Guess what's in Mindy's fridge?

So I made up some of that thickener for Sam's liquids and it works great. The thing is it's kind of a gross looking substance. The product sold in stores is a smooth, clear gel. But the stuff I made is neither smooth nor clear. It's gelatinous, all right, but it's kind of milky in color and resembles something that you most definitely would not want to put into your drink, if you know what I mean. And if you don't know what I mean then good for you... or maybe how sad. I'm not sure. Anyway, having that substance in our refrigerator is a nice companion to the frozen placenta from Clara's birth that we still keep in the freezer.

At this point some of you may be thinking, "But Clara was born in California and you're in North Carolina now... so how...?" And I'll tell you how. We packed up that placenta, put it on dry ice and shipped it across the country to a woman I barely knew here in NC. We labeled the contents as "meat." Very expensive meat. The woman to whom I shipped it was someone I had met on my visit to NC and we had spoken via the internet on a parenting type board. She had kind of offered when hearing about my placental dilemma, telling me she had a freezer in the garage with ample room for placentas and various body parts. So I took her up on the offer. When we arrived in NC I contacted her to try to pick it up but had a hard time getting a hold of her. Turns out her mom was in town so she had been busy but she later confessed that she had gotten a secret thrill by grossing her mom out with the information that she had another woman's placenta stored in her freezer.

Now you might be wondering why I've held on to the placenta for so long. And I'll tell you what I told the nice young gal at the UPS Store. "Let me lead off with this information: some people save the placenta to eat it. But not me. No, I just want to save it so I can bury it in my yard under a tree that we've planted. See? Not that weird in comparison."

But I have no explanation for that bottle of semen thickener in my fridge.

Victory!

Just got a call from Sam's case manager. We got Medicaid! What this means is that we have 4 hours a day of assistance during the week by a nurse and 32 hours per month of respite care. It also means that Sam's medications, Pediasure and diapers are paid for. It will also serve as supplemental insurance for any equipment Sam may need.

Maybe the universe isn't conspiring against our move to North Carolina after all.

Dysphagia is just a fancy way of saying "Oh crap!"

After all the stress was over with the Medicaid trial and the California tenant mess subsided everyone except David came down with a nasty cold that is still lingering on. Because we wouldn't want to actually enjoy the relative peace and calm. And I say relative because we're still under the influence of 3 mostly unreasonable little people, one of whom continually keeps us on our toes. Usually just when things seem to settle down with Sam he finds new ways to remind us that we can never let our guard down.

Last week Sam had an appointment for an upper GI and a modified barium swallow study. What these tests look for is not as important as what they found. First of all, Sam did awesome! That kid continues to amaze me. One of the things he had to do was drink some nasty, chalky liquid on command from a straw while lying on his back. Even I would have a hard time doing that but Sam did great. Anyway, they immediately saw that Sam refluxes (food and stomach acid come back up into his esophagus). We knew this but have never actually seen it on xray. The unfortunate thing is that Sam is already on the highest dose of reflux meds. The other finding is that Sam aspirates liquids (some liquid goes down his airway). This puts him at risk of pneumonia. Sam has had this test before as an infant and no aspiration was found so this was new to us. Fortunately, Sam has never had pneumonia.

We go back to the doctor soon for a follow-up and will hopefully get some better ideas for these issues. Right now we've altered his reflux med schedule a bit so he gets two smaller doses instead of one big one and we're thickening all of his liquids so they go down the right hole. The most convenient and least nasty thickening agent out there is very pricey and would cost us over $100 per month. A friend of mine suggested I try making my own thickening formula (other than using baby rice cereal which makes the liquid chunky and frothy - yuck! and can contribute to Sam's constipation issues). At first I thought, "yeah right like I have time to figure that out." But I was compelled to google and immediately found a recipe for that pricey gold standard of thickening agents. The main ingredient is xanthan gum which, turns out, is sold at Whole Foods for a fraction of the cost of the thickener itself.

So today's project is thickening agent production. Yay.

An update

The appeal hearing went well today. The hearing officer was a very nice, down to earth and intelligent woman who let us know at the end of the hearing that she would overturn the decision based on the reasons given. But this doesn't mean that Sam gets the services. All this means is that the basis of their denial was found to be false but they could still potentially find other reasons to deny the services.

This particular CAP program is intended to serve children with a medical diagnosis as opposed to a behavioral or developmental diagnosis. The basis of their argument was that Sam had a primary diagnosis of "mental retardation." Yeah, I know, some people haven't evolved in their nomenclature like the rest of us. But nowhere in any of the records that I sent them did it indicate anything but a primary diagnosis of Joubert Syndrome which is a brain malformation, thus a medical diagnosis. So we had to go in there and show that, despite the fact that Sam may be cognitively impaired (though he's never been tested because you try administering an IQ test to a child who is functionally blind, ataxic, hypotonic and cannot communicate due to his, oh, I don't know... SEVERELY MALFORMED BRAIN!), his primary diagnosis is still a medical one.

Now go back up and re-read my description about the hearing officer because as much as I would like to write the same about the nurse who was responsible for the original denial... well, I just can't. I had had the ill-fortune of conversing with her over the phone when we first received the denial back in November. And she was at the hearing today. She began the meeting first by asking the hearing officer if the children's presence would cause problems. We had brought Sam thinking that they might actually want to meet the child about which they're making the decision. We also brought Clara just 'cause she's so cute. Bonus points, you know? Fortunately, the hearing officer seemed to really like kids, had no problem with their presence and told the nurse as much.

So now we wait. And if we are denied again then Disability Rights North Carolina, a non-profit organization in Raleigh, has already told us they will send an attorney with us to court to fight it. But I really don't want to have to do that.