Coop had another possible seizure last night while Jared was rocking him. He gagged a little, immediately started sweating, eyes were wide open with a blank stare. It only lasted 5-10 seconds and then he was back to fussing. Neurology said he is already on 4 seizure meds so they aren’t going to change things unless they become problematic. Other than that, things were fine again until 2:30 when he woke up crying and could not be consoled until the Motrin kicked in at 5:30. When I talked to Dr. Such-Neibar this morning she was unaware that it could take 2-4 weeks for the tube to arrive so we made a plan to try to get everything in order to go home next Tuesday. We have an out-patient appointment with Dr. Warren(surgeon) and Dr. Norby(audiologist) to turn on the cochlear implant next Wednesday so she will try to move that to Monday while we are still here. Then an hour after we made these plans to go home guess what arrived…. the venting g-tube. Becca, our nurse, is finding out how to connect it right now.
PS to Troy=Rob is coming back today so he should be posting the whole weekend. I think I look forward to his posts more than anyone.
PS to Troy=Rob is coming back today so he should be posting the whole weekend. I think I look forward to his posts more than anyone.
18 comments:
Hooray for tube arrival.
As Gammy would say, "Let's get this show on the road."
G-ma C
YEAH---thank goodness!!! Charlie, you are in our prayers! We love you, Love, the Paddock Family in Ca!
good luck!!
"gagged a little, immediately started sweating, eyes were wide open with a blank stare."
I have had that exact same reaction the last two years during the final moments of the byu/Utah football games...Coop, hopefully both of us can be rid of those particular responses VERY SOON!
Finally! Hopefully this is the last task to getting the green light to take Charlie to his new home. Just in time for nice weather and a weekend to adjust, especially with his dad coming home. God bless you Charlie.
Charlie, you and your family our in our familys prayers!! Im so glad to hear you are going to take him home!
I have a question. Are you guys going to be able to bring Charlie to the race?
Yeah!!! Good Luck this weekend.
Angel,
I am so excited to see Britt's treat. Thanks for keeping me updated. My sister, my mom and I will be running for Charlie so I hope we will get to see you again that day.
Charlie, we hope you can go home soon and have that amazing smile return. Everyone can see how caring and loving your family is, and that is a true blessing. We wish you only the best and are in our prayers. If anything tragic ever happened to our little girl, We only pray that we could be as strong of parents as you have. I love to read the posts and am excited to here when you can finally go home. We hope it’s soon. The Cronkhite’s
I stumbled upon your story on KSL.com yesterday and curiosity led me to your blog. I read it start to finish, took a really long time and lots of Kleenex! My youngest is 7 months old and I can't imagine how hard it must be for you all to see Charlie having gone from the charming and healthy little boy to the sick baby he is now. My heart goes out to you! I know I can't help out physically, but I am sending lots of prayers and warm thoughts from California!
Countdown to Tuesday!!! I am so glad that all is finally happenning. Love, Ms.shyla from Montana
I am sure you get lots of advice but my husband has seizures and I wish some one had told me this when we were going through the same thing, it took multiple different trials of cocktails to get the right ones. For example they had him on one that was in therapeutic range but still having partial seizures then they added another still having seizures but when they backed down on one and added a different one they stopped. The other thing I learned is that many many meds lower seizure threshold or decrease metabolism of the medication. I don't know if stopping one or starting one has done that for the little guy. I know you get tons of advice but having been there with the seizures it is very frustating and scary. Hang in there and please know he is an inspiration for my family and he looks so much better. Hurry home. Prayers from Massachusetts.
I read your whole story the other day, and watched every video, and used a whole box of tissues as I sat there. I have a 7 month old and it is so hard for me when she has a cold, you guys are amazing.
I was flipping through the Seagull Book add this morning and came upon a picture that immediately made me think of Charlie. It was called "Ye are the Light" by Simon Dewey, and it's a picture of the Savior with a little boy holding a candle. It's absolutely gorgeous. Charlie's light, however, isn't just shining...it's blazing, brilliantly. What a blessing to have so many people from so many different religions coming together for a common cause, to pray for your little boy. Yep, it's definately blazing! And congratulations on the tube finally coming. I pray that everything works out and that you get to go home soon. Much love, the Fletcher Family, from Provo
The last comment left me with tears. Even some of us that read the blog but don't comment are uplifted by those that do. See how Charlie has helped so many people?? AMAZING!
Thanks for being such chosen parents.
Hooray for central supply getting their crap together! So glad the venter came in and I do so hope that it gives our little Coop some relief. Rob, send me that email when you get a chance, I'd love to come soon to visit and help out!
John's family in CA are checking in and praying for Charlie too!
Love you all so much and continue to be so proud of you all.
Can anyone walk/run the race for Charlie? He is truly a "blazing, brilliant" light to so many of us. Such a small little boy and his family have made such an impact on so many in so many places. Thank you. Those big, blue, beautiful eyes and gorgeous grin have truly touched so many of us. Thank you for your inspiration. Our prayers are with you Charlie and family. And Go Cougars! That's for the little guy.
yes, anyone can run/walk in the BIAU 5K.
i feel pretty "old hat" reading the blog and comments - being so familiar with coops situation, but some comments, like that from Kim above get me. she is right, his light is brilliant. he has a huge spirit and a lot of fight in him.
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