When did it become okay...

...to call a family with a handicapped child -- with hypotonia, CP and global developmental delays, who is medically fragile and depends on therapists with very specific qualifications -- and tell them that you, their Physical Therapist, are not coming to their house again? When did it become okay to to tell me that you'll come -- because I told you that it was unethical and unconscionable for you to call me on the day of an appt and just tell me you're never coming back to work with my little girl -- so you tell me you'll do the appt that day, then never show up and not call? I am furious. How dare someone do that? It's terrible when anyone does it, but for someone who has been working with you for months...someone who sits in your living room holding your child and says that "Amelia needs me. I won't leave her until we're skipping around the playground together." When does Amelia get a f*@#$!g break already? I know that Merna (PT) was opposed to us getting her a walker...but she has been opposed to every piece of adaptive equipment we've gotten for her -- so this is just another day at the office. The PT at UCP is totally supportive of this walker for her, feels it is appropriate for her at this stage (she was weight bearing and weight shifting when we put her into this walker at the UCP facility) and she deals with these things on an hourly basis. Merna is not based at a center like UCP and has very little knowledge of this particular walker. I showed it to her online when she came in on Monday and explained in a very conversational way that we feel, as Amelia's parents, that this is the right move for her. When she called to tell me she wouldn't be back...she told me that it was because her private clinic work is too much for her and she has to drop her homecare cases -- she absolutely denied that it had anything to do with the walker. This may be...but isn't it curious that it comes at such a pivotal time and sooooo sudden. I would respect her if she would actually fess up -- what a coward. She couldn't even face me again. And we've had therapists leave before. There's the ethical way to do it...and there's Merna's way. A professional would show to their appt with you and explain that they have other commitments and they will stay with the case until the service coordinator can find someone to replace them.

Poor little thing has been sick since Sunday. I was sick all Saturday. We all had our flu shots, but it doesn't seem to have stopped this fluey thing that has invaded my little girls' little defenseless body and won't go away. She's on Zithromax again, but it's not helping which means it must be viral. Uchhhh -- up all night and only the relief of one nurse yesterday -- who, by the way, was terrific and we're very excited to be having her with us on Wednesdays.

Since switching nursing agencies, the nurse yesterday, Rachel, has been our one and only. It's been a slow start but I like the idea of having several nurses that cover different days, rather than one nurse who is completely married to just your case. This way we have backups and flexibility.

We'll be spending x-mas eve with our friends Donna, Shawn and Miss Darmia Hope, then off to NJ for x-mas day. Hopefully we'll be meeting Spike's new girlfriend, Christina, on Wednesday and then heading down to Baltimore for a few days. We'll find ourselves back in NJ for new year's. OY, what a trek! I know after the new year we'll be closer to normal again...whatever the hell that is!!!

Happy Everything to everyone and here's to a HEALTHY and happy new year! Or as Nestor's Mom says, "Salud, dinero y amor!" (Health, money and love)