled to pieces today as we were waiting for an elevator. A gentleman approached us and said "I know you, you are Devin Proctor!" Devin, who was playing his Gameboy, mumbled something but didn't look up. I said that he was Devin and that the man must have seen the hospital video. He told me that HE was the one who had commissioned the video and he was on his way up to the Clinic to see Devin.

Devin turned his Gameboy off and Mr. Lee gave him a box. It had a crystal paperweight with a 3D model of the new hospital inside the crystal. It is really cool looking, it even has a little helicopter on the roof. Mr. Lee said that everyone who helped build the hospital got one of them and Devin helped build the hospital. Devin loves that crystal. He could not wait to show it to people and he opens the box constantly to look at it.

His appointment went well. Devin has gained some weight! Of course, we are running a HUGE amount of NG feeds through him to get him to gain some weight. His counts are looking good too. Since the higher dose of NG feeds is causing him a little bit of a tummy upset, we are going to back it off a bit during the day but turn it back up at night.

Devin's birthday party was a success. We had 9 kids who were there. After playing some games and having a cupcake, we went to see Haunted Mansion. It was an okay movie but it did have a few moments that were bordering on too scary for smaller kids to see. We also had a Pack Meeting where Devin sang "Santa Claus is Coming to Town" with the rest of his den. Santa showed up and Devin got his pinewood derby car.

We are free from visits until next Tuesday, when hopefully, we will go to every other week.

posted by Devin's Mom 9:34 PM

Friday, December 12, 2003

 

Eight Years Ago

We were greatly blessed with the addition of a sweet boy into our lives..Devin Connor



Happy Birthday Devin!

posted by Devin's Mom 12:12 AM

Tuesday, December 09, 2003

 

Skinny Boy

Even though Devin is getting his NG feeds AND eating, he is just not gaining weight. In fact, he has lost a bit of weight. We spoke to the dietician and we are going to start running is feeds 24 hrs a day. He is currently running at 65 ml per hour and she wants him up to 95 ml per hour. As I am typing this, he is up at 85 and I suspect by tomorrow he will be at the 95 ml per hour.

We also have a bunch of recipes for shakes to try to get him to drink and of course, give him pretty much anything he wants to eat.

Other than his weight, everything is looking well for Devin. He has a lot of energy and is behaving like a normal kid. He is very excited because his birthday is at the end of the week.

Tonight he had Cub Scouts and handed out invitations to his party. The theater that opened up down the street has a party room so we will be meeting there and seeing "The Haunted Mansion" Devin is pinging off the walls in anticipation of all of this.

All of his counts looked great!

posted by Devin's Mom 10:09 PM

Tuesday, December 02, 2003

 

PICC Gone!

Devin had the PICC line removed today. It had been giving me problems when trying to get blood or to flush it and then it started to hurt Devin. Rather than mess with it any more, it was just pulled.

Since it was pulled, Devin had to get an IV in his arm to get his medication. He squalled and screeched like they were trying to put a garden hose into his vein. Devin doesn't like the numbing spray but today asked for it. Once the IV was in, he was fine.

His clinic visit went well and we will go back in one week. Dr Frangoul mentioned that we can start spacing our visits to every other week in the near future. Woo hoo! Devin had gained over a pound from his last visit.

This evening, Devin had a den meeting and was made a Den Chief, Denner...something like that. In any event, he has a rank cord now on his uniform and is very pleased about being selected.

Devin has been feeling his oats lately, enough that he has been put in time outs, sent to bed early and had things taken...in other words, he is starting to act like a normal kid again! Much as it is annoying when he acts poopy, it is great that he is feeling frisky enough to get snotty with his siblings and behave in a kid like manner.

We will see you next week!

posted by Devin's Mom 10:21 PM