DorrieDorrie

Miss Booger Face2

Miss D has had a cold since last Friday night. Knock on wood, it’s thus far been confined to her head, and has not interfered with her breathing or oxygen needs. We have though gone through nearly 3 whole boxes of kleenex, and her poor little nose is alternately red or disgusting.

Aside from very poor sleeping (down for a few hours, up for a few, tired looks the whole day) and crabbiness last weekend, she seems to be handling it all right in other ways too. We have had a few minor puking incidents precipitated by gagging on post-nasal drip, but much fewer than you’d really expect.

In unrelated developments, she’s gotten a bit more demanding recently trying to get someone’s attention. Especially if she’s on her vent, she’s able to make quite a bit of noise until someone who may be occupied elsewhere looks over to see what it is she wants.

Nursing woes continue (the big surprise will be the day they haven’t). Our night nurse is retiring in July and they have yet to find any hint of a replacement. Our other nurse has apparently injured herself in some way and will be out indefinitely. We’ve had a new (day) nurse testing the waters the past couple of weeks, but he (yes, an actual guy!) can’t really do the schedule we want, so it’s a stop gap at best.

All of the people from the school have now paraded through. They’re supposed to have their reports ready for next Friday, when we have a meeting to discuss them. Then they will go off and spend 2 weeks writing the IEP so we can have another meeting to actually go through that. Hopefully that’ll be the end of the process.

We’re also in the process of investigating setting up a special needs trust for Dorrie. In order to keep her Katie Beckett medicaid waiver, she can’t have any assets in her own name. But if we set this up then money can go to the trust instead. (Or directly to us, which is easier, but doesn’t work for everyone.)

Posted by mom, under moving forward... or not, nurse or no nurse, our little witch, schoolhouse rock