big day tomorrow

billy and I have taken off work tomorrow so we can hit the road nice and early to take rowan to philadelphia for four doctor's appointments at CHOP (children's hospital of philadelphia). basically we will be in doctor's offices from 9AM until about 3PM getting Rowan evaluated by four different specialties (GI, ENT, pulmonology, and anesthesia) to see what needs to happen next to get his trach out. we may not come back with many answers, as a lot will depend on what they see during his bronchoscopy, which isn't scheduled until May. but i'm sure tomorrow will be a long day for all of us, especially the little guy, so happy thoughts, prayers, and warm fuzzy feelings are much appreciated!!!

jolene - my gay banjo

up again up again

i'm burning the midnight oil again with the little guy. i'll be up until at least 5AM, so i figured i could take some time to do an update. i am sitting at the dining room table with all my quilt supplies out while Rowan sleeps in the living room...on the vent..unfortunately. we are still dealing with the aftermath of "the plague" (formally named human metapneumovirus) that hit our house a few weeks ago. we have been able to take Rowan off the vent while he is awake, and start giving him some food (which he will only eat if bribed, of course). but he's still getting tachypneic (breathing fast) and restless at sleepy-time, so we've been putting him back on the vent at nap and nighttime in hopes of a full recovery soon. the pulmonologist said that this particular virus that Rowan has is one that tends to "linger" for several weeks, so we're not really sure how long we will be dealing with the vent. it's a bit of a grey area to know when to put him on it, and when not to. the responsibility we have in our hands for this little guy as his family is amazing. i'll just say this: i'm an educated, licensed, registered nurse and if i made these kinds of medical decisions for my patients at work i would be in some deep trouble...TOTALLY out of my scope of practice. but at home, with my own kid, I am the one responsible for these decisions. feels strange to me. but whatever, we will give him the help while he seems to need it.

in other news, we are planning a trip to Children's Hospital of Philadelphia (i.e. CHOP) in April to meet with four different specialists there in an effort to determine how to best fix Rowan's airway issues so that he can eventually get his trach removed. I am still holding out hope that we can get it taken out this spring/summer despite the new diagnosis of subglottic stenosis, and this nasty virus we are still fighting. we will see what they have to say about it in the big city. I feel confident that the folks at CHOP are the best around for managing this type of thing, and feel fortunate to have them close enough to do day trips. right now we are working on scheduling four appointments in April (ENT, pulmonology, GI, and anesthesia), and then a scope (a procedure where they can look at his airway again) in early May.

well, that's all I can think of to tell you. so now it's on to quilting for the rest of the night! I might complain about lack of night shift nurses in our house, and therefore, lack of sleep for mom. but I am happy to have such an engrossing hobby to pass away the wee morning hours! you can see what I've been up to on my other blog here.

night-night!

the plague

well, we finally caught our fair share of the winter "blahs," and around here they are not to be taken lightly. what started with a headache, sore throat, and cough in my stepson continued on to my husband being laid up in bed with fever and not eating or drinking for a few days. after that madness ensued, I found myself pulling out oxygen tanks and supplies from the medical supply closet that I haven't needed to use for over a year for my son Rowan. but it didn't stop there. a few days later, after returning home from a dentist appointment to find him looking listless and tired but unable to sleep due to the work he was having to do just to breathe, I found myself setting up his ventilator (breathing machine) that has been in the closet for the past 4 months. let me tell you, that is NOT a good feeling. there were definitely some of mama's tears on those vent circuits that night.

since then, we've been back and forth to his lung doctors a few times, they tell us it is not RSV (the respiratory virus most dreaded by all preemie parents), and not the flu. but it IS a virus that tends to hang on for a few weeks and makes kids really sick. they offered to admit him to the hospital, but let me know that they wouldn't do anything differently there than what we are doing at home, provided he didn't get too dehydrated. well, it wasn't easy to keep fluids in him (despite the fact that I have direct access to his gut via the mic-key button), but I opted to try my best at home, because the hospital is just NOT a fun place (I always do my best to avoid it unless I'm getting paid to be there.) and I knew Rowan would get better faster at home. so despite our lack of home health nurses, we stuck it out in our living room. which means we have been giving IMC level hospital care to Rowan around the clock without any break until the home nurse shows up so we can sleep...and sometimes the home health nurse doesn't show up, and sometimes there wasn't one scheduled to begin with... so i guess it goes without saying I am one tired momma.

but i think it paid off, because today Rowan barely needed any oxygen at all, and I was even able to take him back off the vent for an hour or so at a time until he got tired and needed to be put back on. he was playful and talkative, and he even made a few little messes. I have never been so happy to see little toddler messes all over the play-room! he is also tolerating his food without gagging or wretching it up, so I'm gonna go out on a limb here and say I think he's turned the corner and is getting better. I have him back on the vent to sleep tonight so he can get some good rest, and then we'll see how tomorrow goes.

I am too tired to come up with a witty ending to this update, so I'll just say goodnight!

three ladies

i'm excited i was able to pump out a little art quilt this week, just in time to enter it in persimmon dreams "project quilting" challenge! we had a lot of other stuff going on, including hours on the phone trying to sort out an insurance/home medical supply disaster, dealing with highly inappropriate behavior coming from one of our home health nurses, a feeding clinic appointment, an outpatient EKG (for a two year old--not as easy as it sounds!), and a regular doctor's appointment. coupled with the usual work/clean/cook excitement that goes on around here, I'd say it's pretty amazing I got anything extra done at all! but here it is:

three ladies

the challenge was called "my favorite color," and the rules were to use only white and shades of one other color. i hate using white in my quilts, so it was not easy for me to do! but i'd say it turned out okay. other than the fact that i need a little practice with the binding part of things (see the wonky upper right hand corner). i was also excited to get to try out some hand embroidery techniques, and to use my free-motion quilting foot! and i suppose i should pause for a moment to express my undying love for a substance called "wonder-under," which has the amazing ability to turn any old piece of fabric into an iron-on. so basically, if you can draw (or trace) it, you can put it on your quilt. the inspiration for these lovely ladies came from a mannequin i have hanging on the door of our "beach bathroom" (i.e. the semi-private concrete-floored bathroom in our basement).

so the image went from this:

to this:

to this:

and these girls happen to look quite nice in my kitchen window!

 

 

 

and, while i have a lot more to say about my lovely quilt, the little guy is up, and telling me "mommy bubbles. mommy bubbles." so i guess it's bubble-blowing time. see ya later!

holy crap i didn't know if i'd ever blog again...

life got SO busy, and since my last post, we bought a house, moved to a new town, AND got married, among many many other things. but as a new year's resolution, i decided to get back into quilting, and participated in my first online quilting challenge through project quilting at persimondreams.com...

simple squares crib quilt

...which led to me reading a few other people's blogs. which led to me remembering, hey...i've got my OWN on of these things! so rowan's napping and here i am!

as the months go by, and rowan gets bigger, stronger, and smarter, i hope to make this less of a "life-with-a-medically-fragile-child" blog and more of a "hey-look-how-much-we-rock" blog. (hey, i think the world would be better if everybody bragged a little bit more about all the cool shit they do.) but in the meantime, things really ARE looking up. rowan hasn't been on the vent since sometime in I think October, and he did pretty well with all his capping trials (which is where we purposely plug off his trach to see how he handles it). it did make him a little winded, and when he fell asleep, he would sometimes have some problems, so I kind of wondered what was going on there. this past thursday, he had a bronchoscopy (i.e. a camera down his breathing tube to look around down there), and we found out he does have some airway narrowing above the trach. this is not unusual in babies who have experienced long-term intubation, due to scar tissue, trauma to the airway, etc... the doctor said it wasn't severe, but that it would probably need intervention. so I'm waiting to call his pulm nurse practitioner on Monday to see what we do next. I think it will be schedule an appt with an ENT (ear-nose-throat doctor), who would be the one doing said "intervention." Anyway, not exactly the news we were hoping for, but hopefully just a small bump in the road towards decannulation. in the meantime, Rowan is walking, talking, even eating a little too (when we bribe him with yo gabba gabba episodes) so i find it hard to get too depressed about it all.

the yo gabba gabba bribe method.

i could definitely type a lot more about all the stuff that's happened between last summer and now, but it might get a bit boring, plus i want to go organize a closet before Rowan wakes up and starts terrorizing the house again :)

tah tah for now,
 love erin

they say we won't be given more than we can handle...

...but sometimes I wonder. especially when we get a letter from our landlord requesting that we vacate in two months. ACK! they want to sell the house by the end of the summer, and they want us out to do it. jerks.

dumb stupid jerks.

and mean!

mean, dumb, stupid jerks.

we weren't looking to stay in this place forever, but we definitely weren't looking to move out anytime soon, what with the 15+ boxes/month of medical supplies we receive a month, the home health nursing, the big heavy medical equipment, and so on and so forth. but we definitely won't miss the leaking ceilings, outdated kitchen, marshy backyard, flooding basement, leaning back deck, and GINORMOUS heating and cooling bills. while this place certainly isn't a dump, it's FAR from being a gem. so good luck to my landlords with unloading it in the next few months. makes me wonder if they're familiar with the terms FULL DISCLOSURE, but, hey, that's not my problem.

in other news, Rowan is coming off the vent for 7 hours a day now, increasing to 8 hours a day on Friday. we've been having a lot of fun taking him out to different places. so far he's been to the midtown scholar bookstore a few times, walking around and picnicking by the river, a sushi place, with me to get by TB skin test, back to the NICU for a visit with some of his nurses, a pizza shop, a clothing store, his gramma's house (of course), and a few other random places. and tonight he gets to go looking at a couple of houses with us! oh, the places you can go :)

tah tah for now, and wish us luck!

erin

sweet

 


                                what an amazing photo, and what an amazing little girl.

friday the thirteenth

three months ago, we visited pulmonology on Friday the 13th. yesterday, Friday the 13th, we visited pulmonology again. and when we checked out, we made our next appointment for three months from now on Friday--you guessed it--the 13th of July! unable to sleep around 4am this morning and watching a today show rerun on tv, I learned that there haven't been three Friday the 13ths in one year since sometime in the 1980s. thank you Kathy Lee Gifford and Hoda Kotbe for this intriguing fact. it is tres bizarro that all our home vent appointments fall on these days. but i'm going to consider it lucky, as we've come away with good news each time so far.

this time we got the go-ahead to continue weaning Rowan off the vent, which means we get to increase his time off by 30 minutes twice a day each week until he's off all day. by our calculations, he will be completely off during the day by mid-june, provided everything goes well. he will still go back on the vent for naps and overnight, which means i still have to take it everywhere with me. but i celebrated anyway by buying Rowan a non-medical stroller off craigslist from a nice couple in uptown Harrisburg. they were very kind to let me "test" their stroller...i.e. shove the vent and suction machine in the basket to make sure it would fit. with a little mcguyver-ing, i got it to work, and i still have complete access to the oh-so-important "silence" button! we are now cruising in style with a deluxe italian stroller :)

bye-bye heavy medical stroller, hello 9lb peg-perego!

there's even a little room on top of the suction machine for a pulse-ox machine or ambu-bag

rowan approves

the other topic we discussed was rowan's weight. he's been looking a little marshmallow-man-esque these days, so we decided to make a few changes to his calorie-packed diet. so we are cutting out microlipids (white fatty oily stuff we've been putting down his g-tube), and beneprotein powder.

see ya later, supplements!

 we are also changing his formula to a higher-calorie content "big-boy" formula (since he is now 1 year old adjusted), which means i can feed him less volume. i'm hoping this may actually make him experience a new sensation called "hunger." since he's been born, we've been working with the mindset that the more weight he gains, the easier it will be for him to get off the vent. under the guidance of his pulmonologist, we've been pretty much stuffing him to the gills with food, using his g-tube. so i'm not sure he's really ever been hungry. i'm hoping this new foreign sensation will cause him to do this strange thing people do...EAT! (while rowan is a champ at taking his bottles, we haven't been so successful in getting him to transition to solid foods.) ever since PREGNANCY i've been obsessed with fattening this kid up, so it will be a big change for the both of us. but i will definitely miss these chunks!

chunky chunky arms

any medical or trach-savvy folks reading the blog, note the pilot-balloon-in-the-armpit look that rowan is rocking. does this happen to every trached kid? i can't seem to keep it out of there!

one downside to weaning is that rowan is drying out a bit. the vent has a heater/humidifier unit that keeps his secretions (or "boogers" as i usually refer to them) moist and easy for him to cough out. you and i (provided you do not have a trach) breathe through our noses and mouths, which naturally heats and humidifies our breaths. rowan bypasses his nose and mouth on inhalation and breathes unhumidified air through his trach. up until now he has been on the vent most of the time, which heats and humidifies the air he breaths. but now that he is weaning off the vent, we are also losing the humidity, causing his boogers to become dangerously dry and sticky things that are hard for him to clear, and on occasions plug up his trach, effectively blocking his airway, and causing major problems. we do have nifty little things called HMEs (stands for heat/moisture exchanger--i think?) which is basically a sponge we put on the end of the trach.

rowan's "nose"

in theory, it traps the humidified air that rowan exhales, and then when he inhales, he can get the moisture back. it also filters the air, so dirt and dust and little bugs don't fly in...gross to think about, right? in reality, it doesn't moisturize the air as well as we would like, so lately i've just been changing rowan's trach a lot...like every two days or so (normally you only need to do that once a week)...to prevent mucous plugs (the medical term for the big nasty dry boogers that block his airway). they do make HMEs that are bigger and work better, and i will be ordering those promptly on monday once my handy-dandy medical supply company opens.

well that's about all the updates i have for today, so i'll leave you with a fitting song from one of my favorite funny-named bands:

 

friday the 13th by deer tick

happy daylight savings time people!

damned blog

for some reason, the umbrella stroller blog got deleted away. i kept messing with the video...that may have had something to do with it. but anyway, i wanted to put the video back up because it is just so great. so here is billy pushing rowan around the street in front of our house on the first day we took him outside without his vent (and tons of other medical equipment):

if / then

if you're a trach baby, and your mom's a trauma nurse, AND you poop all the way up your back, then you might get your onesie cut right off of you...

hey, where's my shirt going?

can i get undressed this way every time?

i may be cute, but i'm laying in poo

don't worry, no babies were harmed in the making of this blog. as an ER nurse, I cut clothes off people for a living. it's a million times better than risking getting poo on the trach, trachties, or vent tubing! and the shirt was too small anyway :)

Heartless Bastards- Came A Long Way

vent weaning is so much fun!

so we've been weaning rowan off the vent for the past month or so, but it never really felt too different, because all we were doing was messing with his settings (i.e. decreasing his mandatory breath rate by 2 breaths per minute every friday). but today was special, because today is the first time we got to TAKE ROWAN OFF THE VENT FOR A HALF HOUR! so from 2:15-2:50 (we were having so much fun we accidentally took an extra five minutes!) rowan and i walked all around the house...upstairs to the bedrooms, downstairs to the basement, out on the porch, and even in the bathrooms. he absolutely loved it! and he did a VERY good job...I'm so proud of him! and the best part is he gets to come off for a half an hour twice a day, so when his dad and brother get home, we can do it again!

                                                                      what a guy!

the one you feed

obviously, free time is not something I have a lot of, as evidenced by the fact that I am typing this post on my iPhone while rowan sleeps on me (some days the only way he will take a nap is if he's lying on top of someone). but I really am trying. I watched a documentary about Anne Leibovitz last night, and she said something to the effect of just having talent is not enough. talent is like a baby, you have to feed it and nurture it so it will grow. this struck a chord with me, so last night while Rowan was asleep, I did some normal stuff - cleaning, teevee watching, but I also did this    ======= >











I was inspired by an awesome book that billy bought me for christmas:

and I also signed up for a crafty online class here:

http://dispatchfromla.typepad.com/dispatch_from_la/rotdoci.html

which I am thoroughly looking forward to exploring this evening when the baby's asleep (in his crib this time.) but don't get me wrong, there's nothing like the cuddles I get from this sweet little peanut. He will always be my top priority, but occasionally I hope to get a chance to "feed" my other babies too ;)

~~~~~

a wise old man was teaching his grandson about the two wolves at war within us all. one wolf is good, fair, brave, honest, and full of hope. the other is selfish, greedy, angry, and full of fear.

"but grampa, which wolf wins?" asked the boy.

"the one you feed," the man replies.

native american folk tale

have a large day

instead of saying conventional things like "have a nice day," or "have a good day," my grandfather (pop-pop) would always say "have a large day." yeah, i come from good stock. and i am writing this blog because i have just had myself a rather large day. here are the details:

of course there was the usual, taking care of the baby (which involves trach-care, g-tube care, getting dressed, love, chest PT, equipment checks, emails to nursing agencies, formula mixing, love, emails to medical equipment supply companies, love, love, love, cold washcloths for his tooth that's coming through, love, walks through the neighborhood, bouncing, flying, love, bottle-feeding, tube-feeding, spoon-feeding, love, love, reading books, talking, joking, love, jumping, bath, more trach care, more g-tube care, changing trach-ties, love, changing into pee-jays,  more chest PT, love, medications all day long, talking to the home-health nurse, love, and i'm sure there's more that i'm leaving out but that's a pretty good depiction.

and then there was that dinner i cooked: chicken burritos. yum. i'm about to go make myself another one just because i brought up the subject. enough said.

board game. this was brought on inconspicuously by me and aaron laying on the couch, bored for maybe one minute. so i looked at him and said "wanna play a game?" so we ended up playing apples to apples. it is the kind of game where more is merrier, so we invited billy and rowan to play along. since it is a card game where you essentially pick a card, we just held the choices up in front of the baby and he got his chance to make a choice. he did that by either smiling at a card, trying to grab a card, or headbutting a card. he was a good little player and actually ended up WINNING the game! yay rowan! mommy couldn't be more proud :)

curling my hair. yeah you heard it first. i actually spent time on my looks. i am moving up in the world. rowan helped me put my hair in curlers and i must say it looks GOOD.

about ten tons of laundry.

kalhua. mi-mi (pop-pop's wife)'s recipe. passed down the generations to little old me. i made 24 pints this evening which are currently sitting in darkness for one month until they can be brought out and given away as christmas presents and consumed in people's living rooms as white russians. i have made kahlua for the past 5 or 7 years (not sure) save last year (due to the bedrest issue) according to mi-mi's recipe so that in itself is big for me.

pumped 6-7 times. also good.

watched the steeler's game. or at least payed a small amount of attention to the steeler's game while making kahlua in the kitchen.

listened to a "this american life" episode about penn state. i'm not penn state alumni or even a fan, but it made me shed a few tears.

i haven't really sat down and rested or reflected on my day until right now. i haven't had a chance. so i think that qualifies as a large day. maybe humongous, but i'm not trying to brag. we'll just call it large and leave it at that.

here's to hoping tomorrow's just as big :)

The last ten movies I watched

1) Black Hole (1979) - I found the soundtrack LP to this movie in a thrift store maybe a year ago.  John Barry is the composer.  Space music is always nice.  I had some drinks while watching this which helped a bit with the movie.  The late seventies special effects are what you'd expect.  I rate this movie a "Strong Meh".

2) 2001: A Space Odyssey (1968) - Seen bits and pieces of this over the years, never the whole thing.  This has been on my list to watch for years (keep a list, it will help with all your obsessions).  Stanley Kubrick did a nice job with this Aurthur C. Clarke story.  This one is well worth watching.  But seriously, what the fuck is the ending all about?  I had some drinks watching this and got up to piss a few times.  I couldn't find the remote control so I didn't bother with pausing it.  Maybe I missed something but is Jupiter just one big embryo?  I might have to IMDB this one, I don't quite understand it.  Scratching my head, I rate this movie as "Watch This Shit, Homie".

3) Dog Day Afternoon (1975) - This is when people with balls made movies.  I have seen this a number of times.  I find acting pretentious and bad acting down right insulting.  This movie is neither.   It's about a bank robbery gone bad.  If you haven't seen this this you should remove your shoe and smack yourself on the head with it.  I rate this movie as "You Should Have Already Seen This".

4) Tell Them Who You Are (2005) - This movie is about Haskell Wexler.  Wexler was known for being a camera man with a bad attitude.  He also did some directing.  He was fired from the filming of One Flew Over the Cuckoos Nest.  He comes across as a cranky old man.  His son made this movie and should listen to his fathers constant yacking at him about lighting and sound.  This does not come across as made by a pro.  Unless you are somehow related to Wexler I don't know why this would be interesting to anyone.  I rate this "Yawn".

5) Secret of NIMH (1982) - I used to catch this cartoon movie on television throughout my youth.  I found it terrifying, fascinating and down right awesome.  It appealed to me on so many level as a kid in the 80's.  It's not too long and moves quickly.  Go out and watch it if ya can.  I rate this "Watch This Shit, Homie".

6) Nashville (1975) - Very long movie satire about Nashville at the height of country music.  The big joke is summarized at the beginning of the movie when all there is a traffic jam due to an accident.  Everyone gets out of their vehicles only to realize they are all country stars or aspiring country stars.  That's all you really need to know about this movie.  I rate is a "Strong Meh".

7) Jeremiah Johnson (1972) - Great movie about a dude who goes out into the wilderness to become (I think) a fur trapper.  Staring Robert Redford.  He encounters friendly and hostile Indians, an eccentric bear hunter, a dude buried up to his head in sand and a dude frozen to a tree.  My only complaint is that there is too much talking in this movie.  That's a joke.  There is not much dialogue.  I rate this movie as "Watch this Shit, Homie." 

8) The Endless Summer (1966) - Perhaps my favorite documentary of all time.  This film follows two California surfers who chase summer, and the perfect wave, across the globe.  You don't have to be a surfer to enjoy this film.  I've never surfed in my life.  In fact the film appears to be aimed at people who don't surf.  This movie is hilarious.  You have got to stop reading this and go watch it.  I rate this as "You Should Have Already Seen This".

9) Land of the Lost (2009) - Will Ferrell has a few decent moments as he tends to do, but this movie was boring.  I got drunk and fell asleep writing in my man-diary to this movie.  Think it has something to do with dinosaurs. I rate this a "Strong Meh". 

10) Never Been Done (2004) - This is the story of pro skater Jon Comer.  It's an inspiring story of a young man who lost a foot as a kid but became a pro skater against all odds.  That's really all there is to tell you.  Comer has a good sense of humor and seems like a decent and humble hardworking fellow.  I rate this "Watch this Instead of the Mighty Ducks Next Time You're in the Mood for an Underdog Story".

Thanks for reading.  Billy Falls for Look Everyone I Wrote a Blog Productions.  2011.

so thankful

i wanted to write a big long thankfulness blog for today, with lots of heartwarming pictures. but, my SD card on my camera is acting up, and it won't let me upload anything. and i can't remember all the happy crappy thankfulness stuff i was going to write about before. and maybe it was meant to be, because the truth is, this is not an easy time for my family. we are extremely limited in what we can do. some of the people i love are sick. i wasn't able to go to my aunt's thanksgiving dinner like i normally would. but i did make a rockin' turkey dinner for me and billy and aaron, and rowan got to eat his first jar of baby-food turkey dinner. i got to see my dad and my sister, who are both doing well. and considering last year on this day i woke up 21 weeks pregnant in a pool of my own blood, on my 6th week of bedrest, just praying like hell to make it to 24 weeks (babies born before that gestational age are usually not resuscitated), it's pretty easy for me to say i'm thankful. i'm thankful for my ability to get out of bed and make dinner. i'm thankful to be able to clean my own house. i'm thankful to be able to walk my dog. i'm thankful for my family. and i'm so thankful for my sweet baby boy. happy thanksgiving. love, erin

recipe for the best pumpkin pie in the WORLD

aunt becky's pumpkin pie

use a longneck pumpkin or butternut squash. cut into 2-3 inch slices. remove seeds. place in pan (face-down) with a little water in the bottom for 45 minutes or until "fork soft" (meaning you can poke throught it easily with a fork). cut out the meat and crush it lightly with a fork.

for each pie, use:


1 1/4 cups cooked pumpkin
2 tbsp butter
1 cup sugar
2 tbsp flour
1 tsp vanilla
2 eggs
1 can evaporated milk

mix the wet ingredients together, then add the pumpkin, then add the dry ingredients.

bake at 425 for the first ten minutes
bake at 350 for an additional 30-40 minutes

the pie is done when it is "springy"

sprinkle the top with cinnamon while hot

and there you have it folks, there is the recipe for the pumpkin pie i've been lucky enough to have eaten every thanksgiving for my entire life, made possible by my awesome aunt Becky. trust me, this is the best pumpkin pie in the WORLD!

lots has happened in the three or so months since i've updated this site, but i definitely don't have time to share it all while i'm here at work and (once again) writing from behind a breastpump. yes...i am still pumping. my goal is to make it through the winter...to hopefully help rowan fight off any nasty cold/flu viruses he may encounter. i probably won't know what to do with myself after i stop i'll have so much time on my hands...(yeah right.) but anyway, the biggest news is that rowan's home vent nurse practitioner told me that she anticipates being able to start the vent weaning process when we go back to visit in january.

WOOT

WOOT!

supposedly weaning is a long process...we were told 6 months or so if all goes well, but it will be so very exciting to start. to even unhook him from that big heavy machine for fifteen minutes and just carry him around the house will be such a joy. right now i can't do that without getting a major backache, because it's baby in one arm, vent hanging off the other. if i had time for a chiropractor or some PT i could really use it, because my back is KILLING me!

in other news, rowan is sitting up almost all by himself, for a minute or so at a time. we still keep our arms around him, or at least have soft pillows around him, in case of a topple, but he is doing great. he is playing with all kinds of toys, pulling mom's hair, and taking off his own diapers. he has also been successful at removing his mickey button with the balloon still up. while this is not exactly a good thing, it is a sign of a healthy active baby, so i can't get too upset about it. he can also disconnect his vent circuits from time to time. he hasn't pulled out his trach yet, but we are keeping a close eye on him because i'm pretty sure he could if left to his own devices.

okay, that's all i can really update for now because break-time is over, and i gotta go save some lives.

later!