Monday, May 30, 2011

Memorial Day

We enjoyed a nice day as a family. We started with the annual pancake breakfast with the church, played on the playground, went to Kindermusik, and enjoyed time outside in the pool & sandbox. It was great having Daddy at home with us today.
(Some of the photos I took on the playground were so dark. I played around with iPhoto editing just to lighten them up enough to see that sweet face.)



Saturday, May 28, 2011

Party Time!

What a wonderful day. I was surrounded by family members that are more like friends and a special friend that is more like family. We had six kiddos age two and under. We played on the swing set, in the baby pool, and in the sandbox. We talked. We ate. We laughed. We celebrated a special boy that is going to do special things in his life. Happy Birthday, Levi!





















I really don't have words to express what it meant to have this woman here with me. I am so glad our baby boys brought us together. Miles & Levi are less than a month apart, and Keli & I have talked almost every day since Miles was a few weeks old. We have a deep connection & "get" each other on so many levels. It is wild to think that we may have never known each other without that tiny little extra chromosome our boys possess. Love you, Mama!


Remember, we all stumble, every one of us. That's why it's a comfort to go hand in hand. ~Emily Kimbrough

Shared joy is a double joy; shared sorrow is half a sorrow. ~Swedish Proverb

When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares. ~Henri Nouwen

Friday, May 27, 2011

Happy 1st Birthday, Levi!!


Today is Levi's first birthday, and I thought I'd blog about the way I felt during my pregnancy with Levi, how scared I was those first few days after his birth, how much I have learned since then, and how I feel now. Then I remembered the most important lesson I've learned through all of this, and how much better things got for me once I figured it out... IT'S NOT ABOUT ME!

Happy Birthday to YOU, Levi! Lots of birthday photos to come. We are having a family get-together to celebrate this boy tomorrow!


I LOVE the way he sits! Sooo cute!

"This is gonna be a good life!"

Tuesday, May 24, 2011

ENT Follow-Up

Levi had his ENT follow up appt on Monday. The doctor said his reflux looked better and asked how I thought he was doing. I told her that he handled having a sinus infection better than I expected. It was the first time he's been congested and didn't end up in the hospital. He also didn't get the croupy sounding cough he usually gets. She had a victorious little grin & said, "That's interesting because croup is related to reflux." It made sense to hear that since our pediatrician said that croup comes from inflamed vocal cords, and I suppose your vocal cords would be pretty inflamed if you have acid reflux.

A nurse will be calling in a few days and will schedule a home visit to drop off a pulse oxygen monitor for Levi to wear on his finger while he sleeps. I hope it works! We have a hard time keeping those monitors on him when he's in the hospital. They usually put them on his feet, and he still can't keep them on!

The doctor said she is not planning on taking his tonsils out (Hooray!) and wants us to come again in six weeks for another follow up appointment. I will keep you posted!

Levi will be one-year-old on Friday!

Friday, May 20, 2011

Perspective Shift

Okay, so caffeine with dinner was a BAD idea! What was I thinking?!? This is NOT the night to be up past 1 am! Just thinking about all that is planned for tomorrow is exhausting...unfortunately just not exhausting enough to help me sleep!

So while I browsed the Internet tonight, I noticed something wonderful has happened within me. But let me back up a bit first...

After Levi's birth, I spent a lot of time online looking a pictures & videos about Down syndrome and wondering, "Will Levi look like that kid? Will his speech be like that?" And on and on. It was hard to have this sad feeling every time, like, "I don't want him to be that way."

Tonight, I looked at a few blogs & videos, and each time I saw those kids, I felt such peace. I know that no matter how much Levi is able to do or how well he is able to speak, he is going to fill me up in a way that only he can. I happened upon this video that would have hurt my heart in the past. I actually have seen performances of this sort in the past and REALLY did not like the way they made me feel.

When I watched this video tonight, I didn't focus on how poorly the kids danced or how out of sync they were with each other. I noticed how they wrapped their arms around their parents. I noticed the looks in their eyes. I noticed how much fun they were having, and most especially, how much their parents adore them.

The wonderful thing I noticed about myself tonight is that I am not worried about what Levi will be like when he is older. Now rather than being afraid of his future, I can't wait to share it with him. He will (and already does) make me happy and proud, and the depth of his affection is more meaningful than any IQ test could ever be.

Don't forget to pause the music player before playing the video. There is a lot more to it than the performance, so watch it through to the end!

Thursday, May 19, 2011

Take Me Out to the Ballgame

I didn't think we'd feel well enough to go tonight, but I'm so glad we made it to the ballpark to watch students from Wes's school perform the National Anthem. They sounded fantastic! I got some great photos of them singing, but will not share them here.




Wednesday, May 18, 2011

I am sad to say that Wes's grandpa passed away last night. He will be missed.


(4 generations in this photo)

We are still not feeling well at our house. I started antibiotic for a sinus infection today. Wes is in worse shape than I am, but he can't get to the doctor. There a multiple other factors adding to the stress load lately, and I am thankful for some time to laugh and play with my boys today. Turn off the music player at the bottom of this page to fully enjoy Adam's closing comments in this video! video

Monday, May 16, 2011

thirty-seven

I had a birthday yesterday. All four of us were so sick we didn't even make it to Bible class or worship services. I feel even worse today & for some reason keep running a fever in the evenings. Levi has a fever again, too. Poor Wes had to work all day. Adam seems to be improving and pretended to take our temperatures tonight. He said his was 50 cents. Mine was 50 pounds.

I have been spinning my wheels trying to keep up with life lately and haven't really had time to blog the way I'd like to so tonight I am just going to share a story about Down syndrome from someone else's blog.

Seeing Is Definitely Not Believing
(story taken from Dave Hingsburger's Blog)

I had an astonishing insight. Astonishing. Now that I've had it, I wonder if I've really always known, but I don't think so. Not like I do now. And it happened in the lobby of a hotel.

Joe and I were checking out of the hotel where I'd been speaking at and attending the Canadian Down Syndrome Annual Conference. There was a small problem with my bill so I ended up having to wait as they tried to find a charge and add it to the tab. Joe went ahead to help with loading the car and I sat quietly looking around the lobby.

Here's what I saw:

Two little girls playing around the big overstuffed chairs. They were bewteen four and five. They both were blond. Both had pigtails. I saw only one face, as the other was across from her playmate with her back to me. The face I saw was a chubby, dimpled, smiling one. Too, it was the face of someone with Down Syndrome. But I smiled because of the joy the two girls were experiencing at play. One of them had a small green change purse and it was the center of all their activity. The world did not exist for either of them outside the small ring in which they interacted. I watched and envied, as adults often do, the ability to shrink the world to fit just you and yours, the ability to play freely and laugh easily. Others smiled at them similarly. I caught the eyes of others watching, we all grinned. All knew what each other was thinking.

Then, as I was still waiting, a woman - prosperous in her 30's stopped to ask something at the desk she looked over and caught sight of the scene that I have described to you. Her face crumbled into sadness, 'Poor little mite' she said. I was startled in that I haven't heard a child refered to as a mite in ... well ever. I didn't know for sure what it meant. But there was no mistaking the 'poor little ...
I looked back over and tried, really tried to see what she saw.

Here's what I saw:

Mom came over and little girl in pink, the one who's face I'd seen, lifted her arms. Mom swung her up and hugged her, gave her a peck on the cheek and then set her back down into her world of play. Entirely natural, entirely normal, completely unremarkable.

I glanced back and saw the look of sadness remain unchanged. My attention was called by the clerk and I signed off on the bill and began pushing myself over to the car. Joe magically appeared and he got me over to the door. The 'poor mite' woman was there and I stopped and said, 'I'm sorry, I over heard you remarking about the child in the lobby, what did you mean 'poor mite'.

She looked at me startled at being spoken to, startled at being overheard, she said, not brusquely but not friendly, 'Well, didn't you SEE?'

Obviously she saw something very different than I did. She was looking at a scene through the eyes of someone confirming bias. But then, so was I. She was looking at the scene with prejudices firmly in place. But then, so was I. I don't think I ever really realized how different eyes can see the same thing so differently.

Seeing, as it turns out, isn't believing. Seeing is simply confirming. What would that child have had to do in order to be smiled at ... perhaps even valued? I think, nothing. Her existence as a person with a disability eliminates the possibility, in the mind of some, of worth.

Poor mite ... well, I pray she one day might ... be valued and loved just for being exactly who she is ... exactly who she becomes ... exactly who she might be. I pray that she be seen, really seen, for who she is, not through the filter of prejudice and preconception.

Pity does not erase potential, it just makes victory a little more tasty.

Friday, May 13, 2011

"Mamama"

I thought I heard it through the monitor while Levi happily babbled in his crib the other morning. I thought maybe I heard it when I was folding clothes & he was playing in the exersaucer, but I definitely heard it loud and clear while we ate lunch with Grams and Grandpa yesterday..."Mamama." Hooray!!!

We found out yesterday that Levi has a sinus infection that was just starting to go into his ear. He has been congested for a little while, but when yellow goop started oozing out of his eye, I knew it was time to see the doctor. Today Adam woke up with a slight fever but improved quickly after taking some Tylenol. Wes hasn't felt well this week, and I had strep! I am so thankful for powerful antibiotics and just hope we all stay well for a little while.

Happy weekend!

Wednesday, May 11, 2011

Great News!



The short version...Levi is swallowing properly.

The rest of the story...I had to bring his baby food, milk, and juice so he had things to eat & drink for the test. I woke up late & didn't get the breast milk thawed before leaving the house, so I did what I saw a friend do once in the car and put the package under my leg & turned on the seat warmer. It worked great...until I got OUT of the car. The pressure put on the package of milk while I got out of the car made it burst open and got my pants soaking wet! And of course, it was all in just the right area to make it look like I wet my pants. The good news is that I unexpectedly got to shop for some new capri pants this morning. While I stood in line to pay with a wet bottom, I kept telling myself, "You'll never see these people again. You'll never see these people again..." Wes's mom got to see this all unfold since she met me on the way to the appt and came along with us today. She & I have shared some pretty hilarious moments together.

For the test, they mixed some barium into his foods and slid the X-ray machine (which you can see in the photos, covered in stickers) over to watch as he swallowed. I had to wear a lead apron while feeding him, and he screamed & cried the whole time. He was hungry & wanted to nurse, not drink barium from a bottle! I ended up using his medicine dropper to get something in him to swallow b/c he was not having it!

Click here to see a video of a person with a swallowing disorder doing a barium swallow test. It is interesting to see what the technicians are able to see during the test.

So we are good with swallowing. On the 23rd we find out if his reflux has gotten better, make plans for a home sleep study, and maybe find out if he needs his tonsils and/or adenoids out.

I am thankful for good news today. I didn't expect to hear anything until the follow up appt & was thrilled they were able to talk to us about the results this morning.
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Since this blog is basically my diary & scrapbook, I want to record some funny Adam stories...
-The other day he just wanted to wear his diaper & asked, "Mommy, can you take off my PJs so I can wear just me?"
-He told me yesterday, "I like you, Mom. Are we family?" and while spinning in circles said, "I'm getting bizzy!"
-The other night he asked me, "Can you turn off the light so I can see the dark?"
Love that boy!

Monday, May 9, 2011

Made in God's Image T-shirt

I thought this shirt was perfect for our little guy & he wears it well.
I am not looking forward to his swallow test on Wed. or what the results may lead to :(

Sunday, May 8, 2011

New Sleep Position

This is the second time I've seen Levi sleeping like this. It may not look like a big deal, but it takes a lot of his core strength to pull his knees up like this. This is a step towards crawling, and we are pretty excited about it!

Mother's Day Weekend

We spent Saturday at the Creation Museum in Cincinnati with the youth group. It was much more elaborate and on a grander scale than I imagined. I really enjoyed it.






















Every year on Mother's Day, our church presents Bibles to all the babies born since the last Mother's Day. It is something very meaningful to me because just a few years ago I would sit in the pew & try to hide my tears every Mother's Day. I wanted children so badly. Those Mother's Day services used to be very upsetting to me. It meant a lot to me today to see Levi get his little Bible with his name on it.

The elder that spoke before the presentation of the Bibles said that these kids may see some amazing things & learn a lot in their lifetimes, but the most important thing for them to know is God's Word. So true.