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.
Love,
Debbie
Connor's Corner
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Monday, December 29, 2008
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!
Love,
Debbie
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 him...in 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.
Love,
Debbie
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 him...in 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.
Love,
Debbie
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 spots...so 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,
Debbie
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 by...so 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,
Debbie
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,
Debbie
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!
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,
Debbie
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.
Love,
Debbie
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 project...so he has been busy reading mostly.
Love to all-
Debbie
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 project...so he has been busy reading mostly.
Love to all-
Debbie
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!
Deb
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!
Deb
Saturday, November 29, 2008
Ut-oh!
We awoke this morning to Connor not feeling good at all. I am not sure what is wrong, it could be a virus, or something else? Poor baby threw up badly this morning and again tonight at Nini's house. The rest of the day he seemed alright, a little quieter than usual, and still refusing to eat much at all. In fact, he didn't eat any dinner tonight before he got sick again...this evening he began pulling on his ears, so I am worried about ending up at the after-hours clinic tomorrow to see a doctor. I hope fever stays away-or some IV antibiotics might be needed (which means a trip to Atlanta since our local hospital does not want to treat him anymore)
I forgot to mention that his hearing test came back normal! He now has most of the paperwork in order to start school next year in the STEPS program for delayed children, if he is able.
Ut, oh-he is awake and wants me to lay down with him.
Better run-
Debbie
I forgot to mention that his hearing test came back normal! He now has most of the paperwork in order to start school next year in the STEPS program for delayed children, if he is able.
Ut, oh-he is awake and wants me to lay down with him.
Better run-
Debbie
Friday, November 28, 2008
Happy Thanksgiving!
Seems like a wonderful time of year to take a minute and remember all the things in life that we are thankful for! My list is quite long-we are blessed and fortunate in so many ways. Please indulge me while I reflect on the MANY gifts in my life.
Of course tops on my list is my beautiful family, especially my husband Sam who is everything in a husband and father I could ever ask and more. Always upbeat, funny, smart beyond words, handsome, thoughtful, kind, devoted, giving, supportive, (am I boring ya'll yet, lol?) and above all a wonderful leader for our family and a faithful follower of our Lord.
Great kids-you guys are awesome and surprise me each and every day by how much you have grown and changed and matured. I am the luckiest mother in the world to have four blessings named Ryan, Stacy, Samantha, and Connor.
Now I better just start listing or this could get REALLY long (he-he)
*My family, especially my twin sister Laurie-my best friend in the whole world!
*Sam's family-Sido and Tata and all the uncles
*The town we live in...I LOVE Columbus!
*Connor's doctor's and nurses who have taken such good care of him...Dr. George, Erika, Rebecca, Dr. Berenson, Dr. Mansfield, Dr. Rauschbaum, Ellen-the best speech teacher in the world, we love you...Resa and Debbie-we miss you guys! And all the other countless nurses and doctors who have touched our lives this past year and a half.
*CaringBridge, Blogger, Carepages, etc...WOW-what a world that has opened thru these pages. Meeting all these families via the internet is life-changing and just an incredible way to reach out in such a fast-paced world.
*Samantha's school-I am SO grateful for the warm welcome she has received and the great education she is lucky enough to be getting from her sweet teachers. Thank you!
* A wonderful church that has stood by us and kept Connor in prayers continuously.
*All the support from friends and even strangers-we are so lucky to not only have Connor prayed for, but our other three children-this has been tough for them as well. (This means all of you too!) :-)
*Hospitals close enough to drive to (Scottish Rite) An amazing facility filled with the absolute best doctors and nurses I have ever met in my life.
*Playgroup-this is Connor's only chance to be around other kids and I am so thankful to Ellen & Shannon for making it possible for Connor to attend.
We enjoyed today tremendously-watched the parade this morning, Connor's favorite float was the safari one in the Philadelphia parade on a different channel than the Macy's one. He saw a giant bird on there that he just loved! Then we realized the city looked nothing like NY and that we were missing the "Big" parade and quickly change the channel. I didn't know there was more than one parade! LOL
Dinner was yummy-Mom really outdid herself this year. All the kids had their certain favorites-Stacy liked the mashed potatoes best, Ryan liked the deviled eggs and ceaser salad, Samantha liked the deviled eggs and rolls, and Connor just nibbled on a little bit of everything. But NOT the Thanksgiving cupcakes I made-I think he thought it was too pretty to eat-he just kept staring at it in awe and rearranging the toppings...I tried to get a piece off for him, but he grabbed the bit of cupcake and put in BACK on the cupcake-like to make it pretty again. Awww, so sweet!
I am tired and off to bed, but I wanted to say how thankful we are for all the prayers for our family and the support as well. Love to all!
Debbie
Oh-BTW, I saw this blinkie and thought it was adorable. It is for kids that use sign language.
Connor has the Baby Signing Time videos and that is what "signing time" means, lol.
Of course tops on my list is my beautiful family, especially my husband Sam who is everything in a husband and father I could ever ask and more. Always upbeat, funny, smart beyond words, handsome, thoughtful, kind, devoted, giving, supportive, (am I boring ya'll yet, lol?) and above all a wonderful leader for our family and a faithful follower of our Lord.
Great kids-you guys are awesome and surprise me each and every day by how much you have grown and changed and matured. I am the luckiest mother in the world to have four blessings named Ryan, Stacy, Samantha, and Connor.
Now I better just start listing or this could get REALLY long (he-he)
*My family, especially my twin sister Laurie-my best friend in the whole world!
*Sam's family-Sido and Tata and all the uncles
*The town we live in...I LOVE Columbus!
*Connor's doctor's and nurses who have taken such good care of him...Dr. George, Erika, Rebecca, Dr. Berenson, Dr. Mansfield, Dr. Rauschbaum, Ellen-the best speech teacher in the world, we love you...Resa and Debbie-we miss you guys! And all the other countless nurses and doctors who have touched our lives this past year and a half.
*CaringBridge, Blogger, Carepages, etc...WOW-what a world that has opened thru these pages. Meeting all these families via the internet is life-changing and just an incredible way to reach out in such a fast-paced world.
*Samantha's school-I am SO grateful for the warm welcome she has received and the great education she is lucky enough to be getting from her sweet teachers. Thank you!
* A wonderful church that has stood by us and kept Connor in prayers continuously.
*All the support from friends and even strangers-we are so lucky to not only have Connor prayed for, but our other three children-this has been tough for them as well. (This means all of you too!) :-)
*Hospitals close enough to drive to (Scottish Rite) An amazing facility filled with the absolute best doctors and nurses I have ever met in my life.
*Playgroup-this is Connor's only chance to be around other kids and I am so thankful to Ellen & Shannon for making it possible for Connor to attend.
We enjoyed today tremendously-watched the parade this morning, Connor's favorite float was the safari one in the Philadelphia parade on a different channel than the Macy's one. He saw a giant bird on there that he just loved! Then we realized the city looked nothing like NY and that we were missing the "Big" parade and quickly change the channel. I didn't know there was more than one parade! LOL
Dinner was yummy-Mom really outdid herself this year. All the kids had their certain favorites-Stacy liked the mashed potatoes best, Ryan liked the deviled eggs and ceaser salad, Samantha liked the deviled eggs and rolls, and Connor just nibbled on a little bit of everything. But NOT the Thanksgiving cupcakes I made-I think he thought it was too pretty to eat-he just kept staring at it in awe and rearranging the toppings...I tried to get a piece off for him, but he grabbed the bit of cupcake and put in BACK on the cupcake-like to make it pretty again. Awww, so sweet!
I am tired and off to bed, but I wanted to say how thankful we are for all the prayers for our family and the support as well. Love to all!
Debbie
Oh-BTW, I saw this blinkie and thought it was adorable. It is for kids that use sign language.
Connor has the Baby Signing Time videos and that is what "signing time" means, lol.
Wednesday, November 26, 2008
Please keep Connor in your thoughts...
This weekend is another high-dose steroid weekend followed by the 2 weeks of pain and steroid psychosis which means hours upon hours of crying and hurting.
We have hope for this cycle though-Dr. George is putting him on a new medicine to combat the "craziness" he gets while on the steroids. Most leukemia patients who take HALF the amount of steroids Connor does, can't deal with the side effects so we feel we have no choice but to try and help him get through this any way we can.
He is making so much progress right now mentally that we can't afford for him to be physically unable to learn for half of the month. KWIM?
Can you tell we didn't want to add yet another med to his little body? But I feel this is a good move to at least try for this cycle to se if he tolerates it better. It sure can't get much worse!
He starts it a couple days before the steroids, so we give it to him Thanksgiving night for the first time. Pray that it helps him please. The poor baby is just really suffering right now and could use a break. Love to all and thanks for checking on all of us.
Have a Happy and Blessed Thanksgiving,
Debbie
We have hope for this cycle though-Dr. George is putting him on a new medicine to combat the "craziness" he gets while on the steroids. Most leukemia patients who take HALF the amount of steroids Connor does, can't deal with the side effects so we feel we have no choice but to try and help him get through this any way we can.
He is making so much progress right now mentally that we can't afford for him to be physically unable to learn for half of the month. KWIM?
Can you tell we didn't want to add yet another med to his little body? But I feel this is a good move to at least try for this cycle to se if he tolerates it better. It sure can't get much worse!
He starts it a couple days before the steroids, so we give it to him Thanksgiving night for the first time. Pray that it helps him please. The poor baby is just really suffering right now and could use a break. Love to all and thanks for checking on all of us.
Have a Happy and Blessed Thanksgiving,
Debbie
Monday, November 24, 2008
Puppy Post Continued...
Seems one bath isn't enough when it comes to getting large quantities of olive oil out of doggie hair! Today was the first day of Sam's vacation and we went to Target to buy some Dawn Dishwashing liquid to see if that might "cut the grease" so to speak, lol. It did thank goodness, and Belle is back to normal. No sooner was this saga over with and Sam was pouring some old leftover Sprite out in the backyard and Belle was lapping it up. Good grief! He has got to stop this or his time off fro m work is going to drive me batty. :)
We did some Christmas shopping for the kids today and Connor enjoyed looking at decorations again at all the stores. His favorite? A giant pink flamingo wearing a Santa hat! Silly boy-he was so cute signing bird while he was staring at it in awe. The thing was tacky, but I suppose very beautiful and colorful to him.
We had a meeting at Samantha's school and afterwords we got incredibly lucky and were able to watch her class practice for the Thanksgiving play tomorrow! Yeah!!! We are still upset that we won't be there for the real thing-but this was so wonderful to get to see Samantha singing and saying her famous, "Mercy me!" line. (adorable) Aunt Kristi is still planning to make us a DVD of the live performance tomorrow while we are in Atlanta for Connor's treatment (Thanks Kris, I love u) and we will be able to all sit down and watch it together at home later this week.
Ryan and Stacy are looking forward to vacation...I think we all need some downtime right now.
Stacy will be busy finishing up her project for Science Fair, but other than that-just family stuff going on the next few days...
Thanks for the well wishes, prayers, and love. I hope I haven't hurt anyone's feelings if I haven't been as good as I should be with calls, emails, etc...I am not too proud to admit I am overwelmed right now with all that is going on mentally, physically, and emotionally-not just with Connor-but with trying to keep everything normal and fun for the rest of the family. I am struggling every day to keep my head above water with all the appts. and driving, and kids and their schedules, the house, Sam, and the businesses, etc. Please know I haven't forgotten anyone, and I am trying to get back in the swing of things after a much needed break. Love to ALL.
God Bless,
Debbie
We did some Christmas shopping for the kids today and Connor enjoyed looking at decorations again at all the stores. His favorite? A giant pink flamingo wearing a Santa hat! Silly boy-he was so cute signing bird while he was staring at it in awe. The thing was tacky, but I suppose very beautiful and colorful to him.
We had a meeting at Samantha's school and afterwords we got incredibly lucky and were able to watch her class practice for the Thanksgiving play tomorrow! Yeah!!! We are still upset that we won't be there for the real thing-but this was so wonderful to get to see Samantha singing and saying her famous, "Mercy me!" line. (adorable) Aunt Kristi is still planning to make us a DVD of the live performance tomorrow while we are in Atlanta for Connor's treatment (Thanks Kris, I love u) and we will be able to all sit down and watch it together at home later this week.
Ryan and Stacy are looking forward to vacation...I think we all need some downtime right now.
Stacy will be busy finishing up her project for Science Fair, but other than that-just family stuff going on the next few days...
Thanks for the well wishes, prayers, and love. I hope I haven't hurt anyone's feelings if I haven't been as good as I should be with calls, emails, etc...I am not too proud to admit I am overwelmed right now with all that is going on mentally, physically, and emotionally-not just with Connor-but with trying to keep everything normal and fun for the rest of the family. I am struggling every day to keep my head above water with all the appts. and driving, and kids and their schedules, the house, Sam, and the businesses, etc. Please know I haven't forgotten anyone, and I am trying to get back in the swing of things after a much needed break. Love to ALL.
God Bless,
Debbie
Sunday, November 23, 2008
Tree's, Nutcracker's, & a Marinated Doggy?
The weekend is just about over and Connor is doing good! What a relief after another bumpy week. The mouth issues got bad enough to call the doctor...without looking in his mouth-just by what I described to them and the kind of pain I was describing-the doctor does NOT think these are mouth sores we are dealing with. He thinks the spots I saw in Connor's mouth might be from where he possibly bit his cheek or maybe a little thrush going on which we know he has been struggling with...He thinks it is jaw pain. It makes sense-the way he is holding his fingers under his tongue, and won't eat anything but soft foods and drinks...poor baby.
So not only does he have the intense pain to deal with for the two weeks out of the month following the 3 days of high dose steroids he takes each month-now his jaw is killing him all month? He said yes, pain in and around the jawline is common. He said to give him the Vicadin to help with the pain since the Motrin isn't helping. Thankfully today he is doing much better, so maybe it is easing up a bit. I just hate all these side effects-but without the steroids-he will be back to having a full relapse and probably lose his speech, his walking, all that he has learned the last few months...
We set the Christmas tree up today! Connor is VERY interested in any and all decorations this year, so we figured a jumpstart on decorating might be a good idea. The house looks festive and ready for lots of fun-good thing because we have a couple parties coming up soon.
Samantha is having "A Nutcracker Ballet" party for her birthday this year. She is really into her ballet, can you tell? :-) I am not quite sure what we are doing at this party yet-but I have a feeling dancing is involved.
Oh, here is a funny story that happened tonight.
Sam grilled tonight for dinner, with lots of help from Samantha and Belle, when suddenly Samantha and the dog came in the house and Belle was all wet.
None of us could figure out how the dog got wet when it wasn't raining outside...as I was setting the table, Belle was running around all soggy-and the floor was getting slippery.
Then, Sam comes in and confesses what happened. He threw all the marinade the meat was in out in the grass after he put the meat on the grill!
So Belle had been outside just rolling around in his "mystery marinade" for who knows how long?
GROSS! She must have been in heaven with all those raw meat smells and the oils and spices, lol...Off to the bathtub for her! She smelled bad, and for those of you that have ever seen Sam marinate meat-you know what I mean by "mystery" :-} Probably a whole can of diet soda thrown in with the oil!
We'll be in Atlanta Tuesday, so please keep Connor and all the children in your prayers for a smooth day for all.
Thanks and love to all!
Debbie
So not only does he have the intense pain to deal with for the two weeks out of the month following the 3 days of high dose steroids he takes each month-now his jaw is killing him all month? He said yes, pain in and around the jawline is common. He said to give him the Vicadin to help with the pain since the Motrin isn't helping. Thankfully today he is doing much better, so maybe it is easing up a bit. I just hate all these side effects-but without the steroids-he will be back to having a full relapse and probably lose his speech, his walking, all that he has learned the last few months...
We set the Christmas tree up today! Connor is VERY interested in any and all decorations this year, so we figured a jumpstart on decorating might be a good idea. The house looks festive and ready for lots of fun-good thing because we have a couple parties coming up soon.
Samantha is having "A Nutcracker Ballet" party for her birthday this year. She is really into her ballet, can you tell? :-) I am not quite sure what we are doing at this party yet-but I have a feeling dancing is involved.
Oh, here is a funny story that happened tonight.
Sam grilled tonight for dinner, with lots of help from Samantha and Belle, when suddenly Samantha and the dog came in the house and Belle was all wet.
None of us could figure out how the dog got wet when it wasn't raining outside...as I was setting the table, Belle was running around all soggy-and the floor was getting slippery.
Then, Sam comes in and confesses what happened. He threw all the marinade the meat was in out in the grass after he put the meat on the grill!
So Belle had been outside just rolling around in his "mystery marinade" for who knows how long?
GROSS! She must have been in heaven with all those raw meat smells and the oils and spices, lol...Off to the bathtub for her! She smelled bad, and for those of you that have ever seen Sam marinate meat-you know what I mean by "mystery" :-} Probably a whole can of diet soda thrown in with the oil!
We'll be in Atlanta Tuesday, so please keep Connor and all the children in your prayers for a smooth day for all.
Thanks and love to all!
Debbie
Wednesday, November 19, 2008
"Playing Catch-Up"
Here it is the week before Thanksgiving already! We are looking forward to a funfilled holiday and some much needed family time doing nothing more than hanging out, decorating, and seeing family. Okay-for those of you who know me, you know all that will take place after some careful planning, school letting out, a carpet cleaning, and a clinic visit for "you-know-who" LOL But it WILL happen...
So the good news for the week is that Connor is learning new things every day. He learned how to sign Choo-Choo for his trains and is using that one a lot, he is still trying to talk and even said Bubba at Ryan this week (yeah!) and Ball at a ball at Walmart with no prompting. :) Amazing!
He is waving bye-bye more often. Just so much more aware of the world around him.
The bad news is that he isn't getting to enjoy his steroid downtime too much right now due to some pretty severe mouth problems he has had for a few days now. It started with him not wanting to brush his teeth, then not wanting to eat, and now he is screaming in pain and keeps his fingers in his mouth while crying and holding the area under his tongue.
It doesn't seem to be a bad case of thrush this time-although he has had a small touch of it for a while now, pretty common for kids with compromised immune systems...it looks like painful mouth ulcers, something he managed to avoid during his months on chemo and all the time on prednisone. There is no way we are going to be able to get him to swish and spit any of the remedies/preventatives that might be able to help him so the only thing I know to try is something like Orabase to ease the pain a bit. I am putting a call in to the doctor in the morning for advice-he can't wait until Tuesday, poor baby hasn't hardly eaten in days. Even his favorite foods.
Today me and Connor went to Blanchard to eat lunch with Samantha-it was so fun to see her with all her friends! We sat by ourselves at a little table and even though Connor couldn't eat-he really enjoyed watching all the other kids in the cafeteria. I was so proud of Samantha watching her carry her lucnch tray all by herself, she sure seems like a big girl now.
Then me and Connor were able to visit one of the STEPS classrooms where he might be attending next year. It was REALLY hard to picture him in there without me all by himself. :(
So very much to learn...I know it is what is best for him in the longrun-but my goodness, I need to pray for peace on this matter-because just the thought makes me feel weak about leaving him there.
Thanks for checking on us-
Deb
So the good news for the week is that Connor is learning new things every day. He learned how to sign Choo-Choo for his trains and is using that one a lot, he is still trying to talk and even said Bubba at Ryan this week (yeah!) and Ball at a ball at Walmart with no prompting. :) Amazing!
He is waving bye-bye more often. Just so much more aware of the world around him.
The bad news is that he isn't getting to enjoy his steroid downtime too much right now due to some pretty severe mouth problems he has had for a few days now. It started with him not wanting to brush his teeth, then not wanting to eat, and now he is screaming in pain and keeps his fingers in his mouth while crying and holding the area under his tongue.
It doesn't seem to be a bad case of thrush this time-although he has had a small touch of it for a while now, pretty common for kids with compromised immune systems...it looks like painful mouth ulcers, something he managed to avoid during his months on chemo and all the time on prednisone. There is no way we are going to be able to get him to swish and spit any of the remedies/preventatives that might be able to help him so the only thing I know to try is something like Orabase to ease the pain a bit. I am putting a call in to the doctor in the morning for advice-he can't wait until Tuesday, poor baby hasn't hardly eaten in days. Even his favorite foods.
Today me and Connor went to Blanchard to eat lunch with Samantha-it was so fun to see her with all her friends! We sat by ourselves at a little table and even though Connor couldn't eat-he really enjoyed watching all the other kids in the cafeteria. I was so proud of Samantha watching her carry her lucnch tray all by herself, she sure seems like a big girl now.
Then me and Connor were able to visit one of the STEPS classrooms where he might be attending next year. It was REALLY hard to picture him in there without me all by himself. :(
So very much to learn...I know it is what is best for him in the longrun-but my goodness, I need to pray for peace on this matter-because just the thought makes me feel weak about leaving him there.
Thanks for checking on us-
Deb
Saturday, November 15, 2008
Finally Friday!
Connor hanging out at the Atlanta Zoo
The week is over and I am really glad. Why? Hopefully the next two weeks will be good ones for Connor-full of fun, playing, and laughing.
Today went rough again. I am really concerned over how hard this is getting to be on his little body. It doesn't seem like he should be hurting for THIS long every month. Today Aunt Laurie brought the kids over to play and she got to see the "before Hydrocodone" and "after Hydrocodone" Connor. Like night & day. I am thinking he should be himself again by Monday-if not, I'll have to put a call in just to get some advice on meds, etc...I don't want to overload him, but I don't want him hurting either. The doctor explained that some people really have severe pain from the steroids and for us not to be afraid to use the pain meds to help him through it-but still, I am a mom-gotta worry, right?
Not much planned for this weekend, just trying to get some errands done. I need to plan Samantha's 6th birthday party and take her shopping for a flower girl dress. She is going to be so adorable! Sam's next youngest brother is getting married in January. I can't wait to see Samantha all dolled up.
Connor had a blast at playgroup the other day. It was at the museum and he ran all over and played quite a bit in the chalk room. He was covered in a rainbow of colors, and especially liked Daddy showing up to play!
Have a wonderful weekend everyone,
Deb
The week is over and I am really glad. Why? Hopefully the next two weeks will be good ones for Connor-full of fun, playing, and laughing.
Today went rough again. I am really concerned over how hard this is getting to be on his little body. It doesn't seem like he should be hurting for THIS long every month. Today Aunt Laurie brought the kids over to play and she got to see the "before Hydrocodone" and "after Hydrocodone" Connor. Like night & day. I am thinking he should be himself again by Monday-if not, I'll have to put a call in just to get some advice on meds, etc...I don't want to overload him, but I don't want him hurting either. The doctor explained that some people really have severe pain from the steroids and for us not to be afraid to use the pain meds to help him through it-but still, I am a mom-gotta worry, right?
Not much planned for this weekend, just trying to get some errands done. I need to plan Samantha's 6th birthday party and take her shopping for a flower girl dress. She is going to be so adorable! Sam's next youngest brother is getting married in January. I can't wait to see Samantha all dolled up.
Connor had a blast at playgroup the other day. It was at the museum and he ran all over and played quite a bit in the chalk room. He was covered in a rainbow of colors, and especially liked Daddy showing up to play!
Have a wonderful weekend everyone,
Deb
Wednesday, November 12, 2008
Ya'll Bout Ready?
Connor as Batman at the Halloween Playgroup
Look what I made!
Hi all! I have tried SO many times to leave a post on this site-with no luck and I am so sorry to leave so many of you hanging and worrying about our little guy. The fault is mine (and our still not-totally fixed computers) but I do feel terrible for the long delay. FOr some reason our computer will not let me on to my own blog! Very frustrating...so I will try and sum up the recent events as quickly as possible.
Lets see, first of all, Connor is doing good just having a rough go of it. It has been tough for him on the steroids-tough on the whole family really-but especially Connor. Still dealing with too much pain each month, more than expected and increasing each time. Followed by a week of intense mood swings that cause him to be very cranky and tired and just plain miserable for two weeks out of EVERY month. That is our struggle right now. But we deal with it as best we can-give him the Vicadin to ease the aching joints, and lots of trial and error to see what helps from moment to moment as he rages and fusses...then, magically, we get our sweet Connor back for the next two weeks-loving, kind, sharing, kissing, hugging, smiling, playing, like a light switch going on/off is how sudden the change is...so that is one reason for the lack of time lately for most everything-we are living in two week bursts, trying to pack all the fun stuff into the good times and trying to comfort and sooth during the harder times.
We have been lucky though to be able to go do some fun things with all the kids lately though. I'll need to post pics of our outings! We went to the Atlanta Zoo, to the Pumpkin Patch, and Callaway Gardens. As the holidays approach we can't wait to do the things we do every year, like go to Fantasy in Lights and just decorating the house will be extra exciting this year seeing it through Connor's eyes. He is already interested in the decorations he is spotting around town-so the tree should be a big hit!
Right before Thanksgiving we go back to Atlanta for Connor's hearing test and regular treatments. No real game plan in place yet for after the 6th dose of Decadron is over-we might possibly extend it or he might go off of them completely. Either scenerio is scary to me, but it is in God's hands. Literally, because even the doctors do not know what is best.
And now-the best news of all! Connor has begun making a few sounds! He now says:
Da-da
Ma-ma
Ba-ba (his bottle)
Wa-wa (water)
Belle Belle (the dog)
We are so thrilled and thankful that he is finally progressing in the right direction. So far to go, but he has come from so far behind and I have to keep reminding myself of that.
We are working on transitioning him into the STEPS program with the school district for the 2009-2010 school year. We have high hopes of him being approved for at least 3 days a week. This is based on his needs, so he might qualify for anywhere from 2,3, or 5 days per week for a few hours each day. He will be able to receive his therapy while he is there, and just being around the other kids will teach him so much! Of course-the thought of leaving him anywhere is enough to send me in a panic, but I know it is the best thing for him.
The rest of the kids are well, Ryan made it into the National Junior Honor Society so he is mighty proud of himself. Samantha is enjoying ballet and learning to read. Stacy is making all A's and is excited about the Twilight movie coming out...and Sam-he is doing good too. Working hard as usual and excited for Christmas, it is his favorite holiday. Thanks for checking on us and for all the love and prayers.
Love to all,
Debbie
Look what I made!
Hi all! I have tried SO many times to leave a post on this site-with no luck and I am so sorry to leave so many of you hanging and worrying about our little guy. The fault is mine (and our still not-totally fixed computers) but I do feel terrible for the long delay. FOr some reason our computer will not let me on to my own blog! Very frustrating...so I will try and sum up the recent events as quickly as possible.
Lets see, first of all, Connor is doing good just having a rough go of it. It has been tough for him on the steroids-tough on the whole family really-but especially Connor. Still dealing with too much pain each month, more than expected and increasing each time. Followed by a week of intense mood swings that cause him to be very cranky and tired and just plain miserable for two weeks out of EVERY month. That is our struggle right now. But we deal with it as best we can-give him the Vicadin to ease the aching joints, and lots of trial and error to see what helps from moment to moment as he rages and fusses...then, magically, we get our sweet Connor back for the next two weeks-loving, kind, sharing, kissing, hugging, smiling, playing, like a light switch going on/off is how sudden the change is...so that is one reason for the lack of time lately for most everything-we are living in two week bursts, trying to pack all the fun stuff into the good times and trying to comfort and sooth during the harder times.
We have been lucky though to be able to go do some fun things with all the kids lately though. I'll need to post pics of our outings! We went to the Atlanta Zoo, to the Pumpkin Patch, and Callaway Gardens. As the holidays approach we can't wait to do the things we do every year, like go to Fantasy in Lights and just decorating the house will be extra exciting this year seeing it through Connor's eyes. He is already interested in the decorations he is spotting around town-so the tree should be a big hit!
Right before Thanksgiving we go back to Atlanta for Connor's hearing test and regular treatments. No real game plan in place yet for after the 6th dose of Decadron is over-we might possibly extend it or he might go off of them completely. Either scenerio is scary to me, but it is in God's hands. Literally, because even the doctors do not know what is best.
And now-the best news of all! Connor has begun making a few sounds! He now says:
Da-da
Ma-ma
Ba-ba (his bottle)
Wa-wa (water)
Belle Belle (the dog)
We are so thrilled and thankful that he is finally progressing in the right direction. So far to go, but he has come from so far behind and I have to keep reminding myself of that.
We are working on transitioning him into the STEPS program with the school district for the 2009-2010 school year. We have high hopes of him being approved for at least 3 days a week. This is based on his needs, so he might qualify for anywhere from 2,3, or 5 days per week for a few hours each day. He will be able to receive his therapy while he is there, and just being around the other kids will teach him so much! Of course-the thought of leaving him anywhere is enough to send me in a panic, but I know it is the best thing for him.
The rest of the kids are well, Ryan made it into the National Junior Honor Society so he is mighty proud of himself. Samantha is enjoying ballet and learning to read. Stacy is making all A's and is excited about the Twilight movie coming out...and Sam-he is doing good too. Working hard as usual and excited for Christmas, it is his favorite holiday. Thanks for checking on us and for all the love and prayers.
Love to all,
Debbie
Thursday, October 23, 2008
"My Little Pumpkins"
Here is a new pic of the little ones at the pumpkin patch last weekend. They had so much fun riding around in the cart holding tightly to their treasures! Even the rest of us had a great time walking around enjoying the weather and all the decorations.
Another busy week almost over, Connor did so terrific at playgroup today and really enjoyed helping make the pinata to my surprise :) Next week should be fun getting to whack it apart with a bunch of toddlers! LOL
Love to all,
Deb
Sunday, October 19, 2008
A Sight To See!
Connor has spent most of the weekend running around exploring like most any other two year old boy. Just the way we like to see him! Yesterday we went to the pumpkin patch with all the kids-they each picked out a pumpkin, except Ryan who got an ear of corn, lol! It DID look pretty cool...alll dried out and funny colored. Connor kept trying to eat it.
Then we went to the park-even Belle came along. Ryan and Samantha fed a loaf of bread to the ducks, Stacy walked Belle, and poor Sam tried to keep up with Connor-who almost fell in the lake and manged to step in some ducky doo-doo :-) I felt helpless with my broken foot to do very much, but it was pretty out and a good day to be outside.
We are going back to Atlanta for Connor's treatment right before Halloween, and he does his next steroid dose at the beginning of the month, so for now we are just enjoying our little boy getting a chance to be just that-a little boy. Not on drugs that help him but also make him so mad and upset and hurt all the time...we have about two weeks each month of "our Connor" and it is wonderful to see the real him again. It is almost like he is in disguise or in costume when he is taking the steroids it changes his personality so drastically. So for now-we are just taking it all in and enjoying every second.
Thanks for checking on us!
Debbie
Then we went to the park-even Belle came along. Ryan and Samantha fed a loaf of bread to the ducks, Stacy walked Belle, and poor Sam tried to keep up with Connor-who almost fell in the lake and manged to step in some ducky doo-doo :-) I felt helpless with my broken foot to do very much, but it was pretty out and a good day to be outside.
We are going back to Atlanta for Connor's treatment right before Halloween, and he does his next steroid dose at the beginning of the month, so for now we are just enjoying our little boy getting a chance to be just that-a little boy. Not on drugs that help him but also make him so mad and upset and hurt all the time...we have about two weeks each month of "our Connor" and it is wonderful to see the real him again. It is almost like he is in disguise or in costume when he is taking the steroids it changes his personality so drastically. So for now-we are just taking it all in and enjoying every second.
Thanks for checking on us!
Debbie
Tuesday, October 14, 2008
All Is Well!
I am so, so, very sorry for the time between updates...quite a few of you have let me know I have scared the daylights out of you and for that I apologize. The scan came back stable-music to our ears! No cancer, free and clear for a whole year now-praise the Lord! Thank you everyone for all the love and support and mostly the prayers made on Connor's behalf for healing and for peace during his struggle against cancer and OMS. It is far from over, but we have come so far, and it has been so much easier with all of our family and friends love and friendship.
Hope you like the new pics! They were actually taken is August and early September. Samantha and Connor went to a princess birthday party (the girls dressed up, not the boys, lol) and Samantha was TinkerBelle. Connor had fun hanging out with cousin Adam and watching all the silly girls :)
The other pics were taken opening night at the new restaurant "La Margarita" In the last picture, Ryan is on the left, and Stacy is on the far right. Cousin Kevin is in the corner looking handsome. We are loving the restaurant, it is a fun place to just hang out and have fun-I see a lot of parties there in our future!
Anyway-back to why we have been MIA...Viruses! On the computer, not us, fortunately. Anyway-wiped out everything and we had to start over from scratch...luckily-Sam had my pics saved on disc so they were spared. And the other reason...
I broke my foot. Actually fractured it. I feel really silly even talking about it I am so embarrassed, but the fact is I slipped in the kitchen and did a very ungraceful sliding split, that ended with my left knee crashing into the tile floor and my left foot cracking as it got jammed sideways into the floor.
The culprit of the slippery spot? Her picture is posted on this site (not sure for how much longer, lol) And she immediately started licking me as I hit the ground! You'll be happy to know that her housebreaking IS coming along nicely, despite this incident that caused the fracture...anyway, hopefully I'll be all better soon, but in the meantime the trip to Seaworld has to be bumped back a few weeks. There is just no way I can walk that much at a theme park right now.
We are having fun with all the "fall happenings"...festivals, pumpkins, parties, cookies, etc...I am going to try and get some pics of the kids this weekend when we go to the pumpkin patch. Connor thinks the pumpkins are pretty cool, he just stares and points and them, absolutely fascinated!
Love and miss all of you! I have so much catching up to do. I have tried to stay up to date on all my on line friends, but I am way behind-so send me an email if I have missed anything major I should know about. Take care and God Bless,
Debbie
Thursday, September 25, 2008
New Look!
Decided to switch things up a little, and re-do the site. That isn't the only new look going on-Mr. Connor has a new haircut that is simply adorable! I tried to cut it, and it ended badly...luckily our friends at Pigtails and Crewcuts were able to repair my mistakes :) It is pretty short in the back, but actually really practical for him since he is outside so much playing in the gorgeous weather we have had lately.
He is doing good, still having some off and on pain in his legs, especially at night, but otherwise doing well. Been working hard on "basic understanding" and today he followed a direction. I told him to go throw something away-and he did it for me, and later for Nini too! I was so thrilled for him! We all clapped and made a big deal over it, I can't wait to tell his speech therapist when we see her again.
Next week is scan time again, and Monday will be the extra tough day for Connor. The contrast is SO awful, and he is at a tough age for forcing him to drink it if he doesn't want to. So, we will try our best, and if we have to, we will use a syringe to force it down him-anything to avoid the horrors of the NG tube like last time. It has to be given SLOWLY, over two hours, so it is hard to see him suffering that long. We are praying for an easy as possible time for him, good results, and looking forward to moving to the 6 month scan schedule! Woo-hoo!
He is doing just wonderful on the high-dose steroids, we are very pleased with how well the drugs are controlling the jerking movements. Even the ones he was experiencing with his lungs are barely present now. The mood swings and achy joints are not fun side effects, but it could be MUCH worse, so we are counting our blessings.
As always-thanks for checking on us and Connor. Please keep him in your prayers next week for clear scans and also for Ryan, Stacy, and Samantha to have a smooth week being shuffled around a bit, while we go back and forth to Atlanta. It is rough on the whole family and they love Connor so much, I think sometimes what they imagine happening to him at the hospital, is worse than the reality...but it is next to impossible to truly help them understand that although it IS rough on Connor-it is also all he has ever known. So while they might get freaked out by a simple shot-that is a piece of cake for Connor...he doesn't like it, but he DOES accept it to a degree, and although he cries over painful procedures, he also is able to bounce back quickly and go about more fun things, like checking out favorite toys at the clinic. To him-that is his playground, as well as a hospital.
Love,
Debbie
He is doing good, still having some off and on pain in his legs, especially at night, but otherwise doing well. Been working hard on "basic understanding" and today he followed a direction. I told him to go throw something away-and he did it for me, and later for Nini too! I was so thrilled for him! We all clapped and made a big deal over it, I can't wait to tell his speech therapist when we see her again.
Next week is scan time again, and Monday will be the extra tough day for Connor. The contrast is SO awful, and he is at a tough age for forcing him to drink it if he doesn't want to. So, we will try our best, and if we have to, we will use a syringe to force it down him-anything to avoid the horrors of the NG tube like last time. It has to be given SLOWLY, over two hours, so it is hard to see him suffering that long. We are praying for an easy as possible time for him, good results, and looking forward to moving to the 6 month scan schedule! Woo-hoo!
He is doing just wonderful on the high-dose steroids, we are very pleased with how well the drugs are controlling the jerking movements. Even the ones he was experiencing with his lungs are barely present now. The mood swings and achy joints are not fun side effects, but it could be MUCH worse, so we are counting our blessings.
As always-thanks for checking on us and Connor. Please keep him in your prayers next week for clear scans and also for Ryan, Stacy, and Samantha to have a smooth week being shuffled around a bit, while we go back and forth to Atlanta. It is rough on the whole family and they love Connor so much, I think sometimes what they imagine happening to him at the hospital, is worse than the reality...but it is next to impossible to truly help them understand that although it IS rough on Connor-it is also all he has ever known. So while they might get freaked out by a simple shot-that is a piece of cake for Connor...he doesn't like it, but he DOES accept it to a degree, and although he cries over painful procedures, he also is able to bounce back quickly and go about more fun things, like checking out favorite toys at the clinic. To him-that is his playground, as well as a hospital.
Love,
Debbie
Thursday, September 11, 2008
"Flashes of Hope"
We have been going to the Aflac Cancer Center for just over a year now-and I always wondered if we would happen to be there on one of the days that the group Flashes of Hope comes (every other month). They are a group of professional photographers that donate their time (and talent) by taking pictures of the kids and their families for free at the clinic. We had a nice surprise when we walked in yesterday and they were there! Connor was great, much to our surprise, and sat for a few photos... The people were wonderful, and knew all the tricks to getting smiles out of little kids. One word-Bubbles! :)
The day was long, as expected, but Connor did great. He had a low grade fever, but didn't require any extra treatment since it wasn't over 101 F. He received his IVIG and the new antibiotic he will get for the next 4 months.
Poor guy had a rough week. He took his high dose steroids Saturday, Sunday, and Monday...by Monday he was in terrible pain-all over his lower back, hips, and legs. (common side effect of high dose steroids, is flu-like symptoms, bad body & muscle aches) I couldn't stand to see him like this and Dr. George called in some hydrocodone, in case it got worse. Motrin has been a lifesaver, and as of today,
(Thursday) he is STILL tugging and pulling at his little legs in pain...so awful to know he is hurting, but the steroids DO seem to be helping the OMS-so on we go with treatment.
Looks like we will be heading back to Atlanta on the 30th for the big CT scan. Keep those prayers coming for good reports! We sort of expect Connor to require the NG tube, but are hoping he might drink the contrast. (we can dream, right? lol) The next day will be routine stuff, IVIG & antibiotic. We can't wait for this scan to be over-after this one he will jump to a 6 month scan schedule! Woo-hoo, I can hardly wait!
Connor had speech today and we had good news on the age level of his development from his therapist. She thinks he is measuring at a 20 month old level-and he is 28 months-so that is only 8 months behind! :) Not in the speech area of course, there he measures at about a 15 month old level...but it IS progress, so we'll take it! Afterwords, we went to playgroup-where Connor really seemed to enjoy himself, although he stayed in my lap most of the time-he played and smiled a lot.
Sorry if any of you haven't heard much from us lately. Just keeping tight schedules with all that is going on. We appreciate all the love and prayers for our family, it helps us tremendously to not feel so alone in this.
September 13th is Childhood Cancer Awareness day. I plan on wearing my gold pin-and of course remembering all the newest angels in heaven this year. If you can, maybe find a way to celebrate the day. I can think of lots of ways-find a site like Lunch For Life, or Coins 4 Kids-if you want to donate to the cause, or give blood, or just say a special prayer for a cure. That one for sure! Love to all-
Debbie
The day was long, as expected, but Connor did great. He had a low grade fever, but didn't require any extra treatment since it wasn't over 101 F. He received his IVIG and the new antibiotic he will get for the next 4 months.
Poor guy had a rough week. He took his high dose steroids Saturday, Sunday, and Monday...by Monday he was in terrible pain-all over his lower back, hips, and legs. (common side effect of high dose steroids, is flu-like symptoms, bad body & muscle aches) I couldn't stand to see him like this and Dr. George called in some hydrocodone, in case it got worse. Motrin has been a lifesaver, and as of today,
(Thursday) he is STILL tugging and pulling at his little legs in pain...so awful to know he is hurting, but the steroids DO seem to be helping the OMS-so on we go with treatment.
Looks like we will be heading back to Atlanta on the 30th for the big CT scan. Keep those prayers coming for good reports! We sort of expect Connor to require the NG tube, but are hoping he might drink the contrast. (we can dream, right? lol) The next day will be routine stuff, IVIG & antibiotic. We can't wait for this scan to be over-after this one he will jump to a 6 month scan schedule! Woo-hoo, I can hardly wait!
Connor had speech today and we had good news on the age level of his development from his therapist. She thinks he is measuring at a 20 month old level-and he is 28 months-so that is only 8 months behind! :) Not in the speech area of course, there he measures at about a 15 month old level...but it IS progress, so we'll take it! Afterwords, we went to playgroup-where Connor really seemed to enjoy himself, although he stayed in my lap most of the time-he played and smiled a lot.
Sorry if any of you haven't heard much from us lately. Just keeping tight schedules with all that is going on. We appreciate all the love and prayers for our family, it helps us tremendously to not feel so alone in this.
September 13th is Childhood Cancer Awareness day. I plan on wearing my gold pin-and of course remembering all the newest angels in heaven this year. If you can, maybe find a way to celebrate the day. I can think of lots of ways-find a site like Lunch For Life, or Coins 4 Kids-if you want to donate to the cause, or give blood, or just say a special prayer for a cure. That one for sure! Love to all-
Debbie
Monday, September 8, 2008
My Hero...
September 6th came and went very quietly around here...it was the one year anniversary of when we found out Connor has neuroblastoma and OMS. Sam and I couldn't help but reflect on the painful memories each time we looked at the clock and thought back to that exact moment of time a year ago and what we were doing.
All the questions and all the unknowns we had that day! More than I could even type if I wanted to, and fear like I have never felt before. Long days of testing followed, along with surgery on the 26th, and as we moved into October-the weight on our hearts lifted tremendously when we knew exactly what we were dealing with...good news that our Connor has Stage I NB, devastating news that he is one of the "lucky" ones with the extremely rare side effect of neuroblastoma called Opsoclonus Myoclonus Syndrome (OMS) Something so rare, most doctors have never even heard of it, and so rare that only a few doctors in the whole world treat it...not something you want to hear when it comes to your baby son.
We have come a long way in these 365 days since our battle began against this relentless cancer, and in our case, even more unrelenting autoimmune disease that has robbed our baby of a normal childhood and possibly a normal adulthood. We have had to face the fact that our perfect little boy, is not going to have an easy road ahead of him (we still struggle with this daily) and although he is perfect in our eyes-he is not seen that way by others. Already at his tender age of 2 yrs. 4 months we get the looks of pity, confusion, and the questions about WHY he doesn't do this, or know that, etc...this is bound to increase as he gets older and is so drastically different from his peers, in his cognitive ability, and lack of speech. This is where me and Sam draw strength from each other, and we try and boost each others spirits on days when one of us feels particularly down about Connor's health.
And if we have a VERY bad day-then all we have to do is look at our sweet Connor and he gives us all the encouragemnt we need to keep fighting for him and getting him the support he needs to improve. So we continue the assault on his tiny body with powerful drugs to fight off the attacks on his brain-and try to keep him sheltered from germs, that might cause a relapse of all his OMS symptoms.
A special package came in the mail on the one year mark of this journey...a box filled with "Hero Beads" to be strung on a string to demonstrate all our baby has been through in the last year. Each bead represents a test, a treatment, etc... and comes with a legend to show you the meaning behind each bead. I had ordered it for Connor to be a momento for when he is older-not knowing how moved I would be to see all the beads strung together with his name in the center-14 rounds of chemo, 15 IVIG infusions, 8 sedations, 2 hospital stays, nuclear medicine scans, MRI's, surgery, blood draws, finger pokes, x-rays. Fitting name-because Connor is our hero.
It hurts to think of all the "tests to come" he will have to endure to earn more beads...I never forget through all this heartache, how blessed we are that he was spared from the worst this cancer has to give-and with it I suppose we have a small amount of "surviviors guilt" that keeps me focused on the journeys of so many other children fighting NB. Our son has his own scars from his battle and a future not quite as bright as we had hoped and dreamed of-but a FUTURE none the less, something we never take for granted in the midst of all the death and sadness in the NB world.
We pray for the OMS families and NB families daily, and pray to God to watch over Connor and help him along his path...
Thanks for checking on us, and for the love & prayers-
Debbie
All the questions and all the unknowns we had that day! More than I could even type if I wanted to, and fear like I have never felt before. Long days of testing followed, along with surgery on the 26th, and as we moved into October-the weight on our hearts lifted tremendously when we knew exactly what we were dealing with...good news that our Connor has Stage I NB, devastating news that he is one of the "lucky" ones with the extremely rare side effect of neuroblastoma called Opsoclonus Myoclonus Syndrome (OMS) Something so rare, most doctors have never even heard of it, and so rare that only a few doctors in the whole world treat it...not something you want to hear when it comes to your baby son.
We have come a long way in these 365 days since our battle began against this relentless cancer, and in our case, even more unrelenting autoimmune disease that has robbed our baby of a normal childhood and possibly a normal adulthood. We have had to face the fact that our perfect little boy, is not going to have an easy road ahead of him (we still struggle with this daily) and although he is perfect in our eyes-he is not seen that way by others. Already at his tender age of 2 yrs. 4 months we get the looks of pity, confusion, and the questions about WHY he doesn't do this, or know that, etc...this is bound to increase as he gets older and is so drastically different from his peers, in his cognitive ability, and lack of speech. This is where me and Sam draw strength from each other, and we try and boost each others spirits on days when one of us feels particularly down about Connor's health.
And if we have a VERY bad day-then all we have to do is look at our sweet Connor and he gives us all the encouragemnt we need to keep fighting for him and getting him the support he needs to improve. So we continue the assault on his tiny body with powerful drugs to fight off the attacks on his brain-and try to keep him sheltered from germs, that might cause a relapse of all his OMS symptoms.
A special package came in the mail on the one year mark of this journey...a box filled with "Hero Beads" to be strung on a string to demonstrate all our baby has been through in the last year. Each bead represents a test, a treatment, etc... and comes with a legend to show you the meaning behind each bead. I had ordered it for Connor to be a momento for when he is older-not knowing how moved I would be to see all the beads strung together with his name in the center-14 rounds of chemo, 15 IVIG infusions, 8 sedations, 2 hospital stays, nuclear medicine scans, MRI's, surgery, blood draws, finger pokes, x-rays. Fitting name-because Connor is our hero.
It hurts to think of all the "tests to come" he will have to endure to earn more beads...I never forget through all this heartache, how blessed we are that he was spared from the worst this cancer has to give-and with it I suppose we have a small amount of "surviviors guilt" that keeps me focused on the journeys of so many other children fighting NB. Our son has his own scars from his battle and a future not quite as bright as we had hoped and dreamed of-but a FUTURE none the less, something we never take for granted in the midst of all the death and sadness in the NB world.
We pray for the OMS families and NB families daily, and pray to God to watch over Connor and help him along his path...
Thanks for checking on us, and for the love & prayers-
Debbie
Thursday, September 4, 2008
Quick Update
Sorry for the lack of posts-STILL no home computer. Everything is going well, Connor is doing better than he has in quite a while. (yeah!) We think the high dose steroids have made a big improvement with his myoclonus. Much less body jerking going on-still having some of his hiccups/lung jerks, but improved overall. This weekend he takes round 2-wish us luck with the mood swings, it gets ugly!
He also has been learning about time out, and it is helping a lot with some of the naughty behavior. Also, yesterday during speech, we decided to concentrate for this week on him learning the signs for open, stop, out, and go. He is picking them up pretty quickly right now and tonight at dinner when he wanted a drink-he did the sign all on his own! So cute!
Samantha started her dance lessons Tuesday night...the first class was hard for her, she was scared to death with butterflies in her stomach. But afterwords she seemed to love it! The dance school is very close to the restaurant so me and Sam ran over for a quick bite to eat unitl the class was done.
Speaking of the restaurant-it is awesome!!! The decor, the service, the food especially-all of it has come together so well. Stop by if you get a chance and have a margarita. (yum-yum) All the kids seem to love it there (even Ryan) so it is fun to have a "new" place to hang out. LaMargarita is off to a great start, I'll post some pics as soon as our computer is fixed.
Today is my mom's birthday and we are celebrating tomorrow night with Grandma Brown who is visiting from Reno. Happy Birthday Mom! We love you!
He also has been learning about time out, and it is helping a lot with some of the naughty behavior. Also, yesterday during speech, we decided to concentrate for this week on him learning the signs for open, stop, out, and go. He is picking them up pretty quickly right now and tonight at dinner when he wanted a drink-he did the sign all on his own! So cute!
Samantha started her dance lessons Tuesday night...the first class was hard for her, she was scared to death with butterflies in her stomach. But afterwords she seemed to love it! The dance school is very close to the restaurant so me and Sam ran over for a quick bite to eat unitl the class was done.
Speaking of the restaurant-it is awesome!!! The decor, the service, the food especially-all of it has come together so well. Stop by if you get a chance and have a margarita. (yum-yum) All the kids seem to love it there (even Ryan) so it is fun to have a "new" place to hang out. LaMargarita is off to a great start, I'll post some pics as soon as our computer is fixed.
Today is my mom's birthday and we are celebrating tomorrow night with Grandma Brown who is visiting from Reno. Happy Birthday Mom! We love you!
Monday, September 1, 2008
Tears and More Tears...
Today was a very sad day for the neuroblastoma world, and for a very special little boys family...Max past away last night, in his parents bed, with both of them by his side. This sweet little soul will forever be remembered by all those whose life he touched. He fought a long and brave battle...please pray for his mom, dad, brother and sister. You can read more about Max-click on the Mashed Potatoes for Breakfast link and then on Max's Cancer.
Friday, August 29, 2008
"Going Gray"
Sorry for the sporadic posting-no computer lately, and the laptap frustrates me...spent yesterday running errands and dealing with some restaurant stuff. One of my errands was taking Connor to get his hair trimmed. In the bright salon lighting I was horrified to look down at the top of Connor's head and see what is causing the "highlighed" look several people have commented on-GRAY HAIR! Not a whole lot-but more than any 2 yr. old should have. :( His hairdresser Deb looked surprised, until I told her that it was probably caused by the latest round of treatments in Atlanta. It made me feel sad though, I guess seeing an outward sign of how potent and powerful these treatments can be on such little bodies...
Speech went well yesterday, we are going to try and get Connor to use his sign language on his own-without prompting...so far no luck-but Stacy is hard at work teaching him! She is sooo good with him and loves him so much.
At the restaurant today we had a visit from a couple whose grandson has OMS and lives in Kentucky. Sam met him last year at church, when the man prayed out loud for "All children with OMS" Sam was shocked-given how rare and unknown this disease is...I spoke to him on the phone last year, but it was nice to meet him today. His grandson is 4 and just started to walk-although he still has no language. Anyway, it was nice to speak to someone familiar with OMS.
Happy Labor Day Weekend!!!
Speech went well yesterday, we are going to try and get Connor to use his sign language on his own-without prompting...so far no luck-but Stacy is hard at work teaching him! She is sooo good with him and loves him so much.
At the restaurant today we had a visit from a couple whose grandson has OMS and lives in Kentucky. Sam met him last year at church, when the man prayed out loud for "All children with OMS" Sam was shocked-given how rare and unknown this disease is...I spoke to him on the phone last year, but it was nice to meet him today. His grandson is 4 and just started to walk-although he still has no language. Anyway, it was nice to speak to someone familiar with OMS.
Happy Labor Day Weekend!!!
Wednesday, August 27, 2008
Busy Bees!
Been lively at our house this week! Ryan & Stacy had a great time at sibling camp-totally worth the 10+ hours Sam spent getting them there and back! (Yes, I said 10+!)LOL :) Ryan had the most fun practicing his archery and Stacy liked the arts and crafts. Luckily-it mostly just sprinkled and the downpour began for them on the way home Sunday.
I slipped in some doggy water and broke a toe and Samantha has a back to school bug that kept her home today. Only the 3rd week of school, but it was bound to happen. I see flu shots in the near future for our family (minus Connor-he can't have one) Now we are hoping he doesn't catch Samantha's cold-it is so hard keeping him healthy this time of year.
In the morning we have speech, and some transitional paperwork to sign, to begin the process of getting him referred into the STEPS program, for when he turns 3 next April. It is a long process we have heard. Our hope is to get him into the program at Samantha's school, it will be great if they could be at the same location! (Great for Mommy!)
The restaurant is keeping us hopping busy too these days! If you get a chance or happen to drive by-take a look at "La Margarita Mexican Restaurant" over on Sidney Simons Blvd. It is bittersweet saying good-bye to The Mediterranean Cafe-but we are excited for a brand new start. We are doing some remodeling right now and hope to be open by this weekend. When I have more info-I'll pass it on...hope to see you there soon!
Take care,
Debbie
I slipped in some doggy water and broke a toe and Samantha has a back to school bug that kept her home today. Only the 3rd week of school, but it was bound to happen. I see flu shots in the near future for our family (minus Connor-he can't have one) Now we are hoping he doesn't catch Samantha's cold-it is so hard keeping him healthy this time of year.
In the morning we have speech, and some transitional paperwork to sign, to begin the process of getting him referred into the STEPS program, for when he turns 3 next April. It is a long process we have heard. Our hope is to get him into the program at Samantha's school, it will be great if they could be at the same location! (Great for Mommy!)
The restaurant is keeping us hopping busy too these days! If you get a chance or happen to drive by-take a look at "La Margarita Mexican Restaurant" over on Sidney Simons Blvd. It is bittersweet saying good-bye to The Mediterranean Cafe-but we are excited for a brand new start. We are doing some remodeling right now and hope to be open by this weekend. When I have more info-I'll pass it on...hope to see you there soon!
Take care,
Debbie
Sunday, August 24, 2008
"Running For Zoe"
The time is near for the Virginia Beach Rock 'n' Roll Half Marathon
Health & Fitness Expo: August 29 & 30, 2008
Race: August 31, 2008
This fundraiser is for our little friend, Zoe Cadence Walenius, cancer survivor and OMS warrior. Check out her site-she is a doll! Keep fighting Zoe, we are praying for you.
Saturday, August 23, 2008
Off to Camp Twin Lakes!
Yesterday we took the kids on a long drive about an hour from Atlanta, to the Camp Sunshine sibling camp at Camp Twin Lakes. We had a few hassles getting there (Stacy broke her glasses and Ryan realized he forgot to bring EVERYTHING about an hour into the 3 hour drive) It wasn't all bad-at least we realized how much the kids were looking forward to the weekend, when they were faced with the possibility of not going because of all the setbacks, lol. Stacy decided she could see well enough as long as she avoided archery :) (afraid she might shoot someone) and we stopped in Newnan and re-bought all the stuff Ryan needed. He felt so bad and is going to do some odd jobs to try and earn some money to pay us back (hint, hint if any body needs an able bodied 13 yr. old to help out with stuff-Ryan is available) :)
We got there, and the kids were treated so wonderful! Specially made engraved name tags, for all the brothers and sisters attending were a nice touch. They got their cabin assignments and met their counselors-then we all went to do some exploring. It was a beautiful place, tennis courts, lake, pool with slide, archery, boating, arts and crafts for the kids to do, etc...I can't wait to hear all about it tomorrow. Only downside has been the weather-but I hope the kids had fun even if they did get a little damp.
I just think it is awesome that this organization cares about ALL the children in cancer affected families. The brothers and sisters of these kids go through so much-they deserve every bit of fun they can get. Thanks Camp Sunshine!
Friday, August 22, 2008
Cool Quote
"A mother understands....what a child does not say."
I saw this tonight on a special needs message board and it struck me right away. Sure sums up it up, huh? I can see the frustration in Connor these days, especially with the moodiness-it makes it even more difficult to deal with the lack of language. Poor guy...tonight I went to Samantha's kindergarten orientation and it scared the daylights out of me! Not for her thank goodness-but for Connor's future. So much to learn, so far to go to catch up...overwhelming to put it mildly. Trying to take it day by day, but some days are tougher than others...will he learn to talk? To count? To read? I hope and pray he will!
I saw this tonight on a special needs message board and it struck me right away. Sure sums up it up, huh? I can see the frustration in Connor these days, especially with the moodiness-it makes it even more difficult to deal with the lack of language. Poor guy...tonight I went to Samantha's kindergarten orientation and it scared the daylights out of me! Not for her thank goodness-but for Connor's future. So much to learn, so far to go to catch up...overwhelming to put it mildly. Trying to take it day by day, but some days are tougher than others...will he learn to talk? To count? To read? I hope and pray he will!
Wednesday, August 20, 2008
Remembering an Angel...
There are many, many children who have touched our life since we first heard the word neuroblastoma-a whole community of different families with their own stories to tell. Today I wanted to share one of them with you, a little boy named Lucas Tran. Here is an entry from his mothers Caring Bridge page, through which SO many got to know this special boy who loved vacuum cleaners more than anything! His uncle lived with him and created a wonderful tribute to him through the pictures he took. If you can-take a few minutes and remember Lucas.
Debbie
SUNDAY, JULY 13, 2008 10:12 PM, PDT
My only sibling, Tommy (we call him Thong at home), who was a mechanical engineer turned professional photographer, created a story of Lucas' life from the beautiful photos he took (minus the last picture which was taken by Chinh). Tommy lived with us for about a year before Kira arrived and frequently visited afterward. He was here shortly after Lucas was born, shortly after diagnosis, during surgery in NY, spent most of the summer in NY with us last year, and cut his trip in Africa short when I told him Lucas was dying. Lucas was very fond of Tommy and gave him an endearing nickname that he made up--Dodi (dough-dee). In addition to hiding from Tommy and being chased by him, Lucas loved playing with Tommy's tripod, camera with an enormous lens and detached flash, pda phone, and stickering his suitcase. Thanks for the tribute Thong and, more importantly, for being such a big part of Lucas' life (and ours). Click here to view the photos and captions. You may need to maximize your window to see the captions. Warning: some of the photos are from the time of his death.
http://www.tommyimages.com/Projects/Lucas_Tran/slides/001-NN_0076-Neuroblastoma.html
Debbie
SUNDAY, JULY 13, 2008 10:12 PM, PDT
My only sibling, Tommy (we call him Thong at home), who was a mechanical engineer turned professional photographer, created a story of Lucas' life from the beautiful photos he took (minus the last picture which was taken by Chinh). Tommy lived with us for about a year before Kira arrived and frequently visited afterward. He was here shortly after Lucas was born, shortly after diagnosis, during surgery in NY, spent most of the summer in NY with us last year, and cut his trip in Africa short when I told him Lucas was dying. Lucas was very fond of Tommy and gave him an endearing nickname that he made up--Dodi (dough-dee). In addition to hiding from Tommy and being chased by him, Lucas loved playing with Tommy's tripod, camera with an enormous lens and detached flash, pda phone, and stickering his suitcase. Thanks for the tribute Thong and, more importantly, for being such a big part of Lucas' life (and ours). Click here to view the photos and captions. You may need to maximize your window to see the captions. Warning: some of the photos are from the time of his death.
http://www.tommyimages.com/Projects/Lucas_Tran/slides/001-NN_0076-Neuroblastoma.html
"How To Entertain a Toddler"
Me & Sam have been having to get creative on all these trips back and forth to Atlanta with Connor. He is good in the car, but gets pretty antsy after sitting for a couple hours...this pic is from our last trip-he got a kick out of me putting sunglasses on his Barney toy, lol. He does look silly, doesn't he? :)
No results back on the blood cultures-but Connor's fever was down and other than not eating much, he was doing good. Still moody, but walking was slightly improved (yah!) He even walked all the way from the car to the school to pick up Samantha today.
Speech therapy was this morning-no real strides in that area, but we did get some useful advice on dealing with his moodiness and on practicing sharing. Trying to teach sharing to a two year old on steroids is not easy!
We set up a "practice" sharing session tonight with Connor, Samantha, and Stacy-they all sat down to color with markers. Connor was leaping over the table to attack his sisters to give you an idea how that went, lol! It did cool off later on, and I thanked my helpers for their part in the practicing...Stacy suggested earplugs next time. Good idea!
It is very bittersweet to see school starting and Connor not able to go this year...hopefully next year will be his turn. In the meantime-I am working with him every day to try and teach him things he needs to learn. I see him improving-just so slowly it is frustrating. Please keep praying for him to learn some words and understand more-these prayers are badly needed!
God Bless,
Debbie
Monday, August 18, 2008
No Break for the Weary...
I think I jinxed things for Connor by saying how great it was that he was going to get a break from the hospital for 4 whole weeks. He spiked a fever over the weekend and since he has a compromised immune system from the chemo & steroids, along with a port...off to the hospital we went to make sure it isn't a line infection.
I called Atlanta and they said to take him straight in and he spent the morning getting blood cultures, antibiotics, and a chest x-ray done. We are wiped out! If the blood cultures come back positive-he goes back for an inpatient stay for more antibiotics. (but we would have to do this in Atlanta)
I think he just has a virus since his immune system is so down right now-but if there is an infection in his port, better safe than sorry...
Samantha had her first really good day at school today! :) That was especially good news after the difficult morning with Connor.I am so proud of her-she is being so brave!
That is about it, hoping the hurricane stays far, far, away from our neck of the woods since Ryan and Stacy are going to Camp Sunshine this weekend for sibling camp. They are starting to get excited about going since we got their supplies all organized. I got them rain ponchos in case of rain and they keep making fun of them, lol. I bet they won't be laughing if it starts pouring rain while they are there!
We are still seeing side effects from the steroids-Connor has had a temper like we have never seen before! He has been very possessive for the first time ever as well, especially with his markers. I am hoping the temper will fade as the month goes on until the next round.
Love and blessings,
Debbie
I called Atlanta and they said to take him straight in and he spent the morning getting blood cultures, antibiotics, and a chest x-ray done. We are wiped out! If the blood cultures come back positive-he goes back for an inpatient stay for more antibiotics. (but we would have to do this in Atlanta)
I think he just has a virus since his immune system is so down right now-but if there is an infection in his port, better safe than sorry...
Samantha had her first really good day at school today! :) That was especially good news after the difficult morning with Connor.I am so proud of her-she is being so brave!
That is about it, hoping the hurricane stays far, far, away from our neck of the woods since Ryan and Stacy are going to Camp Sunshine this weekend for sibling camp. They are starting to get excited about going since we got their supplies all organized. I got them rain ponchos in case of rain and they keep making fun of them, lol. I bet they won't be laughing if it starts pouring rain while they are there!
We are still seeing side effects from the steroids-Connor has had a temper like we have never seen before! He has been very possessive for the first time ever as well, especially with his markers. I am hoping the temper will fade as the month goes on until the next round.
Love and blessings,
Debbie
Saturday, August 16, 2008
Last Round is Over!
Here is a pic of Connor & Daddy relaxing together at clinic. Everything went pretty smoothly in Atlanta last Thursday. Only problem that came up is that it turns out Connor is allergic to the antibiotic he is supposed to take for the next 6 months, while his immune system is so suppressed ...he broke out in a rash all over and was itching like crazy. The PA saw him and suggested IV antibiotics that are given once a month, that have the same effect and ward off a certain kind of dangerous pneumonia. That is perfect for him, because they can put it through his port once a month during IVIG anyway! With the added bonus of us not having to torture him at home getting him to take his medicine-but it will add about an hour to his IVIG infusion.
So now-we watch and wait, and of course pray-that all these treatments work some kind of magic on Connor's development.
Our restaurant was robbed this morning, very early. Someone threw a brick through the glass door and took what they wanted. Some people are unbelievable! What a way to start the weekend, huh? The police and insurance have been contacted and hopefully the robber(s) will be caught. Doubt it-but I can hope.
Samantha's first week of Kindergarten is over. It was rough on her, but she made it. She starts getting upset about 1pm every day (when she used to get out of school) so I hope once she gets used to things, it will be easier for her.
Ryan and Stacy's week went okay-about the same as last year so far. They ALL seem to be enjoying the weekend. Thanks for checking on us!
Love,
Debbie
Thursday, August 14, 2008
Cutie Connor!
Someone has been hanging around the doggy too much! :) I took this picture tonight while trying to brush Connor's teeth. First he decided the toothbrush would be fun to carry in his mouth like a dog bone...then, he was crawling around like a puppy...and last, but not least-decided to go nite-nite like the puppy! And THAT is when I got this pic in the dog bed, awww. I love you Connor!
Long infusion(s) day today...I'll update later on how it goes. Please keep all the kiddos in your thoughts today, especially Samantha. She is trying so very hard to adjust to Kindergarten-made especially hard by a clinic day during her first week. Love you baby girl!
Stacy and Ryan are doing good in school, so far-a few hiccups, but nothing unmanageable. Can't wait for the weekend when we are all together again with no hospital worries for a bit! Love you both so, so much!
Thanks Aunt Laurie and Aunt Kristi for helping out this week! Ya'll are the best.
Tuesday, August 12, 2008
"The Couch Crew"
Can you believe it? I got a picture of the kids all together! Doesn't happen often,lol...It was back to school this week for Ryan, Stacy, and Samantha-everyone is having a rough time getting used to the newness of it all. I hope by the weeks end, they will all feel more settled in.
Tomorrow night is another sleepover for the kids at Aunt Lallie's, we go very early Thursday morning for the last infusion of Rituximab and another infusion of IVIG. Long day it will be! Then-A WHOLE MONTH BREAK! Yippee! I'll hardly know what to do-Just kidding, I'll find lots!
I heard from our nurse here at the local hospital yesterday and it was bad news. They have "officially" shut down the oncology unit for good this time (where we do IVIG most of the time) She is the last nurse to leave, and we will miss her. The timing isn't too bad for us though because Connor will now be getting IVIG every 4 weeks instead of every 3-so we had already planned on doing them in Atlanta since they will coincide with doctors appointments anyway. But it is sad that a town as big as ours won't be able to care for kids with these problems anymore.
No speech going on since Connor has been too busy with all his Atlanta appointments...next week we will get back on track with it I hope.
We are getting very concerned about a strange symptom Connor is having. It has been going on for about two months now and it is so scary listening to it when it happens.
Out of the blue-he will make this gasping for breath sound. Almost like half a hiccup sound. Happens randomly during the day-but all day long...probably at least 20 times a day I would guess. We just noticed a couple weeks ago that during these gasps he is usually having a body jerk of some kind (like his whole body will shudder or a part of his body will jerk) It happens so quickly-and most people either think he is playing or being silly, but he is not. We told the doctor about it last week and he listened to him breath and says his breathing sounds fine-but if this is OMS hitting his lungs, it is scary to us-even if his breathing sounds normal in between...another thing to investigate...
The Decadron finished with a bang! It was rough on Connor (and us) but he did great. Now he starts on his antibiotics that he will take every until he is off the steroids.
All for now!
Debbie
Sunday, August 10, 2008
Ut-oh! It's Mr. Crankypants...
Got off to a great start today-we really didn't notice any change in personality (he had his first does around 11:30 am) It became noticeable around dinnertime-he suddenly was crying, irritable, and just plain miserable. Poor Sam lost his temper with him, it was hard not too, but he felt bad after, for hollering at him... I got Connor in the tub and he went to bed good, thank goodness! So far he is still asleep :) Now we are praying for patience to get us through these few days of "Cranky-Connor" I plan on doing Tylenol tomorrow to help with the flu-like achy symptoms steroids can cause-maybe that will help.
I also need to get hold of the pharmacy...I didn't notice until we went to give him his morning pill that it said on the bottle for him to take THREE A DAYinstead of the two it was supposed to be. We figured out why though-it is 4mg tablets instead of 6mg! I wish the pharmacist had at least told me. Getting two down him is a lot harder than one at a time! Agg!
All for now-love and blessings!
Debbie
I also need to get hold of the pharmacy...I didn't notice until we went to give him his morning pill that it said on the bottle for him to take THREE A DAYinstead of the two it was supposed to be. We figured out why though-it is 4mg tablets instead of 6mg! I wish the pharmacist had at least told me. Getting two down him is a lot harder than one at a time! Agg!
All for now-love and blessings!
Debbie
Saturday, August 9, 2008
True Story: I'm a Chicken!
Well-I didn't do it...I didn't give Connor his pills today. Part of it was because I didn't have the strong tasting yogurt in the house that I hide it in and part of it was that I decided I wanted backup around in case he went crazy (can you tell I am expecting the worst, lol?) So, tomorrow morning is the new start day-with Daddy home and the Trix yogurt waiting in the fridge.
It is only for 3 days-so it won't be like the last time-thank goodness for that!
We plan on having a relaxing weekend together as a family. The last few weeks have been busy with appointments, house painting going on, and just lots of chaos. So we plan on doing some last minute school shopping, going swimming, and church on Sunday.
Speaking of church-I have a funny story to tell on the subject. A lot of people that know Connor, and what a handful he can be, are surprised he can make it through a church service! :) It is kinda funny! We don' have a nursery, so yes-he is with us in the pew for the entire time. My only guess is it must be God watching over us and being really happy we are there, and He helps keep Connor calm enough to last through most of the service. LOL
I hope he can keep going with us while his immune system is so suppressed for the next six months...sometimes it makes me really mad that other people come around to places like church and school when they are sneezing and coughing like crazy-even if I didn't have a child I was trying to keep away from all the wicked germs out there-it annoys me. I wish Connor would leave a mask on his face for certain situations-but anyone who knows him also knows that is not going to happen anytime soon! :)
Take care,
Debbie
It is only for 3 days-so it won't be like the last time-thank goodness for that!
We plan on having a relaxing weekend together as a family. The last few weeks have been busy with appointments, house painting going on, and just lots of chaos. So we plan on doing some last minute school shopping, going swimming, and church on Sunday.
Speaking of church-I have a funny story to tell on the subject. A lot of people that know Connor, and what a handful he can be, are surprised he can make it through a church service! :) It is kinda funny! We don' have a nursery, so yes-he is with us in the pew for the entire time. My only guess is it must be God watching over us and being really happy we are there, and He helps keep Connor calm enough to last through most of the service. LOL
I hope he can keep going with us while his immune system is so suppressed for the next six months...sometimes it makes me really mad that other people come around to places like church and school when they are sneezing and coughing like crazy-even if I didn't have a child I was trying to keep away from all the wicked germs out there-it annoys me. I wish Connor would leave a mask on his face for certain situations-but anyone who knows him also knows that is not going to happen anytime soon! :)
Take care,
Debbie
Wednesday, August 6, 2008
"Oh no! I'm back here AGAIN?"
Got off to a good start this morning-even had some silliness in the car on the way to Atlanta...Connor has discovered (against our liking) that chewing gum can be VERY entertaining. So many things to do with it, such as-chew it, taste it, stretch it, stick it in my hair, etc...He made this discovery while digging through Stacy's purse-and now a beast has been unleashed! :) No pack of gum escapes his watchful eyes-he must have a piece if he even sees a gum wrapper, lol, so as I was collecting trash in the car during the ride-he spotted it...me, desperate to keep him quiet-gave in. I wish I had taken pics of the silliness that came next, he was laughing and cracking up at my horror over his fun with the gum. This story does not have a happy ending-after 10 minutes of pure joy, he swallowed it of course, and was very sad.
Infusion went smoothly, thank you for the prayers for Connor today. He even was happy entering the building-until I took him to the bathroom to change his diaper and he spotted a child on a gurney coming out of sedation. He let out a blood curdling scream-and was inconsolable for a bit. He was looking at me like, "Oh no! I'm back here AGAIN?" Seeing the gurney really bothered him-I guess he knew he was next?
It was wild in the clinic today-the USA network was there filming a documentary for TV. They brought so much equipment in that the whole play area was blocked off...so we hung out in our room for most of the day.
Connor will start the Decadron this Friday. Dr. George was kind enough to have a plan in place for if Connor goes completely nuts while he is taking it ("Roid Rage") He is also starting back on his 3 X per week antibiotic to ward off any problems while his immune system is so low. I hope Connor doesn't have major problems with thrush in his mouth like last time he was on steroids for a long time...please keep the prayers coming for his health to remain well and for him to handle the steroids as best as he can. I am pretty anxious about the possibility of a virus knocking him down-especially with fall and winter approaching. All we can do is wash our hands a lot and try and keep him from getting infected from others.
On a positive note-Connor now knows how to sign about 8 words! Yippee! He is going to be scheduled for some tests to rate where he is at right now developmentally and again in 6 months. The doctor wants some kind of documentation of his progress on this new course of treatment. Not sure of the date for this yet...
Thanks for checking on us! And a great big thank you to Nini for helping out with the kiddos.
Love,
Debbie
Tuesday, August 5, 2008
"On The Road Again"
Busy days! Sorry for the lack of updates...more computer problems (Agg!) I am on the dreaded laptop right now, lol, I am so bad at this keyboard so please forgive any mistakes. :)
Round #3 is tomorrow morning in Atlanta...feels good to be almost 3/4 done with this treatment. Connor is having some difficulties with his walking. We plan to start the steroids this weekend, which will hopefully get him up on his feet again. I have been hesitent to type it all out-to make it more "real" but he is really struggling right now and prayers are needed for him to start moving in the right direction,instead of backsliding like this...two steps forward-three steps back is sort of the feeling these days.
Nini has the rest of the kiddos for the night (Thanks Mom!) I know they are in good hands and having a great time, so that eases my mind. We registered for school today and they start Monday. So exciting! Kindergarten for Samantha and 8th grade for Ryan and Stacy. Next year the twins will be in high school-I feel old! LOL
Thanks for all the loving messages and calls-it helps us so much.
God bless,
Debbie
Round #3 is tomorrow morning in Atlanta...feels good to be almost 3/4 done with this treatment. Connor is having some difficulties with his walking. We plan to start the steroids this weekend, which will hopefully get him up on his feet again. I have been hesitent to type it all out-to make it more "real" but he is really struggling right now and prayers are needed for him to start moving in the right direction,instead of backsliding like this...two steps forward-three steps back is sort of the feeling these days.
Nini has the rest of the kiddos for the night (Thanks Mom!) I know they are in good hands and having a great time, so that eases my mind. We registered for school today and they start Monday. So exciting! Kindergarten for Samantha and 8th grade for Ryan and Stacy. Next year the twins will be in high school-I feel old! LOL
Thanks for all the loving messages and calls-it helps us so much.
God bless,
Debbie
Friday, August 1, 2008
My Little Helper...
Connor is doing a good job here of helping to feed Belle. I love watching the two of them interacting together-so cute!
The house is still in painting chaos-but an end is in sight. Almost done! Only the garage is left...
All the kids are doing well-just enjoying the last bit of summer before school starts. No big plans this weekend-just want to enjoy being home.
Sad news...Heaven gained a beautiful angel today. Katie Krize amazed us all with her strength to fight and live life to the fullest. Her smile could light up a room! Please keep her devoted and loving family in your prayers.
www.caringbridge.org/visit/katiekrize
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*Our Family*
"Connor's 3rd Birthday in Pics"
"Holiday Slideshow 2008"
"A Year In Pictures-2008"
Connor George Khoury
