Today was pretty much a normal day.

1. Today I gave Pearlsky 11 different medicines in 23 doses, during seven different “med times.” Knowing that this number has varied since birth, I calculate that I have given her approximately 84,500 does of medicine.
2. I changed her diaper five times today. Over her lifetime, accounting for time in school and with nannies, I have changed over 18,000 diapers.
3. She had a bath this evening. Probably close to exactly her 2700^th (cool!) and I gave her every single one of them.
4. Tonight she heard me say “I adore you, Pearlsky, sleep goodly” for the 6,304^th time.
5. Pearlsky has bitten me three times hard enough to break the skin. I believe at least two times were unintentional.
6. In the last 60 days Pearlsky has been visited by her mother twice for a total of about 40 minutes. Understandable since her mother does live a whole 5 miles away.
7. Pearlsky’s average seizure is about two minutes because I stop it. If I do not, they have been known to last up to 20 minutes. I estimate she has had up to 4,000 seizures in her lifetime.
8. I have raised my voice to Pearlsky once, early on. I still hate myself for that. Even if it is defensible. It simply cannot be defensible.
9. A box of Girl Scouts’ Thin Mints contains 32 cookies. I know that because I ate every one of them while writing this post.

I am working on a new project and I need your help. Actually, I won’t do it without you. I find that there is a lot of information concerning “severe special needs” I need that is scattered or difficult to find and no way to pass it on when found (other than a blog, but far be it for me to blog, don’t believe in them). So, the solution I am working on? Well, it is part blog and part “wiki.” The “wiki” part (yes, like Wikipedia) means that it is an effort from many people joining in with their knowledge and in this case, advice. It is vital, though, that facts are differentiated from advice and this must be taken seriously. So if you want to help, and realize that I am now just two days into this project (or just 10 diapers into it, if you will), you can take a peek at the very beginnings, mostly place holding pages, I need more category and article ideas and then we need to start filling them in. So, do not tell anyone yet, just between you and me, here is the very very start, and here is a sample page (content mostly stolen, will be replaced). Do I continue? Will you help?

The stress level is about an 11.

• I was in touch with the people at Every Move Counts, they have a method of trying to get communication out of kids like Pearlsky. Some emails back and forth, but then no response to the last two emails where all I ask is if they know of anyone they have trained in my geographic area. Strange for them to stop talking at that point. I didn’t even get to tell them they really, really, really, need to change their web site look (especially starting with the font). Does anyone out there have any experience with them or their method? PLEASE contact me if you do.
• Five days without a washing machine, I do a load for her every day and on the weekend I do mine as well. I wish her diapers were a larger size … anyway, I fixed it last night. After both the local professional repairman and the Maytag repairman-only super-duper-you-need-a-paid-subscription-to-call hot line had no clue, I figured it out. And I fixed it, so there. Now, if I could only come up with a fix for someone around here …
• Woke up yesterday morning in a puddle. Ever wake up in a cold puddle? Not fun. Yes, I patched the waterbed before going to sleep last night.
• I am leaving for five days next week, this nanny has only stayed one night with Pearlsky in the past, and of course all the rituals are different from the usual daytime ones. Different meds, she acts differently at night, different seizures, the whole morning routine, AFO’s, etc. Yes, I will have my cell phone, pager, email (BOTH smartphone and netbook) (what a geek), I can watch on the web enabled nanny cam, but I am still really uptight. Today we did a dry run using the lift in her bedroom (different than the one in the family room) and rehearsed how to compound one of her meds that needs to be made daily. And on. And on. I am fairly nervous and stressed, but putting on a good front. Before you ask, yes, Pearlsky’s mom will be in town, lives only three miles away, but has not visited in about six weeks, has no clue about any of the routines, and of course Pearlsky cannot stay with her since her husband has a cat and Pearlsky is extremely allergic. (Yeah, no need to comment …)
• I am learning more than I ever wanted to know about IEPs. Thanks to everyone for your comments in the last post (and I did note it took Barbara egging you on …) and in private emails. Please, keep commenting there if you have more to add or have not added yet. Lots of good food for thought. That post will happen. And in regards to that, here is a poll that will be interesting to all (especially me) … please “vote” if, in fact, you have a child on an IEP who is on the more severely disabled part of the spectrum (yes, I know, back to those words and stuff, hey, I’m stressed, cut me some slack!).

Sorry for the stress and the over use of the parenthesis keys …