Four and-a-half Years Old

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Here is our sweet, funny, smart, beautiful, persistent, and loving Emmy. She is everything I thought she would be. Not at first, though. Not when we found out about Williams syndrome. I wasn’t ok with the diagnosis at first and I thought, “Please just let me be ok with this by the time she’s 8 years old.” I gave myself ample time to let it sink in.

Turns out that I only needed a year, but I’m glad I gave myself 8 because I think creating space is important.

I was ok with it after a year. I was totally accepting of the diagnosis, and I was completely in love with Emmy–just as she was.

And then she changed. Into more. And more. And more. And more. At four-and-a-half years old, she puts me in a state of constant awe.

She is, truly, as sweet as her smile shows.

She shares EVERYTHING. I took her to the library, and the librarian gave us a donut. Emmy said she wanted to save it until we got home, so she could share it with Charlotte.

She will readily give Theo a toy that she’s playing with–no hesitation. “Here, Theo. Have this.”

She says things like, “I love you so much, Mommy” and “You’re the best mommy ever.” (Which isn’t true, but I love hearing it nonetheless.)

She is also witty and sly. With a more crooked version of her beautiful smile, she’ll goad Charlotte on. She definitely knows how to push buttons, but she does it in a funny way. If we’re eating a more adult-friendly meal like pot roast, she’ll knowingly say, “Good news, Charlotte! We having mac-and-cheese for dinner!” Then Charlotte will get all pumped up…only to be disappointed when she reaches the table. Emmy finds that hilarious.

Or before Christmas, I was telling the kids that Santa brings presents to children who are nice; not naughty. So of course Emmy would offer, “Naughty like Charlotte??”

Charlotte is far from naughty, but Emmy totally knows that and loves to try and get under her skin sometimes.

Emmy is very smart, and I feel for her because she KNOWS a lot, but her hands don’t work fluidly with her brain quite yet. So while she knows all the letters, writing is very difficult for her. I watch her hands shake slightly as she struggles to hold a pencil. Drawing a smiley face is an unbelievable accomplishment. I recognize how frustrating it must be to have your mind go one direction and your body another.

But, boy, is she persistent! This kid DOES NOT GIVE UP. She gets up on the balance beam with everyone else in gymnastics. She gets scared. Sometimes she cries. The teachers are wonderful and help her the whole way along. And at the end, she always says, “I did it!! I’m so proud of myself!”

Emmy has therapists in school, and they are consistently reporting back to me that she comes to the therapy room with a smile on her face, ready for anything–even if it’s hard. It’s funny because sometimes they say, “It’s a pleasure to work with Emmy.” And I picture this 4 year old in a little pinstriped business suit, marching off to work in the therapy room. What a trooper!

Our life is quite typical…I think. Emmy likes to do everything that every other 4 year old does. She likes to get her hair braided and put on pretend makeup. She has favorite outfits, and she’ll often ask me if I washed her pink polka-dotted sweatshirt. She loves going to the park, and (naturally) she loves anything with sugar.

She also can be obsessive about things, which I think is more of a Williams syndrome trait. She might ask a question 100 times (like “Where are we going?” even though she knows exactly where we’re going). She also will become obsessed with certain “themes.” For the past year, she was into anything scary (vampires, ghosts, zombies, etc). There’s nothing quite like sitting across from an adorable 4 year old at dinner and having her ask, “What you like better? Werewolves or goblins?”

Right now, her theme is still anything scary, but she’s also introduced CANDY. So now it’s “What you like better? Skittles or Twizzlers?” We have treat nights on Monday and Friday, so all week long, she’ll ask, “No treat night tonight, right?” And then on treat night, she’ll say all day long, “Don’t forget!! Treat night tonight!”

The obsessive stuff can be rough when I’m tired. I usually just answer her questions repeatedly, but sometimes I’ll stop and say, “Emmy, you already asked that question, remember?”

And then she’ll say, “Oops! Sorry!”

She’s so cute.

In a way, I can’t believe I gave myself 8 years to be ok with this. That seems like a long time, when I have someone so irresistible right in front of me. But when you have a baby in your arms who you’ve barely met, and you’re reading about a scary diagnosis, all you can do is promise yourself that–in time–this will be ok. In time, you will accept and even appreciate the sweet gift before you.

Luckily, she is everything I thought she would be–and much, much more.

A Potential Answer

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Theo came home tonight! And we have a potential answer. He did a barium swallow study today, and the speech pathologist noticed that he was close to having his drink go down the wrong pipe. Apparently some kids, particularly those who have had laryngomalacia, can have trouble with accidentally sending their food/drink down the wrong pipe. If he did have food/drink go down the wrong pipe, that could’ve caused a throat infection, which could be what he’s experiencing now. The only problems with this theory are that (1) the throat culture did not grow bacteria and (2) our doctor came in at the end of the day to say that he thinks that the swallow study was influenced by the fact that he just had surgery and, therefore, we can’t rely on this conclusion.

But guess what…a bunch of really scary tests came back negative. Also, the cardiologist did an echo and confirmed that he *does* have a heart murmur (which didn’t show up until now because apparently some heart murmurs show up in toddlerhood!!), but she said it was common and nothing to worry about.

So now that we’ve ruled out a bunch of scary stuff, I’m finally breathing a sigh of relief. The swallow study may not have been accurate, and this may not be the *exact* diagnosis. We’ll have to work with the pulmonologist going forward to get to the bottom of this. But for now, I feel much better that we’ve been able to rule things out, and I’m SO very happy to have him home!

Thank you for thinking of us!!! ❤ It’s been quite an ordeal…

Theo Found the Playroom

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Today, we moved to a new floor in the hospital, and Theo was super happy to find the playroom! He’s been tied up to wires, but today he finally broke free for a bit and RAN and RAN.

We still have more questions than answers. He’s had a lot of bloodwork and other tests as well. They’re testing for everything under the sun. One of the doctors thought he heard an issue with his heart today, so they’re even bringing in cardiology tomorrow. Hopefully that’s just an extra precaution, considering our history.

There is still a lot of mystery surrounding his condition, and he continues to have excessive mucus in his throat and lots of drool. The good news is that the tests are being done, and they’re trying to leave no stone unturned.

If they do find something, I hope it has something to do with magical powers…… 🙂

Thanks for your well wishes!!

Theo Update

Hi Everyone:

Just a super quick update because I know we have many sweet people who are thinking about us (thank you!!!!). The surgery went ok. The doctor found the laryngomalacia that we suspected and snipped a teeny bit (no big deal). Other than that, he found a ton of fluid in Theo’s throat and lungs. He sent the culture in, and we’ll get those results in 3-5 days.

We were in the recovery room, and Theo was pretty miserable (of course), but we felt like he was doing pretty well (all things considered). I offered him an ice pop because he was refusing to drink, and it fell on the floor, so he started crying. But as he started crying, all that mucus got stuck in his throat, and he couldn’t get behind it. He kept trying to breathe again, and it wasn’t happening. I started cajoling him to breathe again, and then he turned blue, and I screamed, “HE’S TURNING BLUE!”

Luckily, a bunch of nurses came running over. One gave Theo mouth-to-mouth resuscitation, and then they pumped some oxygen into his lungs, and he started breathing again. It was a big scene and, of course, reminded us of when Emmy went into cardiac arrest in the recovery room. (Why does this keep happening???)

He was then transferred to the PICU, and then there was a lot of talk of getting a pulmonologist in because Theo seems to have issues with not only his throat but his lungs as well. Just an excess of mucus all around. So now we’re undergoing some tests and trying (yet again) to get to the bottom of this issue. Theo is stable but still miserable, and the fluid is so loud. You can hear it when he breathes. Poor little guy.

Thanks for your thoughts and prayers!! I’ll keep you posted!! ❤

Tomorrow is the Day

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Thank you, everyone, for your sweet words and wishes. I can’t believe that we’re on the Eve of another potential surgery. I say “potential” because we’re scheduled for a bronchoscopy, which is more of a look-see. But if the doctor sees something minor that he can fix, he’ll do it. The doctor won’t know what he’s dealing with until he performs the procedure, so we’re kind of on pins and needles in that respect.

As such, it’s being treated as a surgery. The document I have in front of me with the details for tomorrow reads across the top: “SURGERY 11/10/15.” The sheet also tells me that Theo can’t eat or drink past midnight. We have to be at the hospital at 8:00 am, and the procedure is scheduled to begin at 9:30 am.

In the photo above, I put that shirt on Theo 5 minutes before I snapped the picture. Can you see how his shirt is covered in drool? Also, you may be able to see the excessive saliva in his mouth. This is more than just teething or other typical baby stuff.

I’m incredibly depressed about the procedure tomorrow, but I’m also thankful that we may finally get to the bottom of this. I’ve been so worried about him. Lately, he’s been waking during the night, coughing on the mucus in his throat.

I’ve been going through the whole “It’s not fair!” cycle, and I’m trying to get out of my own head and just accept it. I stood in front of my bookshelf for a while (I love books and probably have way too many…), trying to find something to read that would pull me out of myself. I found Byron Katie’s Loving What Is and got into bed, prepared to read. What fell out of the book was a printed list of high-risk obstetricians from our insurance company. My husband had written some notes at the top because he was the one who printed the list for me…when I was newly pregnant with Theo. The pregnancy was high-risk because I had a uterus with a “thin window,” as they say, and I needed to be monitored. I guess I turned towards this book when I was worried about my pregnancy.

And now that we made it through that stressful pregnancy, we have a sweet little guy with an adorable laugh. Truly, his laugh is awesome. More of a chuckle, really.

So here’s what Byron Katie says in her book: “If you want reality to be different than it is, you might as well try to teach a cat to bark. You can try and try, and in the end the cat will look up at you and say, ‘Meow.’ Wanting reality to be different than it is is hopeless. You can spend the rest of your life trying to teach a cat to bark.”

I want reality to be different. I don’t want Theo to have this problem or ANY problem. I want many things that aren’t part of reality. And the realization that I have no control over reality is PAINFUL. It actually hurts to sit in certain feelings that belong purely to reality and are not up for manipulation or debate. But I guess I have to accept that I’m not going to teach a cat to bark (although I’m sure I could find something on YouTube…).

Thank you so much for thinking of us. I really appreciate it. And I’ll keep you posted when we know more.  ❤

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Here We Go

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I’ve been wanting to post about this for a while, but I’m so stinking depressed about it that it’s hard to find the words. I also have been trying, unsuccessfully, to put it out of my mind and not obsess. (But I’ve been obsessing.)

It looks like Theo will have to go to the hospital for a bronchoscopy on November 10. When Theo was about 5 months old, I noticed a wheezing sound when he breathes. At the time, it was diagnosed as laryngomalacia, which is basically a floppy larynx and no big deal. It happens to some kids and, as they get older, the problem resolves itself. Sure enough, when Theo was about 8 months old, it seemed to go away. I didn’t hear the wheezing anymore, and the doctor confirmed that it had resolved.

Then this past August, when he was 14 months old, he developed a much different sound when he breathes. It’s quite loud, and it sounds like he has mucus in his throat — like a gurgling or purring. At first, we weren’t worried. We figured it was a cold. Then it didn’t go away. And it got louder. We’ve seen several Ear, Nose, and Throat doctors. We treated him for allergies (both seasonal and food), asthma, and reflux. None of those treatments had any impact on the sound. Plus, one of the treatments involved medicine that seemed to make everything worse. He had so much mucus and saliva in his mouth that he couldn’t even swallow.

So here we are. Theo is 16 months old, and the sound is as loud as ever. Furthermore, he has started occasionally choking on his food and, when he coughs, it sounds as though he’s fighting a lot of mucus. (Although this mucus has never come up.) But the Ear, Nose, and Throat doctor confirmed it was there by looking down his throat.

Well, now the ENT has to look further to get to the root of the problem, and the only way he can do that is through a bronchoscopy, which means we have to take Theo to the hospital and put him to sleep with anesthesia. Which reminds me of the last time we put one of our children to sleep with anesthesia, and all hell broke loose. (I can’t even bear to go back and look at the posts right now to link to them. But, in May 2013, Emmy had heart surgery and went into cardiac arrest afterwards.)

I’ve been trying to avoid the bronchoscopy. I’ve been trying so hard to solve this problem without any invasive procedures. But it doesn’t seem like that’s going to happen. My amateurish investigative work isn’t getting us anywhere.

The two prevailing theories right now are that (1) Theo might have scarring in his throat or a narrowing in his airway from when he was intubated in the NICU (2) Theo may have a congenital anomaly called a “vascular ring.” Both are pretty hardcore.

Keep in mind that Theo seems fine. He’s growing nicely. He’s talking and laughing and dancing and having fun. He has all the energy in the world, and he actually doesn’t seem at all bothered by this throat issue. Even when he chokes or coughs, he just keeps going. (The rest of us practically have a heart attack every time…)

So what can I say? It stinks. I’m trying my darndest to be positive. But it stinks. And I’m super bummed that we have to go down this road. I just want everything to be all sunshine and roses all the time, you know?? Especially when it comes to my kids.

Well, our pre-op appointment is on November 3.

So here we go…

A Story About Sisters

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Charlotte wrote a “How To” story in school. The topic she chose was “How to Help Your Sister.” For her dedication in the beginning, she wrote, “I dedicate this book to Mommy because my Mommy taught me how to help my sister.” She wrote about helping her sister down the stairs, helping her get dressed, and helping her brush her hair.

My first thought was: This is the sweetest thing I have ever seen in the history of the world!

My second thought was: Have I put too much of a burden on Charlotte?

I felt the #1 Mom feeling, which is guilt. Am I not doing this right? My original intent was that I didn’t want Charlotte to feel like she always has to help Emmy because I didn’t want her to resent her sister later in life. (Though someone commented on my blog once that she, as an adult, loves helping her sister with Williams syndrome and that she would do anything for her.)

I just don’t want Charlotte to look back on her life and say, “You know, my mom really screwed things up because she made me help my sister too much, and now I have the following issues…”

But then I thought…

Wait a minute. I helped my own sister! I was always looking out for her. I’m sure my sister felt like she had 3 parents because I was always putting my nose into everything. I remember being in a grocery store with my mom and my sister and, while my mom put in her order at the deli counter, I would chase my sister around the grocery store and call back over my shoulder, “You need to watch her!!” Of course, my mom had an eye on her the whole time, but she found it hilarious that I played the role of guardian (while chastising her for it…).

My sister and I recently found some old videotapes of my 13th birthday party, and we had so much fun laughing at ourselves. The grainy footage showed the party in my house with music blasting. Our living room was crowded with friends and even a boy that I liked. But while I was surrounded by people my own age, I danced with my 7 year old sister for hours. There we were in the middle of the circle–spinning around and laughing. We both commented on it. “Wow, I basically ignored everyone else and spent the party with you!”

Growing up, I included my sister in everything. “This is my little sister!” I would call out to anyone who would listen. I always had a protective arm around her, and I loved doling out advice. When I finally got my driver’s license, we continued to spend all of our free time together–out and about. And when I got to college, I brought my little sister to parties and watched her like a hawk (reminiscent of days in the grocery store as kids).

I don’t remember if I helped her down stairs or if I brushed her hair, like Charlotte does with Emmy. But I know that I’ve helped my sister in other ways–just as she has helped me. It’s always been a give and take. (My little sister has even called a boy on my behalf, to ask him to a dance. I was 15 and she was 9. At the time, my shyness was beyond embarrassing. Now, I can laugh about it.)

With Charlotte and Emmy, I see that give and take. Some of Emmy’s greatest strengths come from her reliable company. If Charlotte needs a hug, Emmy is right there. When Charlotte needs a laugh, Emmy is happy to provide it. When we moved to a new town a few months ago and didn’t know anybody, Emmy stepped into the role of “steadfast companion” to Charlotte. They spent all of their free time together.

The other day, I found one of Emmy’s books in Charlotte’s room. I asked, “Did Emmy leave this here?” and Charlotte responded by filling me in on their morning routine.

Every morning, Emmy wakes up first. She grabs a book from her nightstand and walks over to Charlotte’s room. She knocks softly on the door and enters. Charlotte is still in bed–sometimes sleeping. The two girls don’t say a word. Emmy sits on the floor of Charlotte’s room with her book and leafs through it, waiting for her sister to get out of bed.

I said, “You guys don’t talk at all?”

Charlotte replied, “No. She just likes to be in here with me.”

Their bond is strong. There’s a give and take. For now, I think it’s equal. What role Charlotte will take on in the future remains to be seen. I don’t want her to feel burdened, and I don’t want her to resent her sister. But for everything I’ve done for my sister and for all the times I’ve been there for her, I feel zero burden or resentment. Yes, the circumstances are different. But from what I see in Charlotte and Emmy, that special bond is exactly the same.

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