Laughing, Weeping, Living

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

7 Quick Takes: October 25

Hi everyone. This week the 7 Quick Takes linkup is being hosted at Clan Donaldson. So I’m joining in at that fun blog.

1. The great city of Cuyahoga Falls, OH–as well as many other cities in the area here–have a scheduled date and time for Trick Or Treat. Cuyahoga Falls is trick or treat-ing tomorrow from 6 to 8pm. I think it’s great there is a specific time and date. That means we don’t have to guess who is going to be ready when and hang out with our bowl of candy from 4pm to who-even-knows pm on Thursday night October 31. When we lived in Billings, there were trick or treaters really early in the afternoon. I remember specifically asking Jeremy, “when does trick or treat start?” and he looked at me like I was from a different planet. I guess I am from a different planet: the planet Northeast Ohio where the cities are kind and smart enough to schedule trick or treat. I know I would rather not take my kid out on a weeknight. Or conversely, show up at someone’s house at 5pm and they don’t even have their candy ready yet. That would be embarrassing!

2. On a similar note, Stephen’s adorable penguin costume is ready! I bought a black hoodie sweater, black sweat pants, some white flannel fabric, and a few sheets of orange craft foam. I sewed a white “tummy” to the front of the sweater, made feet from the foam that will tie around Stephen’s ankles with elastic, and I sewed eyes and a foam beak to the hood of the sweater. The “tummy” is pretty secure; I made sure it was quality stitched so he can wear a cute animal sweater after Halloween. I’m not sure about the eyes staying or not; I might add little ears so his sweater is too cute to even bear. Haha. “Bear.” Get it? Don’t worry, I’ll take pictures!

3. Speaking of Stephen, he has a fun new game to play in the bath. It’s called “monkey pack” and this is how you do it: 1. slap a washcloth on the inside wall of the tub. 2. layer on some foam bath toy monkeys. [optional 2b. count the monkeys]. 3. slap a second washcloth on top of the monkeys. 4. fold up the monkey pack and stuff it in a little bath toy bucket. 5. announce “monkey pack!” 6. Repeat.

4. Agnes is officially coming home on Monday! We are pretty excited. The home nursing agency was not able to coordinate our private duty nurses over the weekend, which is fine and pretty much what I was expecting. Agnes moved up from the PICU and now she is on the floor where all the trach kids go who don’t require intensive care. I will miss the PICU staff! I really like the nurse practitioners down there especially. The staff on the floor is great too, but it is a lot busier and the nurses all have more patients to care for. In the PICU, nurses only ever have two patients, so it’s a difference. Plus, our PICU room was nice and big with large windows. Sigh. At least it’s only for a couple days.

5. I just want to say a bit about the power of prayer. One week ago, Jeremy and I had a big meeting with the PICU doctor, the pulmonologist, some Palliative Care people, and a PICU social worker about Agnes’ long term care, and what the plan was for her treatment. No one could say whether she would depend on a ventilator or not. They had not yet started weaning the vent settings. Two weeks ago, Agnes was completely dependent on a ventilator, she was barely breathing on her own, she required regular doses of sedative because when she was awake, she fought the ventilator and became distressed. We were seriously talking about how we would deal with a baby on a ventilator, and planning our lives around a couple months of hospital time. Three weeks ago, Agnes was close to death. I mean it. They couldn’t give her enough oxygen; they couldn’t sedate her enough; they couldn’t feed her stomach food.

And today she was breathing totally on her own, with exactly the same equipment and oxygen and medicine (except for one med) she had when she was at home last month. She was alert, looking around her room, reacting to me and to Stephen, responding well to occupational therapy, tolerating her bolus feeds, maintaining a decent oxygen saturation.

Of course the doctors and nurses were working hard, but everyone praying for Agnes was working harder! Someone told me today that she honestly didn’t believe Agnes could kick the vent this time. Agnes did kick the vent, with the help of your intercession! Yesterday Jeremy and I prayed our rosary for the intention that Agnes would come home soon. That same afternoon the NP told us she wanted to discharge Agnes today. Prayer works. Miracles are real. Agnes is a miracle and a living example of the power of prayer.

6. Now to totally change the subject, my dad brought home the most enormous head of cabbage I have ever seen. ever. I have been intending to make Ukrainian style cabbage rolls with some of the cabbage, but I keep missing my opportunity. Jeremy offered to make some coleslaw, but there are still 4 more pounds of cabbage to deal with. Does anyone have any good ideas?

7. Stephen has thrown fewer tantrums this week, or at least, I have paid attention to fewer tantrums. I’m also trying something new: I ask him what he wants to eat for dinner/breakfast. So far he hasn’t requested anything objectionable. Yesterday he wanted “cereal” so I asked, “oatmeal or cheerios?” and you can guess what he wanted. This morning he wanted “jelly. peanut butter and jelly.” but he asked for it in a cute toddler voice that I can not transliterate. I am still so thankful he likes eggs again, and we have started giving him a gummy vitamin each day. He always requests “more” vitamin. I’m totally jealous of his vitamins.

Okay, so not very quick takes, but still, I hope interesting takes. Head over to Clan Donaldson for more!

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What I Wore Sunday: September 29

Linking up with Fine Linen and Purple.

Liturgy this week was a lot better than last week. Agnes fell asleep soon after we arrived at the church, and she slept through most of the liturgy. That means she wasn’t awake to be coughing and crying which is what leads to the need to suction. So she was easy to manage this week. Stephen was also better behaved compared to last week. He managed to bring a lightweight wood puzzle as his toy to church, which I’m not sure how we let that slip into the car, but we did! The puzzle didn’t cause that much disruption, as Stephen only dropped the pieces on the floor a couple times. After Liturgy, we did go down for coffee and so Stephen could play with the toys. That’s where the problems started: Stephen didn’t want to leave to come home! He cried the whole way home in the car. Jeremy distracted him a little by talking about pumpkins, but Stephen remembered he was mad and went back to fussing.

I’m really glad the recommended method of dealing with a tantrum is to ignore it. That’s what I want to do anyway!

I think the tricky thing with Stephen is that he generally listens to explanations and follows instructions, and willingly accepts suggestions. But, when he’s in his mood to tantrum, he just gets more and more worked up the more you try to talk to him, especially if you are saying things like, “why are you crying?” “what do you want?” or anything that is obviously designed to distract him from his fit. So, ignoring Stephen when he is in a snit really is most effective, I think.

2013-09-29 15.04.19Anyway, yesterday we forgot to do the picture right after church, but we remembered a little later, while we were enjoying our afternoon coffee. I’m teaching Stephen how to make coffee, and this time I made him a tiny cup that was mostly milk. He didn’t want to drink it which is a shame, because it would have been really cute!

I’m wearing a thrift store shirt with cut out tags, Old Navy pants I found in the Albuquerque Savers, and my beaded Minnetonka Moccasins. I love that shirt; it is loose and flattering, and I never feel self-conscious about my appearance when I wear it. The moccasins are at least 5 or 6 years old and still going strong. The beaded design is that of a bird.

Stephen is wearing size 3T clothes. He’s a huge kid. He’s been wearing 3T pajamas for a while, but he’s just now starting to fit into the 3T pants. We have to roll up the cuffs, but otherwise they fit.

And on the other hand, Agnes is a little peanut. She still wears newborn size or 0-3 month size sleepers. We have to roll up the arms of her clothes. The geneticist said she has shortened upper arms as part of her condition. I thought we just had to roll the sleeves because she’s a baby, but turns out she has an actual need for shorter sleeves. Whatd’you know?

 

I’ve really been enjoying Liturgy with our substitute priest. He is a great singer with a firm voice, clear intonation that is easy to follow, and an ear for the “key” we are singing in. Since the whole Liturgy is sung, these are all very important talents for a priest. I’ve always believed that anyone can learn to sing…I wonder if Fr. Sal would like some lessons to brush up when he returns from Ukraine? He’s not a bad singer, but a bit more confidence would go a long way. The choir can bully the key to where they would like to sing, so sometimes there is a fair portion of the Liturgy that sounds out of tune while the choir and Fr. Sal work out an agreement about the key to sing. Fr. Sal should be the boss of that, and if he sang with more confidence, the choir would be forced to sing in the key he chooses!

Maybe, just maybe I’ll mention it to him when he returns!

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7 Quick Takes: September 27

As usual, linking up with Jen Fulwiler at Conversion Diary.

1. I apologize for having an exceptionally quiet week around here at the blog, but seriously, if I had tried to write posts they would have looked like this:

or this:

2. Boo hoo. Did someone say Terrible Twos, because that’s exactly what I’ve got. “Time to eat lunch.” Tantrum. “Time to go upstairs.” Tantrum. “Time to go to bed.” Hoo boy. Biggest tantrum ever. Last night was definitely not my finest hour when it was time for Stephen to go to bed. I lost my temper and I’m ashamed. And scared of what will happen tonight. Can he just magically already be in bed without me having to put him there?

3. Speaking of Stephen, he’s currently obsessed with this movie.

It’s pretty cute, beautifully animated, and about penguins which seems to be the main draw for my kid. He loves penguins, for some reason. I haven’t pushed that animal on him, but he does have one story book about penguins and as far as know that is the root of his penguin exposure. Now he loves them, and he requests this film by asking, “watch penguins? dee bee dee bee dee penguins?”

4. A physical therapist came to see Agnes today to get her signed up for in-home physical therapy. She seemed pleased about Agnes’ development so far, telling us that Agnes is pretty much in line with where she should be for a 3 month old baby. That was thrilling for us given all the talk about developmental delays and physical limitations. We aren’t expecting that Agnes will grow up to be normal, but we are happy to hear that she is not currently far behind. Hopefully she will be able to continue exceeding expectations! The therapist also said that Agnes demonstrates great alertness and eye contact. We told her how Agnes seems to anticipate negative experiences like car rides, diaper changes, and suctioning, and the therapist said that is really wonderful evidence of advanced cognitive skill. She said young babies can’t usually anticipate. So, we’ll take that news at face value and not put any additional weight behind it, but we are very happy to have heard this news.

5. I’m planning to dress Stephen as a penguin for Halloween. I think it will be cute! I think he will love it! I haven’t decided for Agnes yet, because she is most likely not going trick-or-treat. I was thinking an alien, but no would see the costume except us. And everyone on the internet who looks at the inevitable picture.

6. Tonight for dinner I followed a recipe and made Tilapia Curry with Basil. I realized as I was putting the dish in the oven that I forgot to add the curry paste. Fail. I guess I actually made Garlicky Tilapia with Basil. Because that’s about all you can taste. It actually tasted okay, but it would have been better with curry paste.

7. I did manage to get Stephen to eat his dinner. He did not want to when I set the food on the table (“no. no. no.”) but I ignored his objections and ignored him. I ate my dinner and eventually he came over and sat down. I had to leave to attend to Agnes’ demands, and while I was gone, Stephen ate up his plate. Win one for mommy. Hopefully I can manage bath time with as much grace.

For some quick takes that are not about whiny toddlers or whiny mommies, go see Jen.

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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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7 Quick Takes: September 20

Hi y’all. Linking up with Jen at Conversion Diary.

1. I read Jen’s quick takes before coming here to write my own, and her take about Delena’s take about Myers-Briggs Theme songs is really interesting. Right now I’m listening to Jen’s chosen theme song for her personality type, INTP

It’s pretty interesting. My personality type is ISFJ, according to the super quick test I found online. I wonder what my theme song would be? I will strenuously consider this and report back when I figure it out.

2. So a couple days ago I wrote about Stephen refusing to eat, and taking pictures helped him forget his tantrum and eat his meal. It has worked a couple times since then, but I think the novelty is wearing thin.

stephen soup stephen sandwich

3. Last night Jeremy and I changed the sheets on our bed. Sashimi the Cat helped.

cat under blanketcat under blanket 2

4. I made a dish from the Everyday with Rachael Ray Magazine again tonight, but this time it was one of her “30 Minute Meals” and I followed the recipe exactly. Maybe I’m not the first one to discover this, but for real, her idea of “30 minute” meals is totally wonky. I knew this as soon as I looked at the recipe, and I know I’ve thought this before on the other occasions I’ve contemplated making a dish from that section of the magazine. This one was Spaghetti with Cauliflower and Tuna. Early this afternoon I took almost an hour prepping some of the veggies: cutting up the cauliflower, separating the parsley leaves and stems, and dicing the pepper. Then when I got started this evening, it took about 45 minutes active cooking time. Granted the recipe says things like, “two shallots, finely chopped. Four garlic cloves, finely minced.” But still, the only way you could do this recipe in 30 minutes was if you cook it on a 30 minute Food Network program and have a sous chef prep all the veg before the show starts.

5. Also, that recipe above requires a “6 to 8 oz can of sustainable tuna.” What, will the recipe fail if you use unethically-farmed tuna cans in your dish?

6. Has anyone ever done a HomePath mortgage or HomePath Renovation Mortgage to get a house? Jeremy and I are looking into it because you can get a house for as little as 3% down, and the renovation mortgage allows you to borrow what you need to update a house as part of the whole mortgage package. There are a ton of houses “with potential” around the area, and we agree except we lack the capital to invest in a property that needs attention. And we like the low down payment!

7. We took the kids out on a short trip again today. Agnes really extremely hates riding in the car. She starts crying as soon as we put her in the car seat, and keeps going and going the whole time we’re driving. She does get tired and she has to take breaks, but when she feels rested she starts “screaming” again. She flails her arms, her hair gets really sweating, she kicks her feet, bubbles form at her mouth, she squeezes her eyes shut and turns pink. The pulse-oximeter beeps and beeps. It’s actually quite comical. It’s fortunate she makes very little sound when she cries because that would take the situation from comical to tragic and someone-please-for-the-love-of-god-make-the-baby-stop-crying! territory.

Go to Jen’s page for more quick takes. Thanks for reading!

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Treasure Every Moment

Today we had to eat lunch and we served spaghetti with meatballs, and a glass of milk, and this was just totally unacceptable to Stephen. I think the underlying issue was that he wanted to keep watching “Yo Gabba Gabba” videos, but he came upstairs willingly enough when I told him it was time for lunch. Anyway, when we tried to sit him down to eat, he pitched a fit to end all fits. Jeremy and I ate our delicious lunch while Stephen rolled and screamed and cried on the floor, and we got to talking about how this was probably one of those moments we are supposed to cherish. “Cherish each moment; they grow up so fast.” Yadda yadda. Then I decided I should take a picture of Stephen throwing a tantrum so I could post it online and be like, “treasure every moment, ha ha. Even this one? ha ha.” So I got out the camera and Stephen was like:

I noticed you were trying to capture an action shot.

I noticed you were trying to capture an action shot.

Then I told him to lay down on the floor and cry some more because I was trying to put together a really good, snarky type of blog post. So then he was like:

Actually, I think this is funny.

Actually, I think this is funny.

At this point I realized that the take-a-picture thing might actually be able to snap him out of his fit, so I was like:

Now mommy wants to take a picture of you eating. Come sit on your chair.

Now mommy wants to take a picture of you eating. Come sit on your chair.

So he did. And he ate.

Isn't it fun to eat your lunch?

Isn’t it fun to eat your lunch?

Then we tried another one:

Now mommy wants to take a picture of you drinking your milk like a big boy.

Now mommy wants to take a picture of you drinking your milk like a big boy.

And all this time, Agnes was over in her crib, not wanting to be left out of the fit-pitching fun:

Waa. It's my three-month birthday and no one is serving me cake! Waa.

Waa. It’s my three-month birthday and no one is serving me cake! Waa.

Happy three-month birthday to Agnes! She is doing well at home and we are all getting used to her being here. The night nursing is going well and Jeremy and I are thinking all our future kids should be trach babies so we can sleep through the night.

 

 

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