30 Minutes In The Life

I took Calf #6 in for a blood draw. We have done this every week, or 2 or 3, since November’s hospitalization. UGH. Thankfully, what needs to be done can be done with a finger poke.

We have a good routine going. She gets extra hydration via coconut water on the drive in. We register at the hospital and she carries her stickers. We stop to say Hi to Emma Jean on the way to the lab. (Emma Jean is a skeleton who resides in the doorway of the. . . ahem. . . Imaging Department.)

This time at the lab, she threw her stickers at the person at the desk (ugh, manners please child!) and we got a warm pack for her fingers. She chose her left hand this time. She peeled the warm pack stickers all by herself and got them tangled, but somehow managed to adhere the thing at least partly to her fingertips.

When they called her name, she walked in and climbed into the big chair by herself. Then I sat down under her and hold her. She can verify her name. Soon she’ll be able to verify her birthdate. We talked about why the doctor wants to see her blood and what happens after it’s drawn. We looked at the blue veins running through her hand. Meanwhile, the nice lady has decided which finger to use, washed it, and dried it. When she picked up the pokey thingey we start our deep breathing: breathe in like smelling a flower, breathe out like blowing out a candle. Just like in the Sophie book. We counted 1, 2, 3, then the poke. (Except this time it went on 4.) The nice lady let her hold two of the little purple-top tubes used to collect her blood. The purple almost exactly matches the color of her outfit. (No, that wasn’t planned.) This time, like the past 2 or 3, there are no tears. That’s amazing to me.

Once the tube was sufficiently filled, she held the gauze on her finger to stop the bleeding while the nice lady looked around in the back room for a nice bandaid. It’s an Elmo bandaid, yay! Then she was off to the prize box. This time she picked a beach ball that her big sis would later blow up for her. And, as she’s done every trip in these past months, she asked for a Biohazard bag to put her prize into. Usually she’ll also visit the sticker box, but they’ve been short on stickers lately and we’re in a hurry.

On the way out of the hospital she told me, “Next time I want an arm poke.” My heart nearly fell to the floor. We’ve been doing finger pokes instead of venipuncture because it has been WAAAAAAAAYYY easier on her (and me.) My second thought was to realize that she has accepted blood draws as a normal part of her life. It’s not “if I get another poke,” it’s “when.” Wow. What a brave little girl she is!

I didn’t have the heart to tell her yet, but her next blood draw WILL be an “arm poke.” She’ll be in for another bronchoscopy and that’s part of the routine. Thankfully, this will be done after she is anesthetized and she won’t feel a thing when it’s done.

What an adventure. Awful and wonderful, all at the same time.

Superbowl 50

This year’s Superbowl festivities at Moose House were a bit subdued.

The Bull had minor surgery nearly 2 weeks ago and is stiiiiiiillllllll recovering. He has had a rough, rough go of it. Ended up with a secondary viral throat infection (horribly painful), then a fungal infection, then a possible 2nd secondary viral infection. Lots of pain, lots of meds, lots of doctor visits (today marks 2 days since the last–and that’s a record!). Not a whole lot of eating for him (duh, sore throat) and he’s lost 15 pounds!

Oh, and he’s supposed to go back to work this week . . . not sure how that’s gonna work!😦

On top of that, for some reason we thought it would be OK to schedule a surgical procedure for our 3 year old during his second recovery week. In the Big City (about 4 hours away.) Which involved some early mornings, late nights, trying to sleep in an uncomfortable bed away from home, no naps, exhausted parents, and cranky tired Calves.

Needless to say, our typical Superbowl snacks didn’t happen. The Bull couldn’t eat them, didn’t want them. I didn’t have the energy to put them together or even the mental focus to follow a simple recipe (an unfortunate effect of the huge stress we’ve had these past few months.)

So we had canned chili mixed with sour cream (with tortilla chips for the calves.) Canned vienna sausages and corned beef hash. Coconut water for The Bull. Leftovers from the fridge and candy that had been in the pantry for a while.

But at least we got to be together (except when we sent the overly rowdy Calves out to play in the snow in the 2nd quarter.) More than we could say for some years (like 2013, when I watched in our littlest Calf’s hospital room in Portland.)

But it started with the national anthem. The announcer named the singer and I was worried. She has such a foul reputation! But I was pleasantly surprised–and impressed. She can actually sing. And was dressed.😉

Of course, as in years past, this is my favorite thing to do during the superbowl.

And there were some neat commercials. Like this one, that I really wanted to be about congenital heart disease or organ donation. Because this is the world where we live now. Sigh.

[Hyndai “Better”]

This one was really cute.

[SuperBowl babies choir]

This one hit a little too close to home for comfort.:/

[OIC is different-Envy]

I was pretty surprised that I actually recognized a couple of songs on the half time show. (I don’t follow pop music anymore.) Except that I didn’t recognize them from the originals, but from the Piano Guys’ re-hashing of the originals.😉

We did turn the tv off when the half time show turned into a wiggle-your-rear show. But that didn’t last long.

All told, we got through the Superbowl the way we’ve gotten through all the hard things life has thrown at us. Limping along together, as a family, as best we can, with a few good times thrown in for good measure. And some laughter. And food.

In Which There Is Whine, But No Cheese

Because I’ve not had cheese in a long time. No dairy either. Not since Nov 19, 2014! That’s 1 year and 1 week with no cheese, no yogurt, no milk. Hard to imagine, isn’t it?

(Fair warning. This is not a positive post. This is a whiney rant.)

My not-quite-three-year-old daughter was feverish and coughing and an emergency room visit showed her to be very, very ill. So she was hospitalized last week. She has a dreadful disease. Well, we think she has a dreadful disease. It’s not really a diagnosis, more a statement about what her body does.

Also they don’t know why this is happening. No known reason = idiopathic = terrible, terrifying condition.

She defied the odds and survived her newborn stage. She continues to defy the odds.

And she defies what should happen under these situations.

I’m tired. (Have been a while.)

I’m scared. (This is nothing new.)

I’m tired of being scared, and depressed, and worried.

I feel. . . like I’m drowning, or maybe like I’m suffocating. I can’t manage to put my head together or get stuff done. What am I supposed to be doing? How do I do it? When do I need to leave the house? What day is it?

What is wrong with my daughter?! Is the overriding question that constantly occupies my thoughts.

How much longer will she be with us?? For a while now (9 or 10 months) I’ve had this dread feeling that she won’t be with us much longer.

Her ‘diagnosis’ (I still can’t bring myself to accept it for her) isn’t pretty. Prior to the 1940s it was usually found by autopsy. Even now, survival rate isn’t very good. (With or without treatment.) She could die quickly or she could slowly decline before dying.

And there’s no national organization pushing for research and connecting families impacted by this thing.

She did so much better when we removed dairy and wheat from her diet but the doc insists that this is coincidental. And since she still breastfeeds (thank God!!) I began to avoid dairy in November too. In December we both started to avoid wheat.

Hence the cheese-less whine. Ya ever noticed how many comfort foods include dairy and/ or wheat?? Buttery mashed potatoes, macaroni and cheese, grilled cheese sandwich. Even chocolate. *sob* And there ain’t no equivalent substitute for cheese. (Sorry, Daiya.) Gluten free stuff is ok, but grainy and dry.

Meanwhile, she LOOKS healthy. She SOUNDS healthy. (Hear that? That’s my daughter screaming in the back seat. Yup she has lung issues. . . .)

This doesn’t make sense. In the hospital last week I told the doctor I was confused. “You’re not the only one.” Not really comforting. . . but then again it is, he’s willing to admit he doesn’t know what’s wrong with her. Or, what all is going wrong with her.

But we have to treat what we know is going on with her. *shudder* Even if studies show that the treatment does not have any effect on this condition.

Meanwhile we wait for the results of the last tests. And we wait to see if she is improving or, you know, not improving. : (

So Happy Thanksgiving to all. Count your blessings and hug your babies tight. That’s all I got.

 

Edited to add-Thanksgiving Day:
Before anybody says this: YES! I know she is a miracle! I know that we are so, so blessed to have her with us–even with these serious concerns. She really should have died on the day she was born. I know I should be grateful for every day we have had with her–and I am!

I’m tired, really tired, exhausted. And scared, very scared, terrified. Our family lived through the hell that followed her first medical emergency. And her condition is very likely to cause a repeat of that emergency.

I’m feeling panicky right now, even, watching her run around the living room while my dear Bull and the other Calves are watching a football game. I’m trying to cherish every one of these precious family times, knowing that we have no guarantee for more.

The Moose Is Back

Woo Hoo!! We have moose meat in the freezer again! Courtesy of this guy.

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(Wow, he’s growing up so quickly. Where’s the time gone??)

These guys, really. Can’t forget the brains behind this operation.

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On tonight’s menu, moose ribs. I had to check my own blog for my recipe.😉 Last time we had game meat was 2011. Crazy how time flies.

Ok, I’m off to start the ribs. Catch ya later.

Thankful for Spiders

It was late, much past bedtime. I’d been searching for something encouraging I’d read on a blog about children with medical (and other) special needs–because this is my life now–and coming up empty handed. I’d been putting off Calf #6 as she asked over and over, “Bob Looley mama?” (Bob and Larry; her name for Veggie Tales videos.) “No baby girl, we’re going to bed,” I said. Over and over.

But I wanted to go to bed. I’d woken up 2 hours too early that morning to her fussing. I didn’t want to wait for a 30 minute video. Instead I sang her a Silly Song. But she wanted to watch her movie. Now, late for bed and very, very tired, I just wanted to change her diaper, put her jammies on her, and go to bed.

The toddler, of course, was not having any of this. Deprived of her bedtime ritual of a movie and a snack, she was melting down. Why shouldn’t she? I ruined her schedule with my inattention to the time. She’d had horrible tantrums in April and May, but these had calmed down in June. Was this tantrum an escalation of the toddler years or because I wasn’t paying attention to her? Not that it mattered when your toddler has thrown herself on the bathroom floor and is kicking, screaming, flailing, rotating on her back, not wanting to be held or snuggled or comforted to calmness.

After I picked her up (receiving blows to face and legs and stomach) I noticed something moving. Black, small, and fast. A spider! I must admit to emitting a bit of a squeak when it quickly moved towards me.

“Look, sweetie, there’s a spider!” I said. I hadn’t shown her this kind of thing before. Her screaming, flailing, and kicking stopped immediately. Fastest. De-escalator. Ever. I put her down on the rug so she could see it.

Quickly, though, I learned that she wasn’t the type to be fascinated by bugs. She backed away quickly from the spider and gave a shriek. I think, though, that my interest in the bug made her more interested in watching, albeit from a distance.

The thing moved speedily towards the wall. I grabbed a shoe and, well, let’s just say I slowed the critter down.😉 Now it was on the bathroom rug and attempting to crawl into hiding. Calf #6 was on the other end of the bathroom rug showing signs of wanting to not be on the rug because of this wiggling, half-squashed bug. I used the shoe to sweep him off the rug and onto the floor, where we watched it for another couple of seconds.

Next thing I know, she grabbed the shoe to squish it. You go, girl! She was quite proud of herself. I grabbed a bit of TP and finished the job and the spider was history.

How empowering was that? We went from a full-blown terrible tantrum (and trust me, she’s had a bunch–it’s not just the terrible 2’s, it’s the terrible 2’s in medical hell!), to buggy freak-out, to a search and destroy mission in just under a minute.

And another few minutes after that, wearing a fresh diaper and her favorite pink-and-white striped monkey footie jammies, we were headed happily to bed.

Bronchoscopy, CT Scan, and Biopsies, Oh My!

Tomorrow we head to Portland for the next stage of figuring out what’s happening in my poor little Calf #6’s lungs. There she will see another pulmonary doctor for a second opinion. The Anchorage one is scratching his head with my daughter! In January we found evidence that her lungs bled (again, aside from the one that happened when she was just a few hours old.) Recent testing has shown no cause. That testing has included bloodwork, a CT scan, and *shudder* a lung biopsy. (She had a liver biopsy at the same time because of some ongoing liver concerns.) And she’s not been anemic, which is usually the case when a kid’s lungs bleed.

She’s a mystery, my baby.

Blood testing ain’t been fun (last month’s was horrific–took over an HOUR and SIX pokes!) but the worst has been March’s biopsy. She got herself a one-night stay at the hospital for recovery. Aside from being in pain, there were WAY too many times when someone (nurse, x-ray tech) would come and ask, for example, “Can I take your blood pressure?” She invariable replied, “No.” And the person would invariably ignore her and do it anyway. I. Was. Furious. Don’t ask her if it’s not optional!!

So I was not at all surprised when tantrums like crazy started after that. These are not our typical 2 year old tantrums. These are long (15 minutes) and she’s kicking and screaming and flailing and banging her head and having a very, very, very bad time of it. Worse, they are REALLY hard to stop. Pre-biopsy, sure she had times where she got upset for some reason. These? These are hellacious and MUCH worse.

I’ve come to realize that they are happening when she doesn’t feel that I’m listening, truly listening to her. *Sigh* That’s hard to do with four other little ones needing my attention. (And then there’s time for me. . . somehow. . . oh and I’m married, I guess I should spend time with Daddy too?)

Anyway. I’ve learned I can stop these tantrums early by being calm and gentle, giving her extra attention, apologizing for not listening, and asking her to repeat herself. (Except, I’m not a calm, gentle kinda mom. I’d love to be, but after all these years I think I just need to accept that it’s not my style.)

She’s a very verbal little person and fairly easy to understand so having her repeat herself isn’t too hard. Sometimes I can’t give her what she wants–and you know, she’s usually and amazingly OK with it.

Anyway, tonight I decided to give Calf #6 a bath and a massage. A lovely, nice way to connect with this precious little one and give her body some good, calm, pleasant attention. We’ll be leaving ridiculously early Wednesday for the appointment so I wanted to get to bed early. Unfortunately, we got started with the bath a little late. I forced myself to go slowly with the bath, though.

While washing her hair I told her we’d be going on an airplane in a few days, and how fun would that be? She made the sign for “plane” with her hand (we did baby sign when she was younger) and flew it around the tub in front of her. I think I then told her that we’d be going to see a doctor.

Then she shocked me. “Hurt Nahnoo,” she said, pointing to her biopsy scars on the right side of her belly and using the name she calls herself. “Hurt dogter offis.” After I picked my mouth up off the floor, I agreed with her. “Yes, we went to the doctor’s office and you were hurt there.” I asked her if she knew why they hurt her at the doctor’s office; when she said no I explained that we need to find out why she’s been sick.

She then talked about the Tigger bathtub toy. “Tiger hurt belly.” I looked. My jaw dropped again. Sure enough, on the right (and left) side of his belly was a pair of parallel stripes. . .scars, in the eyes of my 2 year old medically special needs daughter.

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I was amazed at her insight, how smart she is. “Yes,” I agreed, “Tiger did get hurt. Just like Nahnoo.”

So, About That Rest. . .

I don’t really do “new year’s resolutions.” But I guess you could say that mine this year is to learn to accept life’s happenings as ordained by the LORD. To realize that there’s a time for everything, the good things and the bad, and to not stress when hard times came.

Ha. That’s easy for me to say.

Our littlest Calf, just over two years old, has had various tests over the past few months to find out why she coughed so much last year. We ruled out cystic fibrosis and many other diseases, but found that her lungs had bled–recently and substantially. So then our question changed from “Why is she coughing?” to “Why was she bleeding?”

(Because lung bleeding, I’ve learned, is a reeeeeally serious thing and can damage my poor baby’s lungs or heart. Or cause, you know, a quick death, since you can’t live long if you can’t breathe and lungs filling with blood can seriously impede a child’s ability to breathe.😛 )

We have not yet found an answer to this question. We got home Friday from yet another trip to the Big City where yet another expensive and serious test shows no solid answers. We have ruled out a lot of diseases and conditions–the less serious and easier to treat ones. Unfortunately, because this leaves the more serious and harder to treat ones.

After the test, the doctor gave us three possible courses of action: a lung biopsy, systemic steroids, or some other unknown treatment. He wanted to talk with yet another specialist before making his decision. We hope to hear this week.

*Sigh*

Today I realize that I’m in over my head with this new mindset thingey. Time to call out the big dogs. I think I need to memorize a new Psalm.

I love Psalms, ya know? Chock full of the full range of human emotions, from highs to lows. And we’re kinda low right now.

Inspired by this song that we sang at church two weeks ago,

I bring you Psalm 121. In the Revised Standard Version after RSV, a terrible disease that gave this precious little girl an emergency room visit last year. (Oh, the irony.)

So when I’m anxious about my baby’s health or upcoming medical treatments or procedures, I’m going to be going over these verses.

Interestingly enough, I read a few weeks ago that this verse is often used as a traditional Jewish blessing for women in labor and for children. Cool, huh?

I feel better already. Truly.

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