We have past the 3 year mark now for Connor's Getting sick with OMS...so much changed in such a short time. Thank you to everyone that has followed his progress and prayed for his cure from this horrible illness. He is doing well and getting better everyday!
We have been enjoying our summer, mostly just spending time together at home before the craziness that comes with a new school year. Especially this year-we are going to have new school hours, a little earlier for the little ones and a little later for the big ones. Should be interesting getting into a new routine! Ryan and Stacy will be sophomores in high school and Samantha will be starting 2nd grade. Connor will stay in the same STEPS class as last year, hopefully getting ready for Kindergarten next year. Not sure if he will be in a class next year of only special needs kiddos or if he will be mainstreamed with the other kids. No perfect answers, but I have seen how much he has overcome and I am learning not to underestimate his ability to amaze us with what he can do.
Trying to get a jumpstart on those school supplies while there is still glue and hand sanitizer on the shelves, lol. Samantha picked out a new backpack a few days ago and was worried she might get laughed at if she got a character bag-broke my heart a 7 year old might worry about that :-( I told her I thought the littlest pet shop one she picked out was perfect for a 2nd grader!
We are down to 6 mg. on the Decadron that Connor takes and only TWO days per month instead of three. So far he is doing well with the new dose, we are keeping an extra close eye on him for any possible signs of relapse.
We have still been going to speech therapy twice a week over the summer, it has been so frustrating for all of us...mostly Connor. He is working on his letter "K" now which he pronounces as the letter "T" in order to get the kaaa sound out, the speech therapist needs to use a Popsicle stick to hold down his tongue and then he can use the back of his throat to try and make the correct sound. A lot harder than it sounds. He gets so upset and says he doesn't know how and he can't. I need to practice with him at home on this area, because it is not coming easy for him.
Atlanta next week, going to take Samantha along to play with Connor during the long infusion. Ryan and Stacy are up in Washington state for the month so we are missing them so much. Glad we got to go to the beach with them before they left-we had a good time. I will try and post pics soon, we have some funny ones of the kids together.
Before OMS Onset....
Connor was SO happy and interactive-then OMS struck at 15 months old and he changed overnight...