26
August
2010
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.
Posted: insurance drama, moving forward... or not, our little witch, schoolhouse rock
24
June
2010
So we finally had our actual IEP meeting last Friday.
As mentioned before, this was the culmination of several months worth of meetings and visits — ESS notified the school district about Dorrie back in January or so, and then in March or April the pre-school coordinator came to visit. After that we had a meeting in April to determine need, then all the specialists came to visit and observe Dorrie, then we had a meeting to discuss the findings, and then finally the last meeting to present the plan for the next school year.
We are fairly fortunate in that our school district is quite large for the state, and accordingly well funded and well staffed. They already have a teacher of the deaf and a teacher of the visually impaired on staff, plus PT, SLP, OT and special needs preschool educators.
We also decided as a group that it would be wiser for Dorrie to have services at home for the next year. Hopefully by next summer she’ll be off the oxygen and the vent, and we can explore the possibility of her actually attending the school. For now, that’s not a good plan. In any case, that lessens the burden on the district because they aren’t going to be required to provide her with a nurse or an aide.
I can’t say I’m 100% happy with the plan. But I am about 92%. That doesn’t count the part that wishes desperately there was no need for this at all.
What we got:
Summer services: 1x60m/week SLP, 1x60m/week PT, 1x60m/week OT, 1x60m/week vision. Preschool ed & teacher for the deaf are off in summer but will consult
* Now, as mentioned before, we have every reason to believe Dorrie’s vision is fine. But because it’s fine, and she does have such good control over what she looks at, this is going to be the easiest way to communicate with her for the forseeable future. So the vision teacher will help us with trying to assess her functional vision and to help work on things like signing and picture boards.
School year services: 1x60m/week SLP, 1x60m/week PT, 1x60m/week OT, 1x60m/week vision. Also 1x60m/week preschool ed, and 1x60m/week teacher of the deaf, but they will most likely come in tandem with someone else. So still 4h total services.
* This was where the 8% dissatisfaction came in. She has made some real progress this past year since she started getting PT once a week. I think PT twice a week would be even better. They were reluctant to add a second session, because they thought it might be too overwhelming for her. However, it was clear to me that they hadn’t actually thought about just how much time was going to be spent -with her-. 4h/week is hardly more than the 3h/week she already gets.
However, it’s also true that these are going to be a whole new set of people coming in, and Dorrie will need time to get used to them and trust them before she’s likely to make much progress at all — PT especially, since that’s very hands on. So we got their agreement that after she’s had some time to adjust (end of September) we’ll have another meeting and talk about adding another hour of PT. And at that point we (Bob and I) may have a better idea if we need to make other adjustments too.
(The other day I went in to the bathroom and when I came out again she was like this. If you can’t see it, she had flipped the tubes over so she could try and chew on it.)
(That thing on the left that she’s staring at is her oxygen sat monitor. She finds it fascinating.)
Posted: schoolhouse rock
27
May
2010
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: moving forward... or not, nurse or no nurse, our little witch, schoolhouse rock
27
April
2010
Did I mention that we’ve gotten rid of the overnight feeds? I’m sure I have, but it bears mentioning again because it’s so wonderful to THROW AWAY the stupid feeding bag at 9:30pm each night.
Puking is currently at an all time low. I’ll probably jinx it by saying so, but we’ve only had 4 pukies in the whole of April. 4!
Vent weaning continues to go all right. We’ve spent April at ~11 hours off a day, and once it turns to May we’ll go up to 12. We’re almost at the point where we can consider the logistics of having her sleep upstairs in her own room.
It’s already much much easier to move her around in the house. Last week we brought her upstairs to our room so we could tidy it up before a guest came on Friday. And then mom and I brought her upstairs on Friday so we could tidy up -her- room, which had somehow turned into storage central with piles of unopened and partially opened medical supply boxes everywhere.
Friday was quite busy, as I look back on it. The morning was spent at the elementary school where we had our initial IEP meeting. Aside from me and Dorrie’s 3 therapists, there were also the special needs preschool coordinator, a preschool teacher, visually impaired teacher, teacher for the deaf, SLP, OT, and PT. The meeting was mostly for them to get information from me and for them to go through the motions of determining that yes, there was a disability here and thus evaluations were called for. Over the next few weeks most of the school system people from the meeting will visit the house in conjunction with Dorrie’s EI therapists and do some evaluations. Then we have two more meetings (at least). One to discuss the findings and then one to discuss the actual IEP once it’s written.
Hopefully it all goes smoothly. Dorrie’s case is not particularly unclear — it’s mainly a question of how much they’re going to say they can provide vs. how much we want and how close that comes out to be.
Dorrie is doing well. Aside from going upstairs a couple of times last week, she’s also working with her stander again. It had been in desperate need of adjustment, and neither her PT nor I could manage to do it. Finally someone from the equipment place came and they had to practically disassemble it to get it to the proper configuration.
Now that she’s comfortable in the stander again, she’s back to enjoying it as she had been originally. She even discovered a new and highly amusing game with daddy, ‘disappearing pinwheel’. Daddy would wave the pinwheel around and then suddenly yank it down underneath the tray. It never failed to crack her up.
In nursing news, we got a second weekday nurse a few weeks ago. Or supposedly we did. She came one day, then had to take off the next week for some unknown reason. Then last week she just didn’t show up at all. Supposedly this was the agency’s fault for not calling us (…) but I’m still putting it 50/50 that she’ll show up tomorrow.
Posted: little fat fairy, moving forward... or not, nurse or no nurse, our little witch, schoolhouse rock
12
April
2010
Unfortunately for me, my laziness meant that Mom posted the pictures I took of Dorrie during her trip to Pittsburgh before I could, but I do still owe a post, so here it is!
First of all, things were uneventful on the home front while Mom was away. Grammy did her usual Friday cleaning routine, we ordered our usual Friday afternoon pizzas, and then we hung out with Dorrie for the rest of the evening. As usual when Grammy stays over, she slept on the floor with Dorrie to keep her happy during the night (turning her if she wants it, patting her to keep her calm when she gets fussy, changing her if her diaper gets too full, etc.), and I slept on the couch and took care of the food and water and meds and such. My other duty of course was to help get Dorrie to sleep when she started getting tired, since she often fusses and fights sleep as long as she can. But to everyone’s surprise, she went to sleep for Grammy just fine — and not only that, but earlier than usual for her. Go, Grammy!
And it looks like it may have been the start of a trend — or at least that’s what we hope. Lately it’s been getting easier to get Dorrie to sleep, in spite of the fact she still tends to take her nap in the middle of the evening. Right now, her desired bedtime seems to have shifted to around 2:30am instead of 4am, and she has been waking up more around Noon instead of 2pm. Hopefully we can keep encouraging that trend.
Last week was our visit to a clinic with a whole bunch of specialists to try to get a grasp on just where Dorrie is at developmentally. We wisely brought along some of Dorrie’s floor mats because we knew that if we put her on the exam table, she’d tense up and freak out, and since the goal was to see her normal behavior, the whole trip would be a waste. And Dorrie was a bit tense at first, but we got out Monkey Ball and sat with her, and pretty soon she was playing and behaving normally. The specialists asked questions about Dorrie’s medical status and what she seems capable of, and we got a brief visit from an osteopath (I think) who checked her out and declared he didn’t feel anything about her skeletal structure that gave him concern, and that we would not need to x-ray her this visit. I don’t think Mom or I really learned anything we didn’t already know during the visit, but I think that the team working on Dorrie’s case has a better picture now of where we are. And of course, all this also feeds into this summer, when she is supposed to start school.
And that is another project for this month: Dorrie turns three in July, which means it is time to start school. All signs are that she will get her services at home, which is pretty much the only way we could do it without seriously inconveniencing ourselves as well as the school. Personally, I’m enthusiastic to see how she does with more intensive support — the few PT and OT visits we get each week are good, but more is always better.
Posted: our little witch, schoolhouse rock