Friday, February 15, 2008


We celebrated K's new lack of hardware by chewing gum, what else? It was neat to see her so down to her toes happy with such a little thing. But it's not such a little thing when you've been months without your gum and you've been so very patient.

While we were at the therapy place yesterday, I spotted a mama sitting with little bitty conjoined twins. I went and found her after we were done to tell her that her girls are beautiful. They are, too. Such sweet little round faces, one with an NG tube. I asked her if she'd just started coming. She said no, that her older daughter has had therapies there for a while, but the babies had just started. I told her that I was asking because I'm usually knee deep with my little guy during that time and thought that I'd somehow missed seeing her before, since I kind of develop tunnel vision when Q's working. She smiled, looking so tired as she was waiting for her daughter (in her walker) to catch up to the stroller.

It was a twin stroller, no doubt used differently than the designer had envisioned. Two sweet babies, snuggled side by side, tight against each other, the remaining seat piled with a foam wedge and miscellaneous pieces to make a good, comfy baby bolstering kind of seat.

As I loaded my first and third born into the van to head home and attend to the various needs of the group, I was struck by the effort it must require to keep three high and specific needs littles happy, together, fed, and medical needs met, never mind getting out of the house to other appointments. What a very good mom. Honestly. The NG tube is what just blows my mind.

I had another conversation yesterday about a G tube for Q. He's having yet another stretch of time in which he doesn't want to eat. I don't know if the gagging at textures, flavors, or whatever, is due to the inferior quality of the food here (snort) or if it might be because he needs to have less inflammation in his head. The process of getting the prescription from the pediatrician, the letter of denial for the particular supplement from WIC, then getting the three cases per month of this stuff delivered and administered, well, the process is rolling along. It'll take a few more weeks before everything lines all the way up.

I talked with a pharmacy tech today about how to get Medicaid/SSI to give a blanket approval to ODT (Orally Disintegrating Tablets) as the preferred method of dosing for Q. She says it's not possible. Argh. See, the problem arises when we have a situation like the one that came up last week. In ER, Q was given an ODT dose of a steroid. The doc wrote "substitution permitted" on the actual prescription but when I asked about ODT was told that the drug prescribed was not available in that form. I've heard this before, but didn't sit with that then either and that's how he got the Clonazepam in ODT. The biggest problem with this latest scrip is that it was only for three days, three doses. By the time I could have argued with the people in charge, the need would have been gone. Of course this med had a horrible taste. Bad tasting meds make Q salivate and gag. People who have trouble swallowing or managing saliva are more likely to aspirate, which is one event that can instigate an episode of Reactive Airway Disease.

And Q's jumpy again. Yesterday and today when lying on his back he's been exhibiting that same sort of frantic tensing that led to the seizure diagnosis. I'm wondering if we're needing to up that Trileptal dose. It's been several months since he had any change. I would say that he's outgrown the dose, but I'm not sure that's the case, since he's down again to about 25.5 lbs.


Zoo Keeper said...

Don't you just want to smack people when it comes to scripts, sometimes? It is nowhere near as urgent as thing as Q's meds, but my oldest has been waiting for his new glasses prescriptions (which do have to be specially made) for SIX WEEKS. The company has made them incorrectly twice. I mean I recognize that it takes skill, but if we can send a man to the moon, we should surely be able to construct a pair of special glasses!

I'll be frustrated with you.

And you can be frustrated with me. That box of stuff is sitting on my bedroom floor. It is coming though, I promise.

barnyardmama said...

I just wanted to come over here because of a comment you left on Better Than Normal. You talked about those autistic shirts. I had the EXACT same idea. Mine had some major brain bleeding and he's cute as can be and sweet too. Right after he was born I'd see people acting like morons and I'd think "my kid has brain damage--what's your excuse." I'm sorry--I just wanted to share that tidbit.

barnyardmama said...

It's recently occured to me that maybe moron is prejorative--sorry if bothered you. I'm new at this.