Sunday, February 28, 2010

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! :)

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!

Monday, February 22, 2010

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....


  • 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!?????

  • 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!


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

Saturday, February 20, 2010

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 it takes lots of coughing and sneezing....and tons of 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 if they can't come early this a.m. .... we'll just go without seeing them.

We want outta here!

Tuesday, February 9, 2010

Just Chillin' at the Motel

On January 3rd our power went out at 5:10 pm. It was off until 3:55 am. 11 hours! Luckily, Eli goes to sleep early, so it wasn't a big deal. Once he was asleep, we put 7 layers of blankets on him. We also went down to the neighbors (as they had power) and heated some corn bags in their microwave, and we put those under the covers to keep him warm. He stayed nice and toasty - even as the house cooled down to about 50 degrees!

This was the culprit - it took them hours as they had to dig three holes....until they finally found it. Like a needle in a haystack!

Pacific Power came back on February 3rd and dug up our driveway, again, and laid all new lines.

Today they came and installed the new junction box (or whatever it's called) and connected the wires. So, Eli and I checked in our local motel and hung out for the day. Being without power, water, etc, for about 6 hours, with him awake, didn't sound like fun.
We've had a great day..."just chillin' at the Motel"....

...AND THEN....
Lon came down to visit us, so I ran to get some lunch. Pizza Hut has the greatest vending machines in the I spent the best 50 cents ever....for THIS:

Seriously. This was the hardest I've laughed in a long time. He kept doing really funny things trying to get it off his lip! I think I just found his new "therapy". I've never seen his mouth and tongue get such a workout! :)
Time to pack up and get outta here.
But, I just might come back tonight after Eli goes to sleep......and swim, or go tanning, or play in the arcade, or watch cable TV.....or sleep!

Thursday, February 4, 2010

Osteopathic Manipulation

Last week, we started a new therapy for Eli.
Osteopathic manipulation.
Yesterday was his second he is waiting to see the Doctor.
This new therapy is a gift from God.
I met a gal named Heather, in my bible study, that is going to the new medical school in our town, that trains Osteopath Doctors.  I've been having my group pray for Eli, of course, and one night after class she asked me about him.  She told me how their therapy can help with pain and digestion....which seem to be Eli's two biggest issues.  She offered to talk to her favorite professor, Dr. Woods, and ask if he'd see Eli - for free.

Well, last Wednesday, they came to our house and did their first therapy on him.
They came to our house!!
Yesterday, we went to the college and he did the therapy in front of her entire class of about 80 students.
It was awesome.  At one point Dr. Woods asked me if I had anything to say.   I told the students,
"If meeting Eli makes any of you want to help kids like him, that would be awesome."

We've now been referred to a local Osteopath to continue his manipulations.  We'll see how it goes :)

 Eli hasn't been in the greatest moods lately, so I haven't been taking many pictures. But, the other night he and his Daddy were hanging out together, and he was laughing - so I grabbed my camera and got these gems:



Eli has been spending a lot of time on his tummy lately.  We're not sure why.  He drools alot so we keep dry burp cloths under his face.  Unfortunately, when he's ready to roll over onto his back....we end up with this: 
"Hello!  Somebody help me out here!"

I get a giggle out of about you?

Yesterday, his Tigger toy was in his face - and he grabbed it and pushed it away from him!  His caregiver and I were sitting there talking, and we watched it happen!  We were both SO EXCITED!
Maybe someday he'll learn to get his burp cloths off his face!

Oh, and while we're talking about rolling over.  Eli has always been good at rolling from his back onto his tummy by rolling to the left.  This last week, however, he has mastered rolling to his RIGHT!
Sweet!  He can pop his arms out from underneath him like nothing now!  I'm so proud of him!

Monday, February 1, 2010

Cute Bibs!!

We are always on the lookout for cute bibs....big bibs....not baby bibs.....
so if you are in our boat.....check these out!