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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!
_____________________________
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!
Over-react? Who me? Thanks to my Momma I'm really good at it! (Much to Lon's dismay!)
But, again, I plead "temporary insanity", due to the stress over a sick child...and major lack of sleep!!!
When Dr. Glew came by the next morning and did her physical exam and assessment, and consulted with the rest of the docs, she retracted her idea. She is on board with the rest of the team, and they are all leaning towards it being REFLUX.
Eli had the Endoscopy Friday morning at about 8:30. The pictures showed mild to moderate Esophagitis. And his valve between stomach and esophagus is a little loose. They've taken him off Prevacid...and he is now on a new drug called Zegerid. Let's hope it works.
My "mommy instinct" says such a simple solution is not the complete answer to the major issues we've been having for four long months!
Lon and I are now approaching the idea of him getting the Nissen surgery, with a new attitude.
Surgery is a horrible thought for us. It will be a very hard and stressful stay in the hospital, because Eli will be miserable during the healing. Then a long recovery at home. He is under-weight as it is....and we don't want him to lose more. BUT. If it will make all the pain and discomfort go away...we will have to do it.
Right now, they want to try the new drug for a few weeks and see if it gives him relief. So that's what we'll do....while we pray hard for good results.
We drove home Friday afternoon. Eli slept most of the way. He woke up just as we got off the freeway. He sounded awful! His throat is really dry and sore from the intubation (breathing tube) while under anesthesia. We got to our driveway, but I was scared to go home because I didn't want him to go into respiratory distress...and have to make the long drive from our house. So, we turned around and went back to town and our local hospital. We just weren't sure what to do. So we sat in the parking lot for a while.
I called a some friends, around 6 pm, who live about 5 blocks from the hospital, and they graciously welcomed us into their home, with a moments notice, so we could keep watch over Eli to see how he'd progress....or not.
Eli fell asleep on their couch at 6:50 pm. Now what? :)
So, Andy and Jan offered us their family room for the night! (Thanks guys! We greatly appreciate the love you showed us last night.) We made Eli a bed on the floor, I slept on the couch, and we were WAY more comfortable than staying at the hospital for observation! Mr. E decided to wake up at 3:00 am!! After a failed attempt at getting him back to sleep, I called Lon, and he came and took us home. We were home by 4:30 am, and at 5:20 I started feeding Eli, via syringe, slowly while he laid on the floor. (We do this often, and don't have any problems. We're getting worried because he hasn't eaten for three days! He was on IV fluids)
So, the first liitle bit of food caused him to reflux, and I'm sure burn/irritate his sore throat! It's been a hard morning as he's got a lot of stridor going on. His throat is tight, and feeding continues to cause reflux....causing more stridor....etc...vicious cycle. Dang it!
But, the boy has gotta eat...so I've now been holding him for over 2 hours, he's taken a couple little naps, and we've got his feeding pump at 1 oz an hour....so far so good!
Thanks to Lon, I got a three hour nap this morning...and got to shower. I feel much better now that the hospital cooties are off! sorry this post is so long. A lot has happened and I don't want to forget anything....as this blog serves as my journal! :)
Thanks for all the prayers, words of love, and happy thoughts!
Lon, Amy, & Eli
Eli woke up much happier and calmer this morning. I am so glad.
His procedure (see previous post) is scheduled for 8:45. I was a little nervous about him waking up at 4:50 am, because if he was as miserable as he was yesterday morning....it was going to be a long four hours.
I've processed last nights information a little more, and I talked to Lon. He gently reminds me to not put the cart before the horse. I know...but just hearing the "T" word...makes me sick. I have video for the doctors to review today, to see if they are on the right track.
I'll continue to keep you posted as I can... Stay tuned...
Thanks for all your support and prayers!!!
I just spent 1 hr and 20 minutes with Dr. Glew, a Developmental Pediatrician. We talked about a lot. She seemed to be the most knowledgable person I've talked to yet. Every other doc has their specialty...but she works in the clinic that specializes in kids like our Eli, and is experienced in lots of areas.
After much discussion, I told her about the problems Eli has been having breathing. I say it looks like "apnea" while he's awake. Our pediatrician at home said, "in apnea they turn blue. These are just breath holding spells."
She said the "T" word.
Tracheostomy.
THAT IS THE ONE WORD THIS MOMMY NEVER WANTED TO EVEN HEAR!
I had a little melt down. I'm very sleep deprived and a little emotional. I feel like I cannot handle that if it were to come to that. I said, "What do we need to do to rule that out?" It's going to be her focus tomorrow. She is quite concerned.
Please pray that she is wrong.
Me and God are gonna get real close tonight. Won't you join me? Petition him on my son's behalf.
Please.
Eli needs prayer more than ever. I need prayer more than ever. I feel like I want to puke...
We got to the ER at Seattle Children's Hospital, on Wednesday at 4:15 pm. They took x-rays and blood work. Nothing showed up. Same stuff we'd already had done in Yakima, but they have to follow their protocol.
Finally got up to a room at 10:15 pm. It was a long night. We are on auto-pilot today.
I finally learned how to create a new background AND header! Woo Hoo! I am having so much fun.
It seems, however, that depending on your screen resolution it may not look right. Sorry for that!
This color palette is my FAVORITE!! I'll probably be tweaking it often as I learn new tricks in PhotoShop Elements. What a great program! I can't believe I waited so long to buy it!
Have a wonderful day!
Make your Stick Figure Family at FreeFlashToys.com
