Connor's Corner

Thursday, May 28, 2009

Home Sweet Home!

Our dining room with its new floors...

Connor looking pretty bored during a recent shopping trip, lol...

Handsome fellow!

Bubbles! One of Connor's new words-he loves playing in the sink lately :)

Connor's favorite thing to do these days, play with Play-dough-which has been great for his fine motor skills.

A couple months ago I decided I wanted to change most of our carpets to laminate flooring-well, we finally made the big switch this past weekend and What a difference it has made! The whole house looks cleaner and feels more open and airy. We are loving it...didn't love the mess though-luckily that only took a couple days to box things up and rearrange things after the crew was done working. Sure made me realize I don't want to have to go through the ordeal of moving anytime soon-it was a BIG job just doing this with four kids in the house, lol.

Yesterday we were supposed to have a nice "easy" day at the clinic...didn't need to be there until 1pm (instead of getting up at 5:30am for an 8:30am appt like usual)

I thought it was strange we got a 1pm appt., since it takes 5 hours for Connor to get done ??? which would put us at 6pm to leave, if they jab him as soon as he walks in the doors (not likely, lol)

We get there and they didn't even have him on schedule due to a major mix-up...So the meds hadn't been ordered or mixed (which takes forever because you can't stir the IVIG, it has to dissolve slowly)

Stacy and Samantha had come along (Stacy for the first time ever to Atlanta) and were SO good, but bored out of their minds. At 4pm Stacy asked me how much longer and when I told her "Hours" she looked shell-shocked. Poor girl-I don't know if she will want to come back again

All I can say is thank goodness I brought the play-dough! It kept Connor busy most of the time...

I need to be sure I keep him on a very exact schedule for his IVIG...He was due to have it last week, but with all the end of the year celebrations at the kids schools-we delayed it by a week. He has been crawling SO much and it just breaks my heart when he does this-to see this big boy on the ground on his hands and knees...anyway, he usually is feeling better within a couple days and walking well too.

I am sick right now, and Connor has a yucky nose (I'm hoping he doesn't get worse) I think our beach trip this weekend might be on hold :( unless a miracle recovery happens for me in the next 24 hours, lol...I'm not worried though-we have plenty of time, I was just looking forward to seeing Connor and Sami enjoy the sand and sun...and Ryan and Stacy LOVE going to the beach, so I know they will be bummed if we delay it a bit.

Oh-some good news! I hope to get my braces off before the end of summer. I need to dig out the OLD pics of my teeth for comparison purposes, lol. WOW what a difference almost 2 1/2 years in braces makes! By the way-YES, I am looking forward to some of the forbidden foods I have missed out on...corn on the cob especially. It would be cool if they were off by the 4th of July.

Love to all!

Wednesday, May 20, 2009

So much to share, where do I start?

Samantha & me at Relay for Life 2009

Connor enjoying the Gatorade cooler at Relay for Life

Stacy, me, Sam, Samantha & Connor on a VERY windy night at Relay!

Samantha about to get her hair styled for dance pictures, sporting her hot pink cast

At least the cast matches one of her costumes, right? LOL

I guess the only explanation for my lack of posts is feeling completely overwhelmed (is that a good excuse? lol) In the past month, my schedule went into overload with the addition of DAILY visits from various teachers/therapists and varying appointments. It is coming to an end now (the home-bound schooling part anyway) now that school is almost over...hopefully I will be able to get more computer time in now :) And come August, Connor will be a school-boy! I can't wait to see how much it helps him develop.

Sam has traveled the country the past month-Tampa, St. Louis a couple times, San he is home for a bit thank goodness! He missed all the fun of the various teachers, therapists-not to mention ANOTHER broken arm for poor Samantha! YES I DID JUST SAY THAT...While we were in Atlanta doing Connor's 3rd chemo treatment, she fell down Aunt Laurie's stairs and fractured her elbow :( She was put in a long-arm cast, but luckily was able to get it taken off in time for her big dance recital. This time she opted for hot pink and even had her professional dance pics taken with it (insert lots of jokes here about covering it with sequins, etc)

Connor is thriving right now and is so alert-it is such a blessing to witness his curiosity of the world around him! Constantly pointing to ask "What is this?" So I tell him what various things are hundreds of times a day-thrilled he is doing so well and that his brain is functioning well enough for him to be this curious...Most 3 year olds ask questions constantly-this is just his way of doing it with the pointing, so it is good to see (and hear) him acting like any other child his age...just quieter still-but he is trying to form some words. We contribute this most recent "burst" of learning to the treatments he has endured the past couple months-and also prayers being answered, so keep praying! It is working!!!

Let's see, his new words are:
La-La (for Aunt Laurie) he is actually calling her by name now!
Help (he pronounces it bup, but he uses it appropriately)
Flower (kinda garbled, but we know what he means)
Moon (he is good at this one, although the Nike symbol on shoes is NOT a moon Connor, lol)
Wa-Wa (for water of course)
Thank You (he signs this and it is not understandable at all, but he is trying)
Boo-Boo (for owies AND Samantha since that is her nickname...means baby in Arabic and it stuck)
Moo (for a cow sound)
Tea (his favorite drink!)

This is all since he began the Rituximab 5 weeks ago-Amazing!

Relay For Life was last Friday and our team raised over $7,000!!! My favorite part was seeing the kids have such a good time...running around, cotton candy, playing in our tent, etc...Can't wait until next year to do it again! Thanks to everyone who donated and came out on Blanchard night at the restaurant-ya'll are awesome!

I also wanted to post this video that was made of Connor and his OMS buddy Makhi by a lady on u-tube. Makhi's mom just happened to stumble across it...I think it was very nice of her to take the time to do this video, I'm for anything that helps spread awareness. Here is the link if you want to check it out-Connor appears about halfway thru the video:

If you get a chance-check out my friend Samm's blog (Deqlan's mom) Her fundraising project "Scrub A Dub Dub 2009" (to benefit kids battling cancer by providing them with personal hygiene items, toiletries, pajamas, etc. A lot of times these kids arrive at the hospital with only the clothes on their backs-so the need is great) It was a HUGE success thanks to her hard work and dedication. Way to go Samm! She has posted some awesome pics of all the beautiful hampers filled to the brim AND the beautiful balloons her sister Meggie created to honor warriors , survivors and angels (including Connor) Thank you Samm for inspiring so many to give back as you have!

Tomorrow is Samantha's Kindergarten graduation and Friday is Ryan and Stacy's awards program at middle school. I can't wait for summer to get here, it will be so good for everything to slow down and for us to get to enjoy things together.

Love to all!

Wednesday, May 13, 2009

Birthday Slideshow!!!

I couldn't resist putting together a little photoshow of Connor's birthday weekend. He had a great time, at the hospital, at home, and at the park-all the places he loves (well, except the hospital, lol) We are so blessed and I just wanted to share our fun with all of you who pray for Connor every day. Love to all of you!

Thursday, May 7, 2009

Sorry for being MIA...

Train fun at Connor's party-or maybe a fight over a choo-choo?

Connor had on a Thomas the Train bathing suit-then decided to take it off, lol.

The Thomas Cake

Need a bigger pool!

Fun outside at the water table.

Just busy-like all of us, lol. Sam is the traveling man these days, different city every week with his promotion. So I am playing super-mom to all the kiddos, who I swear are gonna do me in, lol.

Samantha broke her arm again. She fell down the stairs at Laurie's house last Friday while we were in Atlanta getting Connor's chemotherapy (insert guilt feelings her, lol) Really bad timing-dance pics were today and she is so worried about having a cast in them...the doctor did say it could come off for the recital thank goodness, might go back on after-but at least her big night will be cast-free.

Connor has been raging terribly on the steroids, more from pain than the usual craziness he gets-so he is on an every 4 hour pain med cycle right now. Poor guy is miserable...not much else to say except it breaks my heart to see him like this. He also has begun his homebound schooling-which has been rocky getting started. It is only because his immune system is so low that he is getting these services at home, and since not many kids do this at home-it is new to everyone, us and the teachers. It is only 30 minutes twice a week with the teacher-so he isn't getting a whole lot of time with her-but it is helping him get used to new people, which is a good thing for him.

Stacy and Ryan are excited about summer coming (me too!) School lets out on May 22nd, so not much longer. I can't wait to have more time to spend doing fun things, rather than just rushing around like we are lately.

I'm going to keep this short so I can post soem pics...Love to ALL of you and thank you for all the sweet calls to check on Connor. I appreciate it, especially with Sam traveling, it helps to not feel so alone.


*Our Family*


"Connor's 3rd Birthday in Pics"

Before OMS Onset....

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

"Holiday Slideshow 2008"

"A Year In Pictures-2008"

Slideshow Stacy Made!

Connor's 2nd Birthday April 2008

Halloween 2006

Connor George Khoury

Connor George Khoury