Connor's Corner

Monday, December 29, 2008

Almost 2009!

Can you believe Christmas came and went so quickly? The little ones had a ball with all the new loot in the house, especially Samantha with her Leapster Learning System and Connor with all his new choo-choo trains. Last night me and Sam got his train table all put together-I'll try and get pics up really soon of Connor playing, he LOVES his new toy so much! Samantha also had her REAL birthday and is thrilled to have her own camera. I am not quite sure what she is planning on taking pictures of, lol, but I'll post those too when she does. :)

Connor is doing pretty good. He has a bad diaper rash right now from a tummy bug he had a couple days ago, and he still is avoiding walking certain places...He started his pre-meds before his steroid dose this month and we are hoping he does well with them again.

It is looking like we are going to stick with the current meds for a 3-6 months longer than planned (I can't remember if I posted about this already) So this will NOT be the last cycle of steroids. I am happy with this decision, especially since he is doing so well on this plan.

I hope everyone had a Merry Christmas. Please keep our friend David in your prayers, his mother past away early Christmas morning...We are thinking of you David and sending you our love.


Thursday, December 25, 2008

Merry Christmas

Yep-Sharing old pics again, but this time I have a better reason than just not having new ones to share ready yet, lol. The Christmas Story always reminds me of when I was pregnant. Here I was with Samantha in December 2005, the Christmas before Connor was born, and we had just found out we were going to have a baby boy! I guess I get nostalgic at Christmastime about being pregnant, since I was pregnant with ALL the kids during one Christmas or another. Also, thinking of Mary, heavily pregnant on a donkey with no place to go-my heart just hurts thinking, "If they only knew what gift she carries?" So that is the reason for my old pic tonight...

Tonight we had Christmas Eve dinner at my mothers house and exchanged family gifts. It was so much fun, although quieter than usual without Ryan and Stacy home. (Miss you guys!) Connor loved his cash register and other gifts! Samantha loved all her presents and just hanging out with her family. I was able to enjoy a glass of wine-this is the first Christmas in a longgg time I haven't been pregnant or nursing for about 6 years! :) Don't bother doing the math-yes, they both nursed quite a while, haha.

Connor is doing good, still avoiding parking lots, not walking as much as normal-but more than last week thank goodness. Thanks for all the prayers! Hospital was smooth yesterday-infusion went well, and we don't go back to Atlanta until the 6th of January.

We are working on a new "plan of action" with Dr. George and it looks like we are going to stay with the Decadron for a while-but not past a year. We are about to hit 6 months, so that means we are at the half-way point if we do a year of this steroid. After a year, the risks start to go WAY up for osteoporosis and other bad side effects to set in...anyway-this gives us time to figure out the best plan for Connor after steroids.

Connor got to see Santa at the hospital which made his day! Santa gave him a cute little truck to take home. It is amazing to see the people at Scottish Rite who go out of their way to make a difference in these kids lives. "Santa" was from the fire department with helpers from the police department as well. They had TONS of gifts loaded up for all the kiddos stuck at the hospital at this time of year. It was just heartwarming to see SO many people making a difference by trying to make someone else a little happier.

Merry Christmas to all our family and friends! Thank you so much for all the support you have given us. You guys are the special people in our life that make a difference every day-not just at Christmas, by loving and praying for our Connor and all of us to make it through each day and each new challenge. Love to all of you and many blessings for 2009!


Sunday, December 21, 2008

"One-of-Those" updates...

Wanted to let everyone know that Connor needs some extra prayers right now. He has had some set-backs creep back up on us...slowly (just slow enough for me to try and hope it wasn't really happening)

For the last month he hasn't wanted to walk in parking lots. Then, he stopped walking in our front yard. Which was a HUGE thing, since his favorite activity is playing outside. Now he doesn't want to play in the backyard either. We think he is having some shakiness in his legs and just a general unsureness about his balance, making him scared to walk outside.

Tonight he wanted to go for a walk very badly with his doggy Belle, but instead of just coming with us-he headed to his little wagon we keep in the garage and just sat there and waited for me to come and pull him...Anyone who knows him in person knows this is completely NOT like him. :(

So, Samantha walked Belle and I pulled Connor along in the wagon to see the Christmas lights. He had fun seeing the decorations, but made no move to get out and play.

There have been other little things too. Lots of stroller time-yesterday at Samantha's school Christmas party I knew I better bring the stroller-not just for his sake, but for mine. He is getting pretty heavy to be carrying long distances-like all the way from the car, to her classroom, and stopping to check in at the office, while holding lots of bags. He was quite content to ride along, but I was happy he did get out and stand near Samantha during the party.

We also went to The Landings to see the Clydesdale Horses that came to town-and Connor stayed in the stroller the WHOLE time. Again, not like between all of this, he is spending lots of time crawling at home.

Hopefully, Tuesday's IVIG and the next steroid treatment will get him back on his feet again full-time.

Ryan and Stacy made it safely to the wintry northwest a few minutes ago. Thanks for all the prayers for their traveling safety-it seems it is much needed with all this crazy weather! :)

Please keep all the little children with OMS in your thoughts and prayers this holiday season. So many are suffering, and there are just so few clear answers on how to help these kids.


Tuesday, December 16, 2008

"Who were we kidding?"

Tonight I was browsing through some pics from this time last year (note above pics) I guess feeling thankful of how far our boy has come in these past 12 months-when I noticed something for the first time.

Connor was missing quite a bit of hair and we didn't even know it! :) How is that for blissful ignorance? I knew I had an incredibly hard time fixing his hair each day, but for some reason, I remember excusing it to his curls-that they must be curling up and leaving bare I would slick it down with his baby brush again and again, lol. "Oh no-it couldn't be the chemo making me see his scalp!" It is funny now-but I guess we were so glad he still had hair at all, that the thinning just went by unnoticed until now.

He had a good day today-his mouth problems seem much improved lately, so thank you to all for prayers sent on his behalf-they are working! :-) His appetite has improved and he is feeling well. He is VERY excited about all the Christmas decorations around town, his favorite part of the day is driving in the car, so he can see all the lights and trees.

Much Love,

Monday, December 15, 2008

"Fun in the Tub"

I snapped these of Connor a few days ago when he was having a great time just splashing around in the tub. It was a real surprise to actually catch a genuine smile on his face! :-)
The weekend is over too soon again-it flew busy getting ready for Christmas. Today Sam put up some decorations outside (to impress Connor I think) I'll try and get a picture tomorrow night, it looks real cute.
He was good at church today, a little scared of the singing since he hadn't been in a while. I don't really like him around that many people at once in such a packed space...Luckily no one was coughing or sneezing on him.
Not much going on this week-just ballet for Samantha, speech therapy for Connor and Ryan and Stacy leave Saturday for Washington State-so they are scrambling to do everything they want to do here before they go into the coming week. Next week is vacation week for Sam-not sure if we are doing much yet-I know we have clinic on Tuesday the 23rd (fun vacation day, huh Sam, lol?)
More soon and God Bless,

Thursday, December 11, 2008

"Holiday Playgroup Fun"

Connor had the BEST time today at playgroup.

The topic today was "Holiday Fun" and there were gingerbread houses and cookies to decorate, stickers to play with, a rice & bean box to dig in with holiday toys buried in it, a choo-choo train, and best of all-Santa came! He sat in a corner the ENTIRE hour and waited for the kids to warm up to him and come over. One of the therapists was waiting with her camera and whenever one of the kids got close-she snapped their pic with Santa! So hopefully I'll be getting a "face-shot" of Connor from her in my e-mail, since all I got was the back of Connor's head with Santa. :)

Connor was so cute with Santa-he was signing "please candy" over and over again to get more candy canes! Every time Santa gave him one-Connor went and gave it away to someone else. (Awww ) He probably did this 25 times, lol! Anyway-it was sweet to see him being so charming and cute and friendly. Daddy was pretty impressed with the house Connor made when we showed him afterwords.

Physically, he is doing well right now. He came through steroid week like a champ, thanks to the new med we decided to add to decrease the side effects of "roid-rage"
He has been having to take the Vicadin this week, just to cut down on the pain he experiences, but tonight he went to bed without any! (Yeah Connor) So now we should be good for a bit until round 6 next month.

On a sad note-our local hospital has made the decision to close the doors on the PICU unit forever. :( I cannot believe this is happening in a town as large as ours! All the more seriously ill children will go to Atlanta from now on. This doesn't really effect us, since all of Connor's treatments are already in Atlanta... But it DOES effect my sister who is an RN in the pediatric intensive care unit and has been for a long time. She still has a job, but a changing one now I suppose. I just think our city can do a lot better than this.

Love to all and thanks for checking on us,

Wednesday, December 10, 2008

Birthday Fun

We had a great time this past weekend celebrating Samantha's 6th birthday. She won't officially be 6 until the 27th (a day she shares with me and her Aunt Laurie) but we always have her party early since it is so close to Christmas. The theme was a "Nutcracker Ballet". Thanks to all who helped us make it so special for her!
Here is her cake...
Samantha posing!

Me doing Samantha's "ballerina" make-up
Happy Birthday Samantha! We love you SO much!

Saturday, December 6, 2008

Flashes of Hope


Here is one of the pics taken a few months ago by Flashes of Hope when they came to visit The Aflac Cancer Center in Atlanta, where we go for Connor's treatments. What an amazing organization! The people were wonderful and so patient and friendly. We were given an entire session of photos-all for free. Thank you FOH!

Another tough day at home (for both the little ones) Connor spent most of the day in my bed watching Thomas the Train. Then he napped for quite some time-he did eat a good dinner tonight, which was wonderful to see. Samantha was still home with her tummy bug and throwing up-she missed a field trip today and was more upset about that than the vomiting! Poor baby :) She took a shower late this afternoon and it perked her up a bit and the party plans go on...

Tomorrow at 2pm our house is going to be transformed into a Nutcracker Ballet! I can't wait to post pics-the cake turned out so cute. Hard to believe Samantha is turning 6!!! Such a big girl lately too, wanting to get her ears pierced is her latest obsession, lol. I don't know about that yet.

Love to all,

Thursday, December 4, 2008

"Choo-Choo Day"

Today was supposed to be a really fun day for Connor-it was train day at playgroup and right now trains are his favorite thing to play with...he is still feeling puny and just not well. Could be the meds, could be some touches of the virus he had last week still upsetting his system-but whatever it is-we are ready for it to go away! We made it to playgroup and it started good, but after a while Connor very clearly expressed his desire to leave. He kept pointing to the door and saying, "Baaa" as in "BYE" and was signing "all done". :-) Pretty clear don't you think? His therapist was so pleased he was communicating-she said I probably should listen to him and go ahead and call it quits and leave-so we did. Here are some pics of him from this morning-you can really tell in the 2nd pic how rough the last few weeks have been on him. He just looks very tired and his face, which should be pretty puffy from the steroids, is looking almost thin (for him)

Samantha has caught the throwing up bug and was home from school today. We hope she is better in time for her party Saturday.

We missed Fantasy in Lights today because of all this-so we hope to go next week sometime. We can't wait to see Connor's reaction to all the pretty Christmas lights! Ryan, Stacy, and Samantha love it too-no matter how many times we see it, it is still magical.

I'm VERY excited about all the links on the right-hand side of the blog I have been collecting! When Connor was first diagnosed, there were hardly any stories out in "cyberspace" about other kids going through the same thing as he is, fighting OMS. Not surprising-since only 1 in 10 million people are diagnosed with this condition each year. If you have time-check out Connor's friends from all over the world, battling each day to beat OMS. Thanks to all who emailed me their kids sites to share. :)

Thanks for checking on us. Please keep praying for a cure to be found for Connor and the rest of the children like him.


Tuesday, December 2, 2008

Took Connor in...

Woke up AGAIN today to find Connor in a bed full of vomit. I felt SO bad, we checked on him a bunch last night, so it must have happened sometime after 1 am. Still pulling on his ears, so I took him to the doctor-mostly to rule out anything more serious going on.

No ear infection or strep-probably just a virus causing the throwing up (which I figured) but the mouth pain and not eating I was really hoping he would say is strep, so it would go away with treatment.

He said the ears could be hurting if his jawline is hurting from the steroids. Maybe, just don't know for sure...

Hopefully tomorrow he will feel a little better and eat a little too. I was thinking of getting some of those Carnation Instant Breakfast shake things to see if he could get some nutrition in that way-all he ate today was a few bites of oatmeal. That was it for the WHOLE day. He will drink milk, but even his favorite foods aren't tempting him. This has been going on for a month almost (the not eating) Please pray that it is all just him feeling yucky and nothing else. He sure could use a break right now.

Samantha was home sick today as well. Just coughing mostly, but bed enough to keep her home. We are planning on going to Fantasy in Lights Thursday at Callaway Gardens-so I hope everyone is perkier by then.

Stacy is frantically busy with Science Fair, we are all ready for that to be over. Her tri-board turned out awesome!!! Ryan got lucky on this one and didn't have to do a he has been busy reading mostly.

Love to all-

Monday, December 1, 2008

Check Out New Pics!

I added a new slideshow to the area right above this post...just various pics from 2008. Hard to believe it almost 2009!

Connor seems to be over the tummy bug he has had-still not eating much and acting like his mouth is giving him problems still. Tonight he took the first dose of the new medicine he will take before each steroid cycle to try and combat the intense mood problems he experiences
(and us, lol) We should know by the weekend if it is going to help or not. Usually after he takes the steroids, he will spend hours just screaming and crying, frustrated easily, one minute okay-the next minute freakijng out over nothing really...He wants something, we give it to him, the next minute he is throwing it and screaming for something else! Racing around, never stopping, happy and sad, laughing then crying, no voice left from crying so terribly, hitting, won't let me dress him, feed him, put him in the carseat, go to stores, nothing makes him happy for long-changing his diaper is like World War 3! The only downtime during steroid time is when he is sleeping, which thank goodness, he is sleeping pretty okay at the moment-still comes to our room a lot to sleep with us-but we don't care as long as he goes to sleep, you know?

We saw The Nutcracker Ballet last night (me, Stacy, and Samantha) It was beautiful and helped to get us all in the Christmas spirit a little more...Samantha started coming down with a cold though, and spent today trying to recover in time for school tomorrow. Hopefully she will be back to herself in a couple days. She has a big weekend coming up (her 6th birthday party) that we are all excited about. My little baby girl is going to be 6! I don't know where the time has gone?

Happy December Everybody, thanks for peeking in on us!

*Our Family*


"Connor's 3rd Birthday in Pics"

Before OMS Onset....

Connor was SO happy and interactive-then OMS struck at 15 months old and he changed overnight...

"Holiday Slideshow 2008"

"A Year In Pictures-2008"

Slideshow Stacy Made!

Connor's 2nd Birthday April 2008

Halloween 2006

Connor George Khoury

Connor George Khoury