Cullen

There is now a Caringbridge site for Cullen :) Hooray! Here is the latest from Shelley:

Hey Everyone.

Just wanted to give an update on how Cullen is doing.Cullen has been doing better the last week or so. He had a pretty bigarthritis flair the day before Thanksgiving. He hasn't been in that muchpain since his arthritis was first diagnosed in 2007. We got him through the weekend wearing ice packs around his knees and ankles to help reducethe swelling. Sent an email to his rheumatology doctor, Jen, and told her that we really need to restart Remicade. They had stopped him taking this medication when he had the big lung infection in May/June. Given that Remicade is an immune suppressant, they didn't want him on it anymore asthey were concerned that the lung infection would get out of control. She agreed and he started up again on 11/30. What a huge difference that has made. Not only are we have been able to get arthritis more in control, butit has also helped with some improvement in his lung function. He is no longer needed supplement oxygen throughout the day. We also saw the pain management team last week, and they prescribed a new plan that has allowed his back pain to be more under control.

So overall, Cullen is doing much better. He has been busy trying to catch up with school. As always lots of doctor appointments at Children's, there is still alot going on. With the hospital stay in November and the time that it took to recover, hehad gotten far behind. This always stresses him out, even though we tellhim everyone understands and we will get as many extensions as you need.For the most part the teachers and the director of the learning programhave been very supportive. They have been working with us with whatever weneed. With that said, Cullen was not sleeping great as he was worried aboutschool, deadlines and doing well.Our neighbor's son, who is a teacher came over last weekend to help Cullenwith Social Studies which was a big help. Thank you Adam!I also remembered a tutor that had helped Cullen in seventh grade when hewas part of the home/hospital program. On a lark, I thought I would callher to see if she would be willing to help Cullen in a freelance capacity.Since it has been a couple of years since we had talked, I wasn't sure ifshe would remember us. She not only did, but was more than willing to helpget started with Cullen this week! She has also agreed to help him over thewinter break so that when school "starts' back up in January that he willbe caught up. Cullen met with her today and was feeling really good aboutthe new plan.Another blessing has been Katie. Katie is the Coordinator of Children andYouth Ministries at our church. She is in the process of organizingtutoring for those that either want to help or need help with school. Icalled her yesterday to see where she was in the process and if there wassomeone that could help Cullen with Spanish. They are still organizingeverything, but with out any hesitation she shares with me that she isfluent in Spanish and she would love to help Cullen. This is such ablessing. Cullen's Spanish teacher has been less than engaged and learningthis by himself has been difficult. Cullen finally feels like he has a planand although there is alot to do in the next few weeks, that he has lots ofsupport to help get him there.

Many of you have been wonderful about sharing Cullen's story in a variety of prayer groups. They have asked that I start a caringbridge website where they can get updates. So this weekend, Cullen and I put this website together. It will have the same information that I sent out in these notes,but that way you can provide the following link to friends/family thatwould like to keep updated on Cullen.You can Visit Cullen’s website in two easy ways:
1. Visit the CaringBridge website by clicking the URL.http://www.caringbridge.org/visit/cullenrogers/createorsignin

2. Enter the website name, cullenrogers, at http://www.caringbridge.org/When you visit you’ll be asked to log in. We took Cullen to see Blindside over the weekend... Great Movie.. Have a new favorite verse. "Because with men some things are possible. But with God all things are possible."Thank you for your prayers, love and support.

We have much to be thankful for.
Shelley