Archive for June, 2011


A more successful night.  This is where we found her this morning.  🙂

Paul put Chloe to bed between 8 and 8:30.  I checked on her every few minutes again.  But last night I realized that when she was in her bed tent, her head was usually at the opposite end of the bed than where I put her pillow.  And actually she usually was sleeping crossways like she is in the photo above.  So I put an extra blanket on the bed that was loose so she could take it wherever she wanted to.  Most times when I checked on her, her head was way on the opposite end from her pillow.

I left at about 10 to pick up Elliot from youth group at church.  While I was gone, Paul totally forgot about checking on Chloe.  When I got home, she was in the middle of her floor playing toys in the dark.  I got her back up in her bed and took away her toy.  And I checked on her every few minutes again.  Finally sometime after 11, she was on her bed asleep!  Yay!

I scooched her a little more to the middle of the bed so maybe she wouldn’t fall off during the night, and then I went to bed.  Ahhhh!

And this is where she was this morning.  Yay, Chloe!

Actually, she’s STILL right in the same position except she has that blanket over her head to block the mid-morning sun!  It’s 9:15!  I guess I should go wake her so she’ll sleep tonight . . . .

If your fingers aren’t cramped from crossing them for us, please keep crossing them!

No youtube for You!

Chloe went to bed a little after 9 with no bed tent.  She was excited, and I think she was determined to stay put in her bed — I could just tell.  I checked on her every few minutes and bragged on her for staying put and reminded her of her consequences if she got up.  She was doing great but was NOT going to sleep.  Ugh.  She literally takes hours to fall asleep most nights.  Every few minutes for nearly 3 hours I checked on her.

Every few minutes until midnight, I checked on that sweet girl.  She stayed in her bed.  She did play with the blind cord a few times and got in trouble for that, but for the most part she was doing incredibly well.  But. I. had. to. go. to. bed.  I was sleepy.  So about midnight I went to bed and left her to her little self.

This is what I found this morning when I snuck in to check on her:

Hmmmm.  Well, certainly no youtube for you today, Chloe!  Maybe tomorrow.  She’s got to be exhausted — from the looks of her room, she played for HOURS!  Again, wish us luck tonight!  🙂

A “Big Girl” Experiment

Oh me.

Trying something big.

I took down the bed tent today.

Oh me.

You see, the bed was ripped up anyway.  It was “fixed” with duct tape, but anytime Chloe wanted to get out, she got out by removing the duct tape.  She oftentimes got up, got whatever toy she wanted, and got back in bed.  So really the bed tent had completely lost its effectiveness.  It had completely lost its safety element.

And one of Chloe’s sitters who loves her very much expressed concern about Chloe not being able to sit up on her bed.  She tearfully explained to me that she was burdened by the fact that Chloe could not sit up in bed like you and I can.  The sitter very much wanted to help fix that problem.  I assured her that we would think about that.

So today I just took off the bed tent.  Just like that it was gone.

Chloe sat and played toys on her bed all afternoon.  She loved it!

But now it’s bedtime, and she’s a freebird in there.  I’m crossing my fingers.

We had many “big girl” conversations during the afternoon.  We talked about her “big girl bed” a lot.

Elliot threatened her that if she gets out of bed tonight that he will sing and dance really loudly all morning tomorrow!  I think the boy knows his little sister and knows what threats really get her!

And I bribed her.

If she stays in her bed tonight then she gets to watch youtube videos on my computer tomorrow.

So far, so good . . . .

Drinking, drinking!

Thinking we need to keep working on drinking.  It’s quite a messy endeavor in an open cup!  But oh, so fun!

A Swimming Pal

What a fun surprise to arrive at the pool and find a pal to swim with!

It was a little toad.  Chloe loves any kind of animal / critter and was thrilled to swim and play with him for a few minutes.  She sang to him, cooed to him, kissed him, petted him, and generally loved all over him.  He in return kissed back, showed off his swimming skills, and proved to be very patient and sweet.  Mr. Toad was set free after a few minutes.  We are hoping for more swim time with him later.

Who Needs Therapy?

Who needs to PAY for therapy anyway?  Who needs to pay for physical therapy when you can swim in Papa and Mimi’s pool several times a week for FREE?!

Chloe LOVES to swim.  She asks to swim most days.  And when we are in the pool, she moves nearly constantly — walking, kicking, splashing, spinning, jumping.  Moving, moving, moving.  She loves it, and it’s so good for her!

Planning to keep it up all summer!

My Birthday Photos

What??!!  You missed my birthday?

Well, you may not have, actually.  It was 3 months ago.  But I never posted the photos.  They are fun family photos.

And Paul has been trying to keep me posting!  He emailed from work today to point out that it’s been a whole week with no post AGAIN.

He thinks that you are waiting and watching and looking for my daily posts.  He thinks that when a whole week goes by with no post that all of my readers are lost and without hope.  I’m trusting that’s not the case, but it’s nice to be appreciated and missed, too!  🙂

For my birthday this year we used a gift certificate for a local hotel that I won at a silent auction last year.  We got to stay in the hotel, swim in their pool, use their free wifi, and watch their cable TV.  A splendid hotel experience much different from our recent hotel fiasco.

We walked from the hotel over to a great little Italian restaurant where I had a coupon for a free dessert.  Yummo!  And surprise!  Paul had invited my whole family to join us for dinner!  He had surprised me again much like last year!  The photos are from that family dinner.  Fun times.  Enjoy the photos.  (Sorry to Paul and my mom for having NO PHOTOS of you.)    🙂

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Youth Camp!


Image via Wikipedia

Hard to believe it, but I sent a kid to YOUTH camp this year!  Wow!

I must add here that I think 11 years old is too young to have gone to youth camp, but Daddy said it was okay.  So Elliot went off to youth camp at age 11!  Crazy, right?

I know he will have the time of his life with those crazy folks!  Can’t wait to hear all the stories.

We packed up his stuff . . . including jeans, a set of clothes that he “can trash,” swim suit and swim shirt, and his costume!  The last night of camp includes a costume dance party!  The theme this year is mythical creatures/ Mario games or something like that.  Elliot is dressing as Luigi — a pretty easy costume of green shirt, blue overalls, green hat, and a mustache.

Here are some photos of the morning of departure – the bus, the kids, the prayer.  And then they hit the road!  Fun, fun!

Just hoping Elliot remembers his sunscreen!

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Now and then I find myself frustrated and disappointed.  I’ve told you before that sometimes it’s just easier to stay at home when you have children with disabilities.  It’s easier to stay at home than to venture out with folks who just don’t get it.  There are well-intentioned folks who don’t have a clue and say things that are hurtful.

I recently stumbled across an awesome blog post that speaks to this issue.  This particular letter is intended for grandparents, but I would like to post it here and suggest that it’s more general than that.  I think it’s a letter for all family members, all friends, all church acquaintances — everyone who knows a parent of a child with disabilities.  And this particular letter speaks of children with a specific psych disorder.  Again, I would like to suggest that you read it in a more general way than that.  I am posting it here for people who know a parent of a child with any psych disability.  For anyone who knows a parent of a child with any disability.

The letter is a reminder that unless you live with the child, you have no idea what life is like.  You have no idea of the struggles.  You have no idea of what issues are currently a challenge.  And you may not have any idea what it’s like to let some things slide so that you can concentrate on some bigger issues.  Ever heard the term “choosing your battles?”  I assure you that parents of children with disabilities know the term and know it well.

The letter is a reminder for us to keep our mouths shut whether we agree with what we see or not.  The letter is a reminder for us to not grumble even if we are affected by a child’s behavior or choices.  Instead, we can choose to support the parent in their struggle.

I think the letter is powerful.  I certainly know folks in whose faces I’d love to shove this letter.  We all know folks who have said too much at times.

But I’m also sure I’ve over-spoken to friends before.  It’s a reminder to me to keep my mouth shut and instead to pray for my struggling friends.

Read the letter here.  Consider how it may help you support a parent you may know.

And let me know what you think.  😉



Chloe ripped her bed tent.  I’m so, so sad.

When I put her to bed I noticed some holes near the top of the bed tent.  I cringed and worried a minute and then said a quick prayer that it would hold.

The next morning, Chloe was in the living room playing when I came out after my shower.  And she was supposed to have been zipped up in her bed tent.  My heart sank.

Sure enough, her bed had a big o rip all along the top where I had seen the small holes beginning.  She had managed to rip that delicate sheer material all along the top and slip her little Houdini body out through it.  She was a Free Bird once again!  Ugh.

That day, I did a quick repair with needle and thread — a whip stitch every 1/2 inch or so.  I planned to go back and do a better job of it the next day when I had more time.  Again, I said a quick prayer that it would hold.

That’s when I heard the Rrrrriiiippppp! sound come from Chloe’s bedroom.  I wanted to cry.  I went in her room just as her little Houdini head was slipping through the newly made hole.  I surprised her like crazy and was a little loud trying to keep her startled so she wouldn’t attempt it again.  Since it was past our bedtime, the quick fix was Duct Tape.  And I threatened her that if she broke it again I would return and be really loud and scary.  She did not want that so she stayed put for the night surprisingly.

But the next morning, she busted through the tape to freedom.

Our days of Chloe safe in her bed have again come to an end.  Sadness.

The Nickel Bed Tent lasted 3 and a half months.  We paid $140 for it.  That’s $40 a month to keep her safely in her bed.  Hmmm.

I would turn around and order another one, but I have a feeling now that she knows how flimsy that material is she will very quickly rip another hole in the new one.  Ugh.

De ja vu. . . again.

UPDATED:  The next day, I re-fixed the bed tent with the Duct Tape and while Chloe was in a different room, I turned her bed around so the ripped side door is now facing the wall.  It’s not that she didn’t notice because I know she did.  But so far turning the bed around had kept her in her tent.  She did not immediately rip a new hole in the other side which surprised me.  We’ve had 3 nights of her staying put. . .  . Crossing my fingers once again!!  And surprisingly pleased with The Nickel once again . . .

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