Tuesday, June 30

Special Exposure Wednesday

I'm cheating this week. I have two pictures.

Both represent "inchstones" that we've celebrated in our house.

Climbing a "rock" wall
Playing with siblings cooperatively

The table that Tripp Trapp built

Okay, confession time. I have only one child with special needs. Only one who needed a "special" chair at the dinner table.

We have three.

When Will got his - paid for conveniently by another funding source - my oldest wanted it. Sat in it. ALL the time.

She got a Hipposmile for her birthday...similar model, different manufacturer. The quality is a bit less, but it was $100+ cheaper.

My littlest came home. We decided to use some of her birthday money and money left from a shower for her own Tripp Trapp.

Check them out. Will doesn't need a ton of help with positioning, but he does have low tone and needed some place to put his feet to "ground him" while eating. We LOVE ours.

Monday, June 29

Very interesting idea...

A friend sent this to me (Thanks Stacey!) and I found the idea intriguing. They are called CARE Memory Wristbands. Will wouldn't wear something like this, or I doubt it anyway...we've talked about getting him a medic alert bracelet as well but haven't.

What do you think about this? Would it be something you'd be interested in? Definitely an alternative to medic alert.

Sorry for my absence! Our electric was out Thursday and Friday of last week which put a crimp into my blogging. ;)

Wednesday, June 24

Do you take your own photos?

If so, I highly recommend www.mpix.com!

We just got our Littlest Heroes pictures back today, and oh my goodness...they do such a great job! Our photographer is sending us a CD, but when I asked about printing, she said she recommended Mpix because the photos are the closest thing to what you'd get from out of a studio.

Well, they are awesome, and super cheap! Try them out!

The Weight Gain Battle

Sorry for the lack of Blog Talk posting yesterday. I *think* my computer is finally back up to speed!

We have tried almost everything we can think of to fatten Will up...to help him gain weight. He has a feeding tube, so one would think it would be easy, but even when we were actively using the tube, he had a very difficult time. He has not gained weight in about a year's time. Since then, we stopped using the feeding tube (about 6 months now) and he is eating everything in sight. With no weight gain, much like the prior 6 months with the tube.

It makes no sense. We know all of the easy tricks. For some reason, I just don't think his body absorbs it properly. We assume he has a high metabolism.

For those who are curious, whipping cream, heavy cream, butter, olive oil, and avocado are great additives to food that you are boosting for calories. Carnation Instant Breakfast is good to add to milk, and I know that some make "super milk" by adding powdered milk to whole milk to boost it as well.

Any other ideas to add to this list? What are your tricks for weight gain?

Monday, June 22

The Roller Coaster of Life

Up and down, up and down. Over and over and over.

Last night, I took all three kids to the pool so that we could give their dad a much needed break for Father's Day. My oldest is a breeze...ran off to swim and play with her friends in the shallow end. I took the youngest two to the baby pool.

It has a locking gate. Baby proofed. Will and my 18 month old merely laughed at the lock. (Fine motor delay, my a$$!) Apparently, while up in the middle of the night, the two of them conspire ways to scatter at separate times, in different directions. Neither one wanted to play in the baby pool where they've been content for weeks now.

And how about that awesome 15 minutes at the end of every hour where adults can swim alone in the big pool? Surely it was meant to cause meltdowns in children. I know someone, somewhere was laughing at me every 45 minutes when the whistle blew.

It was a down moment.

Today, I took all three kids to Will's social group therapy. When he came out, the therapists were pleased with his progress.

We came home and ate, and much to my amazement, Will took over my lunch of brown rice, lentils and veggies, and ate half of it in addition to his ravioli and cheese cubes. He then pulled his younger sister (the one who he barely tolerated for the first several months she was home) into my bedroom to play.

Back up the hill. What a great morning!

Most days, I'm willing to sit back and enjoy the ride. Sometimes, though, it is all I can do to manage the hills on the way down. I'm hoping we can finish our day on the up.

How was Father's Day in your house? Here's hoping all of the men in our kids' lives had a special day!

Saturday, June 20

Happy Father's Day!

To my dear husband,

Almost ten years has passed since we first exchanged our vows and dreamed of a life together. We had no idea what this world held in store for us.

Who knew that it would bring three beautiful children in the way that it did? Who knew that one of those beautiful children would face significant challenges in life, and therefore challenge our marriage as well?

So, to the man who has changed as many dirty diapers as I have and given way more baths,

Who takes off of work and holds my hand during tough appointments,

Who wakes in the night with a crying child and allows me to sleep,

Who teaches them to ride their bikes, to fix a broken toy, to dress themselves,

Who sleeps in the hospital when we are there for an overnight stay,

I love you more now than I ever have.

Happy Father's Day!

Love, Heather

Thursday, June 18

Working Through the Bugs

I'm sitting here late at night running spyware scans and defragging hoping to reclaim my beloved computer.

Husband snoozing behind me.

Daydreaming about potty training Will as I found him totally naked again tonight an hour after bedtime. {Why yes, he had peed on the floor and pointed it out to me. Need you ask?}

I thought I'd leave you with some links to other thought provoking topics....

Wednesday, June 17

WANTED: Potty Training Advice

There we are...Will and mom. Laughing and happy as I tickle him during our Littlest Heroes photo session.

Now that you have that visual picture, I'd like to pose a question. Does anyone have ANY idea on how I can potty train this kid?

Suggestions? Please? (Now picture me begging.)

Monday, June 15

Blog Talk Tuesday: Summer Fun

My kids LOVE to play outside. Until it gets too hot, that is. Then Will has some heat intolerance issues and he melts. Literally.

On days that it is cool, we try to make the most of what we can do outside. One day a couple of weeks ago, we took the kids to a nearby playground that's been around for a few years. I had no idea that it was this type of playground:

So exciting! Totally accessible for all kids. I had wondered if there was anything like this in our area and there is. If I could get my computer to cooperate, you'd be able to see what fun they had. I'm still working on that one.

If you don't have one of these in your neighborhood or aren't sure, I highly recommend you check it out. (Some of these are called Boundless Playgrounds.) There is nothing better than seeing all kids able to play side by side. There was something there for the sensory seeker, the child who is wheelchair bound, and the occasional 17 month old who thinks she's a monkey.

Don't forget to link up to your post! If you need some instructions, check HERE.

Tomorrow's topic!

Tomorrow's topic for Blog Talk Tuesday will be "Summer Fun"!
Be thinking about what your kiddo likes to do for summer fun...this can be anything on your blog about this topic...whether it is just a picture, an idea you had, or a fun story! I plan to put this up late tonight so that it will be ready for tomorrow!

Another Miracle League game this weekend

Will plays on a team in the Miracle League. If you aren't familiar with this program, check it out...I'd suggest googling to see if there is a program in your area. I had no idea until a friend mentioned it to me.

My sister in law and I decided to enroll our kids and try it out, and every weekend, I am reminded of why I'm glad I did.

Will loves it. Our area recently renovated the field so that everything is accessible and easy for the kids. This past weekend I got to be his buddy since dad, his usual buddy, was working. It was so much fun! I'm trying to teach Will to be more independent of us, so I had him hit off a tee. He barely dinked it, but the point was that he did it himself!

Wednesday, June 10

Love the Child Life department!

No WFMW this week. I am so tired.

The super duper improved version of Will now comes complete with a set of ear tubes. ;)

Our saving grace today was the Child Life department at the hospital. Every other surgery has consisted of us telling the anesthesiologist to pick whatever "flavor" of scented air they put in the mask. Will never cared. Today, the woman came in and let him smell them and pick one...all the while, I'm thinking...whatever! He still doesn't care.

However, she rubbed the scent he chose in a mask and had him "smell" it. This way, he got to feel the mask and put it on while he smelled it. Apparently I need to be a little less cynical.

Worked like a charm. He put the mask on with little to no fighting. A+ for the Child Life department and a big win for us.

Tuesday, June 9

Blog Talk Tuesday: From our Medicine Cabinet

Will is getting ear tubes tomorrow. (Thank heavens.) He and my littlest one have cycled through ear and sinus infections all winter, and the little one is continuing to have issues because of suspected allergies.

A while back, I found a spray at the health food store called Xlear. It is just saline with Xylitol added. Xylitol has been found to combat bacteria, and it is now included in many types of chewing gum for this reason. Anyway, totally natural, totally safe. We started using it with both kiddos whenever we started to see their noses running, especially after a day or so when it isn't looking so clear anymore. I can not tell you how many antibiotics it has saved them from having. Totally recommend it...the stuff is awesome!
Remember to come and share your stories and tips below with Mr. Linky! Directions on how to participate are HERE.

Monday, June 8

Lose the Training Wheels

I saw a billboard for this today. Lose the Training Wheels is coming to our area and many others across the US during the summer. Will is too young for it, but I know when the time comes, we'll give it a go! Sounds like a really cool camp for many of our kids!

Here's a sneak peek...


These are just a few of the pictures that were taken during our Littlest Heroes Project photo shoot! The photographer did a wonderful job, despite having a clingy and cranky Will! (ear infection brewing...tubes Wednesday...thank heavens)

Saturday, June 6

The Littlest Heroes Project

My apologies. My computer has been wacky since the four year old and one year old have decided to fight daily over who gets to play. The one year old likes to tick the four year old off by turning the computer off, mid-game.

I digress.

Tonight we had our Littlest Heroes photo shoot. I can not wait for the pictures!

Tuesday, June 2

Blog Talk Tuesday: Summer Shoes

Is duct taping shoes to a child's feet considered abuse? Just curious.

Will was pretty clear that he did not like the pair of shoes that I bought for him to play in...you know, some that can get wet and muddy and be cleaned easily. (We also bought a nice pair of brown sandals that he's fine with.) He ended up taking them off last night and throwing them to the dogs next door, who of course, loved them. I'd say that's a pretty clear sign that he didn't like them, what do you think?

$60 later, we found out that he likes Crocs. I think.

Anybody else have this issue transitioning between seasons? Oh, the joys!

Monday, June 1

Celebrating Inchstones

I talk about Will an awful lot here. (By the way, that's his "cheese" grin...you know, the one the kids pull out when you pull out the camera?)

For those that don't know him.....his story goes something like this:
He was born healthy, or so we thought. Two weeks later, he had a diagnosis of 4q partial chromosome deletion. He went home with an NG tube through his nose because aspiration led us to the NICU here. Other than that, we had no idea what his life would be like.

In the past four years, we have had some major ups and downs, as any parent of a child with special needs. The ups have outnumbered the downs....quite possibly because this is how I choose to look at it, or possibly because we started life out with a diagnosis and went up from there. (We were told he might never learn to eat, walk, talk, and so on.)

His diagnoses now also include things like apraxia, dysphagia, esophgeal dysmotility, developmentally delayed, probable mitochondrial disorder, and sensory integration disorder.

His "other" list includes things like clearing his swallow study at 11 months, the time he learned to ride his tricycle at age 4, stopping tube feeds at age 4, and so on. You get the idea. The Celebration List.

Words and diagnoses don't define the person, and yet, our children are all too defined by these words. We choose to celebrate the "inchstones" in our family. (Milestones don't manufacture enough celebrations...we celebrate the things in between, or the things they don't write about in those books!) We choose to focus on what Will CAN do and the things he does everyday that no one thought he'd ever do.

Time for celebration!! What inchstone have you seen recently in your household?