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I've shared with you before about my favorite blog to read: My Charming Kids by MckMama
http://www.mycharmingkids.net/
Her 4 month old baby, Stellan, is in the hospital having heart problems that they can't get under control. I just want to share their story, and ask my readers to pray for them. It's a scary situation.
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/
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 :)
Please ask me about my child,
the one that has been through so much.
He has special needs, and life right now is rough.
I won't be offended with the questions that you have,
it hurts more when you keep silent,
and pretend he doesn't exist.
I need to talk about him,
and know that we have been missed.
-Jessica Pruitt (Inspired from the writings of Emily Dent)
Wow! Is life full of ups and downs for us lately. Mostly downs....I used to love roller coasters...but when I hit 30 they started making me sick. But, honestly, nothing is worse than the feeling I have lately dealing with my poor son feeling so miserable!
Wednesday, Eli started having issues again. Wednesday night he hardly slept...then he woke up at 2:35 am....and stayed up! It only got worse from there.
Thursday sucked! (Sorry, just keepin' it real, folks.) I had to start giving him Ativan again, to calm his body down as it was just crazy. We took him to his developmental pediatrician, Dr. Walker, on Thursday afternoon. We came up with a new plan for feeding and medicating him. We are now on a slow drip feed for 20 hours a day. Since it would be almost impossible for Eli to be hooked to a line while awake....we are using a syringe and a kitchen timer to put 10 ml of food in him every 20 minutes!
During nap times, and at night, I will use the pump. We are also keeping him on a low dose of Ativan round the clock, so he can stay calm enough to eat, digest, and sleep....which will allow for more food.
He is eating about half the amount of food he was eating 5 months ago! We are going to work very slowly at builiding up the volume, as he can tolerate it.
Dr. Walker is consulting with other doctors who have seen Eli to see what the plan will be for a more permanent solution. Maybe a GJ feeding tube? (Inconvenient, because only Seattle can place and maintain it!) Possible Nissen surgery? (YUCK - surgery scares us!) We just aren't sure!
I've been holding him for 1 hour and 35 minutes this morning...and he will not go to sleep! He is relaxed, because he is drugged, but he's still moving and jerking just enough....that he won't/can't take a nap. I hope he can soon....his body needs a rest!
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ON A MORE POSITIVE NOTE:
When Eli was in the hospital, I left a comment on my favorite blog My Charming Kids. Well, one of her kind readers saw my comment and read my blog and starting leaving "we're praying for you, get well" messages for us. How touching!
Unfortunately, the internet connection in our room died Friday...and I wasn't able to check my blog comments or leave any updates before we left the hospital.
On Saturday, when we got home, and I was finally able to post...I found that this very nice lady had left a gift for Eli at the hospital. I had to leave her a message that we weren't able to get it. And guess what she did?
She said, "My son Riley really wants Eli to have this gift. Can I mail it to you?"
And so, on Wednesday, Eli received his package from our new {generous} bloggy friends in the Seattle area.....Riley and Catherine!
We've had four wonderful days since coming home from the hospital! Eli is in a great mood, sleeping well, and so much fun to hang out with. :)
We are trying to keep Eli's head higher than his tummy when he's lying down. We've always had his crib and bed lifted....but never his mat during the day. So, Lon had the creative idea to put his old mat under the top half of his new one. It's working great...except he moves so much we have to reposition him more often to keep his head up on the high part! :)
So Eli now had a big blue wall in front of him for tummy time....and I quickly took the opportunity to do a little crafting!! LOL! This morning was his first time seeing the cute little Giraffe, Elephant, & Octopus I made for him. He hung out on his tummy for a long time. I think he likes them!
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