We have had a lot of people ask if he ever opens his eyes because we never post pictures of it. One reason we don't put many open eye pictures is because he doesn't look the greatest.
Last night was pretty much the same. He had two storms, one of which required additional Ativan. He had a diaper blow of vesuvious proportions at 1:00 am like I've never seen before. It took 4 of us to clean him up again but I hope it made his tummy feel better. Today has been about the same as the night- a couple storms- long duration but not as severe. Dr. Such-Nibar came in this morning to see how he was doing and said some of our goals are 1-stabilize the storms (by adjusting medications or hopefully he will stabilize his brain so he doesn't storm as much) 2. Get results for hearing test, possible hearing aid trial, consult with ENT surgeon 3. Down the road-get the g-tube or j-tube inserted. Rob and I have spent an enjoyable Sunday together. Britt came to visit and we attended the hospital sacrament meeting with Troy and Andrea Chilton. Now Rob is watching NASCAR cussing at the TV because Tony just wrecked.
Good News: Jada is heading home!!!
22 comments:
almost sounds like any usual sabbath for you guys - you playing with britt, rob cursing at neckcar... just throw in a storm or two i guess. i like the goal setting. i know rob has thrown time out the window, but does terry have a timeline she's working with?
have a pleasant afternoon - i hope you are all feeling well still ;)
I think he looks perfect! :-) Keep up to good work Coops and get yourself some good rest tonight. I love you little man...
I think he looks fantastic. I miss you guys so much!!! It did not feel right at all leaving without you.
I love his blue eyes AND it is good to see them open because they weren't for so long.
1. Is it normal for babies on his type of nourishment to have blowouts more than not? Is it a mixture of his "food" and medicine rockin' his stomach? I have to know, because it is always about the poop.
2. Don't they need to move quickly on the hearing matter?
I am glad you guys had a good day. Kiss CC's belly for me.
miss you guys and can't wait to bring you a little present :) I'm happy to see both of Charlie's sweet eyes open. Can't wait to get the influenza (times 4) out of the house so I can come visit....I'll make sure it's good and gone! Love and prayers!!!
I think he looks great with his eyes open. Thanks for posting those pictures.
I do not know you guys, but we pray for you all the time and are just so proud of little Charlie and the progress he is making. Small steps is what it takes! Hang in there - it is always more difficult to see any progress when you are seeing him all the time. He has come so far and I am sure he has a lot planned for the future!
he looks awesome. i know you might want to filter so peeps don't get upset by the pics, but you have to understand we love that little man - unconditionally. no matter what his sleepy eyes look like. we love you guys that way too(mostly, rob's facial hair is up for discussion).
You are both an inspiration to me--I have just been sobbing as I have read through some of these posts, and my heart is so full of love and admiration for people like you. Charlie is a special little spirit. Even though I don't know him or your family, I can see it in his countenance--what a precious, little angel you have. We will be praying for his rest, his safety, his recovery and well being. Thank you for letting us be a part of Charlie's story even though we don't know you. Rob and Angel, you are noble and strong people who can handle a challenge like this. Even though you may think you can't, or that it's been difficult going through it all, you have proven that you CAN do it, you ARE doing it, and you're growing from it--you're getting through it, and you will. Oh, just hug your little boy so tightly and whisper in his ear that that there are many people praying for him and thinking of him on a daily basis. Thank you for helping my testimony about love and family relations be strengthened through your examples.
J
I'll try to only make one post this time around. Not to take over the spiritual responsibility of this blog as by reading over the past month I'm pretty sure others have that taken care of; but one of my favorite quotes from Pres Hinckley:
"Things will work out. If you keep trying and praying and working, things will work out. They always do. If you want to die at an early age, dwell on the negative. Accentuate the positive, and you’ll be around for a while."
So there...now I don't have to go to church for 3 weeks! Keep up the good work..our thoughts and prayers continue you way.
B
I am watching Oprah's BigGive and the one thing that the rest of the country is grabbing on to is the kind of people American's really are. We have all through Little CC been recipients of the BigWig is so many ways.Thank you, Charlie Cooper, Angel and Robert and the rest of the Christensen and Barlow family for letting us share in you grief, your hope, your prayers and your faith..
Still Love you,, Jill B
Sorry Big Give not Big Wig (that would be Rob and Chad.) Jill B
He looks so great! I have to admit that I can't stop thinking about his future after seeing the pics posted from his CT scan. I've been searching for answers about the outcome of brain atrophy. Perhaps I am a hopeless optimist, but I pray that Charlie still has hope for somewhat of a "normal" life. I found this statement on a website about brain atrophy that gave me hope.
"Doctors try to make a patient capable for life. But it is hard to do that since the number and connections between neurons are decreased. But, some improvement can be achieved. That is why the family members must be very patient. And they mustn't give up hope!"
what a support you and your family are to little Charlie. As so many people do, we admire your strength and have felt much inspiration from you. So many wishes and prayers for little Charlie's recovery.
Check out new Longman family post with cute pictures of Charlie
I don't know you, but I wanted you to know that a family in Texas is praying for Charlie and your family!
I know it doesn't help right now, but I have a family member who had the same illness as Charlie when she was two and after a very long and hard fight is a very healthy mother of four boys! The only lasting effects are some slight motor difficulties(she walks with a limp) and she is deaf. However, back in the 70's she was given a very grim prognosis. It just proves the doctors don't know everything. The human brain is incredible!
Charlie is a fighter! Stay strong!
Seems like today is a day for good wishes from people you don't know, so I would like to add mine -- I can't even recall how I came across your blog, but I "visit" with Charlie every single day and have fallen absolutely in love with him. I send him and your whole family all the love and healing I can muster -- I am not a religious person so it's my way to pray, I guess. He is a beautiful, wonderful boy who has the great fortune to be surrounded by such a great and loving family. Love to you all.
OMG, he's beautiful with his eyes open. You should never think he doesn't look the greatest. As many people that you have praying and visiting your blog we love to see pictures of everything thats going on. Keep up the good work and give Charlie hugs and kisses from Missouri.
I check on Charlie multiple times each day. How can anyone read this blog and not feel the Spirit, love, support and prayers? It amazes me!! I am sure you do, but I hope you feel it too. Know there are MANY who are praying for you and your sweet family.
I find my self scrolling down to the start of Charlies illness and reading the comments and posts over and over. It seems I always read something I missed, I believe it is the days lesson I need to apply to my life. I love your family unity, support for one another, and most of all the humor! Thank you for allowing me to come aboard this crazy roller coaster ride it has changed my life forever.
PS: Charlie has the most beautiufl lips! Women in Hollywood pay big bucks to have a pucker like his!
Charlie looks great and very handsome! We who pray and think of him daily know that youlove him much. We know that you worry because his life has undergone changes that you probably didn't expect.God gives amazing strength! Shyla from Montana
I check Charlie's updates several times throughout the day and when there is not one for a while - I really start to get nervous! The family is so good about doing updates and if there is not one - it is usually because they are busy or because nothing has changed. Regardless, I still get anxious and nervous.
Charlie is BEAUTIFUL! I check the site multiple times a day and all of you inspire me to make each day count. Kids are resilient they recover it may take a long time but he is so young his brain will form new pathways and with you too as parents he will succeed at whatever he does:) lots and lots of prayers from Massachusetts.
ANG I AM GLAD TAHT YOU PUT A PHOTO OF JACKJACK WITH HIS EYES OPEN. ROB I WAS ALSO CUSSIN AT THE TV WHEN TONY CRASHED. TAKE CARE. WE LOVE YOU!! KIPPI & RICHARD
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