DorrieDorrie

Three3

Three year old stats:
Weight: 12.86kg
Height: 35″
Head: 51.5cm

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.

Posted: little fat fairy, moving forward... or not, our little witch, tales of interest

Medical Update0

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.

Amazing.

Posted: little fat fairy, moving forward... or not, our little witch, trying to stay healthy

This and That5

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

Food3

This morning the person from the ‘feeding team’ came down to visit again finally. She hadn’t been since last May, when she unfortunately visited right in the middle of a period of intense retching, gagging and throwing up while Dorrie was recovering from a course of antibiotics.

Of course, this time Dorrie slept through her whole visit and we all just sat and talked. However, Miss D is in a better place in terms of eating and it’s probably time to get that ball rolling again however slowly.

As chronicled before, but perhaps not mentioned very lately, we started introducing real food into Dorrie’s tube feedings at the beginning of last July. We went very slowly introducing new foods, giving her about 3 weeks in between to let her body adjust to something other than formula for the first time in a long time. As we introduced new foods we continued to feed her the old ones, which meant that for quite a while she was getting the exact same real food every day — a big contributor to her orange tinged skin. But now, finally, we are getting to the point where she has enough foods that we can mix it up.

More importantly, she has started tolerating much larger volumes (8oz at once without throwing up!) and this means that the real food feeds (still using Neocate as a base) can be made to contain enough calories that we’ve been able to cut back on her overnight food. And finally, last week, we took the plunge. No more overnight feedings!!

We’re still working to introduce additional foods (we need some more fats in particular), but so far so good. This month has been pukier than December or January, but not alarmingly so — she seems to be tolerating the change pretty well. Whether or not we have the calorie mix right is another question, because we’ve had trouble getting accurate weights at home. She seems skinnier to me, but it also may be because she’s lengthening out.

Posted: little fat fairy, moving forward... or not, our little witch

2009 in Review1

Last year for Christmas presents, I made a little book of 2008 with some text summarizing each month and lots of pictures. I made the same thing again this year, and now that nearly everyone has seen their copy (just one left to send out), I’m free to recycle the text in a lovely year in review post!

(For the interested, here’s a page that shows a preview of the books from 2008 and 2009. Ignore the bits about what to buy and just click on the ‘preview book’.).

January 2009
The year began with not a bang, but at least something nice: Dorrie had officially been home more days than in the hospital.

The rest of January was fairly quiet. Nursing coverage was stable and everyone remained well. Dorrie was teething quite a bit and her face was pretty chapped from all the drool that she kept getting all over her chin and cheeks.

She had started to show more interest in her toys, finally, at nearly 18 months actual. There was still not much effort to play with them beyond getting them to her mouth (and that was pretty hit or miss) but she knew they were there and that she wanted to eat them.

This month also saw Dorrie’s first real encounter with snow. I put some in a bowl and brought it inside to show her. She was highly suspicious at first, but curiousity got the better of her and her hand drifted toward it. Much to her dismay, it was extremely unpleasant to touch and worse, it stuck to her fingers making them cold!

February 2009
Dorrie’s interest in her toys continued to develop this month, as she suddenly discovered the joys of mobility. Still unable to sit or stand or crawl, she found it was possible to push herself around on her back. It was slow going, but it allowed her to see her small world from a new perspective and chase down toys which had gone out of reach.

We found this out one day before her bath, when we gave her a Christmas toy we’d held back — a Fisher-Price Little People airplane. Given her fear of large toys in the past, we were worried that she would not enjoy having this one. But I also thought she might like to bite the people, so we brought it out and stood the people nearby. The plane we put a safe couple of feet away. But she spotted that plane and lunged for it, taking us all by surprise.

She also started to show some interest in books, as we began to read more of them to her. It still wasn’t clear just how much she was understanding, but she definitely enjoyed the experience of listening, looking at the pictures, and being given attention by whoever was reading. She also enjoyed ‘reading’ on her own.

And, most exciting of all, she suddenly learned how to hug.

March 2009
March blew in with woes amongst Dorrie’s staff. Her overnight and sometimes day nurse had a family emergency and had to stop working most abruptly. It took us nearly a whole month before the agency was able to dig us up a new night nurse.

Otherwise, the month itself was was pretty average. Dorrie had her sleeping issues, which were compounded for us by the lack of night nursing. Toward the end of the month, she finally started to wean the PEEP on her CPAP — one tiny step closer to getting off the vent.

April 2009
April was another healthy month. Easter was uneventful, and Dorrie was in a mood to perform, so spent the day lifting her head up and scooting around on her back. She was also introduced to a new friend: Ducken.

While we all soon got tired of hearing him sing his chicken dance song, she found him endlessly entertaining. The only problem was that his activation button was too difficult for her to press on her own, so we had to keep pressing it to make him go.

Toward the end of the month, Grammy finally got one of her fondest wishes and was able, with daddy’s assistance, to take Dorrie for a walk in her stroller. The two of them packed everything up and rolled out, making their way down to the mailboxes and back. A few days later, we also dragged Dorrie and all her stuff closer to the sliding glass doors so she could see outside. Neither time was she especially enamored of the sun, though she did not find it as fearsome a foe as the dreaded SNOW.

At the end of the month, Dorrie celebrated an entire year home from the hospital.

May 2009
The month of May was a sickly one around here. Dorrie got an ear infection at the beginning of the month, and then mom got sick in the latter half of the month, followed by dad. Dorrie didn’t entirely escape either, and was placed on antibiotics.

Because of all the illness, there wasn’t too much else going on. Dorrie held steady and got through her infections with no major setbacks, and that was all we could hope for.

We were able to place some orders for new equipment for Dorrie this month, to give her more options for sitting and being supported in new positions. She also continued to show an interest in watching mom and dad eat and drink, especially in our cups. But this didn’t translate to wanting actual food or liquid for herself.

June 2009
The first bit of new equipment arrived in June: the stander. This is just what it sounds like, a contraption that allows Dorrie to stand up straight. She’s held in with straps and padding and has a tray upon which she can have toys while she’s busy standing up.

She also continued to outgrow her orange Tumbleforms chair which we had borrowed from the OT. But the new seat we had ordered did not arrive this month, and so we had to keep squashing her into the small one.

Due to the antibiotics in May, June was a retchy, pukey month compared to others. We made little progress on the nutrition front at all. A couple of small steps were made on the respiratory front, however, and by the end of the month, Dorrie was on a PEEP of 5, which is about as low as the vent can handle.

July 2009
Dorrie did a lot of standing in July, working on keeping her head up and getting used to the sensation of having a bit of weight on her legs. It soon became clear that with the assistance of her arms, she was actually quite good at keeping her head from flopping forward. Her endurance improved rapidly and soon she could spend an hour or so in the stander.

Her digestion also returned to normal, and so at the beginning of July she began to get some pureed food through her tube instead of formula. She started with prunes, and when those were a success, we added carrots and pears. She also started using her mesh feeder a little more frequently, after she figured out how to start scraping bits of carrot off of a larger chunk. The feeder kept the scraped bits from making her gag. She was also more agreeable to tasting other foods, as long as she didn’t have much to swallow.

She proved she had made some additional progress when, as the weather got hotter, she was able to endure her clothing. The cold mats and ice packs remained retired and naked baby did not return.

Dorrie spent her second birthday with daddy and grammy, because mom had to be out of town. She was forced to endure many forms of torture, including ink on her hands and ice cream on a spoon. Going down a slide also proved to be traumatic.

The next week, Dorrie received some sparkly purple hearing aids. When they’re first turned on, they play a little tune, and she found the sound of it hilarious.

August 2009
In spite of our intentions, Dorrie, since she lives right in front of the tv, sees a lot more of it than we would like. She began to get into Sesame Street over the summer, though it had always bored her before. She’s also a fan of anime, particularly “Tennis no Oujisama” (The Prince of Tennis).

We were able to add additional foods to Dorrie’s schedule during the month of August, as green beans, pears and turkey were proved tolerable. The introduction was going slower than we had hoped, but she was tolerating the real foods wonderfully.

Dorrie’s chair finally got to the equipment company at the end of July, but we weren’t able to get it adjusted and here until the second half of August. But what made this arrival even more exciting was the fact that we were finally able to get Dorrie off the vent for small periods of time each day. She was still attached to oxygen (along with her sat monitor and suction), but no more vent! We began with 30 minutes, then quickly went up to an hour. Things were astoundingly quiet in the house with the vent turned off.

September 2009
Now that Dorrie was finally spending some time off the vent and the weather was still good, it was time for a road trip. My grandmother, Dorrie’s only still living great-grandparent, had never yet been able to see her. So when mom’s work plans fell through on Friday when dad had already taken the day off, we decided it was time to go visit.

Grammy came with us, as an extra driver, Dorrie wrangler, and because her car was larger and more comfortable. We set out around 10am and drove to Clifton Park through several surprisingly violent rain showers. Dorrie was an extremely well-behaved little girl. We brought her new chair with us (great-grammy’s house has a wheelchair ramp) and were able to leave the vent in the car while we went inside. The cats were out of the way and we all gathered in the bright front room of the house.

Dorrie wasn’t entirely sure what to make of her great-grammy, but she seemed more curious than scared or upset. She got held, she played on the floor a bit, and then it was time for us to go again. We piled everyone and everything back in the car and then drove back to NH. It was a really long day, but it went as well as possible.

October 2009
The swine flu was in full swing by October, and vaccine was still nowhere to be found. We were on high alert for illnesses all month long, but fortunately they were avoided by us — the nurses weren’t so lucky and both were down for the count.

Dorrie finally tried out the swing, companion to the evil slide. The swing was less traumatizing, and she tolerated it for some time before she was taken out.

She also got another new chair, a bumbo-esque chair meant for older children. It has a high back and arms, which gives her a bit of support and helps her to sit in it with minimal assistance. It’s much easier to get her in and out of than the full blown rolling chair, though it’s probably not nearly as comfortable.

Dorrie began to get more and more opinionated over the fall, preferring certain books over others, certain tv shows over others, and wanting everything just right. One of the things she decided was just right was dad singing her to sleep. Mom, not so much, though she did find it amusing to listen to the alphabet song.

November 2009
In November, Dorrie’s sleeping schedule deteriorated to new levels of inconvenience. After growing more and more difficult to coax to sleep every night, both she and mom decided independently that they weren’t going to deal with that together any longer. Dorrie started staying up until it was daddy’s turn to get up, reinforcing his identity as Sleepy Guy.

But a girl who stays up until 2am can hardly be expected to wake with the dawn, and so Dorrie began to learn the joys of sleeping until noon. Since the morning was previously her time of greatest activity (due to it also being her time of empty stomach), this started to cause problems. Her use of her stander and her chair plummeted during this month, as she would wake up just in time to eat her lunch. Several times she had to be woken up to participate in PT or OT.

The introduction of real food continued, and in November Dorrie added sweet potatoes, apples and corn to her diet. The RD finally arranged a visit, and we started to come up with a plan to eliminate the nighttime feedings.

Dorrie was increased to 6 hours a day of time off the vent, which she took in stride. She also finally received her first cuffless trach, and so every other week was suddenly much more able to find her voice.

After some more ridiculous vaccine drama, the month ended with Thanksgiving and the return of the Christmas tree to Dorrie’s living room.

December 2009
December started off very well: Dorrie officially rolled over for the first time, from back to front. She had managed to flip herself quite a few times, but this time was different because it was very clear that it was deliberate. She pushed herself up onto her side, and investigation revealed that she was looking quite pleased with herself. So after making sure none of her tubes were going to get pulled, she was let to do what she wanted. Slowly, she eased over the rest of the way to her stomach. And then, the clincher, she struggled until she pulled her trapped arm free so she was fully flat.

It also seemed to us that she was beginning to understand some of the signs we’d been working on with her. After many months, she seemingly understood the sign for ‘book’ and for ‘all done’.

The rest of the month was quiet. Quieter than we’d hoped, actually, as we’d been anticipating a visit from Grandpa and Uncle Steve that had to be postponed due to illness in WI.

Dorrie was increased to a total of 8 hours off the vent each day.

As can be seen in the pictures from this month, Dorrie’s diet, heavy on orange veg, started to lend a distinct hue to her skin which became very visible around Thanksgiving and after.

Posted: little fat fairy, moving forward... or not, our little witch, trying to stay healthy

Little Sweet Potato2

Since July, we have slowly been transitioning real foods in to Dorrie’s diet. Two of those, carrots and sweet potatoes, are orange. And since we started using the large jars of sweet potatoes (6oz) a bit before Thanksgiving, she has been turning into one herself! Her hands and feet are getting orange now along with her little nose.

As we can only introduce new foods at a slow rate, it’s still going to be a little while before we can really back off on them to enough of an extent that she’ll lose her carroty hue.

Posted: little fat fairy, our little witch

Pretty Lies2

MICE (developmental services for visually and/or hearing impaired children) came for their monthly visit on Friday. OT and PT managed to come then too and we discussed how difficult it is to sign to Dorrie while we’re using our hands for other things (supporting her arms, holding her up, etc.) While everyone agreed on the necessity of being consistent in presenting visual language to her, I don’t think any real ideas were proposed to make it easier to do.

She continues to make small improvements in her hand control, her ability to scoot around on her back, and the effort she expends to hold her head up with proper support elsewhere. But she’s still not anywhere near being able to provide the head control she needs to even safely prop sit or be carried with one arm. It’s very discouraging. It’s easy to see how much easier life would be if she could just capture this one skill. I’m left wondering where we would be if we hadn’t had the major crisis that we did back in Feb-April 08. Was she really making progress on head control before that? She was still so young then, it hadn’t entered our heads to worry about it, and we had no reason to believe it would be a problem. Looking at pictures, she appears better off than she is now, but pictures lie so easily. I had her wrapped in a towel the other night and by arranging it just so I could hide all the tubes and wires. Caught at the right moment, the right angle, everything looks normal.

I like the way they’re both looking to the same side in this picture, and the fact that you can see Dorrie’s neck. It’s an illusion — she’s leaning back over daddy’s arm — but it’s what she probably would look like most of the time if things had worked out differently.

Here’s one of the out-takes from her visit with great-grandma. SMACK.

We got her the slide and swing for her birthday, and yet after her traumatic introduction to the slide, we hadn’t really used it at all. Trying the swing out went a little better. She fit well, but the pictures are a bit deceptive: we had to push it forward a smidge, giving it just enough tilt to have gravity assist her in keeping her head up.

What’s daddy doing back there?

Something is very wrong with you people.

Dorrie’s newest favorite hobby is to watch her sat monitor. She’s especially amused when it alarms or stops reading. I’m not entirely sure she’s connected the fact that this often happens when she bangs her foot on the floor, but she does it enough regardless.

She’s also interested in all the tubes and wires that constantly surround her. This day was unusual, because she didn’t get upset when she moved off of her mat and the carpet and onto the tiles. Most of the time she finds them too cold to stay on them for an extended period.

She’s been working on a new face.

Sadly, she’s pretty much outgrown her SnugRide 32, forcing us to move to the next level of car-seat and abandon the infant carriers we’ve been using for the past two years. Her new MyRide looks incredibly comfortable; everyone who’s seen it has wanted to sit in it. She approves.

Beautiful.

Posted: little fat fairy, moving forward... or not, our little witch

Busy Busy0

Almost nothing at all happened the week before last. I’m not sure if I even got many new pictures to add. There was no word on the stroller, there was no advance on the trach collar, there wasn’t even any PT, since she was on vacation.

This week we finally got the ball rolling on several fronts.

Stroller
This has been an endless source of frustration for us. The stander was delivered to the equipment company in May and we got it in June. It’s now been 2 months since we got that. 2 months since we heard the stroller was approved. So this week we started harassing everyone: we called the equipment company, we called the PT, and finally we’re told it’ll be delivered on Monday. I’ll believe it when I see it, but at least we have a promise of action. I hope it’s as nice as I remember!

Trach Collar
After the fiasco a couple of weeks ago, the head RT came to our house and brought some additional materials and showed me how to set up the mask in a more reasonable fashion. Finally, last Wed, he and Dr. Optimist’s nurse came to the house and we were able to try it out. Dorrie was much calmer this time without the Moron Twins messing around with her ventilator and she handled it very well. She sat in my lap and kept an eye on the people in her living room while we had the mask on her. After we’d had that on for about 30 minutes, we switched her to a simple HME with oxygen attachment, and we were finally at the point where I wanted to be. Oh, it was lovely to have her attached to just a tank with a nice light tube.

We also got a chance to see how she would do just on room air — switching to the trach mask entails a near complete disassembly of the ventilator circuit, because we use the same humidifier. So we tried just pulling her off and letting her sit while the RT put it all together. She did great! I was nervous because the only other time she’s off oxygen during the week is for her trach change and she always drops like a stone. But apparently that has much more to do with the fact that she hates trach change and screams bloody murder when she realizes that’s what’s about to happen than it has to do with being disconnected from the oxygen source.

Our biggest problem with the collar (either way to do it) is suctioning. I don’t know what other babies are like, but when Dorrie is awake and active, she can need suctioning as often as every 5 minutes. This is generally fine because we have suction in line with our vent circuit — it’s never detached from her and remains as ‘clean’ as the rest of the circuit’s interior. The trach mask just has a hole where you can thread a catheter in and suction directly. The HME has a little flippy door where you can do the same. The question is what to do with that catheter when you’re not using it. If she only needed it every 30 minutes or so it’d be one thing, but it seemed like we were always pulling it out, and I get more and more tense because it just feels so dirty. Plus it is a huge pain in the butt!

So I think what we’re going to do is leave the inline suction on and attach the HME to the elbow of that. Hopefully it’ll work, because otherwise I think mummy is going to have a breakdown over the suctioning. We’ll have to figure out what to do with the suction when she’s on trach mask at another time. For now we don’t intend to use that much — disassembling the vent circuit while we’re by ourselves and trying to keep track of her is really not a great option.

It’s probably an even worse idea when we’re not alone and there with the nurse. I’m not going to get into too many details but suffice it to say she got very flustered on Wed and when the RT told her to reassemble the vent circuit after we finished with the trach mask it almost proved too much. She spent the rest of the day in a fog.

Dorrie with one of her preemie outfits.

She loves her tennis boys.

Posted: little fat fairy, moving forward... or not, nurse or no nurse, our little witch

Almost Two2

It’s hard to believe that it’s been two years since Miss D decided to join us on her own schedule. Like January/February, this is not a time of pleasant memories, and even at the best of moments I feel uneasy as we approach any “important” dates. I’ll be happier when we’re past it.

There’s not all that much of note to report this week, as we worked on getting back to our normal schedule following the long weekend. Dorrie continued to do very well with her prune food, and so we have now begun adding carrots to a different meal. If we can successfully introduce enough foods, we’ll be able to perhaps cut down on the amount of formula with the ultimate goal being to stop the overnight feeds altogether. I’m very hopeful that if we can manage this, it will lead to a big improvement in her sleeping.

We had some success during the week with getting her to take decent naps during the daytime, though this did not continue over the weekend, so I’m not sure what to think there.

We’re still waiting on word of the new chair/stroller arriving; I’m getting very impatient now. The stander is great, of course, but I see how well that fits her and I feel bad when we have to squash her into that tiny Tumbleform chair to sit.

Dorrie also received her birthday present from Grammy and Uncle Jonathan, which is a Little Tikes swing and slide. This is something which I had seen a picture of on another blog, and I thought it would be great for Dorrie. Both of the toys do not really require her to do much, so she can use them now with our help and hopefully play with them on her own some time in the future. So far, though, she is absolutely terrified of it and has added a new expression to her repertoire in its honor.

I don’t like this

HELP ME

And just to prove we don’t torture her all the time.

Posted: little fat fairy, moving forward... or not, our little witch

Week 1020

This week saw Dorrie progressing more with her stander. The PT put some foam blocks on the tray so that it’s easier for her to keep her arms from falling back, and now she finds it easy to keep her hands where she can use them.  Her goals so far seem limited to getting things close enough to gnaw on them, but hopefully they may expand over time.

The gnawing on everything continues — our hopes for a break in teething were dashed at the beginning of the week when it was discovered that tooth #16 was not canine #4 but rather 2-year molar #1.   There are bumps elsewhere (including that last canine) so probably some more teeth will make their way out over the next few weeks.

Now that we seem finally to all be well again (aside from daddy’s continued coughing) we’ve changed up Dorrie’s diet slightly. We hope eventually to be able to stop using the formula we’ve been on for the past year — Neocate — and let her eat real food.  Ideally through the mouth, but the fact is that this is not going to be happening very soon, so for now we’ll need to blend it up so it can go through her tube.  The trick is to figure out what real foods she can tolerate and then craft a nutritious diet from them that won’t drive us mad trying to make it.  We’ve started simple, and this week she is getting 2.5oz of baby food prunes in one of her feedings every day.  If that doesn’t cause any digestive distress, we’ll try introducing something else in a week or two.

She also gnawed on some carrot in a mesh feeder bag.  She didn’t seem to mind it, though probably we’ll hold off on doing that regularly while we’re attempting to experiment with introducing significant quantities of other foods.

Bonus Pictures — Miss Tubbo at this time last year.  Seeing her every day, it really seems like she hasn’t changed much at all. A bit leaner, of course, but just so it’s noticeable. Until you look at pictures and you realize holy crap.

Posted: little fat fairy, moving forward... or not, our little witch