Welcome Sophia Hope Bell!!!

Welcome Sophia Hope Bell!!!
Maddy has officially become a big sister!!

Saturday, December 30, 2006

Blog Layout Change

If you'll notice, we have added a slideshow of images of Madelyn on the right side of this site. This is fed from Picasa (Google's web photo album site). If you click on the pictures you can view them better. We'll periodically update the images for all of you to see. If there's one or more that you like, you can order prints. The images are high resolution, so most of them would be of great quality up to 20x30.

Here is a link directly to the Web Album if for some reason the feed blips.

Thanks for continuing to support Madelyn.

The Bell Family

Thursday, December 28, 2006

Maddy's First Chrsitmas is in the books

Christmas was wonderful! We had lots of family around and Madelyn had a blast. She's developing so well. She is very close to rolling over. It should not be more than a week now. She's flinging the leg for momentum and has a very determined look on her face.

We removed the bandage from her surgical wound over her liver. I have seen lots of stuff as a medic in the army and working in ICU departments, but for a closed wound this one bothered me just a little. The edges are a little jagged, but that is probably due more to the way its healing. It is larger than I expected, but still not bad. I just think what we would be looking at had they chosen to operate on her chest, and feel relieved with what we actually did.

Sheila and I talked last night about Madelyn's condition. Sheila stated that when she looks at Madelyn, she doesn't see a "sick" child. I told her, however, that I do. It's odd to me how I look at her. I see her almost at a cellular level. There are things in her body that aren't supposed to be there. Her eye is really drooping at times, and you can't help but wonder if the eye is getting worse or if the sympathetic nerve pathway will ever be the same. If I haven't explained how her eye is related to her condition, let me do that now.

The tumor in Madelyn's chest started from her sympathetic nerve chain in her chest. It IS the nerve, not a tumor near is that presses on it. The sympathetic nervous system is the part of your nervous system that controls things you don't think about. When you open your eyes, you don't think about opening them equally. When you look at a bright light, you don't think to constrict you pupils to allow less light in. When its hot, you don't think about sweating. The sympathetic innervation (nerve connectivity) to her left eye and cheek have been interrupted by the nerve growing to become a tumor. If these tumors stop growing, there is no guarantee that the chain will return to 100% function. When the doctors originally said they were going in to her chest to possibly resect (cut out) the tumor in her chest, if they had done this, the nerve would be gone and it would never be right again. Right now we don't know how it will turn out even if the neuroblastomas stop growing and change to ganglioneuroblastomas or ganglioneuromas.

It seems petty to think about her having normal eye function when her life is technically still in danger, but you want your baby to be as normal as possible. When I think about her growing up and beginning her socialization, I worry that anything not seen as "normal" will cause her problems. Children can be cruel, and I have read where adults are still dealing with the psychological impact of having a droopy eye. Within 10 minutes, we heard conflicting statements from two surgeons on whether she would grow out of this, and the surgeons are partners in practice. Its not my research. As I said, it seems petty but what else can I do?

Right now, we are waiting for the results of the genetic analysis from California. The doctors don't expect anything back before next week. We may have an MIBG scan next week. In this test, they would inject Madelyn with a radioactive isotope of Iodine that usually bonds well to neuroblastomas. The purpose of the test is pretty much to see how well MIBG works on her tumors and how effective this will be as a future diagnostic test.

It scares me to death to think that right now we are just waiting and this thing could be growing. Again, I think about this at a cellular level. Are there more neuroblast cells today than yesterday? Are there less? Are the cells maturing as we hope? We aren't in a hospital, no one is sticking a needle in my baby, but part of me felt better when we were actively doing things versus waiting. I do trust our doctors, though, and I have faith she'll be fine but the waiting is torture.

Thanks to all of you for taking the time to visit the blog and for your continued prayers and well wishes. We love you all and you continue to inspire us with your kind words and outporing of love. The best part of our day is when Sheila gets a text message on her phone that a new message has been posted. We read them aloud to each other, often looking at each other and saying, "Who is that?" because you have told so many people about Madelyn and people we have never met before are stopping by to wish Madelyn well. I can be pretty cynical, but this is amazing that people still care.

The Bell Family

Monday, December 25, 2006

Merry Christmas!!!

Hi everyone! We hope your Christmas has been as enjoyable and memorable as ours. We went to mass this morning at St. Joseph's in downtown Columbia. Madelyn was sound asleep when the organ fired off the first notes of music, and she only returned near communion for a brief appearance. The congregation sang "Silent Night", which she seemed to enjoy probably because I sing it for her all of the time.

We had dinner this afternoon at Ron and Patty's. It has been your pretty standard Christmas, which is great compared to what we have been going through.

Thanks to everyone who continues their vigilant prayers for Madelyn and our family.

Happy Birthday Jesus and Merry Christmas!


Sunday, December 24, 2006

Christmas Eve is Upon Us!!!

If you notice a little number to the right of this post, I added some code to track visitors to the site. 30 unique visitors yesterday and 19 so far today. And I have been slack posting new info, but its not completely due to laziness. We are enjoying time at home with Madelyn, something just a few short days ago we didn't think would be possible. Thanks be to our Lord Jesus Christ.

I have also changed the settings by which you leave comments. You no longer have to sign up with Google to leave a comment. You can leave an anonymous comment, but please leave something to identify yourself so we know who has been by.

Madelyn is pretty happy. She has had a little trouble getting back into the routine we worked so hard on. Friday night she was up 4 times and pretty unhappy when she was awake. She slept most of the day of surgery, so this is kind of expected. Nothing we can't handle though, and far and away better than sitting in a cold hospital room watching her vital signs.

We went out yesterday for a few hours of shopping. We avoided the crazy areas (Sandhills, Columbia Place, HARBISON) and ventured to Camden. I am still in shock that Sheila left her yesterday, but uncle Ronnie and aunt Liz did a great job.

The retail part of Christmas has been largely forgotten this year, which in itself is a blessing. Through all of the stuff we've gone through recently, we should come out of this Christmas in better shape than usual. The doctors encourage us to be hopeful that this disease will go into spontaneous remission because everything looks so good. We've spent less money than we usually would during this time. We didn't have time to do anything but concentrate on Madelyn. All things considered, this is the best Christmas ever.

Today we are getting ready for Santa. We'll most likely go to Christmas Mass tomorrow. Thank you for your continued support through prayer, phone calls, and an abundance of well wishing cards. We'll try to keep things up to date. Until we get the results of the tumor biopsy back (projected for the 1st week in January) most of our posts will be about Madelyn and her development. She is close to rolling over and seems unaffected by the surgical wound on her belly.

Thank you for stopping by. We'll post more again tomorrow.

With our sincere wishes for a truly blessed holiday season,
The Bell Family