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.

She’s grown a lot this past year, lengthwise, but she has not put on very much weight. According to the ped, she’s now about 25% for her actual age in weight, and made a huge jump from 3% to 10% in height. Woot!

Head is, of course, still way out of proportion at 75% or some other ridiculous number.

Grammy came and spent the night before Dorrie’s birthday, and Miss D was well behaved. She went to sleep at a reasonable (for her) hour, slept nicely, and then woke up just a little bit before 11am. So we then got her all dressed and packed up and headed off to the Fairy Tale Festival being held downtown at the park. I had been pretty concerned about the parking and traffic situation, and was right to be so, but as it happened, things worked out pretty well: since the festival started at 10, the traffic was pretty light by the time we got there at 11:45, and though there was zero parking to be had, we were able to find a place right at the park to pull off and unload.

Daddy took off to get some gas at that point, and Miss D proceeded up the hill in her chair with me and Grammy. First of all, let me just say that it was HOT. This summer has been one of the hottest I can remember for a very long time, and we’ve had a lot of very bright, sunny, HOT days. To put things into perspective, last year we had approximately 3 days of sun in all of June and for most of the rest of the summer the temps didn’t usually break 85. It’s been 90 and 100s for many many days already this year, and, of course, muggy. We don’t get dry heat.

So it was hot and bright, two things Dorrie has not had much experience with, but she handled it well. She was interested (if serious) and looked around without fussing or being upset. There were a lot of booths set up where you could do various fairy tale (aka princess and fairy) themed crafts. Some of these we bypassed, but Dorrie ‘helped’ make herself a wand and a bookmark. We entered a few raffles, which we did not win. Eventually we came around to the snow cone stand where Grammy and I each got one because did I mention it was HOT?

Apparently Dorrie agreed, because, in the amazing happening of the day, she made peace with her old enemy snow and consented to mouth part of mommy’s snow cone.

We circled back around and got in line for balloon animals (and plants — Dorrie got a flower) when daddy reappeared. By that point it was nearly 1pm, which was the end of the festival, and we had to be back at the house for an appointment by 2. So daddy went off again to retrieve the car, and we waited in the shade for him to make his way back. Amazingly, he managed to get down into the park (against the tide of exiting cars) so we could get everything packed away again, including the little sweat ball Dorrie.

Once we got home, we tried showing her her cake again (she’d examined in the night before with limited interest — see the end of the post for that).

This time we convinced her to touch it, but she was not pleased to find some of it sticking to her when she took her hand away.

She also had no interest in tasting any of the frosting.

But we were all happy to eat it for her.

The last thing for the day was to get her hand prints up on the wall. This went more smoothly than last year, since a) she is more used to going upstairs, b) she now has a real way of being off the vent instead of attaching her to an ambu-bag. We even managed to get her to (almost) put her hands flat by putting the ink on them, then starting patty cake and eventually patty-caking the wall.

The first viewing of the cake.

I hate you all.

Classy.

She was actually very good during the first appointment. We got her out of her chair onto a mat they provided, and she showed off her motor skills, such as they are, and her typical behavior very well. The conclusion wasn’t anything particularly new or unexpected — Dorrie is showing gradual improvement, and that is pretty much the best we can hope for. There is no saying just how far she will be able to go, so the goal is to keep doing what we have been doing, get as much for her in terms of services as we can, to try to obtain the best outcome possible.

After that, we had a little time to kill, because our next appointment wasn’t until 1pm. Dorrie was pretty happy hanging out in her chair, so we went down to the mall area of the hospital, parked ourselves near some comfy chairs with a table, and took turns going to get lunch. Shortly after I got back from getting my sandwich from Au Bon Pain, Dorrie decided it was nap time. And soon after that, so did I.

Dorrie got a pretty good nap in under the circumstances — me, not so much — and then we went to our next appointment. This one was with the neonatologist primarily, but she was actually kind of busy in the NICU, and was a little late to start, and also had to step out once to answer her pager. We had been told things were pretty busy in the NICU that day, and we know first-hand what it can be like, so we weren’t bothered by it. Of course, they hadn’t done a blood draw on Dorrie for quite a while, so it was time to get a good sample so they could do all the kinds of tests they used to do on what seemed like a daily basis. Dorrie was again a good girl — she was mad when they stuck a needle in her hand of course, but she calmed down pretty soon afterward, aided especially by us logging into the hospital’s public wifi with our smart phones and streaming YouTube clips of Sesame Street songs for her. Oh, how she loved those.

Anyway, after that visit, it was down to speech therapy to get Dorrie screened for a Passy-Muir speaking valve.

This is one of those things we had been talking about for a while, but it wasn’t really a good option before. Basically, it is just a one-way valve that sits on the end of her trach so that she can breathe in through the trach, but can’t breathe out through it — so she has to breathe out through her mouth and nose. This in turn means that she can basically use her voice normally, for the first time since the trach was first put in. Not long after she made this discovery, she quickly started making it known — fairly loudly — just what her opinion was of having to sit in her chair for five hours straight and have strange people messing with her. So, it was time to break out more YouTube clips to keep her entertained, while Mom talked with the doctor and an RT about the options for using the valve: basically, either right on the end of the trach like in the picture, or using a different kind designed for using in a vent, which would let us keep her on extra oxygen with the valve in. We’re probably going to do a bit of both for now, but we’ll see how she does when she has the valve in and doesn’t have a sore butt from sitting around all day.

Anyway, that was our last appointment, so then it was time to go home. We again were hoping that she’d go to sleep, and all signs were that she was tired enough to, but no go — more like 45 minutes in this time, she started getting fussy again. Unfortunately, our plan for the day had included giving her some food after we got to the hospital — that went fine — and then giving her some more on the trip home — and that was probably not as good an idea. Sure enough, about 20 minutes from home, lunch came back up — aided probably by the fact that I inadvertently gave her too much water after the food, but mostly because she was just plain tired and pissed off, and wasn’t having any more of it. (Next time, we’ll have those Sesame Street clips stored on our phones, so we don’t have to rely on a wifi connection to use them when Dorrie-pacification is required.)

So, that was our adventure for the day. All in all, it was not a bad trip. I have to admit that while the assessment from Child Development wasn’t really a surprise, I hadn’t really formed a very clear picture in my mind of how we could expect Dorrie to progress, and hearing it spelled out made me temper my expectations a little. The good news is that medically, Dorrie is doing just great, and we can really focus on her development — and on that front, we’ve already made a good start, and things are going in the right direction. We just have to keep going, and keep doing everything that we can for her.

In continuing with our rearrangement, we’ve finally moved Dorrie’s rocking chair up to her room rather than having its purple gingham gracing our living room. We bought a new recliner to replace it (otherwise there’d be no real place for people to sit besides the couch). Dorrie approves of the new chair.

The recliner wasn’t the only new chair to arrive this week. A few months ago, we had ordered a bath chair. MVP naturally denied the claim and it was sent along to medicaid. Medicaid is currently in a mess due to the discontinuation of some federal funds the state had been expecting, and one of the emergency cost cutting measures they had implemented was to pay DME companies cost + 10% of items rather than cost + 30% as they had been. The DME companies were in an uproar as a result, as the new repayment scheme didn’t actually cover their overhead, and quite a lot of equipment wasn’t able to be ordered. After general outrage at disabled little kids not getting wheelchairs, the state backtracked and restored the funding to normal. We knew Dorrie’s bath chair had been caught up in this mess, but we were still trying to find out if it had been ordered when it was suddenly sitting on our porch one night at 9pm when I came home from work.

Dorrie still isn’t sure what to think about it, but I think she won’t have too much trouble getting accustomed to it once we can actually use it for her baths.

Last, a bonus picture: casual Dorrie.

This time Grammy went with us, and we had a fairly nice lunch. I say fairly, because the restaurant was hot (what the heck is with businesses not having their AC going in the morning?) and because it wasn’t especially relaxing to try and eat while keeping an eye on Dorrie in her chair. Mainly because she just seemed bored. There were other people nearby and she watched them, but she wasn’t very interested in the toys we’d brought or in watching us eat.

So, it was a success (and I was pleased to discover that restaurants are noisy enough that the sound of a suction machine is as nothing), but I’m not sure how often we’ll try it. It’s just as pleasant to sit at home and eat take out.

In an update to the last post, as of last Monday we’ve decided to discontinue all goat milk for now and try and figure out an alternate plan. She was very very phlegmy, she had a rash on her chest which may have been heat rash but may not have been, and it just didn’t seem like the increase was agreeing with her very well. Puking has eased off a bit (except for yesterday, where she did it three times. :P). We’ll wait until we settle out with that before we move ahead with an alternate idea.

This week has been bad, though. Three days in a row of pukes. Today’s was the worst, as I’d taken her upstairs and I really didn’t want her to throw up on her bed or her bedroom carpet before she’d ever actually gotten to spend the night using either. So I ended up racing her downstairs with her in my arms and the puke cradled between us.

It was gross.

After removing her clothes and half of my own, I cleaned her up, but we ended up changing the trach once dad got home just so I could clean her neck underneath it (naturally, it all pooled in and around her neck.)

About a week and a half ago we upped her intake of goat kefir, and I’m wondering if that’s finally starting to catch up with her. If that’s the case, then we may have hit a wall in our efforts to get completely off the Neocate. We’ll see how the next week or so goes.

The showing we had intended to go to was special (AMC’s Sensory Friendly Films — a brilliant idea and we definitely will get to one eventually) because we thought they might be more understanding of occasional noise of suctioning. Those are only once a month, but we still wanted to go, so we thought we might dare a regular showing. When the weekend of the 4th was to be sunny, we thought perhaps the movies would be relatively empty what with people at barbecues and doing outdoor stuff.

Dorrie woke up this morning right before we were going to have to wake her, and that was definitely a sign. We’d had her watch Toy Story a few times this week so she’d recognize the characters (it can take her a while to warm up to unfamiliar shows), so we were all ready.

It turned out we were wrong about no one coming to the movies on the morning of the sunny 4th, but we didn’t hear any sick people in there either so it was fine. Somewhat annoying was the fact that the wheelchair seating was basically a big empty area with one lone seat for the non-wheelchair person with them. But it was right at the back in case it was necessary to make a quick exit.

Dorrie did great! There were endless previews, which neither dad nor I had reckoned with, but I rolled her out to the lobby for suctioning once then and one more time during the middle of the movie and that was it! I was so impressed. She was pretty tired of it by the end of the movie (I think she would do better with something that had a little more music or perhaps starred the Muppets) but she stayed fairly calm until it was all done. It was obvious, however, that she was relieved to get back into her carseat.

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.)