Connor's Corner

Thursday, February 19, 2009

Playing Catch-up

Home sweet home! Can you tell I am glad the Atlanta trip is over with? For a bit anyway...long day, but Connor stayed sweet through most of it.

Lots to discuss with the doctor-Connor had his exam, started the infusions, we met with our social worker about our paperwork for the Katie Beckett waiver, and got the last bit of paperwork that the school system wants. (that Connor doesn't can't finish his vaccinations for medical reasons)

Whew! Feels good to be marking things off my list.

Connor was zonked on Benadryl for quite a while. Poor guy was tired from being woken up so early.

Not much news from the dr. He might move the IVIG to every 3 weeks instead of every 4 depending on this next month and how his walking goes...he also thinks we might be repeating the Rituximab chemotherapy in May maybe-not sure when exactly yet. He ordered some extra blood work that we are waiting to get the results back from still...

Got things set up for next months CT scan-it has been SIX months since the last one, hard to believe. Please keep Connor in your prayers for a clear scan with no new tumors. It is always so difficult for Connor on these scan days...so maybe some extra prayers for him to do well with the prep beforehand and the sedation as well. He HATES drinking the contrast-we have to force-feed it to him slowly for two hours with him screaming and fighting with all his might. :( These poor kids and what they endure-it is so hard to watch.

We are going to have quite a string of trips coming up (about every two weeks) to Atlanta-but even though the driving is a pain-I am thankful that we at least have the doctors close by. Better than flying every month, huh?

Next week I have to take Connor for his STEPS evaluation. This determines the number of days he will attend school and also the amount of services he will receive while there. We are keeping our fingers crossed that he will qualify for at least 3 days per week-preferably at Samantha's school. (pray) It will take a while to hear back though-probably 60 days or so.

Deb

1 comment:

Deqlan said...

Hello Guys just saying hello and hoping the steps evaluation goes very well! Prayers continue for you strong Connor and for you Debbie! God Bless Love Mark Samm Deqlan Logan

*Our Family*

Photobucket

"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