Weekend/SportsCenter Update

Well, we've been very fortunate because Ben's temperature has stayed under the hospitalization threshold. He still has a bad cough, but it seems to be getting better.

We let Ben play hockey yesterday despite the cough because he was playing against his best friend's team and he desperately wanted to play. (We held him out of practice on Friday.) His temperature was totally normal, so we decided to take the risk. He had a great time playing, and proved to be quite the playmaker. Made some very nice passes to his teammates, a couple of which nearly turned into assists. His team won the game like 7-2 or something like that. We didn't take pictures yesterday, but I've attached a photo of Ben's last game. He's in the center of the picture in purple.

David also had a game this weekend, but he's playing soccer. He scored his team's only goal and also made some great plays on defense, catching kids from behind to ruin breakaways twice! He's really aggressive and looks like he's going to be a pretty good player. This is a beginner league with no goalies and they don't keep score, but David was very cognizant of the fact that the other team scored like 10 goals. LOL Here's a photo from warm-ups of David and one of his coaches.

Nicole, Ben and David are going out for lunch and I'm going to work. Thanks for reading!

Never ending cough

Ben continues to stay home from school with a bad cough, a little bit of a stuffy nose and a low-grade fever. So far the highest it has gone is 99.7, but in our minds, still too close to the 100.4 that could wind him back in the hospital.

Ben has been very bummed to miss so much school this week and of course all of the extra-curricular activities planned for the week (and also the fact that we had to cancel our trip to Hawaii because of this and other issues). Of course, the bigger concern is that he really doesn't want to end up back at the hospital (then he always adds that he doesn't want to go back even though he LOVES the food, the FunCenter and the fact that he is "the boss"). He is really upset that he has to miss his normal acitivities like karate (he wasn't able to earn a ninja this week) and he won't be able to go to hockey practice tomorrow if he isn't totally better. Yes, I know, this is what every kid who gets a cold must go through...but considering the year and half Ben just endured I think he feels these hardships a little more deeply than the average child. That being said, he still endures them more bravely than I could ever do!

He cried a little tonight about the fact that he may need to miss school again tomorrow...but even more troubling to him is that there is a good chance that he might have to miss his first big hockey game against his best friend on Saturday! I really hope and pray he gets better soon...for so many different reasons!

First Hockey Game

Ben had his first hockey game on Saturday afternoon- his team won 7-2!!!!

Ben was so happy to be out on the ice and he had so much fun. He was exhausted by the end and didn't have any energy for the rest of the evening...but I also don't think he could wipe the big smile off his face. Life is good!

Unfortunately, he woke up Sunday morning with a stuffy nose and he has been worried he is going to end up back in the hospital (he keeps asking me to take his temperature) but it hasn't gotten any worse and he doesn't have a fever so we are hoping for the best.

Blood Donations Needed!

Ben doesn't need any blood at the moment, but lots of other people do! Please donate blood when you can. There are links to the right.

If you are in Los Angeles, and you want to sponsor a blood drive at your organization, please contact Veronika Bauer at Cedars-Sinai Medical Center, 310-423-3530, bauerv@cshs.org. Cedars will provide staff, promotional materials, equipment and supplies, juice and cookies, even a "thank-you" gift for donors, all at no cost to your organization.

Steroids

Ben took his last dose of steroids for the month this morning. We all survived another month!

He is feeling and looking great!

Another Spinal

Ben had another spinal tap this morning and all went well. His main complaint was that he was SOOO hungry so he was extremely eager to eat right after. As usual, we brought the snacks he picked out and are now waiting for some Chinese food to be delivered since I told him he could have absolutely anything that he wanted.

Ben was nervous prior to the procedure. He doesn't like the procedure and he really doesn't like how the medications make him feel. After speaking with the doctors they decided not to use any Ketamine which regularly causes people to hallucinate and instead just used Versed (aka Midazolam). It worked really well in terms of not causing the crazy dreams but it took him a very long time to come out of it. Thankfully, they now have a tv in the procedure room so Ben was able to watch cartoons while eating his snacks and gradually feeling strong enough to walk.

When we arrived home a short while ago we recieved the wonderful message that his bloodwork came back and all is good! White Blood count 3.4, Poly 2305, Hemaglobin 14.3 and Platelets 218,000.

Ben was upset he had to miss school today but is excited to go back tomorrow. His hockey team is also starting tomorrow but upon the advice of the doctors, and to my relief, he has decided to take this first weekend off from sports just to keep his back safe. He couldn't do any permanent damage but getting hit in the back or falling on the ice would be pretty painful to his tender back.

Some photos

Ben and I just got back from his hockey tryouts -- he'll be starting in a league shortly. Here's a photo.





I'm also attaching a recent photo of Dakota, who is getting really big (she's about 60 lbs so far and is supposed to get to 85 when full grown).





And for good measure, the cupcakes Nicole made for our Labor Day picnic. Those hot dogs and hamburgers are not plastic, folks -- they are made from cookies, caramel, sliced gum drops and other edible stuff! Yes, Nicole made them all by herself!

School

We ended our summer with trips to the beach, museums and play dates. We intentionally didn't go too crazy because we didn't want to wear the boys out right before the start of school, but we still ended up being exhausted at the end of each day with smiles on our faces.

The boys started school on Wednesday and they are having so much fun! When I picked up the boys after their first day Ben was just beaming and said that the Second Grade is fantastic! He loves his new teachers and his classmates are great. David is staying with his same teacher (our school has a combined Kindergarten and 1st grade) which we are all thrilled about because we love her and he is excited to be one of the "big kids" in the class.

I am so happy to be able to get involved in the school once again. I am a Room Parent for Ben's classroom and have signed up for all the committees I was on prior to Ben's diagnosis. While at the school this morning I was able to pop into David's class which he was happy about. I also got to see Ben as he passed me in the hall on his way to Spanish class. I don't get the bombardment of hugs and kisses in front of his friends anymore now that he is older but I do get the wave and big smile which is wonderful!