Monday, January 31, 2011

well...It's 230a, which means it's time to blog somewhere...

I suppose I might as well blog since my night owl has decided it is a good time to get up and play and have a snack.

I of course got coffee and half and half yesterday, but neglected to get sugar. It's going to be a long day. If it isn't freezing and snowing horribly I might have to round up the monk and go to stewarts and get sugar. Unless the sugar fairy decides to pay me a visit.

So January is coming to a close (doesn't seem possible!! I swear it was just Christmas) and I am CERTAINLY not complaining...but this brings February and lots of trips for my traveling gal. But first, I have some things to discuss.....


Cure Rayan
A very good friend of mine is asking that people get tested for a possible bone marrow transplant... a 3 year boy was just diagnosed with Acute Lymphoblastic Leukemia. A bone marrow compatibility test is free, painless and takes 30 seconds. Gender is not relevant, but SOUTH ASIAN ETHNICITY (Pakistan, India, Bangladesh, Srilanka etc) is very important, due to the under-representation of South Asians on the national donor registry.

Second... another VERY good seizure mom friend of mine (Stacy Fulkerson..mom to James who is super cutie) and who is HIGHLY creative and helped me soooo much with my epilepsy montage and by making all of our purple ribbons is making hooded towels and will be making memory blankets (send her your favorite outfits instead of boxing them up and have a beautiful blanket made!!) For information you can email her here

Next...if you are from NY specifically the capital district, Troy Pride shirts are now available thru McPride Apparel. Or if you are Irish and want to sport some sweet Irish gear and do it proudly, order now. Kids sizes available and a new line Binky Rose is coming soon. Check him out on facebook. And I can guarantee your satisfaction...the owner is Charli's Godfather. :)

Notw that I think I got all of my current promo out of the way, time for what we are up to. February is the start of our busy season. Once the snow (in theory) starts to taper off we get movin again with our out of town appointments. February 9th we are in Boston, although I'm not sure why. I actually need to call TJ today and figure out what is going on because we don't have any tests scheduled, so it is kind of a pointless trip I think. The following week we are off to Kennedy Krieger and the Feeding Disorder Program. I am VERY excited about this trip. While we may be there for a few weeks, they are recognized as one of the top institutes in the country. I am very excited to hopefully get to the bottom of why Charli doesn't want to eat and to learn ways for us to help her get the food she should be at almost 3 years old. It took me a while to figure out where I wanted to go, and what program would be the best for us, and even tho it means we may be out of town for a few weeks I think that this is the best fit for us. The goals they have are almost 100% of our goals. I have a very positive feeling about this trip. Not that I'm looking forward to being gone for a period of time...and when we come back we will be scheduling and headed out to Detroit hopefully for March or April, plus most likely another Boston trip...but Detroit I am 110% looking forward too!! I can't wait for Dr. Chugani to see her. They aren't going to believe she is the same little girl!

Another thing on my mind and stressing me is our transition out of EI into CPSE. I actually just sealed an envelope going out to Deirdre (my first service coordinator who is now the EIO) about our transition paperwork. :( I can't believe we are getting ready to transition already. Our last IFSP is Feb 7th. I remember when we came in around 6 months I thought 3 seemed like it was forever. Now I can't believe it's 6 months away.

Well, Charli has decided it might be good to sleep after all...so I guess I will too. On a good note, her GI issues seem to be resolving. Not sure whether it's the Flagyl because all of her cultures were negative, but it's working, so I'm not messing with it. So that is a huge relief. And, we will see GI when we go to KK so I can address her motility issues finally which I have been dying to do!!

Well friends, I guess I'll go try and sleep... and look forward to rationing sugar packets that I found when I get up again. :)

Nite all

No comments: