I keep noticing that we haven’t updated here in a while, and thinking about what to write, but then I’ll remember I didn’t upload any pictures yet and the minimal amount of effort that would take just causes me to put it off again.
But now it has been nearly a month!
Still no pictures (they exist, but not online yet, unless you happen to be Facebook friends with my mom). I can’t let that stop me forever, though.
So the first half of the month was pretty unremarkable. I can’t really think of anything to report from it with respect to Miss D.
Summer school ended a couple of weeks ago, and the regular term will begin next week. In the meantime it has been very quiet here with no therapy at all. It was a nice break, but we’ve decided to see if we can manage to get some private PT on top of the school provided stuff. It all seems to hinge on whether or not our PT from EI is on medicaid’s approved providers list. We await the answer to this million dollar question whenever medicaid decides to get back to us as they’ve promised to do. (Or we give up on this and call them again.) Why medicaid? Well, because our super awesome primary insurance does not cover PT at all except for “acute” cases, which D would not be.
Meanwhile, we are still in the process of attempting to get a wheelchair ramp outside of the townhouse. The condo association approved this back in June and the intervening time has been spent trying to get the service coordinator from our Area Agency to actually return our calls. We have finally hit upon the solution that he seems to answer his phone if you call him right when he arrives at work, so some slight forward progress has been made in the past couple of weeks. I estimate that the ramp should be ready just in time for the first snowstorm.
This summer Dorrie has made some significant progress at weaning. She is now completely off of supplemental oxygen for much of the day. I’d like to say that her continued progress towards being a ‘wireless’ baby has made us more mobile and free, and to a certain small extent it has, but it has also made something quite clear to me which I was obviously blocking out. All along I’ve been telling myself that our lack of activity and ‘getting out’ has been related to the difficulty of transporting Dorrie and all of her equipment. As the equipment becomes less of an issue, I now know this is not true at all.
In fact, we have ended up like this because of her vomiting issues. Practically our whole day revolves around her feedings and the adaptations we’ve made to prevent her from throwing up. We are very successful at this! Since we eliminated the goat kefir from her diet, we’re back to our blissful 1-2 pukes a week schedule. But this comes at a cost: moving her around with a full stomach is completely a no go. She can play on the floor, but it’s risky to pick her up before an hour has passed, and forget about a car seat for at least two. Since she has 4 meals a day spaced at least 2.5h apart and is awake (or napping — g-tube means she can eat when she naps) generally for 11-14 hours, you can see how this severely limits the time available to do anything!
I’m honestly not sure what to do about it, however. We could attempt to condense her calories into 3 meals instead of 4, opening up more time between the meals. This is probably theoretically possible, but her liquid volume is pretty good right now and I’m not sure I want to mess with it in that fashion. Letting her puke more isn’t really an option. I guess our best hope is to just keep waiting and hope that over time it won’t be as necessary to be so hyper vigilant. Things have improved tremendously; before, even with all of the vigilance we were still getting meals returned every day.
Sunday the 22nd marked the first time Dorrie actually laughed at something I said. We were watching the Food Truck Race on Food Network, and the preview showed the teams getting handed giant slabs of unbutchered meat. So naturally I pointed this out to D by saying ‘mooooooooo’. She found this absolutely hilarious and continued to laugh each time I said ‘mooooooo’ for quite some time after that. She was actually sitting in my lap at the time and facing away from me, so I know she wasn’t just responding to my face.
The joke was no longer funny by the next morning and she hasn’t responded like that again to anything else (yet). Auditory Dissynchrony/neuropathy is such a sucky diagnosis. It really tells you absolutely nothing about what she can and cannot hear and is and is not hearing. Communication is a big problem.
We took advantage of school vacation to make a visit to Grammy’s on Tuesday. It sounds less complicated than it was, unfortunately. Last fall we sold our second car, since with nursing being what it was and D being what she is, we can’t really ever leave the house at the same time unless she’s with us. Plus, though Dorrie hasn’t done anything really scary for quite a while, I still wouldn’t feel comfortable driving with her alone in the back seat. She often needs to be suctioned and sometimes needs to be reminded to keep her head from slumping forward.
So after Bob went to work, Grammy came over and got us in her car and we three drove back to her place. We stopped for a bit where she works so she could introduce D to the people there. Dorrie was highly suspicious, since Grammy works in a doctor’s office! It took her quite a while to relax, and she didn’t really completely do so until we came out of the office and got back into the car. Then she was grinning from ear to ear.
Unlike at Christmas, this time she had no issues with Grammy’s house at all and settled down on the floor to scoot around and play with the toys we brought. We had plenty of time there, since we had to feed her and then sit around for quite a while for it to be ‘safe’ for us to get her back into the car. We managed to make it back home without any puke incidents; D even fell asleep for about half of the ride, which she is usually reluctant to do.