Happy Halloween

The pumpkin is finally in bed,

Lego Batman has fought the villians,

and Pippi has washed the orange out of her hair...

a successful Halloween...can't wait until next year!

Way To Go Phillies!!

Psyched after the amazing finish to the Series last night, a wide-awake Owen and I took off for Modell's this morning at 4:30 am to get our World Champion T-shirts. After an hour and 20 minutes in a line of excited fans, we came home to wake up Joey and Joe with our surprises.

Now it is nearing midnight...I am running out of steam but Joey's costume is almost done---good thing since he made the difficult decision to go to school instead of the Phillies parade tomorrow...

First Steps!!

Owen took his offical first steps during PT this morning. He has been working on in for the past weeks but his steps have been more like a falling lunge. This morning he took real steps from his therapist, Karen, to both Joe and I. So much excitement...didn't even think to grab the camera.

Joey's football season came to a close yesterday...he had a tough game...sometimes he gives up way to easily, but we're working on it. The football party was a lot of fun for the boys, one of the coaches even made a DVD of season highlights. The head coach shared some anecdotes about each player. Joey was beaming when coach handed him his trophy and told everyone how Joey had made him the most proud. The coach thought Joey was going to quit after the first few practices, but Joey had stuck it out and got better and better each week (let's just forget about Sunday's game.) It was a great moment for Joey.

Chemo was very very long today...everything seemed to be backed up from the get-go, but as usual Owen did very well. Another specialist got added to the must-see list, an ENT. Last week I video taped Owen while he was sleeping and shared the tape in which he was making this loud whistling snore, with Dr. Cole. After the MRI one of the nurses mentioned that she thought Owen might have something called "Strider" because of the loud noise he made while sedated. He can be the quietest sleeper but on the flip side he can probably be the noisiest. So we'll have him checked out, since it may have to do with why he is not swallowing very well. (Aim, he loved that "scrapbowl" cow today)

Looking forward to some quiet nights at home now that football is over...getting to the gym a few evenings and finishing Joey's Lego Batman costume...Gonna go snuggle with Joey and watch those Phils!!

updates on the boys

Wow it has been awhile since I lasted posted....

Owen had two weeks without chemo treatment, and then a MRI last Thursday. We got his results from Dr. Cole, the neuroncologist, on Monday. The tumors have stayed stable and the contrast has become less bright. The doctor assured us they think this is a good thing, but has not found any research to explain exactly what it means. I have to do more research myself, but so far it is my understanding that NF affects children and adults so differently that there is much that is still unknown. Anyway, Owen continues on with the same plan of action. Four weeks of chemo, two weeks off, and he'll have his next MRI in three months to check on his progress. He is continuing to make progress with his gross motor skills...getting very close to walking and he is starting to even move around on his belly more, trying to scooch forward to grab for things. He sees his PT, Karen, every Monday before we head down to CHOP and he really works hard for her. He is scheduled to see the feeding team at CHOP in two weeks for an evaluation, hopefully we can get him eating more.

Joey's big news this past week...his football team played the half-time football game for the Temple game at Lincoln Financial Field, home of the Eagles. Driving down 95 on our way to the game, passing the stadium, Joey admits he was really scared because of all the people that would be there. But once he was sitting with all his teammates in the stands you could see how excited he was. On the field, he was jumping up and down hardly able to contain his excitement. What an incredible experience for all the boys. Tomorrow is Joey's last game of the season. I am pretty sure he is ready for it to be over for the season...I myself am a little sad.

pickle head...

I need to give equal time to my other boy...also one with many sides, even though he is normally pretty even tempered. It has taken a lot for Joey to get fired-up and aggressive for his tackle football games. But at Saturday's game, Joey kicked it into gear and had 4 tackles. He was so super-proud of himself...probably not near as much as Joe and I (running up and down the sideline) were. Awesome!

The many moods of Sweet Pea

My dad deemed Owen "Sweet Pea" a few months ago. Dad has a way of creating a nickname for you and it sticks forever...I am still known to my family as messy Jessie, my brother has a number of nicknames that have stuck with him since childhood and Joey has been Pickle Head since he was a toddler. So Dad spends time thinking of a name that will really fit each one of our family members...Owen can definitely be a Sweet Pea but recently he has been really showing many sides of his strong personality...especially when it comes to how he interacts with Joey. He LOVES his brother, but lately he snuggles up to him and then the minute Joey goes in for a kiss or cuddle Owen screeches, gives a growly face and pushes Joey away. So when I was trying to capture the reason for Owen's most recent visit to the ER (a face plant on concrete) I found that these closeups really capture his personality of the moment...the many moods of Sweet Pea.