18
February
2011
Looking back, I don’t often write about our day to day activities. Our days are all very alike. A while ago I had started a post detailing a day pretty much minute by minute, but it really wasn’t coming out as I’d hoped. But it might be time to try that again.
* * *
Dorrie has several favorite TV shows, but by far her two favorites are Angelina Ballerina and anything Sesame (This somewhat extends to all Muppet shows, as she quite liked Fraggle Rock as well, but we generally have a pile of Sesame Street, Play With Me Sesame, and Plaza Sesamo saved on the Tivo.) At the urging of one of my friends, I’ve started watching Top Chef this season, so everyone at our house was pleased to see the summary of this week’s upcoming episode. A cookie challenge! And, of course, to judge a cookie contest, you must go to the world’s cookie expert: Cookie Monster. He brought along two of his friends (Elmo and Telly) and Dorrie was overjoyed to see them all appear on what I’m sure she thought was a boring mommy and daddy show. She went absolutely bananas, laughing and wiggling and trying to flip herself out of my lap.
* * *
Dorrie is a biter. I’m sure it’s a sensory thing; the fact is, I’m a biter too — I’m always chewing on stuff. Pen caps, fingernails, it’s endless. I don’t even realize I’m doing it. Sometimes gum helps. In any case, Dorrie has the biting gene, but not the understanding that biting people (including herself) is not nice. It can also become a problem while she’s having school, because there’s a fine line between Dorrie chewing on something for a few seconds and Dorrie completely frantic to chew on everything to the exclusion of all else. Plus, some of the school things are not good for chewing on.
Today during PT, one of the activities we did was for her to sit supported in the PT’s lap while we helped her to draw on a dry erase board. She chose between two markers and I helped her draw with the red marker for a while. Her attention started to wander, so we stopped and asked if she wanted more, or if she was all done. She didn’t really seem to have an opinion, so we offered her a choice of two colors again, and she picked the green marker instead of the red. The green pleased her much more, and she allowed her hand to be supported to draw for quite a while, watching the board intently and smiling to herself. [She was looking so adorable while she did this, it was killing me that I didn't have the camera or a hand free to take her picture.] After some time, I took the marker back and asked her again if she wanted more. We thought she was indicating she wanted it back, so we started drawing again. This time she had more of an idea of where she wanted her hand to go and started inching it down the board. Then her head began to tilt toward the marker and her mouth opened oh so casually — she wanted to bite the cap.
I took the marker away and said it was all done, since she just wanted to bite it. And she started to laugh, quite obviously pleased with herself for having tricked us into thinking she wasn’t done drawing.
Posted by mom, under moving forward... or not, our little witch, schoolhouse rock
17
February
2011
So after Christmas things were normal for a week or so.
And then the pukies began. It was an instant return to the bad old days, with mom and dad hovering nearby with a bath towel, ready to capture the inevitable. Tempers were frayed. Everyone was tense. Even Dorrie, who is normally extremely cheerful, was crabby and fussy.
We couldn’t figure out what was going on. We hadn’t made any real changes to her diet that could have caused it, as far as we could tell. But the whole household was on edge.
January was a horrid month. We had a mere 6 puke free days, most of which were toward the start of the month. The other days tended to have 1-3 pukes apiece.
Bob’s theory was that the Neocate we were using was ‘stale’ (we had opened a box due to expire in March 2011).
I thought that the dry air in the house (which had wreaked havoc with my own skin) was making her cough more and was aggravating her reflux.
So we switched to newer formula cans and bought a humidifier for the living room. And things seemed to improve for a couple of days before they went down the tubes again.
We gave her a good deal of extra prune juice in case she was constipated. We managed to convince the doctor to increase her Zegerid dose.
We took her to the ped’s office (someplace we avoid like the plague in the winter, due to the potential for, well.. plague.) to see if she had an ear infection.
One night, while she was sitting in my lap, her tummy started to make a strange gurgling noise. Then we could hear her swallowing, and after a moment or two she threw up. We got a syringe out and vented her g-tube and a huge amount of air came out of her belly. Where did it come from? We have no idea.
So now added to the routine is to vent her stomach /and/ sit her up to burp before starting a meal. We’ve also had to start stopping the food in the middle to give her a few minutes to digest.
But we still don’t really know why any of this changed. At least, cross fingers, it may be improving again. But I hate that we’re back where we were a year and a half ago. That we’re once again having to be super cautious about moving her around, that we’re following her around with towels, jumping every time she opens her mouth to yawn. Her disabilities already make it so incredibly difficult to do anything with her, having to take all of these precautions to keep her from vomiting just makes it impossible.
Posted by mom, under little fat fairy, moving forward... or not
7
February
2011
One change we made when we started having Dorrie sleep upstairs was a rededication to sticking with her feeding schedule during the day. When she was downstairs it was easy to let it slide — by the end of the day, we were off by as much as 2 hours, and she’d be getting her last meal, scheduled for 9pm, around 11pm. But we as we would much prefer her not to throw up upstairs (so much harder to clean on carpet and bedding!), she needs to be done eating for at least 90 minutes and preferably 2 hours before she’s allowed to go up to her room. So in the interests of getting her upstairs before 3am, adherence to the schedule is at an all time high.
How is this relevant to Christmas? Well, as her predilection for puking means that she needs to have an empty stomach when she gets into her car seat, the promised visit to Grammy’s house required some serious thought as to scheduling. We eventually determined that the best choice would be a 24h visit — arrive around noon on one day, and leave not later than noon on the next. That way a full feeding cycle would take place at Grammy’s house and we could depart before the next one began.
After some discussion, we decided that we’d go over to Grammy’s at noon on Christmas Eve, spend the night, and leave at noon on Christmas Day. It would be the first time Dorrie has ever spent the night somewhere other than our house or the hospital, and it required quite a bit of advanced planning!
Early in December, we did our first test: could Dorrie manage a whole 36 hours without humidification. Our lives would be made much easier if we didn’t have to bring along the humidifier unit that goes with her ventilator. So we tried her out at home, and though she was pretty suction-y by the time it was bedtime on the second evening, she did fine. Check.
Then we had to consider the sleeping arrangements at Grammy’s house. Should Dorrie sleep upstairs? With whom? Sleeping with either mom or dad would relegate the other parent down to the sofa. Sleeping with Grammy would mean mom and dad might have to get up a bunch of times anyway. (We don’t allow her to sleep on her own — she has such poor control over her arms that she tends to knock her tubes apart or accidentally grab at her trach/vent tubing/g-tube while she’s sleeping, and it’s much easier having someone right there to stop her before she injures herself.) And where would the vent go? Did we need to bring the IV pole it usually stands on?
Anyway, with much trepidation and two very stressed parents, we packed up Miss D and headed over to Grammy’s house on Christmas Eve. We got there in good time, got Dorrie eating her lunch, and then sat down to ours. Unfortunately our meal came a little soon after hers, and getting put into her chair didn’t sit very well with her stomach — so we got to clean up some pukies before eating.
That was really the worst mishap of the day, though. The afternoon and evening were very pleasant and Dorrie, though occasionally fussy due to being tired, was a pretty good girl. It was a real relief to know that we didn’t have to pack up and go home still that night, even though both of us were pretty nervous about the night to come.
Dorrie fell asleep downstairs and as it had been decided that she’d sleep with Grammy, we brought her up there and got her settled in to bed with her suction machine and her vent sitting on one of the dining room chairs. She seemed pretty well asleep at that time, but she woke up after a couple hours and decided to have a long babbled chat with Grammy (which we got to listen to over the monitor). Eventually daddy went and got her some melatonin and she quieted down and went back to sleep.
She got up very early (for Dorrie) in spite of the poor sleeping the night before, so we all went downstairs and opened gifts.
After that, it was time to go! We got home so early, everyone had baths, and mom and dad ordered Chinese food. Even though it was a good time, we decided that next year, Christmas is going to be at our house. So much easier for Dorrie to be at her base of operations.
[Dorrie's first gift]
[Uncle Jeff's guinea pig came over to have a visit.]
[Dorrie thought Mello was very interesting, and kept trying to touch him.]
[Mello, tired of having his butt smacked, looks for an escape route.]
[Safe!]
[Dorrie takes a rest after the first round of opening presents.]
[Having fun with Uncle Jonathan.]
[Reading a new book with Grammy.]
Posted by mom, under our little witch, tales of interest
6
February
2011
As has been pointed out to me by more than one person, we haven’t updated here in quite a while. Part of this I put down to our terrible internet connection — uploading pictures is a time consuming process — and part of it I put down to the new camera we purchased over the summer (when you have rapid shot picture taking, suddenly instead of a couple dozen pictures, you have a couple hundred to sort through.)
And then, in case another excuse is necessary, I thought Bob was going to make a post. But he didn’t.
At any rate…
We last left Miss D right after Thanksgiving. She was off of oxygen, and was doing quite well on the non-puking front.
The weekend after Thanksgiving, we moved the vent upstairs, and Dorrie started using her room to sleep in instead of sleeping in the living room. She was thrilled with her bed, and she’s continued to be so over the past few months — she’s always happy to go upstairs and get snuggled in, even if she doesn’t always go right to sleep. But sleeping, at least going to sleep, has also improved.
Next up: Christmas. With pictures.
Posted by mom, under moving forward... or not, our little witch
26
November
2010
So, Thanksgiving!
The last couple of years, Thanksgiving has been a somewhat annoying affair, with the meal coming as it does in the middle of Dorrie’s eating period. So the first year, we stayed home so as not to get horribly off schedule, to avoid germ exposure, and for general sanity — I believe I went over to mom’s house for dinner and then she and I both came back here so Bob could eat. Last year we were still in swine flu lockdown after all the drama trying to get Dorrie her shot. So we pretty much did the same thing.
This year Dorrie seems much stronger, is rather more flexible in her food schedule, and is generally more easily portable for us. So we decided to resume a previous tradition, which was to go out to a buffet on Thanksgiving. Pros: no one has to cook, no mess to clean up; Cons: no leftovers. But the Pros are really good ones. We found out about a buffet here in Nashua and made early reservations so we could get in and out without being too crowded.
The plan worked out fantastically. We got in, got our seats, took turns going up to the buffet. One might have wished for a bit more variety in terms of vegetables, and maybe a slightly higher quality cut of beef, but overall it was really good and there was plenty of food.
Uncle Jeff and Uncle Jonathan came too.
Uncle Jeff had plenty of time to text people.
Dorrie chewed on some turkey.
She chewed it up good.
After the meal, the boys headed off to do their own things and Grammy came back with us so we could start shifting things around in the living room. But first we tried to take some pictures of Miss D in her reindeer hat. Unfortunately most of the ones taken with our camera came out kind of blurry for a variety of reasons, so we had to make plans for a second photo shoot at a future date.
Then we did a bit more work on her room, namely pulling all the garbage bags and tape up which were protecting the wainscoting and the carpet while we were painting the mural. In the living room we moved the oxygen tanks out of the way (they’re coming Wed to pick them up), moved Dorrie’s toy bin (aka the pack and play) out of the way, moved some bins of medical supplies out of the way (sensing a theme?) and put up the tree. There were a few concerning moments right after we plugged it in — some of the lights didn’t come on, so we thought we might have to go out and get a new one (it’s a pre-lit fake tree which is about the same age as Miss D. It’s also very low end, so it’s probably in its twilight years.). Fortunately after they warmed up a bit most of the lights did come on, so we deemed it good enough to decorate.
Dorrie was fascinated by the tree when it appeared, and spent a good portion of the afternoon just staring at it. I’m sure she couldn’t fathom why the heck a tree had appeared in her house.
Today the cleanup and decorating continued, with the end result that we got some lights up outside and the living room looks like a disaster area. I hate that a big clean and declutter always starts off by making things way worse than it was!
Posted by mom, under moving forward... or not, our little witch, tales of interest
26
November
2010
Another long delayed update.
First off, as hasn’t been mentioned here, November is Prematurity Awareness Month. I don’t really hold too much with ‘awareness months’, because generally they’re about something that most people are already quite aware of, thank you.
But in this case, aware of doesn’t really mean understanding. So I thought I’d link to the post Eliza Grace’s mom Anne wrote earlier in the month. She does not overstate the situation; if anything, the impact can be far worse than described.
Now, on to less depressing subjects.
Nurses Eleven and Twelve are still with us and things are going good with them. We’re especially pleased to have a reliable competent day nurse (Twelve), as this is quite a novelty for us. In fact, it’s the first time EVER that we have had such a person in the over two years we’ve been home.
The agency had called a couple weeks ago to say they might have found us another nurse to cover one more night a week (a search that has been ongoing for months now). However, this elusive person was supposed to come for a meet and greet a week ago and this did not occur, so I’m assuming they have disappeared again in a puff of smoke.
* * *
At the end of October, we finally decided to take a big step and trial just how long we could go without any supplemental oxygen at all. It appears the answer was idefinitely, as we haven’t had to turn it on again since!
Dorrie had an appointment with Doctor Optimist the day before Thanksgiving, and she issued new orders to the nurses that we need only do spot checks with the pulseox during the day (mom and dad, of course, were long taking it off when it was getting annoying with all the movement-induced beeping). A couple days before that I had spoken to the RT from the vent-supply company, and we both agreed that it’s just silly to have giant tanks of liquid O2 sitting around evaporating just in case we need them, so they’re going to come and take the tanks away. We’ll continue to have pressurized O2 tanks in the house which we can use in an emergency and for long enough that if we needed longer-term O2 back they would have time to arrange a delivery.
* * *
Back at the beginning of the month, my mom’s sister was visiting for the weekend, so Grammy and Auntie Grammy came over and we all went out to lunch. Dorrie was extremely well behaved, and sat contently in her chair while we ate, just looking around at everything in the restaurant.
* * *
Dorrie’s school has been going okay, though November and December are both terrible months, with lots of random holidays and days off. The schedule, as a result, has been thrown into chaos with teachers coming randomly and needing to reschedule at different times. For the most part she hasn’t missed too much, but I’ll be glad when things settle down again.
Her new favorite activity is to draw (with a lot of assistance) with markers on a whiteboard. She gets very excited when she sees the colors appear on the blank white board. I was at work the first time they did it, but apparently she became very upset when they took out the eraser and tried to get her to help them erase the scribbles she had drawn. She’s definitely getting more opinionated about when she’s done and not done with an activity — more than once she’s gotten visibly upset when something she was still interested in playing with is taken away. And she’ll also get upset when she’s left with a toy or activity she’s tired of doing. Unfortunately, she’s still not able to tell us exactly what she wants, so we’re left with presenting her choice after choice until she finally settles on what she’s looking for.
* * *
We finally got her stander adjusted to accommodate her increased height, so she’s been trying to use that again. The stander is more difficult than the chair, since she has to do more work, and it can be harder for the person with her to engage her attention on an activity — a lot of the time all you can do is try to convince her to hold her head up.
Everyone keeps saying she’s improving, lifting her head up more, getting stronger. But there hasn’t really been any significant progress along those lines that I can see. Maybe I’m just waiting for a dramatic change to convince me, but we certainly aren’t there yet.
* * *
After not being able to work on it for pretty much the entire month of September due to everyone being sick, we redoubled our efforts this month to finally finish up the painting project in Dorrie’s bedroom. We really want to get her sleeping upstairs by the end of the month.
The painting project is pretty much finished now; maybe a tiny touch up here and there will be needed, but we’re going to let it sit and we can see what imperfections bother us and which ones we can overlook.
It came out so much better than even I had expected it would, and I knew (as Grammy didn’t) how good of an artist Bob was. He did a fantastic job sketching out the scene and then transferring the outlines to the wall. And an even more excellent job on the detailed areas that I didn’t even want to touch. Once the room is totally done (we’re now in the process of tidying and organizing the medical supplies) I’ll put up a better series of pictures.
Posted by mom, under moving forward... or not, nurse or no nurse, our little witch, schoolhouse rock
2
November
2010
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.
Posted by mom, under little fat fairy, moving forward... or not, our little witch, trying to stay healthy
25
October
2010
I see it’s been more than a month since I posted here. Bad me.
Well, let’s see.
Not too long after I last posted, I came down with a cold. It was an odd sort of cold — I could tell I was getting sick for almost 3 days before it really got awful. We went into our usual sickness mode, where the sick person is isolated from the rest of the house in hopes of sparing everyone else the illness. I spent from Tues night – Saturday morning in our bedroom with only a wee bit of time out (mostly on Thu, when Bob had to go to work to deal with a meeting he couldn’t miss). By Saturday I’d gotten worse and was coming through the other side, so I went back to work and we resumed normal operations, mostly.
By Tuesday, Bob decided he was getting sick in spite of all our precautions. Turnabout was fair play, so he retreated to our room and I took over downstairs. The illness took a slightly different course with him, and seemed to linger longer. And even more unfortunately, it was clear by the end of that week that Dorrie had picked up something as well. We had an appointment up at DHMC on Friday anyway, so we (me and the nurse) took Dorrie up so everyone there could have a look at her. The verdict: her lungs sounded clear, but one ear was possibly red, so we came away with an Rx for amoxicillin which we were to fill only if she seemed to be sick.
Sunday she was really fussy and angry, especially while trying to sleep; even though we had a nurse, I ended up sleeping with her most of the night to keep her calmed down. We called in sick to school on Monday, Tuesday’s teacher tends not to show up half the time anyway (she didn’t this week either) and by Wed she was still a bit subdued but clearly recovering. So while stressful, we were fortunate to get through the cold with just a few nights of poor sleep and four days in a row of pukies. (We put her on reduced feeds for the rest of the week after that.)
Once she was better, we had an amazing run of 17 puke free days!!
As a reward, we’ve started trialling hemp milk and honey as potential new sources of calories.
School is continuing pretty well, though it’s been a rare week when some teacher/therapist or another hasn’t needed to reschedule. We also started private PT again last week, after literally months of trying to get it properly approved. I’m still holding my breath in expectation that someone’s going to send us a bill for it.
And speaking of something that’s taken literally months of wrangling to get finished, the RAMP was finally installed a week and a half ago!! Of course, it’s now the rainy cold season here, so we probably won’t get a whole lot of use out of it until spring, but as long as the idiot snowplow guys don’t break it over the winter, we’re good to go.
(Note: The windows in these pictures are not ours. Unfortunately the configuration of our townhouse means that literally the only logical place to put the thing required it to snake down in front of someone else’s unit.)
On deck for this week: our furnace guys are coming to install the optional humidifier so hopefully the air in our house won’t be so dry this winter. We’ll see if that improves Dorrie’s suctions when she’s off the vent. And maybe my dry skin… but if I had to pick, I’d vote for the former.
Posted by mom, under insurance drama, moving forward... or not, our little witch, schoolhouse rock
18
September
2010
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!
Posted by mom, under moving forward... or not, our little witch, trying to stay healthy
15
September
2010
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.)
Posted by mom, under insurance drama, moving forward... or not, our little witch, tales of interest, trying to stay healthy
