Connor's Corner

Monday, June 22, 2009

Fun in the Sun!

Can you guess what we did this weekend? Yep, went swimming! Saturday was SO incredibly hot-there wasn't much else anyone in town felt like doing. Connor had a great time (as you can tell from the pics, lol) He loves anything and everything that has to do with water, so he rode in his float, played in the baby pool, and even helped water the flowers at my mothers house. He has come a long way with his fear of water and even let me hold him in the pool for the first time in TWO years :-) We even brought Belle along for the fun, and she kept sneaking drinks of water out of the baby pool, lol...

Should hear back from the pediatrician's office tomorrow about when the scan is scheduled for Samantha. It will be of her chest, abdomen, pelvis, and brain and we will be able to do it at The Medical Center, since she won't require sedation. She knows nothing about it at the moment, I plan on just telling her we are getting a picture like an X-Ray, to make sure she is doing okay from the inside out. Also, we should hear back the results of the blood and urine tests that were done last Wednesday (praying for great numbers here)I will feel much better about things if these look good. As for Samantha-she is doing well, her eyes have settled down and the double vision is happening less often.

Connor is due to start another round of his steroids at the end of the week, so we are enjoying his mood right now before the roid-rage kicks in...tomorrow after speech we are going to play miniature golf (Ryan and Stacy's favorite!)


Wednesday, June 17, 2009

Pics from our trip to The Coca-Cola Museum in Atlanta

Something I'm not good at...Waiting

Still no clue on what is going on with Samantha...went to the opthamologist Monday and he did a really thorough eye exam with SO many different tests-not just reading letters-but tests that looked into the structure of her eyes and he said everything is perfect. 20/20 vision, eyes perfectly aligned (inside and out) no infections, blocked tear ducts, etc...he sees no reason for her to be having the double vision and the rapid eye jerking and blinking.

He wrote orders for her to get her blood and urine tested. We went today and did that...In about 90% of cases of neuroblastoma, elevated levels of catecholamines or its metabolites are found in the urine or blood. Of course, Connor had this test and he was in the 10% that didn't show elevated levels, but he thought it was worth doing since her eyes are involved.

The nurse practitioner at the ped's office called today to check on her and I have a feeling they are going to order an MRI or CT scan just to rule things out. Right now we are feeling pretty positive about things, that it is just a weird occurrence with no explanation...

The eye doctor did say if it was his child he would get her scanned...brain and body, just in case...we are going to ask Connor's doctor his opinion and go with that most likely.

It has been over a week now and she is still having double vision, but not as much jerking going on. We are simply praying!

Wednesday, June 10, 2009

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!


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 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!

Tuesday, June 9, 2009

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 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.


*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