Friday, July 29, 2011

To Help or Not To Help.... That Is the Question

I don't know if you read the comments on yesterday's post but all of them were super.

My friend, Elizabeth, raised an interesting question.  It was such a good one that I thought I'd just let it be the focus of today's post.

Here's her question in case you missed it:

"Lana, we were recently on a plane trip with a single mom whose two-year old son was completely and utterly out of control on the plane.

I have a question for you, and I know you can't answer for everyone, but I'd be interested in your input:

I desperately wanted to ask the mom if I could help (hold him and walk him up and down the aisle, play with him to distract him, something!) but I did not follow through on my urges.  Had I been sitting directly next to her or in front or behind, I absolutely would have (I think). (I was a couple rows back and across the aisle.)

How do you think you would respond if a stranger offered you help (not judgement or advice)?  Is it even MORE embarrassing and/or contributes to the problem, or, do you think it's a welcomed response?

I ask, I guess, because for those of us who do not have special needs kids, we don't always understand; we may judge, and assume the parent(s) can't or won't control their kids (whether special needs or not), and we need help in knowing how to best respond in that type of situation.  Offer help?  Or just stay the heck outta the way?

What do you think?"

Just as Elizabeth stated in her question, I obviously can't answer for everyone.  But I'm going to give you my opinion because you know I have one!

But before I get started, I need to let you know that my friend Elizabeth is wonderful.  She is helpful, sweet, friendly, and an all-around genuinely nice person.  I am in no way referring to her or her actions as I am answering this question.  Her question opens a dialogue and communication is how we learn to better help each other.  So cheers to Elizabeth for truly wanting to learn more about the special needs community because as we know, awareness is key.

Let's get started!

I don't believe you can ever go wrong by simply making a kind offer of assistance.

But here's the key:

Speak to the parent and not the child.  Make your offer short, sweet, and simple.  Make it good for the duration of the flight. (I don't mean you have to babysit the whole flight - see the example below)  And do not try to engage in conversation.  The parent is distracted enough and cannot focus on both her child and you.

This is what I would NOT do:

"Little boy, didn't your mommy teach you that big boys don't cry?  And that it's not nice to yell around other people?  You are wearing your mother out.  If you stop making such a fuss, I'll give you some gum."

You may think you're sticking up for the mom but this approach really doesn't help anyone.  And it's never smart to offer kids any food items at all without asking the parent's permission first.

Here's what I WOULD do:

A child is crying without ceasing on a flight and just seems to be unable to calm down.  I would approach the parent and say, "Hi.  I wanted you to know that I am happy to help you out in any way I can if that would be helpful for you.  I have an iPad that I could use for watching Mickey Mouse with your child or I can walk him up and down the aisle of the plane for a few minutes, whatever you think might work.  If now's not a good time, I'm in seat 13B.  Just feel free to come get me.  I'll check back in a few minutes to see how you're doing."

Here's what that tells the parent whose child is wigging out:

1 - There is at least one person on this plane who doesn't hate me and my child.

2 - While I may not take him up on it, I really do appreciate the fact that he did something rather just rolling his eyes and heavily sighing like everyone else around me.

3 - There are still some nice people in the world.

4 - I was ready to put my head down and cry alongside my child but now I can keep going just a little bit longer because I feel like I have an ally.

Again, the parent may or may not accept your offer.  That's not really the point, to my way of thinking. The issue is letting that parent know that you have been right where they are, you remember what it's like to travel with small children and how unpredictable their behavior can be, and while you're willing to help, you also want them to know it's OK.  

And I think that is just a nice thing to do for anyone with children, special needs or not.

Now with a special needs kiddo, odds are good that you'll get turned down in the actual handling of the child, unless you happen to be a therapist or special ed teacher or something super nifty like that and you swoop in to save the day for which the parents (and everyone else on the plane!) will be eternally grateful.

But you might be able to help by getting a bottled water out of a bag or refilling a sippie cup with juice or starting a DVD while the parent is holding the child to calm him.  Those things are just as helpful, if not more so, because while Lily might question a stranger holding her, she doesn't care in the least who gives her a bag of pretzels.  Actually, Lily probably wouldn't care if a stranger held her but that's my child's personality.  Lily might have a tantrum in an airport and there might not be a dang thing you can do to help me.  But by simply making the offer, you have helped me more just by being nice to me than actually doing any task.

Bottom line is this - if you offer help in a kind and non-judgmental manner and a parent gets mad at you and tells you to mind your own business, they are the one with the problem, not you.

Sometimes, I think we worry so much about offending that it prevents us from doing some really nice stuff for people.

And I, for one, like it when people do nice stuff for me.  And I like doing nice stuff for people.  And I don't want to not do something nice for someone simply because I'm fearful of their response.  

Remember that bumper sticker you used to see so much that said "Practice Random Acts of Kindness and Senseless Beauty"?  Well, I'm not so much concerned with the senseless beauty part.  But let's make a pact, OK?

Let's be kind.

To people we love.

To people we don't know.

We are responsible for our behavior -  not anyone else's.

So let's just be kind.

Thursday, July 28, 2011

Flying the Friendly Skies.... At Least I Hope So

Traveling with kids is always a challenge.  But traveling with special needs children can add a whole nother layer of challenge to the experience.  Now that I know we're going to be flying to California in October, I have a little over two months to worry about Lily on the airplane.

So can you guess what I've already started doing?

If you said googling tips on traveling with special needs children, then you're correct!

And wouldn't you know it?  I've come across some pretty helpful stuff already.  And really, most of what I've found is helpful information for all kids and their parents.

Even though we're coming up on the end of summer, so many families travel throughout the year nowadays that I thought I'd go ahead and share some of the best ones with you.

Pick Your Seat.  If at all possible, book the first row of your section so that your child has nothing (or no one!) to kick but a wall.  Yes, you lose the storage under the seat in front of you, but you gain peace of mind in not having to tell your child to stop kicking the seat in front of him 362 times.  If you can't get the front row, maybe another adult or older (and very patient) sibling traveling with you might be willing to take the seat in front of your child.  At least then your child is kicking someone who loves him no matter what!

Take The Carseat.  Yes, it's just another thing to carry.  And it's not even an easy thing to carry.  Especially when you're thinking your kid might take off at any moment and you need to be light on your feet and able to react quickly.  But it's worth the trouble because if your carseat is anything like Lily's, it provides 5-point maximum restraint - something that will be much more beneficial than that little lap belt. And I'm not just talking for safety reasons here, if you get my drift.  That lap belt would take Lily all of three seconds to realize she could undo which she would then proceed to undo 362 times.  Fortunately, Lily likes her carseat and she's comfortable with it so it will remove the "new seat" factor that an airplane seat would present.

Tape a Picture Over the Lap Tray Latch.  This tip I LOVE.  How many times have your kids discovered that sliding that little latch over releases that little tray and it falls down?  And then they put the tray back up and repeat the whole process 362 times?  As soon as you get to your seat, before your kid realizes what that white thing on the seat back is, tape a fun picture over the whole tray table that covers the latch and leave it there the whole flight.  I've even seen those hanging seat organizers with pockets for crayons, coloring books, handheld games and the like that you might put there, especially if you know the person sitting in the seat in front of your child.

If At All Possible, Fly Non-Stop.  It's hard enough waiting in line to board and getting settled in your seat without having to do it multiple times.  Depending on how much it is, it just might be worth the extra money you spend in order to prevent possible meltdowns.  

Bring Lots of Stuff.  Lots.  Handheld games, iPads, iPods, DVD players, laptops, headphones, crayons and coloring books, puzzles, books, magnetic games, lacing cards, stringing beads, non-staining playdough, Barbies... whatever will help keep your child busy and happy.  Don't bring it all out at once.  And don't let your child see all of it.  Just hand him one thing.  Or ask if he wants to color or do a puzzle.  Then as you see him start to get a little restless, put that thing away and bring out something different.  Make each thing last as long as you can.

If You Need Help, Be Specific.  As parents of special needs children, we've had lots of time to learn the ins and outs of caring for our kiddos.  Just saying your child has autism might not mean anything to the gate agent.  Be specific.  For example, if waiting in a crowded terminal overwhelms your child, briefly explain that to the gate agent and ask where there might be a quiet corner where you could sit with your child until time to board.  Be nice and remember - you catch more flies with honey than with vinegar.  Who knows - if you're really nice, you might get a better seat.  I've seen it happen with my husband multiple times.  He has the gift of schmooze and it comes in handy!

Give Yourself More Time Than You Think You'll Need.  Rushing around will only make you more cranky and frantic and therefore your children more cranky and frantic.

I don't really know how I feel about this next tip yet.  

We've all been out in public, seen a child having a tantrum and and made an automatic judgement call about how we would handle that kid if he belonged to us.  I've done it myself.  Of course, my eyes have been opened and I now understand that I don't know it all!  I'm not so quick to judge anymore and I'm much more likely to offer help.  

To address this judgement issue, I know a couple of moms who have resorted to having their children wear special t-shirts when traveling.  T-shirts that let people know their children have autism and that some of the behaviors they exhibit are attributed to that.  

For example, look at these tees from Cafe Press:

Autism is my Superpower T-Shirt

Not Rude (Boy) T
Think Before You Judge Autism T-Shirt

They even have shirts for moms or dads to wear if you don't want to put one on your child:
Autism Behavior Shirt

And then some of the shirts have a little more direct message, I guess you could say:
I Have Autism - T
Staring? T-Shirt

Hey Keep Staring At Me And You Just Might Cure My

Weird Autistic T
My Child Has Autism T-Shirt

While I have felt like saying some of the things that are on those last five shirts, I don't think I would ever actually wear one.  Or put one on Lily.  If I'm asking people to be understanding or seeking to educate them, I don't think I'm going to accomplish that by being antagonistic.  Though staring and rude comments directed to me or my child can be perceived as antagonistic, I certainly don't have to sink down to that same level.

A large part of me thinks it's no one's business and if Lily has a meltdown, then she has a meltdown. We deal with it and move on, just like we would if we had a child without special needs who was having a tantrum.  But the way we handle these situations is what makes them a little more unique.  For example, if we needed to do a holding position with Lily to calm her down, it's going to look a little strange to outsiders.

I'll have to think on this one a little more.

Any travel tips you want to pass along?

And what do you think - T-shirt or no t-shirt?

Talk to me!

Wednesday, July 27, 2011

All Clear On The Nasal Front... Plus Some Great News

Just in case you missed it, I posted a little something extra last night in honor of Reagan's birthday so be sure to read it!

So, the ENT visit yesterday turned out to be pretty uneventful.  She checked up Lily's nose and declared it free of foreign objects.  Just to be 100% certain though, she pulled up the scans from Lily's hospital stay and she could actually see the nasal passages.  So now we know for sure that her nose is free and clear.

I'm not going to lie - Ryan and I were really hoping that doctor was going to pull out some humongous lima bean or something and say, "Well, problem solved! Now go forth and cry no more!"

No such luck.

I'm all out of ideas so now we just wait to see if the behavior resolves on its own.

In the meantime, I have some wonderful, incredible, exciting news that is an answer to all of our prayers:

Lily is going to California!

Well, not all by herself, just to clarify.  Our whole family is going.

We got a phone call that Dr. Michael Goldberg, the doctor we were hoping to see in California, is going to take Lily on as a patient.

We are beyond excited!

The appointment isn't until October 11th but with the way time flies lately, it'll be here before we know it.

When I found out we were in with the doctor, I asked Reagan this: "Reagan, would you be interested in missing a few days of school in October to go to California?"

Her response?

"You had me at missing a few days of school.  I didn't really care what you said after that."

Can you tell someone is really sad that summer is just about over?

Thanks to all of you for your prayers for California.

Now, if you'll just pray that Lily will recover from whatever mysterious ailment is going on with her and that we have a nice, easy time of travel, I will love you forever!

And Mr. Steve Jobs, if you're reading this, October would be a great time to donate your private plane for a little flight from Texas to California and back, I'm thinking.  Have your people call me.  We'll talk.

Tuesday, July 26, 2011

My Baby is.... 15?!?

Pre-Post Note - I apologize for the weird gaps in between some of the pictures.  You know I am a technical dunce and my computer geniuses are at camp this week.  I'm pretty impressed that I managed to figure out how to do the scanning all by myself.  I can't be bothered with gaps, too.  Read on...

I know this is highly unusual but I couldn't miss out on putting another post up because today is a special day.

Today is Reagan's 15th birthday.

Fifteen years ago, I gave birth to the longest, skinniest baby the Askew and Rush families had ever seen.  At her two week check-up, the pediatrician told me to go home and put some meat on her bones.  I've been working on it ever since!

Reagan's at Student Life Camp this week and I'm finding it really strange to not have her here, putting a candle in her pancakes at breakfast and making Ms. Amy Lingenfelter Cake for after supper.

My Reagan is one of a kind.  Most people think she is quiet, maybe even a little shy.  But once you get to know her, you discover that not only can she talk your ear off, she's quick with the one-liners.  She is definitely the clown of our family.

One of the things I'm most grateful for is seeing what a great big sister Reagan is, something none of us would've known if The Bird hadn't come along.

Happy Birthday, my sweet Reagan!  We love you bunches!

We're Off To See The Wizard... I Mean ENT

First of all, I need to tell you that we made it through the evening yesterday with not a single crying spell or meltdown or anything.


We had a perfectly lovely night with our perfectly lovely baby girl.  And for that, we are quite thankful.

These 6 PM crying spells of Lily Bird's had me remembering when Ryley was a colicky newborn and we knew she would begin crying at 5 PM every day and it would last an hour and a half.  It was brutal.  Each day, as 5:00 approached, a knot would just start forming in my stomach.  It was like knowing something awful was going to happen and you could do nothing to stop it.  I was so happy when those days were behind us.

And I am hoping and praying that maybe we have turned a corner here and these 6 PM meltdowns will become a thing of the past.

The middle of the night was more rough than the last couple of weeks.  Lily saved her crying spell for 1 AM and she finally fell back asleep around 2:30.  After trying several things, I finally just got in her bed with her, something she generally doesn't like.  But I think she was so exhausted by this time that she just kind of collapsed beside me and fell asleep.

One final piece of the puzzle we're looking into today.... going to see an ENT at 1 PM to have Lily's nose thoroughly investigated.  If there's something up there, this doctor's going to find it.  And hopefully get rid of it.

I'll go ahead and let you know this - if there's something up there, I'm not taking pictures to share with you.  It'll be a full time job just standing upright, taking deep breaths and trying not to pass out.  I'm pretty sturdy with most medical procedures but something about the nose and foreign objects makes me feel a little woozy.

I can't tell you how many times I just shake my head at the irony of having not one, but two "medical" kids.

When I was in second grade, I knew beyond a shadow of a doubt that I wanted to be a teacher.  I also knew, beyond a shadow of a doubt, that I never wanted to be a nurse.  I did go to college and get a teaching degree and I did become a teacher.

But I'll be danged if I'm not a nurse, too.

God does have a sense of humor, and He often displays it in my life.  Today's ENT appointment is just another example of that.

Have a great Tuesday!

Monday, July 25, 2011

And The Doctor Said....

I was hoping to get a post done over the weekend to fill you in on the neurologist's appointment but I just never had enough time to sit down and gather my thoughts.

So here it is:

In comparing Lily's two MRIs (one done at 5 months of age and one done at 4 years of age), it appears that the spots of missing white matter are new.  Or at least, they weren't present in the five month MRI.

But.... are they new as in really recent and tied to her irritability?  Or are they new as in one year old?  Or two years old?  Or are they in some way tied to the regression that took place when she was 18 months old?

And the answer is.... no one knows for sure.


So what's the next step for Lily?

Another MRI in two months.

But there is some good news and that is what we'll choose to focus on.

First bit of good news - Lily was tested for Multiple Sclerosis, a condition very much tied to brain white matter loss.  The test results were 100% negative.

Second bit of good news - When people have degenerative white matter conditions, the symptoms manifest themselves in very physical ways, such as falling down frequently, being unable to keep your balance, losing muscle control... things like that.  Lily has absolutely none of these symptoms.  Therefore, the neurologist is very comfortable in saying that Lily does not have a degenerative white matter condition.

We are praising the Lord for this report!

Because of all this talk of white matter, I have spent some time on the Internet (the source of all things true and accurate when it comes to medical information!) and learned just enough to be dangerous, I think.

But one interesting thing I did pick up that was confirmed by the neurologist as being true and accurate is that all of us can have temporary spontaneous white matter degeneration and regeneration.

During a time of acute illness, a person's white matter can degenerate and as they get well, it can regenerate.  All on its own.  All perfectly normal.  And all without anyone knowing.  Because most of us don't run out and get an MRI every single time we get sick.  But odds are that when we are sick, our brains look just a little bit different than usual.  Interesting, huh?

I say all that to say that we may have just caught a picture of Lily's brain when something is going on that may have nothing at all to do with the brain.  And the only other MRI we have to compare it to is when she was recovering from open heart surgery, a time that her brain may also not have looked "normal".  Make sense?

So the next MRI will take place when Lily is perfectly healthy and displaying no unusual symptoms of any kind.  Then we can assume that the picture we get that time will be her "typical" brain.  Or as "typical" as a child with her medical history can be!

OK - enough brain talk.

How is Lily acting now?

I'm glad you asked.

Most of the time, things appear to be mostly back to normal.  Or as normal as things get around here.

Lily is still having one or two unexplained crying spells a day.

Something will set her off and she simply cannot be soothed.  She will want you to pick her up and then immediately will want you to set her back down.  She can't seem to get comfortable and can't decide if sitting still or moving around feels better.  So she does some of both.  And sometimes she's angry while it's happening and sometimes she's simply sad.  It's quite frustrating for everyone and hard on a poor mom's emotions when she can't calm her child.

This week, I'm really focusing on what possible triggers, if any, might be setting her off.  It tends to happen for sure around 6-ish in the evening so I'm going to be watching closely for signs of discomfort or frustration or sadness or anything to see if I can get some clues.

Ryan even called the After Hours Clinic yesterday to ask if maybe Lily could've shoved something up her nose and it's been missed through all of this. (She's discovered her nostrils in the past month or so and is fascinated with them.)  The opinion seemed to be that if it was something hard, it would've shown up in the CT scan.  If it was something soft, like food, it would be really stinking now.  I've never had kids who put things up their noses so this isn't familiar territory.  Anyone have any thoughts on this?

OK - my fun little blog is starting to sound like a medical journal.  I promise to share something cute and totally non-medically related before the week is out.

Enjoy your Monday!

Friday, July 22, 2011

A Bump In The Night

This is how Lily spent most of last weekend:

Not typical behavior for our smiley, happy girl.

In case the picture is not quite clear enough, she is buried under the covers of my bed.  She wanted her to head to be completely covered and then she would just lay there, watching the iPad in the dark. 

At first we thought it was kind of cute.

Then, combined with some incredibly irritable behavior, we started to wonder if something more might be going on.

That brings you to the beginning of our latest journey.

 In an effort to get you all caught up, I'm going to give you, in the words of Joe Friday: "Just the facts, ma'am."

Friday afternoon and night - Lily was especially irritable and couldn't be consoled.  She would be fine for a little while, then just burst into tears for no apparent reason.  Our baby is not a weeper so we were a little startled.  The unusual behavior continued on Saturday.

Saturday night - We take Lily to the After Hours Kids clinic to have her checked for ear infection, UTI, have some simple bloodwork done... just a good old fashioned work-up to make sure something wasn't going on that we were missing.  Nothing unusual showed up so consensus was possible headaches and ibuprofen was suggested solution.

Sunday night - We are tucking Lily in and I feel a very large bump on her head of unknown origin.  Thinking this could be the possible answer to the unexplained behavior (concussion, perhaps?), we whisk her out of bed and head back to the After Hours Kids clinic.  They call our pediatrician who advises going to the ER and getting a CT scan, which we do right away.

Then the CT scan looks a little funny so they recommend an MRI.  Since scheduling an MRI on an outpatient basis can take as long as a month, it was decided to admit Lily to the hospital so they can do the test Monday morning.

By Monday morning, they have decided to do an MRI, an EEG, and a lumbar puncture, all of which show something a little hinky.   The puncture just shows a very low immunoglobulin number, not anything horrible.  The MRI and EEG are abnormal and doctors are concerned about the white matter of Lily's brain.

Ryan and I mention that Lily had an EEG and MRI done at Texas Children's Hospital when she was there for her open heart surgery.  The CD's of those tests are Fed Ex'ed to Austin.  

We are told we have to stay one more night at the hospital.  Joy.

Tuesday morning - We are released from the hospital and told to follow up with the neurologist.  Neurologist receives the CD's from Houston and notices some changes so calls us to make an appointment sooner rather than later.

Wednesday - Lily goes back to school and seems to be her normal self until about 2 PM.  I pick her up early from school and we battle the same up and down behaviors as before.  She eats no supper and doesn't really fall asleep until about 2 AM.

Thursday - Lily wakes up happy and other than not eating breakfast, seems to be fine.  We decide to try school again and she makes it the whole day.  Of course, I have her on ibuprofen around the clock at this point so I'm sure that's helping things.  I spend the day on the phone battling for either information or an appointment this week with neurologist.  After four phone calls, we are told to be at neurologist office at 12:30 Friday - tomorrow!  Sometimes, the squeaky wheel does get the grease!  

Lily eats a good supper and sleeps great through the night.

Friday - Wakes up super happy and smiley, like our old Bird.  Playing hookey from school today because we have neurologist appointment at 12:30 to discuss MRI findings and a plan of action.

So there you have it.  

A simple knot on the noggin started us down this path towards the brain and all it's mysterious workings.  

We don't know yet what the issue with Lily's white matter means or if it's even an issue.  We don't know if that has anything to do with her behaviors over the weekend.  We'll just have to wait until 12:30 to find out more.

I'll keep you posted!

Wednesday, July 20, 2011

I Get By With A Little Help From My Friends

Many of you have asked how Ryan and I manage to keep going despite all the questions, worries, concerns, and just plain day to day happenings with Lily Bird.

Let me give you a little peek into my messages over the last few days:

"You have been on my mind and heart the last 4 or 5 days.  I have been praying for you.  If you need ANYTHING please let me know.  I can sit at the hospital with Lily, or run errands, get dinner, do laundry etc.  Praying for rest, peace, comfort, wisdom for doctors and for precious Lily.  Praying Isaiah 41:10 - God will strengthen you and help you; and uphold you with His righteous right hand."

"Just wanted to let you know that we have been praying for all of you.  Thanks for sharing those pictures on the blog.  Lily is one loved little girl!  Glad to see you are back home and hopefully you can all get some rest tonight.  If that sofa in the hospital room is what you sleep on, then I know you are going to need it.  Please let us know if there is anything you need and we are more than happy to help."

"Praying for u guys."

"Missing your face. I know you are with Lily-poo.  Thinking about you guys.  Word."

"Been thinking about you.  Now I know why... Love u"

"Our family is praying for your family."

"Lily was to be mine this Sunday so I knew all was not good.  During the sermon, Pastor Ryan asked us all to write down the name of someone we knew that needed encouragement.  The name that should have popped into my head was that of a friend I've been talking, texting and crying with this last week due to a broken heart (boyfriend dumped her).  She has certainly needed encouragement.  But I was in the service because Lily was not at church and AL told me I should pray for you. So I wrote your name down and K and I have had you specifically in our prayers.  Let us hold unswervingly to the hope we profess, for He who is promised is faithful.  Looking forward to answers for you."

These are just a few of the many, many, many messages Ryan and I have received.

I also have another friend (and faithful blog follower) who was led to pray specifically for Ryan and I every day for the month of July and to send those prayers to us.  So each day in my email, up pops a prayer written and prayed just for me.  She felt like she needed to do this at this exact time - even before we knew of any potential trouble brewing on the horizon.

I ask you - how could you not make it through the day with friends like these???

With all of this prayer and encouragement, Ryan and I know that we are never alone no matter what we face in our family.

Friends like that?  Priceless.

Tuesday, July 19, 2011

Back Home

For those of you following along on our latest adventure, we were released from the hospital this morning around 10 AM.  While everyone took very good of Lily Bird, we couldn't get out of there fast enough!  We're very happy to be back home.

I'm a little too worn out now to give the details of why we ended up in the hospital and what the plan is from here so I'll get you caught up tomorrow.

In the meantime, have a look at some pictures from today.

Lily doesn't always think staying in the hospital has to be all bad.  The service is pretty good -  all day pj's, not one but two packages of fruit snacks right after breakfast and unlimited iPad viewing.  If she could just get the doctors and nurses to leave her alone, it would almost be like a vacation.  

Well, at least for one of us.

Of course, that pesky IV (in her foot) is not the most comfortable thing in the world.

So our nice nurse, Ryan, took that annoying thing off right away.  Just kidding - Ryan's the "manhandler" - Kyla's the nice nurse.

Then Kyla said we could change into her own clothes.

And we're off!

Only one quick stop to pick up some delicious take-out lunch from Tacodeli - much better than hospital food.

Looking at those pictures, you'll be relieved to know that Lily has now had a shower and is styling a much better hairdo at the moment.

We appreciate all of your well wishes and prayers.

Talk to you tomorrow...

Monday, July 18, 2011

A Little Something Unexpected

To say that we've had an eventful last 24 hours would be an understatement.

We are currently checked into the hospital, preparing Lily to have an MRI, something we hadn't known we would be doing today. There's no need for panic - it's just another bump in the road in the trip known as "Lily Bird". I truly believe God's got some new information for us and this is how He's chosen to share it with us. I am confident we're going to discover something valuable from this experience that will make a big difference for our Bird.

I'll be back tomorrow with more details on our "weekend of adventure".

For now, we would be very grateful for your thoughts and prayers.

Friday, July 15, 2011

Fabulous Friday Finds

Since I've been on the Twitter, I get little updates on some of the most interesting and unique things people have discovered online.  I continue to be amazed at all the stuff there is out there.  Stuff I didn't even know I needed!

I thought it might be nice to share some of the those great items with all of you.  

The first one is called Safety Tats.

My first reaction to these was, "Why would I want to stick a tattoo on my child publicizing his diagnosis?"  But then I thought how helpful something like this might be at an amusement park or mall or sporting event - any venue with lots of people and the possibility of losing your child for a moment.  Their slogan is "Sticks to kids because they don't always stick to you", a statement that applies to all kids.

For kids with special needs, these could be even more helpful.  My nonverbal daughter is not going to be able to explain to an adult if she is lost.  But a tattoo would solve that problem.  Or how about a child going on a field trip who is highly allergic to peanuts.  Anyone can easily see the tattoo and know to avoid nuts.

And since most kids love wearing colorful band-aids and stickers on their bodies, I think a child wearing one of these cool tattoos would be the envy of their friends.

There are several kinds available and you can write any information you like on the tattoo.  You can even get them with those black and white code boxes that you scan with a smart phone so you can put even more information.  Might be nice if you don't want to have your child's name on the tattoo for everyone to read.

Chalkboard Place Mats just look like a fun item to have handy at a restaurant while you're waiting for your food to arrive.  Or in the car just to pass the time on a long drive.  Or even at home when you're trying to teach your child to stay at the table until everyone's done eating.  I think my teenagers would even like doodling on these.

I just discovered the French author Herve Tullet.  All of his books are quite intriguing but I especially like Herve Tullet The Coloring Book.

The Coloring Book

It's full of fun artwork and activities for kids of all ages - not your typical coloring book.  Here's one sample page:

If you find yourself becoming a fan, be sure to check out his other books like The Book With a Hole and Press Here.

Japanese masking tape is a fun and inexpensive way to decorate plain glassware.  You know how you see all those cute cups with fun summer patterns on them?  But who can afford to keep buying cups and where are you going to store them all anyway?  Stick this fun and colorful tape with all kinds of designs and patterns on your plain cups.  You'll look like you have tons of beautiful glassware - at a fraction of the cost and none of the storage!  It might even work on things like folders and notebooks for some fun school supplies.

Glass with Masking Tape

I saw these Emily Green imagination mats when we were on vacation in Aspen.  They are so bright and colorful and look just like kid drawings which I love.  The front side is Emily's artwork but the really neat thing about these laminated mats is the backside is plain white.  Each mat comes with write-on wipe-off markers and your child can create his own original artwork on the blank side.  Yet another fun way to keep kids busy at the table.

Toddler Bites Hot Dog and Sandwich Cutters may not seem like a truly necessary item and maybe they aren't.  But ask any harried mom who's trying to quickly pack multiple lunches on a busy school morning if she might like these.  I bet she says yes!

Bento accessories  are for those moms who are not harried in the mornings.  Those moms who rise before their children and get fully dressed.  Those moms who take the time to write personalized lunchbox notes for each child, complete with original artwork, and then tuck them in next to the homemade chocolate chip cookies.

You know who I'm talking about.

For those moms who want to send their child to school with the ultimate unique lunch, check this out:

Bento Lunch Decoration Accessories Value Set and Case for Bento Beginner
If you're using Bento style containers like I do, you can turn your child's lunch into a work of art and present it beautifully.  I myself have two children who do not care one bit if their cheese and ham are in heart shapes and their rice is molded into the shape of a fish.  I have one child who would love this but thankfully, she is old enough to do it herself.

Because I am not one of those moms.

Well, that's it for today, folks.  Enjoy your weekend and I'll see you Monday!

Thursday, July 14, 2011

What's On YOUR Nightstand?

I have mentioned several times that I love books. 

And I love to read.  

It's the first thing I do when I have free time.  I usually carry a book in my purse or have one in my car so that anytime I find myself with a few extra minutes, I can read.

I could never work at a bookstore because I would never get a paycheck.  In fact, I might end up owing the store money on payday!

So let's take a look at my nightstand.  Here it is:

Looks nice, doesn't it?  

Organized.  Books in neat stacks.  Eyeglasses at the ready.  Kleenex, lotion, and lip balm nearby.  Everything needed for a nice time of settling in to read.

But, for the sake of full disclosure (and at the risk of my mom rolling her eyes), I have to be honest and show you this:

The stacks of books piled on the floor in front of my nightstand.  Just sitting there, patiently waiting to be read.

I just can't seem to help myself.  

I'm at the age now where forgetfulness is an everyday occurrence.  If I take the books from the floor all the way to the shelves in my office, I forget which ones I want to read.

Plus, my office shelves are pretty much full of books already so there's simply not room for too many more.  I could really use a trip to IKEA to purchase a couple more matching shelves but it's only been a year since Ryan put the last ones together (all five of them!) and I don't think he's ready to do more yet.

Some of you might be saying that I could just get rid of some books but I find it difficult to part with them.  I have pared down my books twice in the last year and I really don't think I have anymore that I can just give away.  I really need the ones I have.

Plus, my side of the bed is opposite the bedroom door so anyone glancing into my room only sees a nice organized nightstand and not the dirty little secrets I have hidden on the floor.  Only you, me and my family know about it.

Lest you think I'm only reading for pleasure, let me assure you that each stack on my nightstand is a certain "parking spot" for a certain type of book.

Back left corner are my books on autism.  That's actually the highest stack if you look closely.

Front left corner is whatever book I am currently reading and underneath that is a book called Listography that Ryley and I are "writing" together.  A book of nothing but topics for lists - sheer joy for both of us.

Around the lamp in both vertical and horizontal stacks are devotional type books that I can quickly grab in a moment when I need a little extra inspiration or encouragement.

Front right corner are my Bibles.

Books on the floor are in no certain order but they will be once the hit the nightstand.

Now you know that there is a bit of a method to my madness.

So it has come to this...

...piling books around myself and settling in, happy as a clam, to read.

My name is Lana.... and I'm a book-aholic.

Wednesday, July 13, 2011


Yesterday's post about happy things got me to thinking.

I spend quite a bit of time trying to control my life.  Planning things out to the smallest detail.  Making a back-up plan in case the first plan doesn't work out.

Take packing for a trip, for example.

I start by making a list, planning what I'm going to wear each day, down to the jewelry.  A few days before we leave, I quit wearing those items so I can be sure they are washed and ready to be packed.  The day before the trip, I put everything in the suitcase.  Then I add my make-up, toothbrush and that kind of stuff as I finish using them the morning of my departure.  Finally, I stand over my suitcase and ask myself questions like:  What if if rains?  What if a cold front blows in?  What if those cute shoes hurt my feet?  Then I begin throwing in items like a raincoat, a cardigan and scarf, an extra pair of comfortable shoes.

No matter what circumstance presents itself while I'm traveling, I want to be prepared.

I might have a tiny control issue.

When someone asks, "Do you have a kleenex?" or "Do you have a breath mint?" or "Do you have a band-aid?", I get great joy out of being the lady who can answer with a resounding, "Yes! I've got that right here in my purse!"

Hey - don't mock me.  We just agreed that it's the little things in life that make us happy, right?  And if we were ever stuck on a deserted island, you would want me there, I assure you - if only for my purse!

But here's the point I'm trying to make:  Sometimes, the new, the unexpected, the unplanned events are the very things that bring us the most joy.

Think about some of those items on your own Happy Things in Life list.

Aren't many of them unexpected surprises?

For example, say someone in our church family brings homemade cookies to us.  Well, I wasn't planning to eat cookies today but you can bet your bottom dollar I will be now!

Or has this ever happened to you?  You find a cute t-shirt and it's on sale.  So you go to buy it and the salesclerk tells you it's an additional 20% off!  I wasn't planning to spend 20% less but I'm certainly not going to turn it down!  

Now, I'm not saying that planning ahead is a bad thing.  Or that having a daily routine is something to be frowned upon.  Or that being prepared isn't a worthy goal.  I mean, it's nice to be able to give someone a breath mint when they are in desperate need of one, right??

But so many times, we try to control our lives when, in reality, the unexpected is the very thing that brings us the joy we are seeking.

An occasional disruption in our daily routine can make the actual routine all the sweeter when we come back to it.  Think summer break here.  Or a friend asking you out for lunch when you were planning to stay home all day and do laundry.

I'll be the first one to admit that not all surprises are good ones.  I totally understand that no one plans to lock their keys in their car.  Or to get a speeding ticket.  Or to have a child with special needs.

But I do think that unpleasant surprises make us look for and appreciate the good ones all the more.

And in the case of an unexpected special needs diagnosis, I can honestly say this:  The challenges that Lily faces make me so much more appreciative of her accomplishments.  When that child does something, it's a big dad-gum deal!  And it doesn't pass by unnoticed or unrecognized.

We take nothing for granted around here.  And special needs child or not, neither should you.

So make a plan for your day and start working on it.  Make a list of things to do and start crossing tasks off as you complete them.

But don't miss those unexpected blessings around you.  Be willing to be surprised.  And get carried away by joy.

Tuesday, July 12, 2011

Happy Things in Life

I keep a list running in my head.

Not a to-do list or a grocery list.

No, this is a much more fun list than any of those.

It's my "Happy Things in Life" list.

It's full of random things that make me happy.  Stuff like a brand new tube of Burt's Bees lip balm, finding money in the pocket of a pair of jeans, getting a front row parking spot at the grocery store, a traffic light turning green just as I'm approaching it, or making a baby smile.

Nothing on the list is really big stuff.

It's not like a Bucket List of things I'm hoping to see or do before I die - just little unexpected things that make me smile throughout the course of a day.

Like when I make plans to stay home all day and it turns out to be cold and rainy.  

Or I think I'm out of Pull-ups for Lily and then I find a whole new package in the back of her closet.

So imagine my surprise when I heard about, a blog based on not one, but two books - The Book Of Awesome and The Book of Even More Awesome.

It's basically My Happy Things in Life list that someone actually thought to write down and get published!

Of course, not everything that makes the author, Neil Pasricha, happy are the same things that make me happy.

But I would've loved to have thought of this idea first - now that would've definitely been a happy thing in life!

Check out the blog for some fun, lighthearted reading that will make you keep your eyes open for awesome things all around you everyday.

And tell me - what makes you happy?

Monday, July 11, 2011


Saturday afternoon was a big day for The Bird.

One of the ladies in my special needs moms group hosted a water party at her house.  (Her son also goes to school with Lily).  All of the guests were families with special needs kids so it was a nice, safe environment where no one had to worry about behaviors or staring strangers.

Like all the kids there, Lily had an absolute blast.

First, she hit the inflatable water slide with her dad.

After going down the slide twice with him, she decided she no longer needed adult assistance.  She slid several times all by herself.  

The big splash at the finish line.

A close-up of the bathing beauty.

Of course, after a good swim, snacks are a must.

She even shared a few pretzels with Dad.

If you had told me a year ago that Lily would go to a party, run back and forth between the slide and the pool, actually participating in the fun, I wouldn't have believed it.  If you said that not only would she enjoy the water slide, but want to do it all by herself, I would've called you crazy.  

She just didn't really seem to notice fun stuff that other kids liked to do.  


Not anymore.

Not only did Lily have fun, but it was a pretty good party for ol' Mom and Dad, too.  

The party favor we left with?  

A heaping helping of hope.

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