Shameless brag!

Normally I would not be prone to posting self-pics here, but I decided to since I have suffered thru almost 2 1/2 YEARS in braces, lol! Here are my teeth as of a couple months ago-getting there, finally (whew!) I'll try and get a newer shot soon, before the braces come off for good-but I since I have been getting some requests for new "brace face" pics-here you go! Enjoy :-) I am really looking forward to the BIG day when I no longer have to worry about them. It will be funny for Connor-he has never known me without braces-to him it is perfectly normal to have a mouth full of metal. When I am all done-I'll do before and afters-what a difference!
Deb

Look-A-Likes?

So what do you all think? Here are a couple pics of Samantha when she was 3 1/2 years old (right after Connor was born)...I can look at her face and see so much of Connor! Granted-he is on mega-doses of steroids and it has changed his looks by filling out his face a lot and giving him more facial hair than most 3 yr. olds normally have, lol, but they look quite similar to me still.
Rough day today with Connor-more of the raging even though he should be calming down from them...poor Ryan and Belle are bearing the brunt of it unfortunately-lots of anger taken out on them for some reason? With Sam on the road so much now, it is really hard to keep up with the mood swings and sleep issues all by myself...it is giving me sleep issues just from dealing with his, lol.
This is the 2 year mark now for us from when we first noticed Connor's symptoms and our lives changed forever. When will I stop counting all these "anniversaries"? June will always be remembered for how he was deteriorating before our eyes, July and August for the unknown and hospital trips, tests, and fear bigger than we could imagine...and September as the soul-splitting diagnosis was given to us-followed by more test results in October, good news that his cancer was able to be surgically removed, but being told it is at a cost to his brain and entire future with the OMS diagnosis. Certainly not how we pictured the first few years with our baby boy...still-he has been more JOY than we could ever dream possible, when he smiles-we call it his "million dollar smile" :-) And his words that are just now forming are a gift to our ears and more precious than we knew possible.
Samantha has been having some eye twitching in her right eye the past few days-which has me completely freaking out on the inside, trying to stay calm on the outside...probably nothing, but any sort of eye movements to a parent of an OMS child are reason to let panic seep in. In any case, I am going to take her to the eye doctor/pediatrician if it continues...
Good-Night and please remember all our NB friends and OMS buddies in your prayers!
Deb

Late Night Ramblings...

If you happen to notice the time of this posting-it is late at night. The ONLY time I seem to have lately to jump on the computer and try and catch up on blogs, Facebook, mail, etc...tonight I blame the late hour on too much Coke Zero and enjoying the quiet in the house since all SIX kids are sleeping, lol (yes, six!) My niece and nephew are spending the night tonight and it has been so much fun having them over. Today (June 9th) is my nephew Kevin's 14th birthday! Happy Birthday Kev-you are such a good kid (can I still call you that, lol?)

Connor is doing really good. He is loving his special toys-mostly Play-doh and playing with bubbles. He plays in the sink when I have soapy water, outside with his bubble containers, and especially bubble baths! He says "bubbles" so many times a day, I lose track...Still so good to hear him babbling and making real words.

Kevin had his birthday pool party this past Saturday and all the kids had a wonderful time-Connor gave us some cause for worry when he refused to wear his bathing suit for the festivities...I guess when you think about it-you take off your clothes for a bath, why not for the swimming pool? :-) Luckily it was mostly family and we did finally get his Thomas trunks back on him...And I have some funny pics to embarrass him with when he is older, lol. He was fascinated with a bubble machine Aunt Laurie had going during the party-it was a purple octopus that is battery operated and automatically blows bubbles-it was a hoot watching Connor chasing the bubbles!

Samantha started at her new ballet school and is really enjoying all the one-on-one attention she gets (easy, since there is only 3 girls in the class including her) Ryan and Stacy are keeping busy with their cousins, reading, and going to the movies a lot.

Connor began his new speech therapy sessions with a new teacher who is very sweet and he seems to like a lot. So far he has been twice and both times did very well-considering she is still new to him. He is going twice a week this summer and as always I tell myself how good it is for him to be meeting new people and going new places in preparation for August when he will be experiencing LOTS of changes in his routine when he goes to school for the first time.

No more hospital until the end of June :) when he goes for his regular IVIG appointment...this months steroids were rough on him again, so any break from more owies is welcome. He had lots of rage this time around and the joint pain along with it...his sleep has really been going downhill (common with OMS) and this certainly didn't help. We are waiting to hear back from his doctor right now about what to do about the issues. We had our appointment in Atlanta with his neurologist-but he gave us no answers and we left being told to consult a psychiatrist on medicine issues-NOT the help we were seeking, or what our doctor sent us there for in the first place...I am trying to see the positive in it though and if he didn't feel comfortable having Connor as a patient, then I am glad he came out and told us to find a new doctor.

We went to the Coca Cola Museum in Atlanta after the appointment. Ryan and Samantha enjoyed it a lot (we were minus Stacy, she opted out this trip) Sam and I didn't enjoy it much due to Connor's reaction to the museum (he cried the entire time we were there) We felt bad later, we timed it just terrible-right after a dr. appt, right after steroids, and when he was most likely hurting...at least two of the kids had fun...these days fun seems to be hit or miss depending on how Connor is doing.

Startling news this week about Patrick Chance, he has relapsed with NB, after a year in remission...His parents are ready to fight all over again and are making plans to fight back hard! Please pray for Patrick and his family.

Also, Super Ryan and his mom Missy need your prayers as well. Both of them are having so much pain, and are in and out of the hospital constantly. May God ease their pain and give the entire family peace and hope to get through these hard days.

Love,
Deb

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!
Deb

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 Antonio...now 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:

http://www.youtube.com/watch?v=UeT1vx26_2g

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!
Deb

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!
Deb

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.

Deb