Colby’s Story
Colby had E.coli poisoning, kidney failure and bilateral basal ganglia infarction’s. Or in plain English he had a massive stroke. This video shows his story and what he went through. He is a trooper and our hero. We’re so thankful for all the experiences that have changed our lives.
Updated August 10, 2010
Colby will be having Deep Brain Stimulation Surgery on August 25th, 2010. We would like to ask for your support and prayers for the success of this surgery. We hope that it will give him some relief and comfort from his dystonia. He is in pain daily because of uncontrolled muscle movement and spasms. It’s painful, kind of like random charlie horses all over your body. In my highest hopes (which the doctors told me not to have) we pray that this will enable him to speak again and to be able to control his arm and hand movements. We ask that people will pray for the surgery to go smoothly with no complications or infections and that the surgeons hands will be steady.
If you don’t pray we appreciate any good thoughts and wishes you’d like to send our way. I believe in the power of positive thinking and believe it has healing powers as well. One small request for myself too if you don’t mind. That I can be peaceful and not have anxiety over this. I will be updating the main blog page as we get updates from the surgeon, as he goes into recovery and after he is settled back in his room. I will be tweeting updates as well, obviously only if I can and he doesn’t need me to comfort him at that moment. He is my number one concern and priority but I will update as I can.
Our goal is two fold, for healing and recovery but also to raise awareness of childhood stroke and dystonia. If you could post his button on your individual blogs on the 25th and ask your readers to pray for Colby I know that our goals can be accomplished. I have said and will continue to say that if we can help one person through our journey, save one person from the heartache of E.coli poisoning, or bring awareness to these conditions than it will all have been worth it. Thank you for your help in accomplishing these goals.
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Hi
I just found you through the Friday Follow! I am so happy to see that your sweet baby is now working towards recovery! If you make a grab my button, I will happily display it on my blog to help get the word out about the recipe book
Colby is in my prayers
~Sarah
http://savvycouponmommy.blogspot.com
Thank you Sarah! I am working on one and will have it ready some time next week. I'll let you know when it's done! I appreciate the offer.
Thanks for stopping by my blog for Friday Follow. I'm glad you left a comment. This video just breaks my heart. What a precious little boy you have there. I'm going to follow your blog to keep up with your story.
Thanks Heidi! He's a trooper that's for sure.
I just commented on another post (I'm a new follower from FF) and I just wanted to read about Colby's story. What a beautiful little boy, and so tough. It just amazes me how resilient children that young can be. He is in my prayers.
I am so glad that your son is getting better. I know that this will be a long journey for your family and Colby. I will pray for Colby. I would also be interested in a button when it is available. (I am a friday follow follower.)
Okay I think I got a button working. It's his picture only in the top right corner of column two. Let me know if it doesn't work. Thanks for the prayers and Happy Easter to you.
What an amazing little man Colby is. Many blessings to your family! New Follower from FF.
Amazing little boy! Amazing family!
Stopping by from FF. What an amazing story and I am so happy to hear that he is in recovery. Blessings to you all.
justanightowl.com
Colby and your fam are in my prayers. My son suffered from epilepsy. I've always thought it was harder to know the potential of your normal child and then lose it all than being born with a handicapped child. I guess I wouldn't know because I haven't experienced both, but watching our son slip away was the hardest thing I've ever experienced. Thank the Lord we found a cure!
I think you are right. It has been hard adjusting to the loss. I don't know if it would have been easier if he'd been born with the disabilities or not. We still have his skateboard that he got for his second birthday. He was skating in a pool at the local skatepark and was so coordinated. We were going to take him snowboarding that winter. His little football he got the week before he got sick breaks my heart to look at but I can't get rid of it. Anyway enough talking about the past on my part. I'm so glad you found a cure for your son. Thankfully seizures are one of the few things we didn't aquire with the stroke and for that I am grateful. Thanks for putting our button up.
Stopped by from Friday Follow; I can't imagine the struggles your family has had to endure, I am thankful Colby is improving and you are all learning to move forward together. amber
It's wonderful to hear that Colby is on the road to recovery. My son has Autism and hyperbaric oxygen is also a very effective treatment for spectrum kiddos. Isn't it interesting that the most beneficial and proven therapies are hardly covered?
Glad I found you through SITS.
~Kerry
Don't get me started on the beneficial treatments not being covered. We fought and fought and fought and finally we just found a way to pay for it. The only reason it's not approved is because you can't patent oxygen. So of course there's no money to be made off it. Okay stepping off the soapbox! I'm glad it helps your son. It's amazing stuff.
Following from Friday Follow. Of course, your button will go on my blog.
My prayers are with your family.
http://tsue-thatswhatshesaid.blogspot.com/
Thanks Terri for putting up a button! I appreciate it!
WOW. My mom works for a hyperbaric unit so I know what you're talking about. I'm going to put a link in my sidebar to help get the word out about the recipe books. Blessings~
Thank you so much! Any help is greatly appreciated! I can't believe how much hyperbaric helped him. He literally screamed 18 hours a day after the stroke. One week into the hyperbarics and he started smiling and laughing. I'd do just about anything (including selling ebooks on here) to get him more!
I am posting a button to my blog. If you don't mind the question… I was reading up on HUS and it seems there isn't any warning other than diarrhea which is so common in young children. Is that true that it just hits like that with no warning?
I will be praying for his further recovery. I'll also be watching your monthly cookbooks.
You are right. The beginning stages are just like a regular flu almost. Sometimes you having vomitting, sometimes a fever, sometimes just the diarrhea then it just becomes blood. It's crazy scary and it's why little kids especially have such a hard time with it. It is an amazingly strong and resiliant little bug. Thank you for your prayers and for posting his button. I appreciate it!
I will keep you in my prayers. I am so happy for you all that Colby has made such a good recovery. I know there is a long way to go. Hang in there! I will be putting your link in my blog. Come see me @www.happyfamilyhappykids.blogspot.com
Wow! You're right, a real tear jerker! Hope you're all doing well and Colby continues to improve.
Happy FF! I'm your newest follower.
Hi I'm stopping by from Saturday Spotlight at JustAnotherMomOf2! Such an amazing little boy you have! <3 I'm now your newest follower
Thanks for stopping by Brooke! I'll be over to visit you in a bit!
I tried to comment, but I think it got lost. NOTvery good with computer. Thanks for opening up your life with Colby. I was a social worker in ga. In 8 years I helped link up children to services and follow their steps. At times families were told there might be limited progress. Well, I saw children who mastered more than anyone thought they could do. Tears of JOY came out as children proved that anything is possible. Your love and grabbing for help is the key. God bless.
saw your sharing about Colby. I worked as a social worker for 8 years with children in Ga. I helped to link up children to needed services due to a medical issue. I did monitoring of children's progress. At tmes doctorswould tell a family that their child would have limited progress. It was joy and tears of happiness to see children go beyond expectations of others.Children are tougher than adults.
Hi! Thanks for stopping by and for the encouraging comments. I have shed many of those tears of happiness over the last three years. Colby is a trooper. Make sure you come back by on Thursday. I'm going to put some updated videos of him laughing. He was having a good day today so I thought I'd share.
i am so glad you got my comment definitely haveto still master the computer as i saw that 2 similiar messages came to you.. it was important to reach out to you. i will check back on thursday. my very new and still learning to blog ishttp://somewondersoflife.blogspot.com/
I am friday following you. It is amazing to read about Colby's story and also the rest of your family! Thank you for posting this great video! Colby is a real trooper, as you say.
http://beingtazim.blogspot.com
i can across your blog via a friends review post..i have to tell you that Colby, you & your family will be in my heart & prayers..i hope he further shows improvement & is one day able to live like a lil boy like him should be able to..hugs,prayers & thoughts for you all…get well soon Colby!
-the childers family of albany ga
Thank you so much! We appreciate all the prayers we can get!
Gosh, I cannot presume to understand what you are going through, but I do know that God is going through it with you and Colby. He will give both of you the strength to meet the emotions and challenges that lay ahead.
Hi! I’m FFollowing you too (on a Saturday) – I will be putting a link on my website and would be very interested in promoting your cookbooks on there too. I wish you God’s strength and comfort as you continue through this journey to help Colby. *Hugs* – Tina “The Book Lady”
http://www.familyliteracyandyou.blogspot.com
Erin, I found you through Red’s community in the BF. I’m sending lots of prayers and good wishes for Colby’s surgery tomorrow.
Erin, wow a lot has gone on since I’ve since you guys last! I’ve been thinking of you guys a lot lately and I miss being with your family.
You guys were like a second family for me. I will definetly keep you guys in my prayers. I hope all goes well with the surgery. Tell Colby I miss him.
Hope everything go well there. wishes he best.
Erin… I am so sorry to hear this! I haven’t been blogging much over the summer so I just saw it. You are definitely in my prayers. Your family is in my prayers. Colby is in my Prayers. Much love from my family to yours.
No worries! It’s hard to blog in the summer. I slowed down too! Colby is doing great! We turned on his DBS device this last Thursday and so far so good. It was a hard decision to make but so far I’m glad we went forward with it. He is doing great with all day kindergarten so my worries there were unnecessary. It’s been nice to be proven wrong over the last two months. I’m going to have to rethink the backwards boy nickname if he keeps this up. I won’t complain if I have to change it. It would be nice if he would start doing things the way everyone expects him to. Thanks for the prayers and the hugs! I hope you guys have a great weekend and I’m happy to see your back!
Hey colby lad by now i hope u are back on your feet MISTER !!!!! I have a wee boy Jack who is ages with you and we want to see you well…..I (((not for colbys ears… i had a wee girl who died few years ago from a genetic illness so my heart goes out to you both and what u are going through and i can only say if you feel u deserve more care, better help etc, etc, fight fight fight for it…as its the only way you get help, by shouting…yaaaay c’mon colby xxxx
Hello. I have had two strokes; my first at 18 months and the second when I was 14. My strokes were metabolic since they were caused by Mitochondrial Disease and therefore could not be seen by CT or MRI. Mitochondrial Disease impaires the body’s ability to produce energy needed to the body to function on a normal level.
All my love and support to your son. It was heart wrenching to watch your video because before E. Coli, your son was completely healthy. I can’t imagine what it would feel like to go from healthy to critical condition overnight because I was neurologically symptomatic from birth.
In fact, my most recent blog post is about the morning of the 10th Anniversary of my second stroke which was this past Father’s Day.
I am posting his button on my site. What a tremendous, strong little boy.
I am new to your blog (here by way of SITS) and have yet to come across your posted updates on the Deep Brain Stimulation Surgery. After reading and watching your video (which is very moving in itself), I wonder how the surgery went and how did he respond.
Colby is doing well. The surgery did not help as much as we had hoped for but we also haven\’t exhausted all of the 800,000 plus frequency combinations. We should be going for another adjustment in the up coming weeks. He has a little bit better head and trunk control from the DBS. He occasionally has bowel movements on his own (which might not sound like a big thing but it is!), he is more verbal in that he is saying more distinct sounds but not necessarily words. It is a very long process for secondary dystonia to find the right frequency. Just with the changes we have seen I\’d do it again for him in a heart beat. It\’s been worth it.
Glad to hear DBS is working to some extent. Baby steps…
I have a piece of Medtronic in me. I have severe spasticity in my left toes so I basically walk on my toe knuckles. Oral Baclofen didn’t work, neither did any of the other oral muscle relaxant meds; made me too tired. I became resistant to Botox, but after 10 years had a wonderful response to intrathecal (into the CSF) Baclofen during a test last summer.
I had surgery last September to implant the Baclofen pump (in my belly with a catheter going into my spine) and a repair in April. Like you and Colbie, I have noticed some changes, but I’m not “there” yet.
I thought about DBS, but was told it wouldn’t work in me because I have an underlying condition causing my symptoms, not a random event.
Try to think of the adjustment period as a Tortise and the Hare of sorts…slow and steady wins the race.
I’m so happy for you that the baclofen pump is starting to help you! Colby’s was placed, revised and removed with in 5 weeks so we never even got up to a theraputic dose! It was a crazy month that month. DBS is wierd. I think that I was originally told that it helps 60% of secondary dystonia patients. Colby is having minor improvements with definitely means he is not in the 40% it doesn’t help but I was really hoping it would help him more by now. You are right though, slow and steady wins the race and we’ll keep at it until we find the right frequency.