Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

What I Wore Sunday: December 1

Hi everyone, I’m sorry I didn’t post all week. Today I’m back with Fine Linen and Purple for the Sunday fashion linkup.

It was the week of Thanksgiving, so I will use that as my excuse for not posting, but also I’ve been super tired and lazy all week. At the end of the day, after visiting Agnes at the hospital and cooking dinner, and entertaining Stephen and putting him to bed, all I want to do is crash on the couch and read a novel. I probably could have found some stuff to write about, but I couldn’t muster the enthusiasm.

100_1901Well, anyway I do have some things to write about today! Let’s start with the fashion. I decided to repeat the outfit I wore a few weeks ago on the day we took Agnes through the Emergency Department. This is a skirt from Lane Bryant, bought on clearance. It was the only long skirt in my size so I’m really glad I like it! I’m also wearing a long-sleeve shirt from Motherhood Maternity, which still fits because of a horrible combination of unfitness and laundering shrinkage. As the top layer, I chose a black sleeveless sweater vest thing I received as a gift a couple years ago. I am also wearing my black Minnetonka Moccasins, but they aren’t quite visible. Finally, I’m wearing earrings! There’s a story there: I used to wear earrings all the time, every day, even when I was just hanging out at home. When we moved to Rio Rancho, I started to have problems with the earrings irritating my ears, becoming sore and producing a bit of drainage. Gross. So I tried cleaning all my earring posts with rubbing alcohol before putting them in. That didn’t help either, so I finally gave up and stopped wearing earrings entirely. This past week I put in a pair of earrings, and they didn’t hurt! My earring holes hadn’t closed up, the earrings were fine, and I was able to wear them all day! The next day, I tried a pair and they hurt. Boo. But today I’m having no trouble at all. I’m not sure what the difference is; these are the same earrings I’ve always worn in every city I’ve lived in. I’m not sure why I had trouble with one of the pairs I tried this week but not with the others. It’s a mystery, but I am happy to start wearing earrings again!

In my photo, I’m posing with Jeremy’s new car. It came upon us suddenly that we need all new vehicles. We’ve known for a while that we need a minivan to drive Agnes around with all her equipment. We’re actually pretty much ready to make that purchase within the week, once all the final donations trickle in. But in the midst of the van discussion, Jeremy’s VW started having trouble too. He already knew it was nearly time to replace it, and since it started having mechanical problems, he decided to replace it now! So with the help of a small loan through the dealership, he was able to get a “new” Suzuki Forenza, manual transmission. He’ll use it to deliver pizzas. I’ll learn how to drive it too, even though I will mostly use the van when we get it. I’m excited to learn how to drive a manual transmission car. I’ve never done that, but I feel like it’s something I should know how to do, to be a well-rounded person.

Speaking of Agnes, she has been doing well the past few days. She is stable on her home-going ventilator, and the doctors have successfully weaned her oxygen requirement down to 1 liter, which is about where she was before this admission. I am super happy about that. Jeremy and I are in the midst of training. Today we just got “checked off” for changing the ventilator tubing and stuff, and I passed the terminology quiz. We both still need to be checked off for bagging, and giving Agnes her inhaled medicine using the bag. Then we can do our 24 hour care. It looks like Agnes will be ready to come home around December 10, if she is medically ready and all the other stuff is done. Then we plan on keeping her home for Christmas. She hasn’t been home for any other holiday, except possibly Columbus Day and I’m not even sure about that. Hopefully with the ventilator she will be able to stay away from the hospital for longer than a few measly weeks.

We could really use continued prayers for Agnes and our family. Thank you everyone who has been praying for us and supporting us through these difficult months. There’s a new page on my blog with more info about that.

Head over to FLAP for more Sunday posts.

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What I Wore Sunday: November 17

Hi, I missed the link up last week because we spent 12 hours in the Emergency Department at Akron Children’s Hospital, but I’m happy to be back with Fine Linen and Purple.

100_1894This Sunday I briefly considered wearing the outfit I wore last Sunday, just so I could post it up on here, because it was a really nice outfit. But I decided not to. Instead, I went for my tried and true outfit that I often fall back on. Shirt and skirt both thrift store finds and well loved by me. Shoes Minnetonka Moccasins. Pink watch, Relic. Ring, Kay Jewelers substitute wedding ring when I had lost my real wedding band about a year ago. It finally turned up, but I still wear this “fake” one when my hands are fat and my real one doesn’t fit.

Anyway, I’m sure most of you come here to get Agnes updates, so here it is. I haven’t posted much this week because I’ve been in a really awful place in my head where I almost feel like it’s time to give up the fight and stop delaying the inevitable. I feel so ashamed to admit that, but I’ve written honestly on this blog before and I think it’s important for other parents of special needs, medically fragile, and gravely ill children to read real accounts of what it’s like.

So, Agnes nearly died on Monday from what they call a “pulmonary hypertensive episode” which pretty much means she freaks out so much she forgets to breathe, oxygen doesn’t get from her lungs into her blood, and her heart has no oxygenated blood to pump to her body. That got us thinking about Agnes’ End of Life and what that might look like, and what would we do, and how much treatment is too much, and what kinds of things would we want to go forward with and what would we want to refuse.

Agnes did recover from that episode on Monday, and no one is thinking that now is the time we need to discuss The End, but Jeremy and I wanted to get the conversation started so that when the time does come, we know what we want.

So anyway, I’m just looking at Agnes’ life she’s had so far, and I’m sure it’s going to be more of the same in and out of the hospital, a surgery here and there, long recovery times, always the danger of imminent death if her shunt fails, if her bowel gets twisted again, if she gets a cold, if she throws up and aspirates, on and on. And I thought, how much more of this is going to be worth it? I’m already exhausted emotionally and mentally and physically. I can tell Agnes is unhappy and uncomfortable being in the hospital yet again. What can we do for her that is actually going to make a real difference and help her to live comfortably and enjoy even a few enriching experiences?

I don’t really have a good resolution to this narrative yet, but I do feel a little bit better about it today than I did earlier this week. I feel a little bit more able to fight for Agnes and do what it takes to keep her alive. Really it’s a minute-to-minute struggle. I feel like a horrible parent for even thinking that maybe I don’t want to keep fighting for Agnes. Don’t I love her? Isn’t she my baby? Shouldn’t I love her and fight for her no matter what? That’s what all the other moms do for their special needs kids with complicated medical problems. All the other moms yell at hospital doctors who suggest it’s time for “nature to take its course.” All the other moms heroically bear the inconvenience of bringing home a kid on a ventilator, or giving tube feeds continuously. All the other moms have faith in their children to overcome even the steepest odds to live beyond expectation and achieve developmental goals all the medical professionals said would be unattainable.

So, that’s why I haven’t been posting this week.

Agnes is going back to surgery tomorrow afternoon to have her shunt revised and replaced. Then she just has to recover from surgery. The doctors have opened the discussion of sending Agnes home on a ventilator; Jeremy and I have to decide what we want by Wednesday probably. I’m not sure we really have a choice, though the doc says we do.

I can’t even write any more right now. Would you all please pray for me? And for my family and for Agnes. Thank you.

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What I Wore Sunday: November 3

Linking up with Fine Linen and Purple.

Today we got to go to church as a whole family! And we didn’t have to visit the hospital afterwards! Yay! In other awesome news, I managed to get Stephen to go upstairs to the choir loft with me, so I got to sing with the choir! Yay! And I must say we sounded pretty darn good today, too. Today we sang Tone 7, which I remember the last time we sang it, it was not so good. We all brought our “A” game today though, and we rocked Tone 7 like nobody’s business. I’m looking forward to the next few weeks, because there are several big feasts coming up, and Advent starts soon. It’s going to be fun in the choir, especially if Stephen keeps being adorable and well-mannered in the loft. Today he wasn’t so sure at first that he liked the idea of being upstairs, but I held him up to look over the railing at the people below, and we saw Jeremy and Agnes, then I held him for a while while we sang. When I put him down he stood around mostly, looking at the other people in the choir. After the homily he became comfortable enough to walk around the little area, pause to look over the railing, play with the toy he brought, come over by me for a bit, walk around some more. I did miss communion because I waited too long to go down, then I went at a toddler’s pace down the stairs. Oh well.

100_1875I’m hoping we can go to Liturgy on Friday. It’s the Synaxis of the Archangel Michael and All the Bodiless Heavenly Powers, or something along those lines. Doesn’t that sound way cool? “Bodiless Heavenly Powers.” Neato.

For church today I chose my favorite skirt; I bought this at Savers in Albuquerque. I love long, full skirts. I’m also wearing a black shirt from Motherhood Maternity; it still fits me because it shrinks a tiny bit every time I launder it. Grr. Finally, I threw on that long sweater vesty thing that I like to wear during in-between seasons, plus my Clarks boots.

Today Stephen had a great time helping my dad take Quinn for a walk, and then later they raked leaves. Grandpa is pretty much awesome. Stephen also requested that grandpa do his bath tonight. It’s cute.

Today Agnes is doing pretty well; she’s been sleeping a lot. She has learned how to freak out again so that people will pick her up and hold her. I think she probably figured out in the hospital that doesn’t work too well, but at home it works every time. She sure knows what to do to get attention. I need to get her a “drama queen” shirt or something.

Tomorrow we are getting some professional photos of Agnes and Stephen! It was arranged through Palliative Care at the hospital, I think because Agnes is “special” or because she was in the NICU. Whatever, free photos of my kids. The reason doesn’t even matter!

I’m looking forward to a little more down time this week, since Agnes’ schedule isn’t so packed. The only outings we have scheduled are the photos, and hopefully church on Friday. No doctors. I’m going to go right now and start enjoying my downtime.

Head over to Fine Linen and Purple for more link ups.

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What I Wore Sunday: October 27

Linking up with Fine Linen and Purple.

Today when I woke up, I stood in front of my closet for 10 minutes contemplating my choices. I had a couple shirts to choose from, a few more skirts, and a few dresses that are not quite cool-weather appropriate. It was tricky. I need to buy some more clothes. Anyway here’s what I decided to wear:

100_1850100_1849I’m wearing the skirt from last week, my trusty black Merona Target skirt I’ve had since high school. I’m also wearing a Daisy Fuentes shirt I think I got at the Goodwill in Billings, MT but I have rarely worn it. I have long thought the shiny fabric was not very flattering, but since lately I have so few choices, I’ve been wearing the shirt anyway. This morning when I got Stephen out of bed, he pointed at my shirt and said, “pwetty.” Toddler approved. I’m also wearing my new Clarks boots. My pink watch was a Christmas gift from Jeremy. It’s a Relic brand watch. It came packaged in a pretty sturdy little tin that seemed like a waste to throw away, so we kept it. We use it to store all the holy cards we have with relics. It’s our Relic reliquary. Ha!

Today the Eastern Catholic calendar celebrates Christ the King, or at least that’s what my calendar at home says. You would not have known there was a feast day from the liturgy because the music was all just from the regular Sunday rotation. I don’t quite understand the hierarchy of feast days in the Eastern calendar; in the Roman calendar, Christ the King is a really big deal with different hymns and prayers. The really big feasts in the Eastern liturgy have all kinds of special music where you change out the regular songs for the festal songs, less important feasts have some special music, and the least important feasts have maybe one special song. All the other feasts seem to be simply noted on the calendar. I’m sure I will come to understand more and more. I hope. It’s been a couple of rough weeks in the choir since the lady who leads has been on vacation. She’s coming back next week! I don’t know if I will be able to sing in the choir once we can start bringing Agnes to church; it all depends on if I can convince Stephen to come upstairs with me!

After liturgy, we went to visit Agnes at the hospital. Tomorrow she can come home! We’ve requested a morning discharge, so hopefully we won’t be stuck at the hospital all day. It will be nice to stay home and snuggle Agnes freely, and not have to go to the hospital every day. Too bad Agnes has so many doctors appointments! I think I have to take her to the pediatrician on Tuesday already! Well, we’ll get some down time at some point this week. While we were at the hospital today we watched the Disney Channel to keep Stephen occupied. We caught a few episodes of “Dog with a Blog” and it was hilarious! I wasn’t expecting to like it, but it was really funny. The premise is that the family pet can talk and only the kids know it. The dog writes about the family on his blog after they all go to sleep at night. If you ever have to watch kids television programs, I recommend that one. Stephen was actually not very interested beyond “puppy!” but Jeremy and I both enjoyed the show!

I guess that’s all we did on Sunday. You can read other bloggers at Fine Linen and Purple.

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What I Wore Sunday: October 20

Hi there. Linking up with Fine Linen and Purple.

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Stephen noticed we were taking pictures

Stephen noticed we were taking pictures

He wants to be in the picture.

He wants to be in the picture.

He wants to make sure you noticed Mommy's boots.

He wants to make sure you noticed Mommy’s boots.

My outfit today is a great example of “use what you have.”

The shirt is a Motherhood Maternity shirt I bought when pregnant with Agnes. I actually don’t recommend this shirt because the fabric is very thin, and the shirt shrank a lot in the wash. You would have to air dry, I think, because even low heat in the dryer was too much. The price was too much for that kind of shirt.

The sweater vest thingy was in a bag of free clothes someone gave me when pregnant with Stephen. I love to layer this over long sleeves in the fall and winter. It’s just enough of a layer to get through those days that aren’t quite cold, but still rather chilly.

The skirt is seriously something I have had in my closet for more than 10 years. It still fits (yay, stretchy!) and more miraculously, the elastic waistband is not trashed despite over 10 years of normal wear and wash. It is Merona from Target, so I guess I highly recommend. I believe I wore this skirt as my concert black and white in high school choir.

Also, today I got to wear my pretty new Clarks boots. Yay for fall!

Another Sunday without Agnes at church. She is doing much better the past couple days, so I did have a positive attitude when folks were like, “where’s your baby?” I also had the freedom to sing with the choir today and it was good that I was there. The lady who leads the choir is on vacation this week and next week! Anna let me start off the troparion and it went pretty well. The scary part was when one of the other ladies who kind of leads the sopranos had to run home in the middle of the liturgy! I’m still not totally comfortable with the music of the liturgy, so I was pretty nervous until she came back. We did pretty well, all things considered, and like I said it was good that I was there!

As for the rest of my day, it was pretty good. We hung out with Agnes for a while and Stephen played with all the PICU nurses. He’s a little charmer, and all the nurses and doctors think he is just adorable. Agnes’ nurse today said, “He is the cutest; I could just eat him up.” You better watch out, Stephen. I also spent a long time in the kitchen with Stephen, cooking a pot of chili for dinner with a pan of cornbread on the side. Stephen helped by standing on his little step stool and commenting that the pots are “hot.” He also stuck stickers to the kitchen floor. I asked him what he wanted for dinner because I knew he didn’t want chili, and his answer was, “macaroni.” I asked “macaroni with cheese, or with tomato sauce?” and he said, “cheese tomato sauce!” That’s just because he repeats everything. He doesn’t really understand about answering questions 100% of the time. So I assumed he meant like the blue box macaroni, and he was pretty happy to eat that for dinner. So, I cooked a pot of chili, a pan of cornbread, and a box of macaroni and cheese for myself and Stephen. Good thing we like leftovers up in here.

Anyway, thanks for reading, and if you’re in the mood for a real Agnes update, check in again tomorrow because her care is really going down tomorrow. She’s getting an echocardiogram and they may switch the ventilator to the CPAP plus pressure support setting tomorrow. Wooo. Big day. In the meantime, go here to see a great picture of me stuffed into the backseat of our tiny car with two car seats and an oxygen tank.

Check out Fine Linen and Purple for more Sunday fashions.

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What I Wore Sunday: October 13

Linking up with Fine Linen and Purple. I missed the link up last week but I’m happy to be back today.

Imma get the most exciting news out of the way first. Stephen now eats eggs again! Wooooo! This expands his meal repertoire by about 15% so I’m pretty happy.

Ha, I bet you were all expecting an Agnes update to be the “most exciting.” Well, I am happy to report that she has made great progress in the last 24 hours. For those of you just tuning in, Agnes went to have a shunt placed on Tuesday which went off perfectly fabulously, except she had some post-op complications that ended up with her in the Pediatric ICU dependent on a ventilator while she recovers from aspiration pneumonia. She has been getting x-rays to follow the healing progress of her lungs, and the scan from this morning showed noticeable improvement. The doctor was also able to reduce the settings on the ventilator with the hopeful goal of switching her to CPAP support by tonight or tomorrow morning, and off all machine-assisted respiration by later tomorrow.

100_1815So, long story short, we went to Liturgy this morning with only one kiddo in tow. I took the opportunity to sing with the choir while Jeremy wrangled Stephen in the pew. I guess it was all going fine with Stephen playing with his little friend Yuri, but after about 40 minutes a fight broke out regarding Yuri’s toy trucks he had brought. I did hear a little commotion from up in the choir loft…

Today I am wearing a mystery garment from the Savers thrift store in Albuquerque, NM. The tags have been removed; a common phenomenon with thrift store clothes for some reason. The dress has not disintegrated in the wash, so I continue to enjoy it. I wore this dress when I was pregnant with Agnes, and now that I am just the tiniest bit thinner, I just cinch the tie in the back a little more and it still fits. And my footwear….black Minnetonka Moccasins! It’s been warm again so I’m back to my trusty moccasins. Hopefully soon it will be cool enough for my pretty new boots.

My choices were pretty limited for wardrobe this morning because we have an overflowing laundry hamper, and most of the clothes in my closet are actually not fit to be worn. Yesterday I went through and removed all the maternity clothes I have no intention of wearing until I am pregnant again, as well as all the items that don’t fit right and I don’t foresee them fitting in the near future. That leaves me with about six tops, six to eight skirts, and maybe four dresses, plus whatever is in the hamper that I wore this week. That should be fine for me for a while. Maybe I won’t feel like I have nothing to wear because even though there aren’t many choices in the closet, I can choose any one of them. Before, I would flip through the hangers, rejecting all the options. I remember when we took our road trip from New Mexico to Ohio, we lived out of suitcases for like three to four weeks. That proves I don’t really need a lot of clothes.

I think that’s all I will write for now. Hopefully this week I will have some more good news about Agnes, and I will keep you updated. Also later this week, look for a new page on my blog. I’m thinking of projects to help my family while Jeremy is working hard at nursing school.

Thanks for reading, see you around the webs!

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What I Wore Sunday September 22

Linking up with Fine Linen and Purple, a bit on the late side, but hey the link-up is still live until tomorrow morning so why not slip in just ahead of the deadline?

100_1807Quick run down of the fam’s duds:

Me: dress from a thrift store in Billings, MT. Sweater from Target years ago. Boots are my new Clarks; ain’t they purty?

Stephen: the finest that thrift stores have to offer.

Agnes: sleeper second-hand from Cheering on Charlie. Puppy toy and car seat second-hand from Stephen.

Jeremy: I don’t know, but he always looks super sharp for church.

We got my dad to take a group photo. Agnes is openly crying. Stephen looks angry as all get-out, and Jeremy prodded me in the shoulder and commanded me to smile an instant before my dad snapped the picture. That’s because Liturgy was kind of horribly for us this week. Agnes was mad and she needed suctioning during Liturgy so Jeremy took two trips to get her and all her stuff into the cry room, and he was gone for a long time. While he was gone Stephen decided to make an icky diaper so I had to leave too. The rest of the time Stephen was a pill and kept trying to get us to leave the sanctuary and “go downstairs.” He got whiny and cried a little and refused any sort of distraction. So I have no idea what the readings were about and I couldn’t tell you anything about the priest’s homily. We didn’t stay for coffee afterwards because the last thing I wanted to do was “go downstairs” and reward Stephen’s begging, plus we were worried about Agnes. She didn’t look that great.

Turns out that was because she’s a bit sick. Yep, baby has a minor infection in her trach or airway or something. She is coughing a lot, producing lots of thick white secretions that need suctioned, and she requires more O2. I was convinced she would go back to the hospital since she’s been home for two weeks today and that was her previous record. Well, she’s still at home at least. We’re giving an additional antibiotic and cranking up the O2. Last night we couldn’t turn the O2 high enough for Agnes to wear the mist collar, so we had to put the HME back on, which for some reason, she seems to tolerate better. The mist collar is important, though, because it helps to thin out those thick secretions that can clog up the trach if you don’t keep up with suctioning! We did actually change her trach tube this morning to see if that would help, and it did. She still is struggling with the oxygen, and she is working to breathe a little more, and being little miss cranky-pants. But the pediatrician didn’t see anything urgently concerning yesterday when we took Agnes in, so hopefully this is something that Agnes can recover from at home.

The past few days have been really bad for me. I am soclose to the end of my rope, and I feel really overwhelmed. Jeremy has been working every night and my dad was away on a business trip, so the troops have been thin around here. Not to mention our nurse didn’t come on Sunday night so we took turns covering the time. It’s good for you, my dear readers, that I did not have time to write any blog posts. You don’t need an earful of my fatalistic depressive crazy rants. Hopefully things start looking brighter in the next couple days. Because my weariness is interfering with my ability to care for my children.

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What I Wore Sunday: September 15

Sunday 9-15-13 boot Sunday 9-15-13Today we had some positively Autumnal weather. It was nice and cool and crisp, perfect for the first time taking Agnes to church since coming home. Liturgy was earlier than normal because our priest is visiting family in Ukraine for a month, so we have a substitute priest who also takes care of his own parish in Solon. I bet he probably had to say Liturgy here, then scoot up to his own parish in time for Liturgy there. I am grateful he came; I like going to Liturgy, and he was a really good singer!

So, we had to get up and out the door in record time this morning, taking Agnes and all her gear, and Stephen, and we all had to look nice too! I took the opportunity to wear some more fall-appropriate clothes, including my new pair of boots!

The boots are Clarks, Ingalls Delaware style, in “grey” which is actually taupe. I purchased them through Amazon using a ton of change I found lying around the house. We took the change to a coinstar machine that has a feature where they don’t charge a service fee if you convert the coins to a gift card. So we used the coins to get an Amazon gift card, which I then used to subsidize the purchase of these super nice leather boots. They’re a real brand, and high quality, and I would not be able to justify their purchase if I didn’t have the “free” money to help! I wear boots almost exclusively in the winter with my skirts, so I needed to get a style that would be comfortable and attractive for everyday wear. I’m pleased with them so far! I think they will really hold up to my abuse!

The skirt is from a bag of clothes someone gifted to me when I was pregnant with Stephen. The shirt is Motherhood Maternity. I opted not to wear a veil today because I wasn’t sure what would shake down with Agnes and I didn’t want to worry about my veil getting in the way if I needed to emergently replace a trach tube or something. Plus, this week I got my hair cut for the first time in a year. I didn’t intend to go that long, but it was hard for me to find a time to do it! The stylist took five inches off the bottom, then used thinning shears to remove some the extreme thickness. I really like the look and feel of my new ‘do. I think I will always ask for thinning from now on!

Agnes did a great job at church. We got there a little early so we could set up her tube feeding before Liturgy started, and she pretty much snoozed through most of the liturgy. She did start fussing more towards the end, so I got her out of her seat to hold her and she calmed immediately. We lugged her travel bag, pulse-oximeter, oxygen tank, and feeding pump. We took up an entire pew! After Liturgy we went down to the basement for coffee and everyone was excited to see her back. They exclaimed over how big she is compared to the last time we took her to church a month ago. They said she is cute. We talked with a lady whose younger son was born with some issues similar to Agnes, and he is now a more or less healthy nine year old (I think he’s nine). He is an altar server and very sweet. He played with Stephen the whole time we were talking to his mom. We are so blessed by this church community. Everyone is so supportive, and no one seems freaked out by our special baby. A few of the ladies had the opportunity to hold Agnes, and she loved it.

Agnes has definitely learned that if she fusses and cries, someone will pick her up and snuggle. She adores being held, and pitches a royal hissy fit in her crib until someones comes to attend to her demands. It’s a good thing she is an adorable little miracle baby!

Linking up with Fine Linen and Purple. Go check it out!

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Nose Dispenser

brrrrrrrrrrrrrrrrrrr [that’s a drumroll, btw]

Agnes is coming home tomorrow!

Unless, of course, something goes horribly wrong. But that is not likely. Jeremy and I have fulfilled our caregiver trials, and my parents, too. The home care nursing has been totally lined up for all seven days of the week, and all Agnes’ equipment and supplies are in the house. Supplies that include…nose dispensers. The thing about tracheostomies is, they are essentially an open tube that leads directly into a person’s airway. People with normally functioning airways breathe through the nose and mouth, which serves to humidify and warm the air before it gets to the lungs. People with trachs bypass the nose and mouth, so the air that goes through the trach tube is chilly, dry room air. That is, unless there is an HME on the end of the trach tube. That is a Humidity and Moisture Exchanger, also known as an artificial nose. The HME traps moisture from a person’s own exhalations, then the new air passes through the humidified filter, thus supplying moisture to the new inhalation. It’s a pretty neat invention, and the noses come packaged in a box with a tear-away flap like you see on a box of tissues or on a box of pop cans. The HME’s come packaged in a nose dispenser. Hee. Hee hee.

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100_1766It will be a relief to have Agnes at home, though I confess I feel kind of numb about the news. It’s hard for me to feel strongly about Agnes news anymore, whether the appropriate reaction is excited, angry, sad, or whatever. There is just so much thrown at us, and so quickly, that I’ve become exhausted by extreme emotions. Plus, Agnes’ condition changes literally from hour to hour some days, so there is no point in investing in an emotion. Anyway, I guess what I’m trying to say is I am cautious and reservedly excited about Agnes’ homecoming tomorrow. And, I’ll believe it when I see her in bed at home. And, I’m well aware that it’s not impossible that something will come up to delay her homecoming. And, I’m afraid to feel excited because that will open up a place for me to also feel extremely nervousscaredterrified-paralyzedsaaaaaaaaaagh.

So tonight I will be organizing Agnes’ equipment and gear, and making sure I know where all her stuff is stored, and putting sheets on her bed, and cleaning house a little. Part of my task will be to weed through Agnes’ clothes and pull out the suits that are now too small, and the suits with zippers. Since I need access to Agnes’ g-tube every three hours, zippers are not practical unless I feel like leaving Agnes half-undressed for each feeding. I do want to give a shout out to Cheering on Charlie. I just got your package today. Thank you again for sending Agnes some snappy baby clothes!

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What I Wore Sunday: September 8

Linking up with Fine Linen and Purple.

We’ll do this “quick and dirty” as my Ear Training teacher in college used to say. Only she was referring to the sight-singing quizzes, and I’m referring to a blog post. Whatever, apples and oranges.

Stephen and me, in front of the iconostasis at Holy Ghost.

Stephen and me, in front of the iconostasis at Holy Ghost.

Liturgy was fine this morning, except the lady who leads the choir was out sick, so another lady started us on the troparion. But she sings alto so of course she started out with her own part, and all us sopranos were like “…..” so we sang the alto part too because we couldn’t find our way up to the soprano. For me, at first I didn’t realize we were all singing alto because I don’t know the music yet, and when I did realize it, I was stuck in the alto range with the alto notes in my ear and I couldn’t get out. Oh well. Now I know that when Anna leads, I should find my way up to the soprano part ASAP! Today was kind of interesting because in the Eastern Catholic calendar, we celebrate two events today: The Nativity of the Mother of God, and the┬ápre-feast for the Exultation of the Cross which occurs on September 14. I don’t fully understand the pre-feast thing yet, but I’m getting there. Anyway, we sang double stuff today to cover all the feasts. There were even two Epistle readings instead of one! Only one Gospel reading, though.

I finally managed to snag a photo of the interior of Holy Ghost. In the picture you can see the iconostasis, which is the gold screen across the front of the sanctuary. There are icons of major saints on the screen. As you face the screen, Jesus is to the right of the main doors, and Mary is on the left. I believe it is St. Stephen on the little door on the right, and St. Gabriel the Archangel on the little door on the left. The rest of the saints pictured are church fathers such as St. John Chrysostom. Across the top of the screen are scenes from Gospels. The painting on the dome above the sanctuary is an icon of Pentecost, when the Holy Spirit rested as a tongue of flame over each apostle and Mary the BVM. The altar is not in view; it is behind the doors of the screen. The little table directly behind me is called the tetrapod, and it holds an icon for the feast day or liturgical season, and a cross. So there’s a little about Eastern Catholicism for you!

After liturgy we went to the hospital to visit Agnes. My parents were there already, in the midst of their twelve-hours of care. So Jeremy, Stephen, and I just hung out for awhile before coming home. It was at that point that Stephen decided to turn on all his annoying. He did take a brief nap, but he was ornery before, and he was ornery after, and he’s in bed for the night right at this moment and he’s still ornery. I’m choosing to ignore. As soon as I’m done here I plan to grab me an adult beverage and a snacky-snack and chill with some “Storage Wars” or something of that ilk.

I do just want to point out one thing about my church outfit: I’m wearing shoes that are not black Minnetonka Moccasins.

The rest of my gear: Top from Old Navy. Green skirt from an Albuquerque thrift store. Veil I made myself!

Stephen picked out his own duds for church. I was flipping through his (four) nice shirts in his closet and he told me, “red shirt, red shirt.” Then I offered him blue jeans or navy slacks and he chose the navy slacks. Kid’s got style.

Finally before I sign off, the latest on Agnes is she continues to need a bit of oxygen. They did wean her off briefly a couple days ago, but when she gets made, her sats drop and she needs a bit of an oxygen boost. I don’t know if she will come off of oxygen before we bring her home this week. She needs less than she did at the beginning of the week, so it’s already an improvement from where she was. We’ll see. She will hopefully be coming home Tuesday; if not Tuesday, then certainly by the weekend. We’re just waiting on the home care nursing. Praying it all gets sorted out!

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