Connor's Corner

Monday, November 23, 2009

"School's Out"

It is so nice having the whole week of Thanksgiving with the kids out of school! 5 whole days, plenty of time for the kids to catch up on school projects (and sleep, lol) Today was productive, we braved the mall and left with a gorgeous dress for Stacy to wear to the holiday social the high school is having. It is sparkly and pretty and everything a 14 year old girl would dream of! Can't wait to see her and Ryan all dressed up-I'm going to be snapping pics like crazy, lol. Still need to get Ry some nicer duds, boys seem easier though to me. I can guarantee he isn't going to be as excited as Stacy was about her dress!!

Samantha is coming with us to the doctor tomorrow...I hope it is okay she is coming. They have had a "no siblings under 12 rule" since the swine flu outbreak...nevertheless, every time we go there are lots of non-patients around. It just means a lot to her to get to feel included in these trips we make so all this time, she has only come twice. Ryan and Stacy opted to stay with Aunt Laurie, it IS a very long day and they will have more fun hanging out with their cousins.

Speech Therapy is going well, we even got an extra slot now for Connor so he is going twice a week now, Woo-Hoo!! Not easy to squeeze him in since the place he goes is so good with kids-it stays booked solid. We have an awesome therapist too, so we are really blessed.

Lots of fun stuff coming up...Thanksgiving, Samantha's 7th birthday party, Fantasy in Lights, the twins social, etc...busy, but a happy kind of busy! Connor is really looking forward to Thanksgiving, lol. He knows about the turkey and pie part at least and that was enough to get him smiling.

Haven't rescheduled the scan yet-hopefully tomorrow we will find out when it will be. For now we are just thankful he is doing as well as he is! Everyday learning new things and enjoying the smallest things.

Happy Thanksgiving and prayers for all the kids hurting this time of year. And the parents that are missing their children so badly.


Monday, November 16, 2009

Do doggies have ports??

Haha, snapped this one of Connor in my bathtub-getting all cleaned up from his adventures outside this afternoon...and it was an adventure, he was being particularly naughty and had thrown my telephone over the very tall 6 ft. fence into the neighbors yard and various other pranks he was keeping himself busy with. He is hard to keep up with-and can't be left alone, it is scary the things he will try and do on his own. This morning as I came out from the bedroom just a minute after him-I found him with our little doggie ON TOP of the stove!! Thank goodness he didn't try and turn the stove on and cook her.

As bad as his behavior sounds it is actually much improved from over the summer, he is still hyper and impulsive...but is happier and laughs a lot now. His vocabulary is so limited-yet since we know him so well we can piece together what he wants to tell us now quite often. As for the "dog incident" I asked him why he put her up on the stove and he said, "Beh-Bop" translated to mean "Belle Hot" Oh my!!! So apparently he knew this was a dangerous thing to put her there. Not good at all, lol.

With his language starting to develop, we have heard for the 1st time his thoughts on different subjects...I was telling him a couple weeks ago that Belle needed to go to the vet to get her shots and a check-up. He looked at me and had a concerned look on his face and said, "Beh-Por?" (Belle Port?) as he pointed to his port where he gets his medicine. I was SHOCKED, I told him that no, Belle doesn't have a port-she just gets her shots in her shoulder...never thought I'd be answering these types of questions, you know? Connor has never known any different, his whole life that he can remember is hospital trips and medicines and tests.

Tonight I was doing a little updating on some of my links and I finally made some of the changes I have been putting off...I had to change two of the warriors to angels. It was very hard for me to do, it is like it made it really real-not that it wasn't before, but just hard to see in print, next to the names of such lively little boys. Little Ryan and Braeden, I will always remember you both!!

We have a lot going on the next few weeks...IVIG is next Wednesday in Atlanta and Connor's CT is scheduled for the 1st of December. Please keep him in your prayers for a clean scan. I am hoping to change the date of the scan-it is the same day as our Camp Sunshine outing to Fantasy in Lights. Then we will be back in Atlanta around the middle of the month for another infusion...

Also to do, preparing for the holidays! There is Samantha's 7th birthday party to plan, and Ryan and Stacy have their first formal social to go to since they began high school. Lots of pics to come of these happenings!! :-)

Sunday, November 8, 2009

Another Anniversary...

Seems I am constantly seeing things as important of our most important milestones has come since LAST November. It was only a year ago that Connor (at age 2 1/2) could not speak a single word. I waited so long to hear that precious voice say Mama for the first time. I cried when I heard him speak that day-I could see it in his eyes that he knew I was his Mama and that the word was connected to me. What a gift from God and many prayers answered!

Soon after more words came-some we could understand and some we could not. His articulation has continued to cause him great frustration...sometimes he will shake his head no again and again, as we ask him, "Did you say ___?" He now has about 50 words he tries to say-but most of them are only understandable to VERY close family members...But we are proud of him-he has gone from being completely silent to being able to communicate his needs and wants pretty well!

Speech therapy is going very well. Great therapist, and very useful info to try at home to keep him learning new words. I am in awe every time we go how they work with him and get him to make sounds he hasn't before.

He hasn't gotten the H1N1 just simply isn't available. I was conflicted on the vaccine anyway-but I am very worried about this and every other illness just waiting to attack. I try not to keep him in a bubble-he goes to school the 3 days a week after all now. But nothing makes me madder than seeing a sick child at school that does not need to be there! Please keep your kids home if they are sick-not just for kids like Connor with poor immune systems, but for all the kids. H1N1 is hitting all sorts of people, especially healthy kids. Okay-off that soundboard, lol.

Love to all and please keep all the OMS kids and NB kids in your thoughts and prayers,

Monday, November 2, 2009

Happy Halloween!

Is anybody still out there reading this? I am so sorry for the long delay in posting-no excuses except still getting used to our busy routine...Sam traveling so much has put most of the parenting on me-so it means long days (and nights sometimes for me & Connor)
I got Connor back into speech therapy, so we have added that to our weekly schedule-along with his every 3 week IVIG infusion. He is off the antibiotic infusion and on oral meds for twice a week, saves us an hour in Atlanta every time! Woo-hoo!! He is doing great too, walking well & trying to talk more and more. Wonderful to hear, he is improving so much from school, which he loves.
Halloween was fun, we had our big party at my sisters house-complete with a scavenger hunt for the older kids, and musical pumkins and mummy wrapping with toilet tissue, lol! Connor loved his cowboy costume and we even talked Daddy into dressing up as a doctor for the festivities.
Connor is still doing lots of cooking with me, lots of cakes (which he calls "C")He doesn't eat much of the treats, but really enjoys using the mixer and decorating. So sweet!
I was checking my email on Friday and I had a note from our social worker in Atlanta...she and Connor's doctor have filled out paperwork for Make-A-Wish!!! It is a long process, especially with the economy so bad off, but it looks like it will take about 6-9 months for him to get a wish.

I can't believe how excited I am about sister had referred Connor a year ago or so and it depressed me All I could think was Connor can't communicate enough to tell us anything about his wants or where HE would like to go. And with that organization (Kids Wish Foundation) the child HAS to be able to tell the wish...not possible for Connor...even now he still can't express or verbalize enough to do that. But he doesn't have to for Make-A-Wish.

Connor talks ALL the time about going back to Universal Studios where they have a Curious George water park (we went for one day in July) Of course-all he says is "Shoe Wa-Wa" He pronounces George like shoe-but WE know what he means, lol.

Tomorrow is our Atlanta day...Connor is looking forward to doing his arts and crafts there that we save for his time he is hooked up to his tubies.

Thanks for all the prayers!

*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