Sunday, January 30, 2011

This and That

THIS is the new, expensive jewelry we sported this week...
(Wes ended up going to the ER this morning. That is where he found out that he had strep throat, and it is bad.)

THAT is the cool balloon that livened up Levi's hospital crib. (Thanks, Regina & DSACK!)

THIS is the little girl that thought getting loose and running all over the neighborhood would be a great way to distract us from all the other worries we had this morning.We had friends and neighbors looking for her for hours. I drove all through the neighborhood looking for her before pulling in the driveway, and didn't see her...She was sitting in the flower bed by the garage waiting for me. Stinker.

THIS is Mr. Levi playing with his favorite toy, acting all cute and happy like nothing ever happened.

(I wish you could see how crazy his happy little legs were kicking when that photo was taken.)

THAT is a reminder of sweet big brother (who is spending an extra night with Grams and Grandpa in an effort to protect him from all this illness). He has this new color-coding obsession, and you see hints of it throughout the house, like the way he has grouped his magnetic letters together on the fridge.
And THIS is the toy he will be most excited to see when he gets back home. (Notice the pom-poms he has carefully placed inside as passengers. The train was Uncle Ben's favorite as a boy, and he has graciously loaned it to his beloved nephew :)

Just a quick update

I got to the hospital at midnight & Levi nursed well (and is still doing so). He gets to go home today. The bad news is that Wes has strep throat!

Saturday, January 29, 2011


Before I went to bed, I found out that the doctor had just seen Levi & wasn't worried. He said Levi just needed time. The X-rays came back fine. That helped me sleep much better. God is good.

Friday, January 28, 2011

Back in the Hospital

Although Levi had a good day yesterday, he started having problems last night. I laid him down to sleep in his car seat again so he'd be upright, and he was in front of the cool mist humidifier, but about every 3 hours he'd wake up with a bad cough and would be wheezing. I didn't see the chest retractions that I saw the day before, and after a few minutes of breathing the cold outside air, he'd sound better and breathe well enough to nurse & fall back to sleep. But then it would start all over a few hours later. He was still doing it when he woke up this morning & I had to leave for the airport to do a training in Maine.

A dear friend came to watch Adam on short notice & Grams took Levi to the doctor. He didn't really improve after more steroids & breathing treatments so he was admitted to the hospital. The last I heard, he was getting X-rays. So I sit in my hotel room over 1,000 miles away waiting for news. I held up a lot better on Wednesday, but I know that he is in good hands and am hoping for the best. We have a lot of support from family & friends, which makes it easier to be in a less than preferable situation.

Wednesday, January 26, 2011

Levi's 1st Ambulance Ride

It started yesterday morning. One bark of a cough. A few hours later...another one. Then around 4 or 5 pm it got bad. The single barks turned into coughing fits, and his breathing sounded like a bad snore coming from his throat. Eventually every breath sounded like it belonged to a circus seal. Thank goodness our doctor's office has an after hours phone number. I left a message and frantically wondered if the nurse would ever call me back with each second that passed. I packed his bag while weighing the pros and cons of taking him to the ER. I just couldn't decide what to do, and even though I was minutes away from having a professional tell me the answer, I went back and forth and back and forth in my mind.

Finally the call came. We were directed to bring him in to the doctor's office the next morning rather than going to the ER. And so it began...a scared mama waiting and watching for that moment to come when her baby couldn't catch his breath. I tried laying him upright in his swing, but then he'd cry, which would send him into another coughing fit. So I ended up moving the cool mist humidifier and holding him on the couch so he'd sleep while I made sure he was able to breathe. I felt his chest and listened so closely that I did not sleep for one second. The worst moments were when he'd not breathe for just a second, then I'd be relived to hear him cough again, and believe me, there was nothing comforting about that cough.

So our 10 am doctor's visit today was extra exciting with roads full of snow, slush, and bad drivers. Thankfully Wes didn't have school and was able to do the driving. At that point we had no idea exactly how "exciting" our day would be.

The doctor said Levi had croup and gave an albuterol breathing treatment and some oral steroids. When she came back to check on him, she decided a second breathing treatment with another medication was needed. Later he was still really pulling for air. His ribcage would chug up and down working hard for each breath. She decided to admit him to the hospital for overnight observation...and that he needed to take the ambulance to get there! Schwoo! What a surprise that was!

Being Escorted Out of the Doctor's Office
Wes drove the car, and I rode in the ambulance with Levi. I wasn't really all that worried. I knew we were just taking extra precautions because of his tiny little airways, but something surged through my body when I realized "those sirens coming from this thing are for your baby!!" Still I felt a sense of peace. By the time we arrived at the ER, the paramedics were smitten with Levi. These big men in uniform were shaking his toys to make him smile and telling him how cute he was. They had his car seat strapped to a gurney and wheeled him in. I followed behind, and that angel on one shoulder karate chopped the devil on the other. I suddenly stood tall and thought, "I can do this."

In the Ambulance

After all the ER doctors checked him out and the respiratory therapist suctioned his nose out, Levi fell soundly asleep for about 2 hours. He was breathing quietly and was sleeping peacefully. They decided we could come home not long after, and he has been pretty happy since we've been home. He's having a hard time falling asleep but has been quiet for a few minutes. Let's home that is a good sign. *Sigh*

Sunday, January 23, 2011

Happy, Happy, Joy, Joy!

There has been a big breakthrough for Levi...He started babbling the sounds we've been waiting for!! In the past all we ever heard was "Ahhh." The speech therapist wanted us to work with the /p/, /b/, /d/, and /m/ sounds next. I thought it would never come, and every night I would wonder if I was talking to him enough. Then in the wee hours of Thursday morning, I heard it for the first time..."dadadada." Then on Friday we heard "bababa...dadada" a few different times. Now he does it off and on all through the day! Music to my ears! Go Levi!! I hope to get a video of it up soon!

I had a great trip this weekend for work and got to take Levi & Grams along. 300+ fantastic teachers were at the seminar. I always love speaking in Columbus because everyone is so friendly, and many of the attendees are "regulars" that come every time we're in town. It's like seeing old friends. I haven't been there since last year when I was very pregnant. Before the seminar started, lots of them asked, "How's your baby?" and they were so excited to see him later that day. They were standing in line to hold him during the breaks. It was a lot of fun. The seminar was a big hit, and having my awesome mother-in-law and Levi along for the ride made it not seem like work at all! If you haven't checked it out before, click here for Appelbaum Training Institute's website. Lots of cool stuff there. The online store is awesome, and ATi has been getting a lot of news coverage lately. You can watch some of it on the website. There is also an Appelbaum Training Institute page on facebook where you can ask questions and get great ideas to help with students or even with your own children at home.

I brought my camera to take pictures at the seminar but didn't remember to get it out! Here are some pics of Grams and Levi helping me set up the sales table the night before!

This was taken on Friday, when Levi got to visit his great-great Aunt Dorothy!

While we were gone, Adam & his Daddy got out the train set and had a big time together. Adam was so proud to show me everything this morning.

Before I left, Adam & I made a snowman. He was so excited about it. He directs a lot of his pretend play towards snow lately. When he wants to be covered up with a blanket, he says, "Cover me up with some snow." He also will say, "It melted" when a tower of blocks tumbles over. He puts bubbles over his toys in the tub and says they are covered up with snow, too.

Here he is looking out his bedroom window to admire the snowman. He whispered, "Night-night, Frosty" before going to bed that night! So sweet!
I couldn't find his gloves the other day, and he grinned while telling me they were in the garage. We went out there and he said, "Right here, mommy." He had stuffed them in the handles of the car & thought it was the funniest thing!

I was feeling even more worn out than usual this morning and had a sore throat. Thanks to hubby, I got lots of rest today (naps that were about 2 hours each!! Heavenly!!). I think I'll still go to bed early tonight... Adam's first trip to the dentist is tomorrow!

Wednesday, January 19, 2011

Lots of pics today

Today Levi saw the ophthalmologist and got a great report. She doesn't see any problems right now but wants to see him again in 6 months because there is still the possibility of Levi's eyes becoming crossed. He was a tough little cookie & had his eyes dilated, then numbed to check his eye pressure. I was glad he fell asleep afterward b/c those big eyes with dilated pupils were creepin' me out! I cannot STAND to have my eyes dilated, so it isn't fun seeing it happen to someone else either.

Yesterday we had our 6 month check-in with his therapists and coordinator. It was intense for me. I could talk about what we are working on and share his progress & goals all day, but something about putting it in writing hurts a mama's heart. He is doing great, and I am happy with the goals we have set for the next 6 months. It is exciting to think that he will be over a year old the next time we have one of those meetings! He is just so sweet. I am excited to see what he will be like as he gets older & has even more of a personality.

More snow is heading our way, and I head out to do a presentation this weekend, so it could be an interesting few days. Right now, it is cloudy and cold outside, and we are enjoying the coziness of home.

Adam & Daddy enjoying a new book
Levi trying his first finger food
He was so excited to bring it to his mouth, his hand was waving all over the place!
Santa brought Levi these foam blocks (as suggested by his awesome physical therapist). They are really helpful for getting him prepped to crawl!

Adam & Daddy watching Thomas the Train
Another exciting activity at our house is watching Levi in the exersaucer. He surprised me by grabbing for things as soon as he got in it. He is just now starting to get interested in toys, and it is a thrill to watch this new development.

He is also doing really well in Bible class. It is like a therapy session since he sits in a seat holding himself up, reaches for objects, and is thoroughly stimulated.
(Notice the foam block behind him. Those things are very handy to have around!)

Adam is having a blast in his tent.
(Yes, the foam blocks again!)
He even got to sleep in it the other night!

I still have a lot more to go through, but I did get two more scrapbook pages done from our photo shoot. I like going through them this way so I can savor each picture as I go along.
(If it seems like there are more photos of Levi than Adam, there are :) I made Wes a photo collage of pics of Adam long ago, and now Daddy needs one with pics of Levi.)

Sunday, January 16, 2011

Good vs. Evil

(photo by Megan Tibbs)

Some days I feel like I have an angel on one shoulder and a devil on the other. You have seen them in the movies, haven't you? The angel whispers encouraging, positive thoughts in one ear, while the devil sits on the other shoulder saying negative, discouraging things.

Sometimes I hear, "This is the coolest thing that will ever happen to you. Having a child with Down syndrome is going to make your life so full." Other times I hear, "This is the only time in his life he is going to be like everybody else. Enjoy it before it's gone." I go back and forth several times a day between happy thoughts and sad ones. Every once and awhile I think, "I'm so over it. Everything is going to be fine. There is nothing to be sad about." Weeks will pass, and then the tug of war in my head begins again.

Lately, when a negative thought comes, I really reach deep. I don't let that thought go until I inspect it carefully. I think , "What am I so worried about. Really...what is it?" He may reach some developmental milestones more slowly. So what? He may not be like everyone else's kids. Who cares? When I really dig deep and try to figure out what there is to be sad about, I come up empty. There IS nothing to be sad about.

I recently saw a blog about a toddler with Down syndrome. The day after I clicked "follow" on her blog, she put up her last post, entitled "Moving On." She said at this point in life he "is just one of our kids, and Down syndrome isn't the focal it once was." I want to be there. I am getting closer. Just not there quite yet.

Saturday, January 15, 2011

A Few More Scrapbook Pages

I still have several more photos to scrapbook, but here are the ones I've done so far...

Thank you to Megan for getting such fab photos!!

gypsy lane studio photography

My friend, Megan Tibbs, came to the house to do some photos as a surprise for Wes (his Bday is this month). She was able to get such great pictures even with both boys being extremely active. Adam was ready for a nap and did not want to be still! Here are just two of the many great photos she took. I hope to scrapbook them and share them all soon.

Friday, January 14, 2011

"It Starts with Awareness"

Levi & I have the privilege of being part of something very special. Please watch the video and look for a short video clip of us! We are exactly 4 minutes into the video. First you'll want to scroll to the bottom of this page and pause the music player.

Sunday, January 9, 2011

Click here for a great video. It's called "We're More Alike Than Different: The Documentary." You'll want to close this page or scroll to the bottom & pause the music player button so the sound from my page doesn't interrupt your viewing of the video.

Saturday, January 8, 2011

Home Entertainment

I stocked up on a good diaper deal last night (sale price and coupons make a wonderful combination). While I was waiting to put away my stockpile, Adam found a great way to use four jumbo boxes of diapers. He made himself a choo-choo train! (Hear this as if Oprah were introducing him...) "LOVE HIM!"

And Levi's entertainment for the day? His footsies...

I was disappointed that the snow spoiled our Down syndrome association meeting for the day. It was rescheduled to a day that I'll be out of town. I actually traded weekends so I could be there today :/

But there is an amazing thing happening in the DS community today. If you have some time, check out Kelle Hampton's amazing blog here. In less than 24 hours, she reached her lofty goal. Simply amazing how these extra chromosomes change so many lives for the better. I am just filled up with excitement for what she is doing. Her blog got me through many of those rough moments in the beginning of my journey. She made me feel like we could rock this DS thing, and she inspires me in many ways.

Friday, January 7, 2011

Year Round Christmas Trees?

I have seen some cool "Christmas" trees that people keep decorated all year, according to the seasons and holidays. Every year, I am sad to put these two little lovelies away. They are small trees I found several years ago, and I have just always loved the nice glow they create no matter where I decide to set them up. This year they found the perfect nesting place, and I just couldn't bring myself to pack them up. So here they are with a whole new look...
Ha ha! I thought I finally found a picture without the dog in it, yet there is her tail at the bottom!