"Holiday Social 2009"

My handsome nephew Steven, so grown up!

Stacy, my lovely little girl...

My babies ready for the big night!

Ryan looking handsome in his tie

Stacy looking gorgeous!

Is it okay if I shed a tear or two over these pictures?? I am the mom after all, and don't most moms get teary-eyed seeing their kids suddenly looking like they are on the verge of being grown up, lol? I sure did tonight, I am so very proud of my kiddos-getting into the school they both wanted-working extra hard to make it happen and succeeding! Good reason to celebrate!
They attended the high schools holiday social tonight and had a great time. The favors were adorable, wine glasses filled with gel candles and the name of their school and the date written in gold lettering on them-so beautiful! We look forward to 3 more years of them maturing and learning and watching them grow...
Connor was in terrible pain on the way to the festivities-so bad we dropped the kids and went directly to a drugstore to get him some much needed Motrin. Me and Stacy had to massage his legs the entire time in the car just to keep the crying at bay...this joint pain he gets is just soo hard to watch him suffer with! The Motrin did its magic, and we were off to enjoy some Christmas lights while the kids were at the social. Connor and Samantha LOVED one house in particular that goes all out with their light display, so cute seeing their reactions!
Tomorrow is a big day for the little ones-Connor's 1st class Christmas party, followed by one for Samantha's class. Can't wait for the fun!! I probably went overboard (sorry teachers, lol) with the planning for Connor's class-I couldn't help myself. I did little stocking for each of the kids with their pictures on the front and filled the to act as "goody bags", and we will have a pizza party and book exchange for the little ones.
Today Connor and I went to visit Samantha's 1st grade class and we decorated gingerbread houses, I'll post pics once we bring them home! Adorable! Connor ate as many candies as he put on his house, lol, it was funny to watch him. Then he played outside with all the "big kids" He is so tall though he is almost as big as some of the 1st graders. Strange to see him interacting with so many kids at one time-we keep him away from large groups in general, so I was glad he did okay with all the chaos going on...
Love to all,
Debbie

Our Hero!!!

Clear CT Scan! We are elated and so excited to report that Connor is still NED and doesn't need another scan until the summer, woo-hoo! We saw the doctor today and he is very pleased with everything, the scan and Connor's continuing to do so well. Thanks for all the prayers and support during the scan-anxiety. It means so much to me and Sam to know how loved and cared for our little guy is. We are so blessed!

We discussed how much longer we are going to continue the steroids, looks like it will be around another year. That is good news and bad news-good because the very thought of weaning him off of the steroids scares me, the possibility of his OMS relapsing when the medications are withdrawn is frightening. He could lose words, his ability to walk, etc. I don't want to think like that but it is hard not to remember where he was and we don't want to risk all that he has gained...but, it becomes very dangerous to stay on these drugs too long, then you get a whole other set of problems from the side effects, in Connor's case, bone issues, cataracts, etc. We are going to see an opthalmologist soon just to check and make sure there isn't any eye damage beginning...

We have kept busy with lots of fun Christmas activities...and more to come! Hope everyone is enjoying the holiday season. Love to all!

Debbie

Here we go!

Please keep the prayers coming for good test results on the CT scan early tomorrow morning! Our brave boy will be in the radiology department drinking the contrast over a two hour period, then get his IV which he will receive the IV contrast through, sedated and scanned...no appointment afterwards with the doctor so we aren't sure when we will get the results. Hopefully the next day (Wednesday)

He knows he is going to the doctor, but I am sure he will be upset as soon as he sees he is in the radiology department, so hard to see your baby scared! Praying that he feels comforted and as calm as possible and that he remains NED now and always.

Blessings and more...

Hopefully Thanksgiving was as special for all of you as it was for us. We had a good time over at my mothers house(lots of yummy food, Mmm) and mostly just spending time together and watching the kids enjoy themselves.

Connor has been so happy lately! It has been fun to see him laughing, playing, giggling, and silly. We went to the mall last weekend and he climbed right up onto Santa's lap! Even said, "Pools" when Santa asked him what he wanted for Christmas, translation: tools :-) He still has his very hyper, active side that I struggle to keep up with, but it is such a blessing to see him like this.

The only thing that put a damper on the holiday weekend was Connor had quite a bit of pain during this round of steroids...by the 3rd day he was screaming if I even moved his legs when changing his clothes. His mouth also gave him trouble, probably a sore jaw. Through it all, he still manages to get up every day and give each day his all! He is going to speech therapy twice a week now and working SO hard there to get some words out. It is like his mouth just doesn't know how to do it right...He loves his therapists toys, especially a farm he plays with there-so that gave me a good idea for Christmas.

It is hard to shop for him because he really doesn't play like typical kids. He likes to play, but it seems like he prefers just taking in his environment and following me around, "helping" me do everything I do. Some days it feels like I still have a young baby in the house because he can't be left alone for a minute or he might hurt himself or make a huge mess. Today he was alone for only a couple of minutes while I took the trash out and he got a childproof lock off the cabinet and filled the dishwasher with an entire box of detergent! With him so much stronger and taller now, it feels like there is no "safe-place" to keep him anymore. Gates and locks don't work, and he doesn't have enough understanding or self-control to not get into things. I am hoping the older he gets the more this will ease...

Next Tuesday in Atlanta he has his scheduled CT scan to check for any possible tumors. Always a super scary time for us! No easy way to do this test either...2 BIG cups of foul- tasting contrast to drink and an IV in his hand. His port cannot be used since they need to also inject contrast intravenously and that could damage his port. Please send prayers his way for him to remain NED!!! (no evidence of disease) Love to all!

Debbie