My baby should be on her way home right now, but I asked her dad to keep her one more day to allow for the antibiotics I got yesterday to kick in. Sinus infection, possible ear infection and bronchitis. Joy. I'm going to attempt to sleep it off today. We have LOTS of appointments starting this week (March Madness begins) so I need to be as close to 100% as possible.
I miss my girl sooo much. But I know she is having fun at Daddys.
So today is the end of Bearduary, but there is still time if you want to sponsor the beard growth. Click Bearduary, then Charities, and donate a few bucks to the Epilepsy Foundation of Northeast NY. It is greatly appreciated. Again, thank you to my wonderful friend Bob Buckley for this awesome opportunity to help one of my favorite causes.
Today is also Rare Disease Awareness day. Click here to learn more, and how you can become a Rare Disease Ambassador.
Sooo ...for this week we have therapies, appointment with our local opth, and next week we are finally going to Maryland to Kennedy Krieger for the evaluation to get into the feeding program. I'll be there for a few days, but the programs have a 4-6 month waiting list, so it will be a while before we actually get in. How I maintain my sanity until then will be the trick. Charli refuses to even attempt food now. She used to love cereal bars and puffs, now she wants nothing to do with it. I have anxiety when I'm trying to get her to eat like I used to trying to get her to take her topamax. I know it will come..I just need to give it time and let the pros deal with it. It's just so hard knowing what she is capable of and knowing that she just doesn't seem to want to. But hopefully we will get at least some ideas when we go for the eval. I know nothing major will happen until we get into the program, but I'm desperate for anything at this point.
And for my next trick...I have decided (as part of my Early Intervention Training Partners intercession homework) to make one of my individual leadership goals starting a local chapter of the hydrocephalus support group. I wanted to focus mainly on pedi but I figure why exclude. I have already been in touch with a physician who would be interested in being part of the medical advisory board and speaking. YAY. Now I need to track down more professionals and get some parents. I started a facebook group (Hydrocephalus Support Group Upstate NY) but I don't have any members yet :( If you build it, they will come. Eventually. Maybe if I tell them I have girl scout cookies.
In the meantime, I think I am going to stick to my plan of sleeping off the sinus infection and go nap while I can.
Remember, it's not too late to sponsor the beard! Beards rule. SEIZURES SUCK!