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'!

_______________________

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!

Inclusive Playground

Have I ever mentioned the absolutely, positively,

FABULOUS,

INCLUSIVE PLAYGROUND

at Seattle Children's Hospital?

wheelchairs can roll right up to the panels...

....and kids like Eli can play...

...it melts my heart...

....and this piece of art is my favorite...

This is what is inside at the top:

What a fun thing for kids to experience!

Then, there's a boat that's wheelchair accessible....

...and these fun "tunnels"...

...and finally a castle!

Wish we had a place like this in Yakima!

:)

Another Year of Preschool Under His Belt

Here is Eli on his way to his last day, of his second year, of preschool:

Do you know what his attendance was for the year?

17 days!

They served Ice Cream/Orange Sherbet cups during snack time to honor the summer birthdays. Eli's is August 23rd, so I decided to give him a few tastes of orange sherbet....

with a wooden spoon, no less! :)

Then, he slept in class!

That's my boy!

When we got home, he gave his Daddy the fabulous kite he made him for Father's Day!

__________________________________

Today was Preschool Park Day...and Eli got to meet Smokey Bear.

It's interesting because:

A) I always loved Smokey Bear when I was young. (Hoots the Owl, too!)

B) I just found this hilarious saying on a T-shirt the other night:

"Only YOU can prevent forest fires.

Which is good because I've got 'stuff' to do!"

(I have a twisted sense of humor....I just thought it was quite clever...and funny!)

Anyway....we had fun visiting with Teachers and other parents....Eli took a little nap in my lap...and then we went home.

SCHOOL'S OUT FOR SUMMER!

Yahoo!!!!

Blogging vs. Facebook

I'm torn.

As of today I have 226 friends on Facebook. I love the instant gratification of updating my status or posting pictures and immediately having a response to it! Whether people just click the "like" button (letting me know they were there) or comment (which makes me feel so connected to the outside world) - it makes me feel happy. My special world feels not so lonely. I have family and friends encouraging me daily....it's quick, easy, and just plain fun!

Blogging takes time. Time to pull all my thoughts together so I don't sound like a moron. Time to load the pictures into Blogger. Time to edit it all so it sounds coherent and the pictures go where they are supposed to. Time to wait for feedback. Then time to wonder why I put so much effort into my blog when the payoff is so small. I've always viewed my blog as a journal, so I rememeber dates and times of special events.....but Facebook is able to do that also, with much less effort.

Don't get me wrong! I'M SO THANKFUL FOR THE HANDFUL OF YOU WHO FOLLOW ME AND COMMENT REGULARLY! I've built some great blogland friendships because of your faithfulness!

But, I'm trying to figure out how much time on the computer is TOO much time. Lonnie and I have talked about implementing one day a week where we spend it "Unplugged". I've given up reading several of my favorite blogs because it just all takes too much time!

I could be using my time to read my bible. More books. Learn about how to better care for Eli. We could go more places and meet more people and do more things.

Spring is here. Life is shifting for me. I'm not sure where I will end up, but I'm taking some time to figure it all out.....so thank you for understanding my long absences on my blog.

We did go do something fun yesterday! We have a local magazine our newspaper puts out bi-monthly called Playdate. It's full of info for entertaining your kids in our valley. Well, yesterday they had and Expo downtown at our convention center. It was full of booths of local vendors and home sales party companies....but it was also full of wonderful kids activities. There were two big jumpers. Play areas. Game areas. Arts and Crafts areas. A stage with fun shows to watch. A food court. Face painting. And the best part of all: Characters roaming around for you to get your picture taken with!

Eli finally got to meet Ronald McDonald:

I worked there in high school, so it was a big deal for me. I really wanted this for my scrapbooks!

It totally cracks me up that he's making a funny face like "Get this weirdo away from me!"

Eli was having a bad day. Turns out his stoma is infected....again!

So, we didn't last very long at the Expo. It was crowded and noisy and he couldn't hear his music.

His tummy hurt and his body was wild. Being in his stroller wasn't his idea of a good afternoon so we came home after about 45 minutes.

There's always next year, right?

Mission Accomplished

I promised to post some pictures yesterday.  Looks like that didn't happen.  But, better late than never......eh?

Our weather has been interesting to say the least.  It's been a super mild winter, and the last couple weeks we've had days where it was 50 degrees.  Our plants think it's time to start budding and growing....poor things were shocked to wake up to 20 degree weather yesterday morning!

Whenever the sun is shining, and there is no wind - we take Eli outside for his Bronco ride.  Even through his healing after his cold, he was still a trouper and was able to do a lap or two.

My old point and shoot camera is starting to have a malfunction with the shutter opening.  Every once in a while, I don't notice it right away - and end up with a picture that looks framed.  I kinda like it on the picture above.  Almost looks edited and on purpose.  Almost.

Some days we bundle up more than others.

His bib says, "I'd rather be eating cookies, cake, and candy"

It's one of my favorites.

Only the parent of a tube fed kid wishes their kid ate junk food, eh?

_________________________________

Eli was in a really good mood on Monday....so I decided to get some pictures of him in our big chair to compare them to when we first moved in our house.

August 2008           -           March 2010

Don't let these pictures deceive you.  He hasn't grown that tall!  The chair was brand new in 2008 and the back was tall and stiff!  Now it's breaking down and it looks like he's taller because his head is above the cushion.  I wish he had grown that much!  He's maybe grown an inch....but still weighs only 22 lbs.

___________________________________________

GREAT NEWS!

Eli has learned a new life skill.

How to put himself to sleep!

Lonnie and I have argued about this one for a while...because I love helping put him to sleep.  I held him for his first 3 years.  Then for the last year we've laid down on the floor by him and held his hand to help him fall asleep.  But, now he has decided he doesn't need us.  When he's tired he rolls over and gets into a very weird position...and falls asleep!

 His left arm is tucked underneath him!

That afternoon he became a man on a mission.

To where?...we don't know!...but look how he ended up:

I guess it's better to see the TV this way!
Let's call this TWO missions accomplished!

:)

Finally

It's been a loooooong month.  Too much sickness in our house!  But, I am completely well.  Eli is finally back to himself.  And my hubby is slowly finding relief from his ailments....now he just has to deal with the cough for a while longer.  It seems to be the last thing to go.

It's been pretty quiet around here as we've been a bit housebound.  But, Spring is coming early....or at least teasing us right now.  We've had sunshine, 55 degree days, and it's just been gorgeous!  My flowers are shooting up through the ground!  My Hydrangea made it!  Hooray!!!  4 of my 7 Bleeding Hearts are sprouting up.  3 of my 4 Peonies.  And the buds on my Lilacs are HUGE already!

And the Box Elders came back in droves a week ago.  I could totally do without those little creeps!

Eli's had a couple Bronco rides outside.  He will need a little Spring Training to get back up to the speed and distance he ended with last Fall.  But, for just getting over being sick - he's done great!

I'm involved in two bible study's through church...and I cannot say enough good about the study called "Downpour" by Paul McDonald!  Awesome!  Life Changing!  Heart Changing.  Phenominal.

I have some pics in the camera, but haven't loaded them on my computer yet.....so that promises you another post tomorrow! :)

Morgan's Wonderland

I found out about something VERY COOL this week. A theme park for special needs children!

It's called Morgan's Wonderland and it's in Texas. It's Grand Opening is in April. You've GOT to go check it out! :) http://www.morganswonderland.com/

Lots of wheelchair accessible activities. Sensory play areas. It really looks fabulous!

Katy, over at Bird on the Street, calls her girlfriends who have special needs children the "Holland Mafia" (which I love and I think we should have T-shirts made!) and I was thinking it would be so great if we could get a big group of us to meet up there one day!

So, go check it out....and tell me what you think!

A Never-Ending Journey

     Today, Melanie over at Better Than Normal posted "Everything Out On The Table".  She's overwhelmed, depressed, and coming to the realization that she's "not the super mom she wanted to be."

     Last week Katy over at Bird On The Street posted "Jealousy Jane".  Sharing the difficulties of seeing other families with multiple children, all healthy, and we don't even have one healthy kid.  She quickly followed up the next day with "Counting My Blessings" because she is not about being negative.  Just real.  Admitting the struggles we all face as the moms of special children.

     It made me realize I need to start pouring my heart out more - because that's kinda what a blog is for (and my big sister always wants to know 'what I'm really feeling') - and being more transparent in my writing.  Which is gonna be hard for me to do!  We are very private people.  We don't like to let everyone in on our problems.  We'll figure them out ourselves thankyouverymuch.  It's easier to pretend everything is fine, than to tell someone you feel so overwhelmed with life that you want to just run off and join the circus.

     But, Eli is going to be 5 in August.  Five!!!  Seriously.  Lonnie and I are amazed at how fast the time has gone by, and we know it's not going to slow down any time soon.  So, here is my attempt and putting it all out on the table and telling you how I really feel....

WE ARE:

• On a Never-Ending Journey.  Most parents have a destination with their kids.  The kid graduates from High School, goes to college/gets married/has kids/buys a house/visits occasionally.  You get your house and life back.  You get added family members.  New experiences, etc..    We don't have a destination.  We just have a journey.  Living day by day just keeping him alive via tube feeds.  We worry who will care for Eli when we are too old and/or gone from this earth.  And that's assuming he'll outlive us.
• Disappointed that he's had such health struggles that we weren't able to do all the amazing therapies we wanted to take him to. 
• Sick to our stomachs that he has NOT gained weight in THREE YEARS!!! 
• Overwhelmed at the thought of how school is going to work for him.  A simple cold just put him in the hospital for two nights.  How will he ever handle all the germs at school?  We've quarantined him every winter.  He stays healthier that way.  But he needs to be around his peers.
• Feeling like the world is very small because we only leave our town to go to Children's Hospital in Seattle.  We haven't had a vacation in 5 years.  Eli and I have gone to my Aunt's house to visit for long weekends....and for those I am incredibly thankful!!!  But other than that, we have done nothing fun as a family.  That sucks.  A lot.
• At our wit's end because no one can figure out what is wrong with Eli.  Did I mention he hasn't gained weight in 3 YEARS!?????

HOWEVER, WE ARE ALSO:

• So madly in love with Eli that we can't imagine life without him.
• Thankful for every day God blesses us with his care.
• Enjoy his laugh more than anything else in the world.
• Positive that he is THE BEST kid in the whole wide world.  Just try taking his blood while he's sleeping....he'll let you!  Because he's awesome like that!
• Thankful to have a house with a huge paved driveway where he can run in his Bronco.....his biggest accomplishment in life!

"I LOVE YOU MORE TODAY THAN YESTERDAY. 

BUT NOT AS MUCH AS TOMORROW."

So, how'd I do?  Did I get real enough for you Sis?  :)

Eli's In the Hospital

I've been sick about 10 days. I could tell Eli was getting it...but seemed to be doing ok.

All that changed Thursday!

He went quickly downhill that afternoon, and we ended up in the ER by 6 pm. They admitted him and we've been here 2 nights. They ran all the required tests, bloodwork, x-rays, etc....and everything came back fine.

VERDICT: a simple cold kicks Eli's butt!

(First hospital stay in a big bed! No crib! Yahoo!)

The congestion gets really bad because he has such a floppy airway, and doesn't swallow well. He can't manage his secretions and gets congested. Then he has a weak cough...so it takes lots of coughing and sneezing....and tons of suctioning...to help him get better.

(he slept great both nights)

They've had him on blow-by oxygen (see the cup above his head) while we're here...his sats were hanging out around 94-96, but this morning he's mainting 97-98. I think we'll need to turn the O2 off soon and see how he does on his own.

He was Mr. Mellow most of Friday...making this face alot:

(this is the "why does it hurt every time I swallow" face)

Then, Friday afternoon, he started to 'wake up'...and get his personality and energy back.

And his laugh:

To top it all off, though, his stoma is still bothering him. I can see granulation tissue....we're hoping that someone from the Wound Care dept. can see him before we get released...but we are quite eager to go home...so if they can't come early this a.m. .... we'll just go without seeing them.

We want outta here!

:)