After our Easter postponement and then mother’s day, we waited a few weeks before trying to ‘reschedule’ Easter. In the end we decided to do it the same day as Father’s day, though as out of it as we all are, we didn’t realize it right away.
So we made reservations at the same place as before. And then, on Thursday… Dorrie started acting like she had a cold.
I swear, this place is cursed.
But fortunately for everyone, it was a very weak though insanely contagious cold. Everyone who caught it felt better in about 48 hours or less. Unfortunately, in addition to Dorrie, she managed to spread it to mom, dad, grammy and one of her nurses. So even though mom wasn’t feeling great on Sunday, we all still decided to keep the date.
The restaurant was nice, and the food was quite good. Though Dorrie decided she didn’t really care to be there and spent the entire meal in mom’s lap. Which meant that it took mom about 10x as long as everyone else to eat, and grammy got a chance to cut up some meat for the first time in many years.
After we ate, we headed over to Uncle Jonathan’s place which, even though he moved in there about 3 years ago, none of us (meaning me, Bob or Dorrie) had ever seen. It was very nice. Though Dorrie found it not interesting enough to stay awake for. (And neither did daddy.)
On the way home we finally managed to locate the mythical Sonic. (You have no idea how many times we’ve tried to find this when we were in the area. It’s fairly pathetic.)
Dorrie got her teeth right on schedule and in the correct order. She’s also never really eaten much of anything by mouth, though to our dismay she continues to occasionally return her food to us by mouth.
Because of her poor swallowing ability, and her inability to understand not to try and swallow something, we’ve never felt comfortable using any sort of toothpaste with her and have relied on dry brushing to keep her teeth clean. But beyond that I’m ashamed to admit we’ve done almost nothing at all. The summer she turned two we discussed going to the dentist, but she was still on the vent full time at that point, and we never got further than discussion and asking a few people for recommendations about a dentist to try. (We got conflicting recommendations, which didn’t make us any more eager to pursue the matter.)
Last summer she turned three and was off the vent during the day, but we still didn’t have a better idea of where to go, so in the end a visit remained in the realm of discussion — though with additional guilt and concern that we really needed to get this done. So finally this winter we polled her teachers for recommendations and got a very enthusiastic one from her vision teacher. After some hemming and hawing, we made an appointment. When I would brush her teeth I could see some gunk on there that the brush just wasn’t getting off, so it was clear she needed a dental cleaning.
The visit went extremely smoothly all things considered. Dorrie is a biter, and she will try to chew anything that goes into her mouth. I was very afraid she would try to bite the scrapey thing the dentist uses and injure herself, or turn her head suddenly while he was working and again, injure herself. I had horrible visions of Dorrie with bloody holes in her mouth, so I was pretty on edge when the cleaning started. But as noted, it went very smoothly. The mirror the dentist used for some reason made Dorrie keep her mouth open rather than chomp down on it, and she didn’t try to bite the scraper at all. She was also very calm about the whole thing and didn’t freak out. We were very pleased to hear that in spite of her incessant vomiting, her teeth are actually in very good shape – no pitting or other obvious signs of deterioration. So yay. Hopefully they’ll continue to be in good shape for our next visit.
Many pictures backlogged, including great-grammy’s 90th birthday party. But otherwise things have been on a pretty even keel for the past few weeks. The pukies continue to be at a low ebb, the teachers have been coming (mostly) when they said, and nursing has been very stable.
We’ve been making a lot of plans for the summer, with the intention of getting Dorrie out of the house a lot more than she has in the past. The first step was to be Easter, where Dorrie would join all of us for a meal out and then visit Uncle Jonathan’s house (which none of us have ever seen, in spite of his having moved there 3 years ago.) Unfortunately, Dorrie developed a fever on Saturday night (Just a titch under 100 — but even that slight of a fever shot her heartrate up to 150) and had a very poor night sleep-wise as a result. So we postponed Easter and stayed home instead.
So far she seems to be recovering without any major issues. Fortunately it’s April vacation this week, so she hasn’t had to miss any school and we’ve been able to be very flexible with her sleeping and eating schedule.
The next scheduled event is Thursday — first non-mom haircut. Her hair is incredibly long now, but a huge mess. She’s constantly getting her fingers stuck in it, it’s in the way when we go to change her trach ties, and it hangs in her eyes. So it needs to come off. If she gets better head control we can think about letting it get long again, because then we’ll be able to tie it back. Right now any ties just get rubbed off immediately as she slides her head around on the floor.
Before Dorrie was born, we had quite a few trick or treaters on our road. We live in a large development that’s pretty much all townhouses with a few one-level apartments thrown in. A lot of dwellings really close together, in other words, so it seems like it would be ideal for candy. But the past couple of years we’ve had hardly anyone show. This year we had a grand total of 6. I can’t justify buying a lot of candy for 6 people!
Anyway, pretty much all the homes in the development have steps up to the front door, so Dorrie can’t get up there in her chair. As a result, we decided against trick or treat again this year. I hadn’t really intended to even bother with a costume, but I changed my mind at the last minute and so we had the return of Tinkerbell. There is still glitter all over the house.
We took over 200 pictures of her in this costume and this is one of only two where she’s smiling. (To be fair, Grammy and the nurse had an earlier photo session while we were at work and she smiled in a few of those, too.)
Pre-Halloween, Dorrie has been feeling pretty much herself again, and so far is tolerating the hemp milk and honey pretty well. She was exploring on the floor one night when she ran into daddy’s feet and had to find a way around them.
Where was I?
PT has requested that we spend more time with Dorrie holding her head in the center. When she’s unsupported on her back she likes to allow it to tip right or left, which is not great for the neck muscles when done constantly. Since we haven’t started using her bath chair for baths yet, it’s a good place for her to sit and watch some tv. Dorrie approves of any therapy where she gets to watch Sesame Street.
She also finally had her rescheduled visit to neuromotor clinic today, where by all accounts she did great. (It was daddy’s turn to go to this appointment, so I wasn’t there in person.) She had to have an x-ray of her bones and skeletal structure just to make sure nothing was going wrong with her growth. And growing she has been — a whole inch and a half since July!
She is long.
Dorrie with one of the new toys she got for her birthday. She’s really good at hitting all of the buttons and making it go off.
Our new camera lets you hold the button down and take pictures in rapid succession. I managed to get a series of her laughing that I should totally make into an animated gif. This is one of them.
Every once in a while I sit there and curl my tongue at her, trying to see if she can do it too. She’s never obliged with a demonstration, but then I noticed in this picture she’s doing it!
Dorrie checks her email.
Very excited to escape from a doctor’s office with nothing done to her! (Outside Grammy’s work)
After borrowing a weighted blanket from Dorrie’s EI OT, we decided to buy one for her. I hunted around online and found a place that let you order ones with custom fabric, and they had Sesame Street. We were very impressed when it arrived; it’s extremely well made. It’s really made a difference in her sleeping.
Hot Fudge Face!
Time for another disjointed, rambly post!
* * *
I had been kind of delaying this post because we finally finally had a date when they were supposed to install our wheelchair ramp. But they called today and the parts haven’t come in yet, so tomorrow is probably off. I’m really bummed. The weather the past two weeks has been beautiful and though we’ve taken Dorrie out on the deck a few times, it would really be nice to get her in her chair and go for a walk.
* * *
After her couple weeks of vacation, Dorrie ‘started’ school again the week before Labor Day. I say started, but we only had one visit that week, a combined OT/SLP visit. The next week was short again, but we managed to get in everyone except the TOD who randomly did not show up.
This week so far (2 days out of 5) everyone has arrived when they were supposed to, though the TOD (who, I must mention, chose her own date and time to visit) announced that this time was really bad for her and she needed to pick another one. Umm. Why did you pick a time that was bad for you?! She wanted to come on Monday ahead of OT; I tried to explain to her multiple times that while Dorrie is fine with two sessions in a day, they cannot be one after the other like that. She needs a break in the middle. In any case, right now I have no real idea when she’s going to come next week, so I’ll have to try and find out later this week.
* * *
So far D has been doing okay with school. She was quite happy and participatory last week, but so far this week has not been at all interested in paying attention in class. She just frowns and stares at the toys, but doesn’t really seem like she wants to play with them.
Then as soon as the teacher leaves she’s a crazy girl, scooting all over the floor, playing with all her toys and having fits of giggles.
She’s a mystery.
* * *
After some confusion with Medicaid it looks like all we have to do is fill out some kind of form to get some extra PT. Fingers crossed we should have this squared away soon. Of course, it would be easier had they actually sent the form last time along with the list of providers, but we all know it’s insurers who are conspiring to keep the USPS afloat in these hard times.
* * *
Dorrie’s been doing great off of oxygen so far during the day. Over the weekend we ran out of HMEs with no oxygen port (and after being asked for more, our DME managed to send us even more of the kind with the oxygen port, gah), so she spent most of Sunday and Monday with her passy-muir valve on. I like it, because she has an easier time making sounds with it, plus she doesn’t need suctioning. But I also don’t like it because it doesn’t seem as well filtered as the HMEs. I’m always worried a hair or a bit of fluff will go into it. Which is why I’m reluctant to let her wear it anywhere outside the house — we usually stick with our HME/suction setup then.
Some days it seems like her poor toes need a rest from the oxygen sensor, so we leave her on oxygen those days and take off the probe. She likes that too, because bare feet are fun and have much more traction.
* * *
She’s been making a tiny bit of progress in some areas. I really do think she’s getting better with her arm; it’s clear enough that she now does understand that hitting her toys is what makes them go, and she’ll repeatedly smack her toys so that they keep playing music/flashing lights/wobbling back and forth. She also shows a definite interest in specific toys that may be out of her reach.
When she’s in an especially good mood, she laughs like crazy. She’s getting better at it: a lot of the time now you can hear her laughing.
She’s always been good at getting her bottom in the air (moreso than her top), but lately she really gets her knees pretty far under her hips. If she could lift her head at all, she’d be ready to crawl. Neither Bob nor I are really sure what to do to help her there. We try to encourage her and help her work on her strength, but so far I can’t say that we’ve seen much of an improvement in head control.
She’s much less fearful lately than she used to be. There was a period a few months ago where almost anything sent her into a panic, her arms and legs flung out like a starfish, her face frozen in horror and her voice making little whimpering noises. But I almost never see her do that now, unless there’s really some reason for it. She’s still a huge non-fan of anything crumb-like, and will gag and retch if one gets into her mouth. But she has gotten over her intense fear of anything not plastic flavored, and has been happily chewing on prunes and licking spoons of hot fudge.
* * *
Speaking of less fearful behavior, she behaved brilliantly at the cardiologist a couple of weeks ago. Last year, she was completely terrified and freaked out when she had to lie on the bed and the ultrasound wand touched her chest. She only calmed down after we put a Fraggle Rock DVD into the tv they had in the room for just such a purpose. So this year we came prepared and I brought along one of her Sesame Street DVDs to watch. But we didn’t even need it! She was instead absolutely fascinated by the ultrasound machine and watched very closely as the echo proceeded. She even had to get an EKG, and though she was not a fan of the little alligator clips, she only made minimal protest. Grammy, who was with me at the appointment, was incredibly impressed and so was I (and so was the ultrasound tech because I think she remembered last year and the year before).
The cardiologist was impressed as well, but mostly with the results! We’ve dropped captopril from our med regimen and dropped cardiology from our list of people to see. He’ll remain on deck if she has an illness, but we’re otherwise released (caveat: assuming her BP is still good when we have it retested at the start of October.)
I haven’t posted too much lately on here about the puking situation, mostly because it’s been significantly improved over the past year or so. For the past 6 months we’ve often gone a whole week at a time without a vomit.
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.
After a hiatus of a couple of months, we headed once again to DHMC last Monday for our long awaited eye appointment. Plus many others.
Dorrie was very pleased to be in the car for the first half of the trip, and was all smiles. But she must have realized that nothing good can come of being in the car for a very long time, because eventually her mood deteriorated and the square tongue came out.
She calmed down once we got her out of her car seat, and was delighted to be in her chair. We proceeded to our first appointment of the day, dermatology. We had to wait a little while, but were then ushered in to a largish room where the nurse apologized and said ‘the appointment was booked wrong’. I was starting to debate whether I needed to be annoyed or concerned, but the doctor came in anyway and she was one of the people who had already seen Dorrie last year, so I’m not sure what the big deal was. She examined the thing on her arm and said even though it looked different it still looked like [some long word I still can't remember] — basically a calcium cyst. We’re to let dermatology know if she’s going to be put under for anything else, and then they’ll remove it.
5 minutes, in and out. Very swift. So upstairs we went for our next appointment. Which, surprise, was with Dr Optimist! She hadn’t been on our schedule at all, but we hadn’t seen her since Feb(!) so this was not a problem. I went off to have some lunch, because we were told we’d have to wait 30m before going back to a room. Typically, Bob and Dorrie were called back about 5m after I left.
I returned to find Dorrie, to her extreme displeasure, had been MEASURED. She was still calming down from this dread experience and Bob was trying to get in between her flailing limbs to change her diaper. We managed to calm her down enough to get the diaper done, and then had a much more calm weigh-in. (Stats: 35″, 28.6lb, which tallies almost exactly with the numbers we’d taken at home)
Then Dr. Optimist arrived, and Dorrie eyed her with great suspicion. But she still had her clothes on, so I think she felt relatively safe, and so the stethoscope was endured without much trauma. We talked about her meds and her growth and about weaning and what to try next. I wanted to try and wean oxygen during the day before worrying about the vent at night, so that’s what we’re going to do. Nurse L wasn’t there, so everyone wimped out and labs were postponed once again, until July.
Then the eye nurse came in and put drops in D’s eyes, which she did not like at all. But she got over it pretty fast when no further indignities were immediately forthcoming. Sporting her awesome sunglasses, we moved to a different exam room.
And then a miracle occurred. The eye doctor came in and Dorrie smiled. And she continued to smile and laugh and be perfectly happy to stare at him and through his little lenses and at his light. So unlike last time, where he managed a 2 second peek in each eye, just barely long enough to confirm her retinas were properly attached, this time he got to stare and stare.
What we learned: no cataracts or other issues like that. Cornea and lenses are clear.
What we didn’t learn: anything about acuity. The laser surgery left too much scar tissue on the retina for shining a light manually to let him measure the reflection and figure out what kind of correction she needs.
But he agreed that based on her enthusiastic response to the things he was holding up and her excellent tracking, she certainly sees, and probably sees pretty well. We’ll keep trying to get a more exact assessment.
So that was appointment three. We headed to yet another exam room for appointment four. Unfortunately, Dorrie’s eyes were still dilated and this new room had no dimmer, so we had to try and keep her sunglasses on. She didn’t like that much, as she was tired of them (and tired in general.) The last appointment was neuro, and she wasn’t especially keen to have her reflexes tested; it had been a long day of people looking at her already by this point.
Neuro didn’t have any super helpful recommendations. I’m not sure what I expected him to say, but it’s discouraging to have no particular idea of how to improve her delays beyond therapy therapy therapy. Which is ok but it’s slow and hard to get.
Dorrie was not impressed by Neuro at all, and while we were talking, she finally convinced me to take away her sunglasses. So she sat there instead with her eyes closed and very soon fell asleep. And then the second miracle occurred. She remained asleep as we left the office, rode the elevator and bumped our way back to the car. She stayed asleep as we stuffed her back into her car seat and got her buckled in. She slept while daddy made phone calls from the back seat. She finally woke up shortly before we stopped for gas, about a third or half of the way home.
Dorrie’s recently started to show a very strong preference and interest in certain television shows. All flavors of Sesame we get (Sesame Street, Play with me Sesame and Plaza Sesamo), as well as Angelina Ballerina are her favorites, and often cause her to absolutely crack up.
Even though she can be quite ‘chatty’ at other times, for some reason when she laughs, it’s very rare for her to make a noise. Instead, if she’s sitting in your lap you can feel her body shaking as she laughs and laughs.
(PS. The nurse didn’t show up again today. And they didn’t bother to tell us until we called to inquire.)
(PPS. The snotmonster seems to be nearly departed.)
Bob had said he was going to write a post, and so I was waiting for him to do it. Then he never did. (You are not off the hook! :))
Anyhow, the appointments mentioned in my last post but one were less than great. Not because of any bad news, but because somehow, about 50% of the time we drive the 200 mile round trip to DHMC it feels like we’ve wasted our time. After a great deal of wrangling back and forth about whether we were going to see Dr. Optimist this time around, we finally agreed that it just wasn’t going to work out schedule wise. So the first appointment of the day was audiology.
The appointment was at 2:30pm, and we thought that would be perfect. Dorrie is usually awake at that time and in a good mood. Unfortunately, she did not enjoy the car trip in the least — unusually for her (and we’re hoping hoping not a sign of things to come) she was crabby and complained most of the way. She was even less thrilled when we had to change her diaper in the back of the car when we got there. Then, as we were loading her into her stroller, she decided to vent her ire by throwing up all of her lunch.
Luckily we managed to direct the puke away from her, so her clothes weren’t covered. The stroller got hit, as well as the ground in the parking lot, but really who cares about the parking lot? We mopped up the stroller as best we could, Bob and I had a very tense moment in front of the poor guy waiting so he could pull his car out, and we finally got inside. But after the car ride and then the puke, it was clear that Dorrie was already done for the day before anything had even begun.
She was crabby at the audiologist and refused to cooperate at all in the testing booth. She was in a foul mood and did not want to be in her stroller or at the hospital. It probably would have been wise of us to take her out of the stroller and sit her on our lap for the booth, but it just didn’t seem like a great idea at the time. So the audiology visit was mostly a bust.
Then we went to the ENT, where Dorrie’s nemesis, Nurse L awaited with the dreaded Synagis. Dorrie was horrified after getting her shots and would only be consoled by getting out of the stroller and sitting on daddy’s lap. And this was the bright spot of the day, because still so seated, she found being examined with the otoscope, a procedure which usually reduces her to tears, to be highly amusing. We found that the remaining ear tube, which we had thought was gone, was still in place — just completely clogged. But no immediate plans for new tubes, so that is fine.
And then we left. Getting into the car went better than getting out, but the ride home (my turn to ride in the back) was just as awful as the ride up. Dorrie, though clearly exhausted, refused to nap. Instead she complained and fussed and coughed the whole two hour ride home. She would be quiet (though not happy) only if sung to.
It was a very long day, and as noted before, it often feels like a waste to drive all that way and essentially learn nothing. Was it worth a four hour car ride, Bob taking a day off work, and exposure to a hospital to get a couple of shots of Synagis? I don’t know.
On the plus side:
We did not bring the vent with us at all and Dorrie did fine.
We were able to get in and out of the house in record time.
Done with Synagis, probably forever.
This coming week we have another appointment, but this one is closer. The state has something called ‘neuromuscular clinic’ at which kids enrolled in special medical services can come and see a neurologist, an orthopedist and uh, someone else, all at the same time. This will be the first time Dorrie has gone, so we’ll see how it goes. Her PT is coming with us. Later this summer we should have an eye appointment, a visit with her regular neurologist, and the developmental pediatrician. Plus her actual ped, who we tend to see only once a year given her numerous specialists.
And now… some pictures!
A while ago, someone had wanted to see a picture of her trach. I never posted the pic here, but I thought there might be some interest. Check out the notes on the pic.
Our OT lent us a weighted blanket a month or so ago to see if it would help with her sleeping. It has been very useful. Here we’re just using it for positioning, but she often sleeps at night with it on her legs and it does seem to help her remain calm.
For some reason she thinks having her snail push the monkeyball is absolutely hilarious.
Grammy was the one who invented the game.
In the mornings, if there’s no nurse (and sometimes even if there is), I’ll lay down with her after Bob goes to work. We can usually eke out a few more hours of sleep if I turn her around and hold her. I usually fall asleep myself at some point.
If it’s cold, I usually end up covering us up with the handy blanket that hangs around in the living room.
Where did Dorrie go?
The weather was great while I was in Pittsburgh a couple of weeks ago, so Dorrie went for a walk with dad and Grammy.
She saw far more of the outside than she’d ever really seen before. They walked all the way over to these little ponds a couple of streets over.
I wanted to see how she’d do on the sofa. The last time we tried sitting her anywhere (other than her own seats) was almost a year ago. She has improved a great deal, though there’s still a long ways to go.
Orange Dorrie and daddy watching tv together.