Having a Moment

I'm having an overwhelmed moment, one of those moments when I just don't know if I'm equipped for this.

When we first brought Lily home from this hospital (at 6 months of age), it wasn't long before she began occupational therapy through our local Birth to 3 program. When the therapist would update progress notes, she would ask me sometimes for my ideas on goals for Lily.

"I want her to catch up to Leah."

That's not so unrealistic. Most preemies do, right? Eventually? They "catch up", and years later, you'd never know who walked first, talked first, or waved first.

I'm starting to realize that Lily may never "catch up" like that.

Within the last month or two, Lily's Speech Therapist did some testing with Lily, and said Lily has some issues with auditory processing. I knew that she was working on memory things with Lily, and it kind of clicked how that has been an issue for us.

Between the ages of 4 and 5, most kids can follow multiple-step directions. Lily can't. You have to break it down for her, slowly, and sometimes she still can't remember everything. I would get frustrated.....thinking she wasn't listening, but I didn't really understand.

When you have a kid who is born with a lot of medical problems, and they survive, you feel so grateful and blessed that they're alive. Then you deal with the other stuff....results from them spending 6 months of their life in a hospital bed, 18 months with a tube in their neck helping them breathe, 3 years getting nutrition from a tube in their belly, and their whole life being so susceptible to respiratory illness that neither one of you even remember how many hospitalizations they've had anymore.

And, once you get through all of that, somehow you think things will get easier. But they don't. Because now you're dealing with the aftereffects of all that. Now you deal with gross motor delays like not being able to walk until age 3-1/2 or jump until they're 5. You deal with reflex integration delays, making so many things more difficult, like moving upper and lower parts of the body independently or left and right sides independently. You deal with speech delays, which should eventually get better....and they do....but they don't.

Now, we add in some auditory processing issues. It makes sense, when I read about it. Things start clicking in my mind. I see where the issues are. And, I wonder if I'm equipped for this, homeschooling this child. With one child who has issues, I'd really hoped it would be easier with Lily and Leah. But it's not looking that way.

So, I'm taking a moment. A moment to really feel.

And, then many more moments to pray.

"For you created my inmost being; you knit me together in my mother's womb.

I praise you because I am fearfully and wonderfully made; your works are

wonderful, I know that full well." --Psalm 139:13-14

"Everybody is a genius. But if you judge a fish by its ability to climb a tree, it

will live its whole life believing that it is stupid." --Albert Einstein

What I did today....

4:30 am...Lily climbs into my bed coughing and breathing so coarsely I can hear it without a stethoscope.

4:43 am....Up and attem. Taking Lily down for a neb and vest treatment.

6:00 am...Breakfast for Lily. The other two are still sound asleep.

9:00 am...Time for another neb and vest.

9:30 am....I am about to crash. Nap on the couch. Elise decides to make granola. Every few minutes one of the girls is asking me about something.

12:00 pm....The puking begins. Cough and throw up. Cough and throw up. Cough and spit out mucus. Cough, cough, cough.

The girls are watching way too much TV this afternoon, but I've decided to let it go. For today.

Holding, snuggling, cleaning up vomit. Cleaning up the kitchen. Squeeze in another neb and vest. More holding, snuggling, pushing fluid, cleaning up mucus and vomit. Coughing, coughing, coughing.

4:00 pm...I make soup. Eastern European Red Lentil. Perfect vegetarian healing soup.

Dinner, which Lily sleeps through. (Fine...she probably couldn't keep it down anyway.)

6:00 pm...Lily wakes up. More coughing, more throwing up, more cleaning up, more pushing sips of electrolytes (coconut water).

Make vegetarian Jell-o. Give another neb and vest. Read "The Sugar Snow" chapter in "Little House in the Big Woods."

And, I am one exhausted mommy with a whole lotta laundry to take care of tomorrow. Now, I'm going down to check on my sweet pea and relieve my husband (who's keeping an eye on her now).

Today, the laundry...

Lily is sick. (I am now wondering how many of my blog entries begin almost exactly this way....or maybe I don't really want to know.) And, today, I wash clothes like a squirrel collects and stores nuts for the winter.

We have been very blessed this year, in that, aside from a few little colds, Lily hasn't been *as* sick this year as she was last year. After last winter, I spent part of the summer researching....researching ways to boost Lily's immune system. So, I found some good vitamin D drops, and I read more about essential oils. We slowly weaned Lily off Prevacid and are now treating her GERD with ginger and cultured coconut milk (So Delicious). We have pretty much cut out most dairy for her. When she isn't sick, I'll let her cheat a little and maybe have a little bit of parmesan on her pasta or a little ice cream, but for the most part, at home, she's dairy free. And, she knows that dairy isn't good for her, and will ask me if something is okay for her to eat.

I've been making green smoothies, and ALL of my kids like them. Even my dad, who is quite possibly the pickiest eater on the planet and who doesn't like smoothies, thought my PB Mint Chip Green Smoothie was pretty good!

All of this has helped, and it has been so nice that we've all been healthier this winter.

But...now Lily is sick. And, today I do the laundry like the Mama Bear scrounges for blueberries on Blueberry Hill.

You see, there comes a point in one of these illnesses that things change. I don't even know exactly how I know when that point occurs, except I do. (It's probably that still, small Voice that tells me.) Lily may be sick for a week, and I haven't checked her O2 sats because they've been fine and it's a pretty mild bug, but one night Something tells me to check, so I do, and her oxygen levels are borderline and falling.

Most moms of chronically ill kids can probably relate to this. There comes a point in every illness where you know...you know it's either going to get worse, and you'll end up in the hospital, or they'll start to get better, and you'll avoid it. Every time we reach this point, I start doing laundry and baking bread....because I know I might have to spend a week in the hospital with Lily, and I want to know that everyone will have enough clean clothes and food to eat while I'm gone.

So far, Lily is doing okay. She sounds pretty coarse and gurgly--even after nebs, but her O2 levels are okay in room air...not as high as I like to see them but certainly not terrible. Now, I watch, wait, and do the laundry.

It's My Blo-og....

....and I'll vent if I want to,

vent if I want to,

vent if I want to.

You would vent to, if it happens to-ooo yoooou....

Tangent. Sorry.

One kid gets the sniffles.

My kid gets this:

Oxygen tubing snakes through my house.

Oxgen concentrators to be dealt with (it's been showing insufficient oxygen off and on all morning).

Moving regulators from the portable tank to the back-up big tank. Switching out tanks as they empty, which is often when you're on 5-6 liters of oxygen per minute.

Pulse ox machines that seem to be permanently alarming for low O2 saturations.

Percussive vest treatments.

Meds.

Please, if you're sick, if your kids are sick, stay home. Please. Play in the yard. Run through the sprinkler, but please limit your exposure. For my sanity.

Having my kid in the hospital over the 4th of July isn't exactly what I would have planned. Not that she's in the hospital yet, mind you. But I'm pretty sure that's where we're headed. Lily sees her pulmonologist in a couple of hours, and I wouldn't be a bit surprised if they end up admitting her. Which would make FOUR hospitalizations in less than a year.

Snuggly, sick sweety.

In My Head...

If you can overcome your fears, you can do anything.

Angry Birds is way addicting!

Mommy and Daddy will always be here to lift you up, help you down, and catch you when you fall.

Fun Mom Part II

Before I knew it, plans were in full swing. There were so many other things I should be doing-- school work or laundry, for example. So many things that had fallen by the wayside while Lily and I were at the hospital. Instead, I found myself offering to bake cupcakes and helped Elise clip flowers from the yard to put in her bouquet. That day, I was the fun mom.

The table was made ready.

Everyone must be appropriately attired in posh princess fashion.

There were Pretty Princess games to play.

Delicious Pineapple Right-Side-Up Cupcakes graced my china plates. Only the best for my little princesses!

And, really, what better way to celebrate Lily no longer needing oxygen, and Leah finally having clear lungs than with a princess party?!

Perfect!

Hospital x 3

If you follow me on Facebook, you probably already know that Lily was admitted to the hospital last Friday. She (and I) had been fighting some viral respiratory stuff for awhile, and eventually she was on 5L of oxygen through a nasal cannula, and it wasn't enough. So, for the 3rd time this year, we went to the hospital.

The room was beautiful! And, I'm not kidding! Big screen plasma TV's, On Demand movies, nature slideshows, a pretty comfy sleeping area for me that completely curtained off from the rest of the room....SWEET!

Also, Friday afternoon at about 2:30 - 3:00, the hospital had just adjusted its visitors policy, so Mark and the girls were able to visit every day and stay as long as they wanted. {YAY}

Lily was discharged yesterday afternoon.

And, today, it's back to business.

The laundry didn't stop reproducing while we were gone.

The kids still need to eat. And, I no longer have access to room service (or cable TV and On Demand movies for that matter)!

Lily is still on a little bit of oxygen as needed. Sometimes she needs it, and sometimes she doesn't. We're still doing nebs every 4 hours or so and vest treatments.

It's busy.

Yet, despite the bickering and whining "music" in my ears this morning, it's good to be home!

My Realization

I came to a realization yesterday.

In my heart of hearts, I am not a fun mom.

I am not one of those types who wants her couch cushions trampled on, so her kids can make forts out of them (that's how my last couch got wrecked...well, that, and an unfortunate incident involving Leah and a Sharpie). I do not want my living room floor cluttered with every single cotton pickin' toy we have in the house. I cringe at my husband's idea to build a climbing wall in our 2-story entry way. I don't like mess. I don't like doing 5 extra loads of laundry each week because my daughters want to change clothes 4 times a day. And, I really, really don't like mud.

Yet, despite all of this, I also desire to nurture my children's creativity. Leah and Lily are both exceedingly imaginative and resourceful when it comes to their toys and play. I don't want to stifle that, but I do have to assist them in reorganizing the mess when they're finished. Elise has the big ideas. Currently, she's planning a princess tea party to be held in our front yard....

...at some point in the future....

...whenever I get around to baking cupcakes for it.

I want to be a fun mom. I pray that God will help me to be a fun mom. And, sometimes, I have to bite my tongue when I want to say "no" to one of their harebrained schemes.

So, yesterday, while Lily and I were lazing around with our coughing and fuzzy heads, I told Elise and Leah they could water my plants in the backyard.

Now, if you knew my children, you'd pretty much know that anytime water is involved, there's likely to be trouble. Still, I hoped not too much trouble.

Elise soon tired of watering plants, and began using water to clean out the old sandbox. (We had told them we'd try to get new sand for it this year.) I suspected this could be trouble, but I was still hoping for the best.

Then I overheard my daughters say something about mud. And, I saw they were wearing their bathing suits. Then I thought, "Oh, how much mess can they make?"

I'll let the photos speak for themselves....

I was going to use the hose to spray them off. Unfortunately, the hose didn't survive the winter.

The watering can performed admirably though.

And, all the while, sweet, little Lily watched from the rocking chair.

Reflections...

I had a glimpse yesterday.

Just a glimpse of what our life might be like if Lily weren't part of our family. If she wouldn't have survived pregnancy, babyhood....

...toddlerhood...

...or even H1N1 last fall.

We were out at the Olive Garden, and suddenly, my eyes were full of tears.

It was only a second, but in that second, I was so thankful for our family. Thankful that Lily is part of our family. And, I leaned close to her ear and whispered, "I'm so glad you're part of our family." She snuggled a little bit closer, and whispered, "I love our fam-i-ly."

So, I prayed, and I thanked God for entrusting us with these precious girls...even though I feel grossly inadequate most of the time.

My Valentine's Day

My Valentine's Day started around midnight, when I packed a bag, gave 2 nebs and a vest treatment, snoozed for 3 hours on the couch, gave another neb/vest treatment, held Lily, slept in the recliner, tried not to get sick, gave more nebs/vest treatments, called the pediatrician, took a shower, drove Lily to the hospital, spent 5-1/2 hours in the ER at Children's, and got admitted.

Lily had RSV.

She did not get *as* sick as she had been with H1N1 back in October, but it's always scary when asthma kids get sick.

Tuesday was kind of her turning point, where I could tell she was starting to feel better. Yesterday was a very good day. She laughed, she played, she stood beside her bed, and she was discharged late afternoon. It was a very good day.

Last night, I crashed in my bed around 8:30 pm, too sick and exhausted myself to unpack anything, work on the church bulletin, or even watch an episode of "Chuck."

Very few things are as sweet as sleeping in your own cozy bed, on your own cozy pillows, in a dark room, without interruption.

Home, Sweet Home!

Not Me Monday!

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

Have you ever made little notes in your head about things to include in your "Not Me" post, but when Monday arrived, you decided you were simply too tired to be bothered with posting anything on your blog at all? Yeah.....me neither.

And, a few weeks ago, when I took Elise to the dentist, the dental assistant (and her assistant) did not have to carry Elise back into the office while she (Elise) kicked and screamed, "You are mean people!" Nope, that totally didn't happen, no matter what the witnesses may try to tell you!

Moving on....

Twice in the last week, there is no way I was caught with my pants down unprepared for potty accidents while out on the town. No, I did not reach around to unbuckle Lily from her carseat only to encounter dampness on her jeans, after she had just gone potty before leaving the house. We walked into the clinic, and, thankfully, I never had to usher my 3 children directly to the bathroom in order to change Lily out of her wet items. I did not place any wet items into the sushi wet bag (loaned to me by a friend), nor did I give her a sponge bath with flushable wipes before putting dry undies and rubber pants on her. Last, I am so glad I did not have to think fast and have her step into her hoodie like a skirt, zip it up, and tie the sleeves around her waist. And, Lily did not perform all of her PT exercises pants-less. Nnnnope! Oh yes, I am so glad I am always prepared for these incidents! In fact, I'm a regular Girl Scout! (or is it Boy Scout? What-ev...)

Yesterday, after my daughter told me she'd had a potty accident at the apple orchard, I didn't just let her keep picking apples since she was already wet, allow her to ride in her carseat all the way to our next stop (because I hadn't forgotten about it), then ask my husband, while we were walking in, if it was really obvious that Lily was wet. No, I would never do that! Seriously, I am way more on top of things! And, thank goodness for clean jeans in the diaper bag! Thank goodness for that!

Oh, and I never ate chocolate raspberry cake for breakfast! Not me!

One Day in June....

Elusive. That's probably the best word to describe the goal I set for us this past summer. It's something I've been working on, (off and on) in one way or another, for five years! We've taken breaks, decided that perhaps readiness is the issue, and the final achievement of this goal still eludes me.

Elimination Communication, otherwise known as EC, is something I've been thinking more about these past few months. Admittedly, when I first heard about it, I thought EC was a little silly. There is a certain convenience associated with diapers that cannot be denied! Nevertheless, it seems that each time I've potty trained one of the girls, I use this method to some extent. I mean, as a parent, we do tend to observe our children's cues and tell them to "Run to the potty!" when we see them look like they might need to go. If you start when they're even younger, it stands to reason that they wouldn't get used to the feeling of a messy diaper touching their little bottoms and would tend to dislike that feeling.

When you take your first unassisted steps at age 3 but don't start walking independently until you're 3-1/2, it also stands to reason, that you would be well used to the feeling of messy pants, and it just wouldn't bother you all that much. Or, that would stand to reason if you knew Lily and Leah, because not caring if they're wet or poopy has (or had, in reference to the latter) been an issue and a potty training hindrance for both girls.

Additionally, I've always felt that the ability to be independent plays a big role in potty training, and that having those gross motor skills (like walking) would be a huge help in the bladder control arena. EC-ers would probably disagree with me, and at this rate, I think I might even agree with them!

And, who ARE these people that say you can potty train your child in just one day or even in a week?! That has never been my experience! Nev-ver! As much as I would like it to be easy, even just once, potty training has not at any time been a painless experience for us. And, "they" say girls are supposed to be easier to train than boys.

I laugh in "their" faces on that one!

Okay, so back to June. One day in June, I ran out of pull-ups, and I didn't buy anymore. Lily has been in panties with rubber pants for over 3 months now, and she is still not trained. I am relatively trained (I say relatively because there are times when I forget to remind her for a couple of hours, and then she will usually have an accident. Heck, even when I do remind her, she still has accidents!), but she is not.

Yes, things are better now than they were at first. Perhaps, 10% of the time she will tell me when she has to go, as opposed to the 0% when we began. It's an improvement, to be sure, but we still have a loooooooooooong way to go!

I try so hard not to get frustrated by her failure to advance. Really, I do. Eventually, I know she'll get it. She must! Yet, "these people," the ones who say never to get frustrated when your kids have an accident and to always stay calm about it, I'm pretty sure they never had to do this THREE MONTHS with very little improvement!

Don't get me wrong, she has gotten a little better, no doubt. Unfortunately, she still has a ways to go. I'm certain Lily is fully capable of succeeding in this. She stays dry all night, pretty much every night. My guess is going in her pants is a habit, and like any bad habit, it will take awhile to break it.

So we persevere.

Anyway, after all of this, I really think elimination communication doesn't seem like such a bad idea. In all seriousness, it's no different from what I'm already doing!

And, if we ever have another baby, don't be surprised if you see me setting my little newborn on the potty before putting her cute, little cloth diaper back on her!

Oh, and if you're still wondering what on earth my goal was, 3 fully potty trained girls was it. Well, as Meatloaf says, "two out of three ain't bad....." [grudgingly] I guess.

Disaster Area

In the spirit of *keepin' it real,* the images to follow are what my house looked like earlier today. If you can't handle the chaos, you might want to leave now.



Oooookaaaaaay, don't say I didn't give you fair warning!

Bags of tomatoes, bowls to hold unwashed tomatoes; pots to hold washed, cored, and scored tomatoes; pots to blanch tomatoes; bowls of cold water to submerge blanched tomatoes, and peel off the skin; trays of tomatos, onions, garlic, and spices ready and waiting to go into the oven to be slow roasted; a tray of French bread, rising, and waiting to go into the oven when the other loaf is finished.....

...and, it gets worse. This is what I've been trying to work on for the last few weeks, in between sick kids, homeschooling, and other projects.

Baby clothes. Here is a basket overflowing with clean, freshly washed baby clothes.

And, here are the piles I still need to go through. They were stacked up neatly yesterday, and I'm not sure who knocked them over....either the cat or one of the girls would be my guess. The baby, baby stuff I've already been through, and most of that will need to be washed. I've stain treated the items that needed it, and now it's just a matter of washing them...with my tiny washer and inept dryer.

More clean clothes, piled up on the new couch.

And, this is what the girls were doing while I was busy in the kitchen today.

...just a few of the things that have been keeping me away from blogging lately....just a few!