Blog List: Families with CP Kids

As promised, here is my list of blogs for you to browse. These families have CP kids, or kids with feeding tubes and adaptive equipment. I love to see what kinds of equipment other people are using. Standers, wheelchairs, beds, how they adapt their home environments, etc.

Feel free to leave me a comment before you go. I'd love to hear from my readers!

Brooke's mommy loves to share how they've adapted their world to meet the needs of their precious little girl. This mom is very clever!
http://adaptedworld.wordpress.com/

Michael is a 9 year old boy with CP. His mom and I have become "web friends". I'm not sure how she found my blog...but we communicate here and on Facebook. I just love how the web offers so much support for families! http://candirfamily.blogspot.com/

Hannah's is a little girl with CP....she has a big sister...and a baby brother on the way. How do you families do it with more than one child? I'm in awe!

http://theyounesfamily.blogspot.com/

Samuel was a typically developing toddler....but a tragic accident after his 2nd birthday caused brain damage and a diagnosis of CP:

http://samuelsmiracle.com/about/

Alex doesn't have CP, but he has a feeding tube and his needs require special equipment. His mom shares his story, and her thoughts about a "new kind of normal" here:

http://newkindofnormal.blogspot.com/

If you are a prayer warrior, and would like to meet some special kids to add to your list, please visit:

http://prayersforlittleangels.blogspot.com/

Have a wonderful day everyone! It's beautiful and sunny here today...and Eli has been sleeping great at night...AND sleeping in...until 5:45 today! So I feel like a million bucks! :)

Online Resources for Cerebral Palsy

It turns out I have a few new readers of my blog!  I'm so excited to be hearing from new people in my comments!  To think that I started this blog to keep my family and friends informed ...and now I'm offering support to people I've never met.  I feel incredibly blessed.  Thanks for stopping by everyone!

As we all know....having Eli changed my life.  And Lonnie's.  And I think some of our family member's, too.
In so many ways, in fact, I could probably write a book.  But today, I want to share how God has put a desire in my heart to reach out to other families and help them on their journey.  Especially the first few years, when you're trying to wrap your head around it all.

After we brought Eli home from the hospital we had a million questions.  Of course, we were hoping that all the people saying "everything will be just fine" were right...but we knew differently.  We just wanted to hear other people's stories, and know that we weren't alone.  And, as weird as this sounds, once in a while we run across a story of a child that has so many critical issues, and we realize that.....maybe our situation isn't so bad afterall!  It could be so much worse.  In those times we are grateful.  We thank God for the opportunity to take care of his beautiful child.  And we beg him to not let the journey end too soon.

We knew we had a tough road ahead....and we let ourselves get overwhelmed at times thinking about the "what ifs".  That's a sad and lonely road.  I don't recommend it!  My best advice is to stay in the moment, and enjoy what's in front of you.  When the time comes, you'll have the strength to deal with the bigger problems that may (or may not) come.

My prayer for all you parents taking care of disabled children, and to the teachers and therapists who love our kids, is this:  May God bless you abundantly and give you an inner peace knowing you are doing His work.

Today, I would like to share some links with you to websites offering support groups, information and resources for families in the "cerebral palsy world".

United Cerebral Palsy is a national organization with local chapters in many states:
http://www.ucp.org/

My favorite resource on the web!  If you have a Tube Fed child - you MUST go here!!
http://www.parent-2-parent.com/forum/

This is an organization that helps families with tube feeding supplies, through an exchange program.
http://www.feedingfoundation.org/index.html

Ginny Paleg is a wonderful therapist on the East Coast with an insight to our children that is rare to find!
http://www.ginnypaleg.com/

A wonderful online magazine with tons of info about medically fragile children, tube feeding issues, and more!
http://www.complexchild.com/

I hope you find this information helpful.  My next post will be a list of links to blogs...of other families with kids with CP.  It's a BIG BOAT  we are in....and I'm happy to try to bring some of us together!

And of course, what is a blog post without pictures? 
So, I end today with these pictures of Eli...being read to by his wonderful caregiver Tina.
The book was:  "God Thinks You're Wonderful" by Max Lucado.  (Click this link to buy it inexpensively online)  It's great for adults and children!!!  A very simple read, with cute little pictures.  It's a must have for your collection :)

A Colon Cleanse for Eli

I try to get Eli a Giraffe everytime we go to Seattle Childrens Hospital.  Here is today's new friend:

Well....Eli's so full of poop his eyes are brown.  Sorry - just a silly thing my Momma used to say.....and I couldn't resist :)

Today, after a visit with Dr. Wahbeh, the GI Doctor at Seattle Children's Hospital....it was decided that Eli needs a colon cleanse.  Nice.

Cerebral Palsy wreaks havoc on your muscles and their movement.  We knew that.  Turns out one of the muscles it can affect is the ol' Sphincter muscle!  Plus, he's just not fully getting rid of his "junk" and he needs a little help.

So, we begin a regimen of Milk of Magnesia, Miralax, and Suppositories.  I'll be sure to keep ya'll posted about that!  I'm sure you can't wait to know more about Eli's bowel movements!  Let's just hope it solves the problems we are wanting it to solve:  to calm him down, take away his discomfort during feeds, help him be in a better mood during the day, and to sleep through the night so he can get his whole night feed.

Let's hope we are finally on the path to wellness for Eli!

________________________
After a beautiful sunny day in Seattle, with the temp at the top of Snoqualmie Pass being 51 degrees....we come home to a socked-in valley....frozen fog....30 degrees...and this...

God's beauty is so amazing!

God just thinks of everything, doesn't He?

Everybody Dance Now! - Eli in a KidWalk Gait Trainer

"You Do the Hokey Pokey and You Turn Yourself Around...That's What It's All About!"

"I Want To Rock & Roll All Night and Party Every Day"

"Shake Your Groove Thang, It's a Funky Thang"

"Bust A Move"

"Jump Around, Jump Up, Jump Up and Get Down"

"Everybody Dance Now"

"I Want To See You Belly Dance"

"The Rhythym Is Gonna Get You"

Help me out everybody - what are some other great songs and lyrics I could use for this awesome photo of my boy walking in a KidWalk Gait Trainer? LEAVE A COMMENT WITH YOUR IDEAS! I'd love to hear them.....

We were so proud of him...he did AWESOME in this...even better than in his Bronco! We are looking at getting one, but want to try him in it a few more times before we spend the money.