DorrieDorrie

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

H1N1!!!!11!!!1!0

No, by the grace of Miss Piggy, we don’t have it.

Around the middle of October, we started to hear tell of kids in other states getting vaccinated, but no matter who we called in NH, no one ever had any. Then we heard tell from Grammy of non-essential hospital personnel getting it in her area (aka some of her friends — people in the wrong age group and with no patient contact). We started calling potential sources more frequently after that, and eventually, the week of October 19th, we heard that some shots had arrived up north, where our specialists are. But neither they nor we wanted to risk bringing Dorrie to the hospital, and they thought for sure that our ped would have them the next week. Our ped’s office insisted this was not the case, but I thought maybe the hospital might have some insider information no one else was privy to. Reluctantly, I tried to stop myself from trying to plan ways to drive ourselves up there to get the vaccine.

Then, suddenly, everyone changed their mind. Why? Did our incessant badgering finally get results? Did the fact that someone from the hospital actually talked to the nurse at the ped’s office finally make their assertion that they had no vaccine real? I have no idea. But somehow, what had been on Friday ‘wait until the ped’s office get some’ became on Monday ‘the nurse will drive down with a dose and give it to Dorrie on Wed’.

First shot acquired and given, check. I tried to stop thinking about it, figuring that by the time she was due for her second shot, there would be more supply and we could worry about it then.

Sure enough, mid-November, the ped’s office called to tell us that they were finally going to get some vaccine in and did we want any? Hell yes, I said, and noted to the woman on the phone that Dorrie had actually gotten her first dose on 10/28, so if we went by the minimum three weeks in between shots, she could get her second dose on 11/18. And could we just have our home nurse go by the office and pick it up and give it? She left and (I assumed) went to relay all this information to the doctor. She returned to the phone to say this was fine and we could come pick up the shot on Wed morning.

Wed morning rolls around and the nurse heads over to pick up the shot. Except once there, they are happy to hand over the vaccine. But what they won’t do is actually provide her with the order that allows her to give it. Why? Because even though every single piece of vaccination guidance states that the second shot can be given after 21 days, their office policy is 30 days or bust.

The nurse very wisely took the shot (possession is 9/10ths of the law!) and came back to report this latest idiocy. We put the dose in the fridge and began calling people again. But we couldn’t get anyone to sign off on it, so in the fridge the shot remained over the weekend. On Monday we tried calling again and still the ped was being recalcitrant. At this point we were getting irritated — they were saying they wouldn’t even give the order for the next Wed (the day before Thanksgiving), because that was only 28 days and not 30. (Because somehow the terms ‘month’ and ‘four weeks’ became equivalent in their heads.) Because of the holiday, we had no nursing coverage after Wed, so that would essentially mean putting off the shot for nearly a whole extra week.

Fortunately, once again persistence and nagging paid off. More calls on Tuesday eventually produced the desired result. Someone decreed from on high that bending office policy to follow state guidelines might not be the end of the world and we finally got our order to give the dose at 28 days. So now, theoretically, as long as Miss D remains swine flu free for the next couple of weeks, she should be pretty well covered.

We just have to figure out where and when to get Bob and I some vaccine.

Posted: medical morons, our little witch, trying to stay healthy, wtf, people

This Week in Dorrieland0

This week was our first full week with the stander. We’re still working on perfecting how to keep her legs fully supported — the pads that go around the knee are great, but the leg grooves(?) are much larger than her legs are, so the pads don’t actually hold her in place. So far it seems like shoving some rolled up blankets in between the pad and the knee may work to fill up the extra space. More importantly, Dorrie continues to enjoy going in the stander, at least for the first few minutes. Her enthusiasm definitely wanes after that, though she is at least stoic and endures until we take her out.

The PT told us that her stroller/chair had been approved by insurance, so now we’re just waiting for the equipment manufacturer to get it shipped out. Woot! In anticipation, we’ve rearranged our entire living room to better accomodate the increasing amount of large stuff we have to have around. We’ve also had to discard the area carpet we had in there; somehow some pukie did not get cleaned up 100% and began to stink and worse, it looked like it was growing something!! Gross! Bob cut out the spot with the carpet knife, but a hole in the carpet just looked too trashy for words. So we got an el cheapo replacement at Home Depot. Hopefully next year we’ll be in a position to replace these floors. The tile is really hard.

Dorrie has been a very boogeriffic baby the past few weeks, dating back pretty much to the beginning of May, when she had an ear infection. Then both mom and dad got sick, and Dorrie seemed to have a lingering ick herself. A couple of weeks ago her eye suddenly got very gooey, so we were alloted some drops by the ped. The goo did not completely go away and then suddenly it was coming out everywhere — her ear, her nose, her suctions. (Gross again). We started another course of eye drops and somehow it seems to be helping everything, so I’m hoping we’re finally seeing the last of this ick. Now if only daddy’s cough would go away.

Dorrie has made some significant progress with her arms in the past month. She is much more able now to direct her arms to where she wants them to be so that her hands make contact with desired objects and people. It’s clear it still takes her a lot of effort and concentration to do it, but the movements are much more deliberate. She’s enjoying a toy a brought back from IKEA — one of those things with looped wires holding wooden beads to move back and forth. Trying to get her hands and fingers on the beads is very good practice.

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

Sick and Tired1

I am not sure that people fully understand how tightly scheduled our days are. Basically, our nursing agency has a real shortage of vent/trach certified RNs who are willing to do overnights. Probably because they do not pay as much as a hospital would nor do they offer benefits, but that is another discussion. All other nights we have to watch Dorrie ourselves.  Over time her sleeping has improved, but she is still not a sound sleeper and she often needs suctioning during the night, not to mention food and medicine.  So whoever is watching her does not get the opportunity for good sleep.  Sometimes not any sleep.

A typical day looks like this:

7AM – morning meds
8AM – set up pump with some water
9AM – Dorrie wakes up, water finishes, switch oxygen monitor to other foot, clean her up, give inhalers
9AM-12PM – play with Dorrie, do leg and arm stretches, have her sit in her chair, work on hand and head control. If therapy is coming it’s usually during this time.
12PM – hook Dorrie up to pump for lunch
12:30PM – lunch finishes, disconnect pump
2PM – hook Dorrie up to pump for mid-afternoon snack
2:30PM – snack finishes, disconnect pump, throw away bag, hopefully time for a nap (Dorrie’s)
3:30PM – med
4:30PM – more food
5:00PM – more food done, clean bag
5:15PM – dad gets home from work
5:30PM – dad takes over watching/playing with Dorrie while mom makes dinner
6:00PM – start pushing 2oz water
6:30PM – mom and dad eat dinner while keeping Dorrie entertained
7:00PM – start getting everyone ready for bed. Dorrie’s bath, clothing changed, trach ties changed + neck washed, med due, get Dorrie’s bed out and set up
8:00PM – more food, dad goes to bed
8:00PM – 11:00PM – depending on her nap and mood, Dorrie goes to sleep at some point in here.
11:00PM – meds, wash food bag
12:00AM – start overnight feed
2:15AM – dad gets up, mom and dad change over
2:30AM – mom goes to bed
3:00AM – add med to feed
Add in there suctions on average every 15m during the day and once an hour at night, plus intermittant gas attacks once she’s gone to sleep. She finds farts amusing during the day but at night it’s the end of the world.

Basically, the choice was: we can both sleep in the same room with her and both be up and down all night, or we can split the night up and both of us get possibly less sleep, but uninterrupted. We went for the latter. However, as a result any little thing can throw our schedule off.

Last weekend was super busy. Not for Dorrie, but for mom and dad. Mostly mom. The end result of dashing around, getting 4 hours of sleep on Sunday and then working for 9 hours was that on Tuesday I got sick. A cold that had been nibbling at the edges of my stamina for quite a while finally got a foothold and that was it.

One of us being sick is no picnic, because we try to isolate Dorrie from the ill person. Since our day nurse had taken Wednesday off, that meant dad had to take the day off from work. He would have had to anyway, I think, because I was in no shape to look after her.  But he did this after already having had to spend the whole night looking after her, which is an impressive feat of stamina. Grammy was nice enough to come over on Wednesday night and stay all day Thursday so dad could go to work and mom didn’t have to contaminate Miss D. She came back on Friday to do the same during the day there.

So I have been sick and miserable and guilty for being sick and miserable. Dad has been harried and worried about missing work. And any time something like this happens I wonder how much longer we can keep this up. It’s wearing. I’ve spent less than 200 minutes alone with my husband since January 2008 and the longest stretch of that was about 100 minutes on New Year’s 2009 when we went in the basement and watched a movie together while we had a night nurse.

The problem is that the nurses we have had recently are just not that great. Our current night nurse is an older woman and she moves very slowly. She knows what to do, but I have no confidence that she is actually capable of taking physical action quickly in an emergency. So dad will continue to sleep on the sofa on nights when she is here, just in case. And our day nurse, who I have complained about before, is just not a calm person. I do not trust her not to lose her head. She is too easily flustered in non-emergency situations for me to feel comfortable without having seen her deal with something important.

On top of that, it’s just so discouraging that Dorrie hasn’t made more progress. She is still not sitting up, and worse, she still has not really gotten the whole head control thing mastered. Tests have been done and there is so far nothing anyone can really point to to say that this is why she’s so far behind, and why she hasn’t made any strides at all toward catching up. As we move further away from the month she spent in the sedative coma, it’s harder to think that is the root cause.

Posted: moving forward... or not, nurse or no nurse, our little witch, trying to stay healthy

Quiet4

It’s been quite a while since an update. I was hoping that perhaps Bob would write one, but he’s been pretty busy.

For me, we’re in a part of the year that has a lot of very bad anniversaries for us. The first time Dorrie stopped breathing at home, the helicopter ride, the second time, the cold she got, the month she spent sedated in the PICU, getting the trach… none of these are things I want to remember, but of course, it’s impossible not to.

Alexa and Anne have recently made some posts that touch on the same subject. With Dorrie still on the vent, it’s hard not to (and perhaps appropriate to) feel that we’re still in a very precarious position, healthwise. She’s really only been sick sick 4 times in her life, but 3 of those times she nearly died. So we scrutinize all of her secretions, watch the sat monitor, watch her breathing, feel her forehead, and obsess about whether or not she’s coming down with something. I tense up when I hear the nurse cough in our house, wondering whether she is sick and has now spread germs to Dorrie that are going to kill her.

The 13th was the anniversary of Dorrie’s first visit home after being discharged from the ICN, and on the 3rd or 4th, she had officially been home for more days than she was in the hospital. As of the 17th, she is 18 months old.

But something in me hesitates to write about good things like that because I’m afraid to jinx it by talking about it. Once we get through March, I’m hoping I’ll be able to relax a little bit more.

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

Updates0

I’ll try to get some pictures up in the next few days, as it’s been a while since we’ve had any of those.

As far as updates go, the second half of November was pretty busy, but stable from a health point of view. Dorrie got to meet her grandpa for the first time, along with his friend, and we had a nice little visit. It had been quite a long time since Bob had seen any of his family, since they live out in the midwest.

We’d also been scheduled to go back up to the hospital for an appointment the day before Thanksgiving, but based on what we knew, we were dubious that this appointment would be worth the 6 hours of overhead involved in getting us and Dorrie up there. It just took us 2 months of periodic requests to finally get the specialist involved to confirm that the appointment was useless — he still can’t do the test he wants to do because of one of the medications Dorrie is on.

So that was a relief. The last thing I want to be doing during cold and flu season is taking her out. I can’t help remembering that it was 2 days after her Synagis shot last February that she came down with the cold that eventually landed us in PICU for 65 days. I’d like to avoid a repeat performance.

Dr. Optimist and her nurse have come around to our way of thinking, because though they had originally (in August or Sept) said that we would have to come to the office for our visits over the winter, they changed their minds and today made another home visit. Dorrie objected mightily to the shots and screamed for quite a while after. But at least her exposure to exotic germs was kept to a minimum.

We finally also have a second nurse again. Our original nurse from back in February had some availability again and so she’s now coming on Monday and Wed during the day. I’m still getting used to her; we’d only had her for 3 weeks before Dorrie got sick, so I didn’t really know her all that well to begin with. My major peeve right now is that she speaks too softly. Now this might normally be a plus when dealing with babies, but Dorrie’s hearing disorder makes it difficult for her to distinguish what noises she should be listening to and what are background noise. So we try to speak loudly and slowly to her to give her some assistance.

Posted: hospital crack, moving forward... or not, our little witch, trying to stay healthy

One For All2

Today is the last of Dorrie’s due dates, so there is no question over whether or not she’s one now.

She’s feeling a bit under the weather today, I think, but it’s hard to know exactly why. On Friday, we went up to the hospital so she could get new ear tubes placed for the winter. She also got an MRI, mostly to look at her ears, but Dr. Optimist figured if she was going in for that we may as well look at everything. And on top of that she also got her flu shot and her first round of Synagis.

The appointments were all rather late in the day, so we were worried that we were going to have to spend the night. I admit, I was freaking out about it; because of her respiratory status, she automatically goes to PICU where there’s a respiratory therapist always on the floor. Even though we’d been home from there for six months, I still feel myself tense up when I think about going back.

Fortunately, our visit to PICU was short. She was brought back still out from the sedative, but it was short acting and she had no anesthesia hangover like she’s had in the past. After a couple hours, Bob and I felt comfortable packing her up and heading home. We didn’t get home until about 10pm but I was so relieved to not have to spend the night at the hospital that I didn’t care. Our usual paranoid precautions ensued: Dorrie got a bath, we changed her ventilator circuit, and then both of us took showers too. No hospital germs can dare linger here!

It was midnight before we got to bed, but it wasn’t a bad night all the same.

Posted: hospital crack, moving forward... or not, our little witch, trying to stay healthy

Changes0

As a followup to Bob’s post, we have now had two trach changes done by us since the bad one. Both have gone considerably more smoothly and we’re hoping that we won’t have any further problems.

I think the main problem was that neither of us was sure why we were encountering so much resistance when we tried to put the trach in, and now that we know what it is, we’re no longer so afraid to apply any pressure.

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

Busy Day1

Dorrie had a busy day on Friday. We had our follow up appointment with the cardiologist we saw while we were in the PICU. For those who don’t remember, there was a suspicion back then that she had developed pulmonary hypertension due to her lung disease, and this had seemed confirmed by two echocardiagrams which showed increased pulmonary artery pressures.

Luckily, the cardiac cath back in March failed to confirm any such diagnosis, and Dorrie was released from the PICU on captopril (a blood pressure med) to help improve her heart muscle, which -did- show some signs of stiffness (hypertrophy).

Friday she had an echo to see how her heart was looking now, 6 months later, and it all looks good! Pressures appeared to be normal and there was nothing alarming revealed. We’re going to remain on the captopril for now, especially as we go into cold and flu season, as this will hopefully help to keep her inevitable illnesses slightly less severe.

Dorrie was quite tired all day, unusually falling asleep in the office waiting room, and then again in her car seat on the ride home. This may be explained by the fact that tooth #2 has joined its neighbor. She’s been a little fussy off and on for most of the weekend, so that may not be the last tooth we see.

The day before, Dr. Optimist came to the house for a visit and we were finally able to wean her vent settings! Her PS above PEEP is now 7, down from… 8. Not much of a step, but at least it is one.

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

14 months0

Miss Dorrie will be 14 months old tomorrow.  I notice I haven’t put up any pictures for a couple months; I’ll try to rectify that. But as my mom said, pictures of a baby in her diaper all tend to look kind of the same. It’s the clothes that help you differentiate between when they were taken.  Fortunately, we’re moving back in to the time of year where having her dressed isn’t going to make her miserable. This is the ONLY good thing about the approach of winter, because otherwise I am absolutely terrified and will be until next April.

Though still far behind where she ought to be at 10.5 months, her motor skills are showing improvement: now, instead of allowing toys to fall immediately from her fingers, she will instead fling them up at her face and smack herself in the nose.  Since this fails to achieve her desired goal (toy in the mouth), she will repeat the process, banging her nose over and over again until she finally drops the toy. She’s stubborn.

She’s still an amazingly happy baby, sometimes even when she hasn’t had enough sleep, and always when she has. She laughs and smiles and would, I am sure, be shrieking happily if she didn’t have that trach in to block her voice. Unfortunately we only ever get to hear her voice when she’s upset — mostly when we change the trach, but also when she’s just so annoyed that she can shove some air up past the cuff. When you’re sitting on the floor with her, even with all the noise in the room from the O2 concentrator and the vent, you can hear her if she starts to cry. It’s a sort of crackly noise.

Her head control is still an area of big difficulty. The tubes are really keeping her back; her legs and lower abdomen are getting very strong.  On her tummy, she can lift her legs way up into the air, getting them and her pelvis clear of the floor. But because of the tubes she likes to put her arm straight out to the side, so she doesn’t think about using it to help push her head up.

Friday she has her follow up visit with the cardiologist. I’m hoping everything looks normal again and maybe we can get rid of a med. Her O2 saturation has been pretty stable, so if that’s any indication, the news ought to be okay.

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