Traveling with a child with disabilities

When we flew to California in 2012, I couldn't find much online about packing and traveling with a tube-feeder, wheel-chair user, etc.  Eli did great on our flight, makes him sleepy actually.  So, our trip to see my Great Aunt Wilma in the Napa Valley was a great success!

I had the opportunity earlier this year to write an article for our local children's magazine, called PlayDate, about traveling with a child with disabilities.  Here is a link to my article:

May 28, 2013
Traveling with Disabled and Special Needs Children
http://www.playdateyakima.com/2013/05/28/traveling-with-disabled-and-special-needs-children/

One thing that I didn't mention in my article was the wheelchair the airline offers for those who can transfer out of their wheelchair.  They will put you on this little skinny thing, and load you on the plane.  This wheelchair is small enough to fit down the center aisle of the plane, so you can then transfer into the airplane seat.  (I got in trouble for taking this picture!  So, I gotta share it!)

Eli is not able to sit in a regular airplane seat, so we had to take his carseat. 

MAKE SURE YOU CHECK IN EARLY - AND BOARD EARLY! 

You totally break a sweat getting the thing into the plane, belted in, going back out, getting your kid, carrying them up the stairs and into the plane (we have to do that on Horizon Air), and then buckle them into the chair in the tightest space you can imagine, while everyone else is trying to board and wondering why you are taking so long!  Stressful!  The flight attendants were WONDERFUL and our time in the air went by quick as Eli loved to nap while flying.  They didn't have any problems with Eli using his electronics!

 

Finally - to make our trip a little easier, I bought this "Roll n Go" to haul the car seat through the airports.  Looks like they are no longer available through the One Step Ahead catalog.  Bummer!

 

Hope you enjoyed my article, and if you have more questions, feel free to comment on this post and I'll get back to you!  Happy traveling!

 

 

I have a couple older articles I  wrote for them, too.  Mostly about my journey raising Eli.

March 15, 2013
This is My Life....and Our Life!
http://www.playdateyakima.com/2013/03/15/this-is-my-life-and-our-life/

November 24, 2010
The Book of MY Eli
http://www.playdateyakima.com/2010/11/24/the-book-of-my-eli/

It's been  an honor being a contributor to PlayDate, and having the opportunity to spread awareness for children with disabilities!

July Flies By...

Eli got to wear a band-aid for the first time.  (Well, for the first time that it wasn't because his blood was drawn or shots were given!)  He scratched his heal with his toenail.  His little legs never stop....and he's sock-less most of the summer...so it was bound to happen, I guess.
He wore it all of 10 minutes before it fell off because he's such a wild man...but you know me!  I had to take pictures!

We went for a family picnic up the Yakima River Canyon - and Eli took a nap amongst nature:

Then we went to the Yakima Folklife Festival.  It was HOT!  We tried shading Eli with his stroller, and were wiping him down with wet wipes, but he got a little overheated so we left.

We visited the Yakama Nation Museum in Toppenish:

I went on an overnight camping trip with my girlfriends from work.

Eli saw his GI doc in Seattle to discuss feeding issues.  His formula change over is NOT going well.  The manufacturer of Neocate One+ decided to quit making it!  Eli is not tolerating anything else well.  Doc came up with a plan....we'll see how it goes.  Here is Eli hanging out while we eat lunch at the hospital cafeteria:

Then, we visited the Central Washington Agricultural Museum in Union Gap.  We rode on a large wagon pulled by a tractor and got a guided tour of the place:

I had a Pampered Chef party on the last Friday in July

...and have decided to become a consultant in September!

The next day, I had a yard sale with a friend.  Exhausting!

Then, on Sunday evening we hosted a BBQ for our Life Group from church...

and they played a game of Wiffle Ball:

And one day while driving to town, Eli was in a very awesome mood!

Man, I LOVE this kid...and his laugh!  :)

Enjoying June!

In an effort to try and get my blog caught up....you get a 'reader's digest' version for each month this summer!

In June we had a wheelchair accessible deck built and it has been such a blessing!  We can roll Eli out there in any of his pieces of equipment!  Here he is in his Gazelle Stander:

He loves to go for walks in his stroller...round and round the deck.  Best part is....there is a ramp into the grass...now he gets to join the parties we have...and he can easily get to his new swing his Dad is going to build him.

When he went to Park Day after the last day of preschool, he got to meet Bonnie the Snake from our local library:

We spent a day at Camp Prime Time...and Eli got to go up into a wheelchair accessible Tree House!

And, Eli had his 6th Respiratory Distress Event.  He hadn't had one in almost three years, so we thought they were behind us!  Makes me sad to think they can still strike at any moment....and we get no warning!  Eli was a trooper as always...and the next day he's fine and you'd never know anything ever happened!

Eli also went to a rollerskating birthday party...

we spent a weekend at my Aunt's house in Auburn to celebrate my cousin's son graduating from high school.....

and Eli got his very own library card:

We also went to Seattle and he got his GJ tube switched out.  I was able to take pictures during the procedure.  I'll save those for a post of their own!

That's June in a nutshell!

Beyond Blessed

Tonight I am feeling so blessed.  Great things have been happening for me and Eli, and I don't want it to go by without thanking God for His amazing gifts.

Because of the book Wendy on Wheels Saves the Day....and the fact that we are cartoon characters in it....we have been blessed with a little local publicity.   Our newspaper did a phone interview and printed an article about it.  A local TV station came to our house and did a feature piece on us. It was so cool!  (You can watch the video here)

My heart's desire has always been to have Eli known by others.  And it's happening for us and I couldn't be more excited!  He's been the cover boy for our local Playdate magazine.  I wrote an article for Playdate, also, telling Eli's story.  In two weeks, I'll be the guest speaker at a MOPS meeting, sharing our story with others and trying to give hope to moms who may feel overwhelmed, isolated, or exhausted.

Raising Eli has had it's fair share of challenges, that's for sure.  But, being his mom and seeing what a happy child he is, even though he has so many challenges, has been the most amazing thing I've ever experienced.  I can't believe some of the amazing moms of special needs kids I've met along the way.  Moms who inspire me, educate me, listen to me, and simply "get" me!

The last two years with Eli have been the best so far.  We've finally figured his feedings out....and he's actually weighing in at 25 lbs!  There was a time I thought he was withering away before our eyes!  He is so easy to take places.  He's tolerant and content.  He loves looking around and absorbing the world, all the while cracking up as Elmo plays on his iPod.

I can't imagine life without Eli's laugh in it!  Here's a little glimpse into my world....my favorite sounds: 

Eli's chatter and his laughter.

(He's learned to squeal like a little pig!  It's adorable to us.)

This is Eli having a very good time:

To all my new readers....WELCOME!  

To all the rest of you....Thank You for continuing to come back!

I have big plans for my blog....so stay tuned...  :)

Wendy on Wheels Saves the Day!

My six month hiatus is over!  I'm back and I'm excited to share the following with you.

Last year, a new book came out called Wendy on Wheels Goes to the Beach.  I bought two copies.  One for Eli and one to donate to our Children's Therapy Center.

I started following Wendy on Wheels on Facebook....and she asked people to comment on her blog.

So I did.

Then, a second book came out called
Wendy on Wheels Goes to the Zoo. 

Of course I bought it!  I love having anything to do with kids and wheelchairs!!  :)

In January 2011, the author Angela Ruzicka announced she was working on a third book.  She sent me a message saying that there would be a character named Eli in the book.  She remembered my comment on her blog last year, and wanted to include him!  I felt blessed and thrilled and totally excited!

Wendy on Wheels Saves the Day came out last week.  I ordered our copies immediately, directly from the author so she could autograph them for us.  I couldn't wait to see Eli's name in a book!

We got the books on Saturday, and that night Eli went to sleep hearing the wonderful story of Wendy taking "wonder packs" to the kids in a children's hospital and spending a fun day with them! 

I highly recommend this book!

I took the book to work on Monday and was showing it to all my friends.  The first thing they said was, "the mom looks just like you!"  I hadn't even noticed.  All the sudden, I said, "Omigosh, she does!  How funny."

Can you see the resemblance?

(Wendy on Wheels is illustrated by Elizabeth Gearhart)

So, I sent Angela Ruzicka (the author) a message on facebook...
...and she said... it IS me!!

She was inspired by my comment I left her and she started reading my blog.  She found pictures of me with Eli during one of his hospital stays and this is what I looked like.  She decided to add us to the book! 

(If you know me in real life....you know my hair is in a ponytail.....ALOT!)

You don't even know how excited this makes me!  One of my life's dreams was to be the voice of a cartoon character.  I doubt that will ever happen....but now I CAN say I am a cartoon!  :)

So, THANK YOU ANGELA RUZICKA and Wendy on Wheels!

You have made this Momma giddy with happiness!

Yabba Dabba Doo!

We had a fantastic Halloween this year!

Eli was invited to a rollerskating party the Friday of Halloween weekend.  It was a private party for a brother and sister.  The brother, Wyatt, has CP and is in a wheelchair.  It was a costume party...so it gave Eli a chance to wear his costume twice!

They allowed special accomodations for the boys to go out onto the floor! :)

I had so much fun skating with my boy!!!

I googled "costumes for wheelchairs" a few weeks before Halloween...and there really aren't a whole lot of options!  But, the Fred Flintstone (and his car!) caught my eye.  I think I spent about $5 to make his costume!

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Saturday night it was pumpkin carving time:

Yes, we watched It's the Great Pumpkin, Charlie Brown!  It's tradition!

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Sunday was Halloween.  My husband was disappointed that I didn't get Eli's stroller decorated as Fred's car  I bought the white material, and had the idea in my head, bu just didn't quite know how to make it all happen.  So, he went to work out in the driveway....and came up with the most fabulous Flintstone Car ever!!!

Our community has a big Halloween party at our Civic Center.  Eli's costume was a big hit!

I was so happy that we finally got to go out on Halloween!

(The last time we tried, Eli was 2, and he threw a fit for 1/2 an hour and we went home.  He goes to sleep so early, that I hadn't tried it since.)

(Professional photographers were there taking pictures!  Click the picture to go to their website)

Now, I'm trying to think what to do for Halloween next year!  How do you top a Flintstone mobile?

An Alien and a Robot take a Rocket to a 5th Birthday Party!

We had another wonderful party to celebrate Eli's birthday.

I can't believe my boy is 5 !!!!

The party kids loved the spaceship cupcakes.

We had 71 people at his party.  About 24 kids, not all are shown, and the rest were adults.

We call it the "End of Summer Berkheimer Bash" and have a Potluck feast with all of our friends and family.

Eli sure has a LOT of people that love him!

First we played "Stick the Alien in the Spaceship"

Then we had two teams build robots out of cardboard boxes, duct tape, egg cartons, pipe cleaners, washers, nuts and bolts.

THIS WAS THE BIGGEST HIT OF THE PARTY!

I was so glad to see all the kids having fun....and then I heard about several who went home asking for stuff to make robots, dollhouses, and horse stables out of boxes! 

Then it was present time:

Eli only took a 30 minute nap that day....so by this time he was getting tired...and a wee bit cranky. 

But he was still cute making some funny faces :)

 Attempt at a family picture...

Yikes!  What is this:

"a carload of aliens pulls up to a bar....."

LOL!

We decorated with Aliens, Rockets, and Robots.

 And Lou Lou was in heaven, again, all day!

I found these awesome alien pajamas at Carters!

It was a good day!

Super Star!

It was quite an honor to have Eli chosen to be the cover boy for the current issue of Playdate Magazine, a bi-monthly publication put out by our local newspaper!!  Their website describes the magazine this way:

     "PlaydateYakima.com and PLAYDATE Magazine are a gathering spot for Yakima Valley parents and caregivers of infants through teens. We’re all about community events and happenings, activities and recreation; about where to locate educational opportunities and fun; and about how to find useful products and services specific to the needs of busy young families."

It's currently the profile picture on their facebook page, too!

http://www.facebook.com/playdateyakima

And if you'd like an autographed copy.....just let me know....we just might have a copy, or three or ten, lying around, and I'd be happy to send one to you!

It's pretty awesome to walk into the grocery store, your doctor's office, and even your favorite restaurant...and there is your son's face on the cover of a magazine in a rack!   I'm beside myself with joy!

Special thanks to Scott Klepach, and other staff members, for choosing Eli, and for being so accomodating during Eli's photoshoot.  Eli wasn't feeling well that week, and it was tough to get a good shot.  They were so patient and kind, and it was great to work with them.

I might even get to contribute a little story once in a while about raising a special needs child, and ways for local events to be more inclusive and accessible for the physically disabled. 

Very cool!

(FYI for family:  My computer died and is in the shop...I should have it back on Sunday or Monday.

Sorry if you've emailed me this week and I haven't answered.)

He did it again!

After failing an OAE hearing evaluation in his right ear in June at Children's Hospital, they recommended we see our local pediatrician to get the wax out of his ear and have him re-evaluated at Hearing and Speech Center here in Yakima.

Today was the test....but he failed the tampanagram in BOTH ears......because of fluid, so they recommended we go see the Pediatrician...again...and we got in this afternoon!

His left ear looks good...but his right ear definitely shows fluid.....
so he got a referral to a local ENT;

a prescription for Nasonex (to see if allergies are causing congestion, that is causing fluid build up),
and a prescription for a new ointment to put on his stoma.  I sure hope it works!  His bile reflux is really causing issues!!  We go to Seattle on Wednesday to see the GI....and hopefully we can pursue some answers to the bile issues he's having!!!

The best news of all is:   ELI GAINED WEIGHT AGAIN!!!

23.4 lbs as of today

YEEHAW!  Good news to share with the Doc on Wednesday.

(Summer finally made it to Yakima - it's been 100 degrees for 3 days in a row. 

Pictures are from our little swim party we had this weekend.)

Eli gained weight!

H O O R A Y !!!

Eli is back to where he was last summer....22 1/2 lbs!

I sure hope we can keep this up! 

He seems a bit uncomfortable lately, and we aren't sure what it is yet.  No granulation tissue has cropped up, so it must be the increased feeds.  I'm increasing the volume very slowly, in hopes his poops can keep up!  We sure miss our happy, laughing guy when he's gone....he laughs a little, but not like what we're used to.

(I sure wish he'd learn to like some new music!  I think that would make us all happier!  Elmo must go!)

He is doing so awesome in his Bronco!  I think he'd stay out there for an hour if we'd let him!! 

(But we usually just do 30-40 minutes because he needs to get back in the house and

plugged back into his continuous feeds)

We think he's ready for the next size Bronco!  We have an appt later this month to try one out and see.

Our boy is finally growing!

H O O R A Y !!!

Rocket Man

Eli's been a little off lately.  He's not loving much of his music....and not laughing much.  This makes us sad.  We feel his laughter lets us know all is right in his world.

He seems a little less excited about his Bronco riding this summer.......until yesterday!

He had a blast!  Check out our little Rocket Man:

It's a short video because I had to go stop him from running into the fence.  :)

(Disclaimer:  video is best viewed with your sound OFF!)

The Money's In The Poops

Our son is almost 5 years old and weighs 20 lbs. We have spent almost two years desperately trying to get him to gain weight. Nothing seems to be working for him. For us it's a constant stress in our lives, and alarms us very much. I know CP kids are small, but Eli really needs a few pounds on him for a healthier life!

On Monday, we saw Dr. Wahbeh, the GI doc. He believes that instead of Delayed Gastric Emptying (in the stomach)....Eli most likely has Delayed Bowels. Add that to the constant muscle contractions his body does....it makes for interesting digestion in the bowel regions.

The doctors recommendations were:

1. Continuous Drip Feeds over 20+ hours (I've been dreading this because Eli is now tethered to a backpack)


2. Giving him his fiber in "doses" instead of putting it in his daily formula.


3. Giving a suppository every day for a few days, and then giving one if he hasn't had a BM in 36 hrs. Dr. Wahbeh specifically said, "The money's in the poops!" :)

He didn't really want to discuss anything else (like changing formula, finding out what his body digests best, or the Nissen Fundo), until we give Eli a chance to succeed on this new regimen.

We go back the end of July to follow-up. Let's hope he gains weight! And that we can keep his poops a movin'!

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Tuesday was the BUSY day!

First we saw a Metabolics/Genetics doctor. Upon physical examination my beautiful son has no visible signs of a genetic disorder. He ordered bloodwork and a urine sample....and he'll need a couple weeks to put together his report.

Next, we saw an Audiologist. She did an AOE test....and discovered that Eli has a large mass of wax in his right ear and couldn't get a response from that eardrum. His left ear was fine. He hears. Imagine that!? Of course he can hear...music is his life!

At the end of this appt...it was time for a nap....

We went and found a quiet place by the gift shop and my cousin Love'e sat with him while I went and got trained on the new feeding pump we are using for his continuous feeds. (I'll post more about all that later)

Eli slept for 45 minutes :) When he woke, we went and grabbed a quick lunch, and headed to his next appt - with the Opthamologist - we'll just call him Dr. W, OK?

Oh, my! I had forgotten how different this guy is! He's one of those people who I believe is absolutely brilliant, but totally missed out on getting any people skills!

He said to me, "I don't see that the MRI (done when Eli was about 3 weeks old) shows much"

I said, "All I remember is that is showed his brain damage was deep in his Basal Ganglia."

AND THEN HE ACTUALLY SAID, "Well, there must be more damage than that, I mean..." as his eyes enlarged and he tilted his head, sideways, towards Eli.

Seriously. I couldn't make this up! But, I forgave him because he is very interested in kids like Eli, and is actually writing a paper about them. Unfortunately, he's not really interested in getting the information OUT of them....he's a scientist type who wants to understand the anatomy and inner workings of it all....

...He's calling it SENSORY-MOTOR DISCONNECT. Yay. Another label for my boy.

His professional opinion of Eli is that he is "Locked In" his body. "He receives visual input, but just can't generate motor responses consistantly to give a physical response." "He can't use eye movement for visual accuity". "His brain activity down to his Thalamus may be impaired because his BG is impaired."

Eli doesn't track well. He has a huge delay in responding to requests. It took him 8-10 seconds to make eye contact with the little panda bear on a pencil he was using for tracking purposes.

He doesn't turn his head when you say his name. He doesn't flinch when there is a loud noise. He loves to watch his movies. We have a DVD player on the floor next to him, and a big TV up in an entertainment center. Both have his shows playing on them when he is awake. This is the ONE choice in the world he consistantly gets to make. Which show does he want to watch.

We know he likes a show when he rolls on his side, and hardly moves, so he can watch it. His newest favorite is Curious George on PBS. :)

WE KNOW ELI IS IN THERE. We just need to keep him healthy, and continue working on how to get him out of there!