I LOVE the pic above! Just thought I'd share a pic of two of my guys for ya'll...It is rare to get Connor sitting still for a pic, so this was a rare photo op.

Lots of news in our house, and lack of news as well...still no idea what was going on with Samantha-her urine and blood came back normal thank goodness-but we have been playing heck trying to get her scan scheduled! It seems it is easier to just go to an ER than wait for the doctors to set it up...we had it all set for here in Columbus when I got a call saying that we would need to go to Atlanta to do it and that they would call me with the appointment date-STILL nothing, even though I have called to check on things. Aagg! Good news is she is doing much better-I'll keep you all posted on what happens.

As for the news we do have, Connor FINALLY got approved for the Katie Beckett Waiver This Is HUGE for us, not only financially since it will take a lot of the burden of Connor's medical bills off our shoulders, but what it means for Connor himself is the really great part! Here are some of the ways it will help him as a secondary insurance:

*Speech therapy will be covered (we have battled our insurance company for 1 1/2 years to cover ST and they did approve 20 visits this summer...guess what? We just got a bill for those visits, they seem to have changed their minds...so here it adds up (Evaluation $ 165.00, Co-pays for bi-weekly visits $40.00 a week, session fees for bi-weekly visits $160.00 a week) See how quickly it all adds up?

*Will pay all co-pays on Connor's Medications

*He now qualifies to get services from Pediatria This is the nursing business that would have enabled us to get Connor's infusions done locally, instead of traveling to Atlanta for treatment...our insurance doesn't pay for this service and we were turned down. They also provide respite services and day care for medically fragile children.

Can you tell we are excited?

So, we have some decisions to make about the next year...how this effects school for Connor and if he will go to private preschool or Pediatria on his days he isn't at the special needs STEPS program. Right now I have some research to do, and that will help me figure out the best place for him.

I talked with Connor's doc a long time last Friday...Sam took Connor to the playroom at the clinic so I could discuss things.

We made some decisions-about ongoing treatment plans, and I got the name of a child psychiatrist we need to see to follow some of the meds Connor is taking, didn't end up helping since that doctor won't take our insurance (Agg again, lol!) On to more researching, right?

Looks like Connor will be doing the steroids for probably another two years...I sorta expected it-but I just can't quite stomach the thought yet, you know? I asked if he should have a bone density scan soon since steroids can result in bone loss-but Dr. George was honest and said we didn't really need to because no matter the outcome of a test like that-the benefits of taking the steroids outweigh the risk to his bones...

He talked very seriously about his immune-suppression putting him at risk, since he can't afford to catch any little bug-we will probably bump up his IVIG to every 3 weeks instead of 4 to help keep him healthy, especially with school starting soon and him being exposed to more germs than he ever has before. It will probably help with his walking too-since that last week before he gets IVIG he falls a lot and crawls on the floor quite a bit.

Then the hard stuff came-the future...he said he is very happy with his progress he is making right now but that we need to prepare ourselves that come age 5 or 6, he might just stop/slow down progressing. Most of the stuff we learn is happening RIGHT NOW, the critical age for development and once you hit those ages it is harder to keep advancing. He said he hopes he is wrong...I hope he is wrong too-but I don't think Connor is going to get out of this unscathed...he is sooo far behind developmentally...even the words he can say-nobody can understand-I am the official translator these days.

Just keep praying-he IS doing so much better and every day is learning new things and words. Right now we just finished steroid week and it was pretty rough on him and on Samantha, poor girl needs a break badly from her little brother after the steroids...Tomorrow Sam is off and we are going to see the new movie "Ice Age" while Sam keeps Connor-so that will be good for her (and Mommy)

Ryan and Stacy are in Washington right now and we miss them terribly! But I know they are having a good time and enjoying themselves before it is on to high school. WOW, I still can't believe they are going to be in high school, lol.

Please keep many of our little friends in your prayers...Patrick Chance, Ryan Morgan and his mom Missy, Will Lacey, Chloe Shiver, Liam Witt just to name a few...and please keep Nathan's mom Susan in mind as well, as it has been almost two years since he became an angel.

Deb