My four year old

Tonight is the last night I put Cooper to bed as a three-year-old. How is that possible?! The last four years have seen some of my highest highs (basically every time Cooper smiles at me) and my lowest lows (seizures, every time he can't breathe, etc.). But I wouldn't change it. Cooper is awesome. And he's mine.

As Semmes grows and develops more and more, I often find myself playing the "what if" game. What if Cooper had been a typical kid? What would he be like now? What would my life be like? It's ridiculous and not fair to anyone, but I guess it's human nature to wonder. Most of the time I'm able to stamp down this melancholy part of myself, but I get sentimental around big moments like birthdays. And four is a big birthday.

There's something about Cooper being four that has me a little freaked out. For some reason, four just seems so big! FOUR. Even the word looks big to me (which is ridiculous, because three is a longer word). It might be that Cooper is now in the Pre-K class at school, even though we have two more years at The Allen School.  It might be that Cooper just looks like a big boy now. He's long and lean, just like a four-year-old.  Whatever it is, Cooper is a big kid now.  

Happy birthday, Cooper!  I love you to the moon and back!

Coper's Six Word Story

Six word stories.  Have ya'll heard of these?  Ernest Hemingway wrote the first (and therefore most famous) one.  His was: "For sale: baby shoes.  Never worn."  So much in just those six words.

NPR is kinda obsessed with these.  They do all sorts of theme ones when they do lengthy reporting on a given topic (race, violence, etc.), so I've heard a lot of them.  Recently, every day when I drive to and from Cooper's school, another school like Cooper's has a sign on their marquee inviting past attendees to submit six word stories for the school's 20th anniversary.  So I've been thinking a lot about Cooper.  And what his six word story would be.  So here it is:

Cooper's condition does not define him.

The (Dreaded) Grocery Store

"Let's wait and go to the grocery store as a family," he said.

"It'll be good to get Semmes out of the house this afternoon," he said.

Those words would come back to haunt us...

We had to wake Cooper up from his nap to go to Kroger, which was one problem.  We thought a thunderstorm was about to be upon us and we wanted to go before it started raining.  And we didn't go to our normal Kroger, which was another problem.  But we wanted to go to a Kroger that had a Caroline's shopping cart.  Those things blew up on Facebook a few months ago, and we figured out that a few grocery stores around us had one.  So we wanted to try it out.  Bad idea.  They're a little too big for Cooper.  His feet don't touch the bottom and the leg pommel thing is too wide so he has to sit with his legs splayed open.  I'm sure it will be awesome when he's older (and bigger) but it was not a good experience today.

We figured that if Cooper was riding in the cart, I would just carry Semmes in the Ergo.  At first, this was fine.  But when Cooper was melting down in the produce section, we thought it would be a good idea to play kid musical chairs (hint, hint: it wasn't).  First we went and got one of those shopping carts with the cars at the front that Semmes normally LOVES.  We actually tried putting Cooper in it at first, but he had had enough of sitting in weird things and just screamed louder.  So we got Cooper out, and I took Semmes out of the Ergo so he could sit in the car.  Nope. He started having a fit.

So now both kids are screaming.  Right at the front of the store.  Where everyone is coming in.  Awesome.  So Brad leaves to go get Cooper's stroller out of the car. We put him in it, put Semmes in the shopping cart (not in the car part, even though we still have the car buggy), and hope for the best.  I ended up beating Cooper on the chest (patting him with a cupped hand which does calm him but is really loud and sounds like he's getting a good beating) to get him to stop crying.  And for about five minutes all was well.

But then Semmes starts crying and trying to stand up in the shopping cart.  And he REFUSES (like goes limp) to get in the car part of the cart.  So I put the Ergo back on and hold him like that again.  A few more minutes of peace.

Then (really, this was just getting ridiculous) Cooper starts screaming again.  So we decide that I'll take them to the car and Brad will finish shopping.  So much for our family outing/getting Semmes out of the house excursion.  We're all done.  So carrying Semmes and pushing the stroller, I make it all the way out of the store and almost to the car before I realize that I can't collapse Cooper's stroller because of the stitches in my hand (heck, I can barely get them in the car and strapped in, but I was going to do it just to end the misery).  So I take them both back in, we find Brad, and the rest of the shopping gets accomplished as quickly as we can do it.

And then we get to the checkout line.  We were using a WIC check, which has very specific requirements, most of which we don't know since Cooper just started getting solid food again.  The problem today: cheese.  Just so you know, you can't get shredded cheese (no idea why) with a WIC check; it has to be block cheese.  It took two trips by the manager to the cheese section to figure that out.  By this time, we've been standing at checkout for at least ten minutes.  Semmes is FREAKING OUT: trying to grab the candy and magazines, screaming, and flailing his arms in very close proximity to my face.  It was terrific.

Finally, finally, we get everything and get home.  And the thunder we heard, the lightning and gray clouds we saw?  Yeah, by the time we get the groceries into the house, the sun was out and shining again.  Of course.  And that may be the last time all four of us go to the store together ever again.

A busy week

This week is going to be rough.  Between Cooper, Brad, and me, we have several doctors appointments, and I am having surgery on my wrist on Thursday.  Yikes.  Here's our schedule:

Tuesday:  Cooper has Audiology at 10:15, ENT at 11.  Then Brad has an echo scheduled for 2.

Wednesday:  Cooper has a dentist appointment at 9:30, and, oddly enough, I have one at noon.

Thursday: Cooper has his feeding specialist appointment at 8:30, then a pulmonary appointment at 1.  I am having surgery for carpal tunnel that day as well.  My sister Semmes is coming in to take me to surgery so Brad can do Cooper stuff.  I'm very ready for this surgery.  It's been a long time coming.

Anyway, prayers are needed that we all survive the week, that surgery and Brad's echo go well, and that there are no surprises on the Cooper front.  P.S.  Cooper continues to be in the best mood.  Here's a picture of him enjoying the Memphis Zoo the other day:

Cooper's Blended Diet

I've been away for a while.  This blog started as a way to have friends and family keep up with the adventure that is Cooper.  But over time, it has morphed and become so much more than that.  But is that what I want?  Semmes is a very active 15 month old.  And, since he's with me everyday, I have many more interactions with him.  My friend Sarah over at Ernie Bufflo wrote a post about this: about the guilt she feels that sometimes in her social media life it seems like she just has the one child, since Claire, like Cooper, goes to a developmental preschool and Etta, like Semmes, is at home with her.  Here's a link. She says it better than me.  Anyway, I've been having a blog identity crisis.

BUT, I did want to write about this.  Because I think it's awesome.  For the past week or so, we've been feeding Cooper REAL food through his button.  A friend was nice enough to let us borrow his Ninja blender, and we're in the process of getting a VitaMix, which basically liquifies food.  VitaMix has a really great program where if you are going to use their blenders for a medical reason they give you a huge discount (like really huge, like we're paying $247 for a $650 blender).  Regular blenders (believe me, we tried) just don't work.

Not surprisingly, there are many websites and Facebook groups dedicated to this topic.  And I did a lot of research before settling on a diet framework I think will work for Cooper and for us.  Every blend we've done has been enough for one day, and they've all had between 1,100 and 1,200 calories, which is exactly where he should be.  Basically, he gets this:

1 cup of starch (brown rice, quinoa, etc.)

1 cup of vegetables (1/2 cup of 2 different veggies)

1 cup of fruit (1/2 cup of 2 different fruits)

1/2 cup of protein (beans, chickpeas, tuna, etc.)

3 Tbsp of fat (olive, sesame, canola oil)

2 cups of whole milk

So today, his blend is this (the number of calories are next to each food):

1 cup brown rice (216)

3/4 cup peaches (38)

5 strawberries (20)

1/2 cup green peas (62)

1/2 cup lima beans (95)

1/2 cup black beans (114)

3 Tbsp sesame oil (360)

2 cups whole milk (300)

Today, his total number of calories is 1,205 and he has ~20 grams of protein.  This equals about 4- 8 oz. bottles.  We add 2 ounces of water to each bottle to make sure it will go through the tube (although this isn't too much of an issue), so he's not getting his midday free water anymore.  He's handling the increase volume AND the increased calories really well.  Plus, he seems to be in a much better mood. 

Here's what it looks like (before the milk is added):

With the milk:

All blended up:

In bottles ready to go:

Several people have wondered why we're doing this.  He's been eating PediaSure and has been fine.  But our bodies are meant to eat food, not scientifically processed fake formula.  At least, not for long periods of time.  Don't get me wrong, formula, the kind that is amino-acid based, totally saved Cooper's life.  But it's not meant for long-term.  Heck, I don't know what most of the ingredients are in a can of what he was eating:

I think this will be much better in the long run.  I'm excited!

My Favorite Moments

I love my boys.  And they are so fun.  But with each of them, I have one favorite moment every day.  Semmes is still nursing to sleep (nap and at night).  I love those very few minutes between when he falls asleep and I put him down.  He snuggles up against me, his face all scrunched up, heavy with sleep.  It's great.  He's doing it less and less as he is starting to eat but not fall asleep, so I put him down awake.  It stinks.  I'm going to miss that time with him.

My favorite moment of the day with Cooper is picking him up from school.  Cooper does this thing where he doesn't look right at something, but he still knows it's there.  I get down by where he's sitting and he waves his head back and forth, taking in his surroundings.  Then all of a sudden, he realizes I'm there, and he gets this HUGE grin on his face.  On really amazing days, he'll even laugh.  It's awesome.

  

Cooper Awesomeness

Cooper is having a great spring/early summer.  He's "walking" with assistance.  AKA he's taking some steps when someone is holding him up.  Yes, I have a video,  No, it won't download to my computer.  If I can figure it out, I'll post them.  Also, he's tolerating being on his hands and knees better.  Plus, he's voluntarily picking up toys and looking in the mirror.  It means that he's really starting to take an interest in his environment and wanting to explore what's around him.  Yay!

He will also watch movies now.  And he's picky.  For example, he really liked Turbo and Dumbo, but definitely did not like Hercules.  He kept pushing the iPad over and rolling away from it.  Fine.  So other than a small bout of croup this week, things are going really well.  Love him!