3 months ago this is how Charlie looked. An IV in every limb, breathing with a vent and not doing any voluntary movements.
This is how he looks today. Only 2 tubes and 1 will come out tomorrow
IRob is not allowed to be by Charlie because he has a cold. He hates it, but maybe I can convince him to post from home but in the meantime I'll update (Angel). Charlie had a great night, only waking up once at 4:00am. He is now fully titrated over to the g-tube (all of his formula is going in his stomach) so the tube in his nose will probably be removed tomorrow. We will keep him on continuous feeds even after we go home and then down the road we will try bolus feeding (feeding all at once like meals). I haven’t seen any liquid or air in the bag yet but he is tolerating his feeds well so the venting tube must be working. Rob bought Coop some flavored lip smackers (chap-stick) to encourage positive feedback for sucking his lips. He seems to like sucking on his bottom lip.
Susan and John spent their "date night" visiting with Coop!
Cami Poulson Lane (married Rich Lane). Rob and I went to school with Rich. Such a small world
Louie & Rodrigo- the coolest kids in PCMC. They have races down the hallway in the middle of the night and Rob is often found in Louie's room playing guitar hero until the wee hours of the morning. We will miss them.
Since the weather is so nice today we went outside for a walk to let him get some fresh air. Charlie hasn't been outside for so long and he really seamed to like it. 
By the fountain in front of Primary Children's Hospital
I saved this picture for last because it was my favorite part of today. When he was basking in the sun his pupils reacted and became the same size as mine were at the time.
30 comments:
Oh Angel! He's so beautiful! He has come such a long way. Congratulations on that. We're excited to know you'll be coming home soon. Let us know when we can visit. We know you'll need some space for a while. We love you and will continue praying for you. Hopefully, we'll still get some updates on the blog!?!
Wow, it is amazing to see those pictures. I cried when I saw the pictues of him outside...I'm sure it was a beautiful day for your family! Your family will continue to be in our prayers. We sure love little Charlie!!!
He looks amazing. I am so excited that he will be almost tubeless soon. I love Sunday walks and I am so glad that he is able to get out in the fresh air. He is so cute. Love you guys.
He looks so good. I love All the pictures but I can understand why you saved that one for last. It's my favorite too. He Must love the outdoors.
Great pictures! It will be so nice when you are finally able to take him home! Are they looking at this week? Does the fact that his pupils reacted to the light outside mean good things as far his vision is concerned? Do they have any idea yet if, or how much, his vision has been affected? I'm glad to see him looking so much better - he's come a long way! You guys are all amazing - he's a lucky kid to have a family like you. :)
He looks more & more like himself!!! Handsome as usual!! Congrats to you all. Remember as you move forward.We love you and support you. Shyla
OH MY GOODNESS!! I couldn't be happier!!! What did the docs say?? Love and prayers!
Rox
Beautiful, Sweet Charlie! He is so handsome! Just being outside must have felt incredible to all of you. I love the pictures of him. I am go happy that he has come so far. The comparison is amazing. You have the continued prayers of many!
Pupil reaction!!! We LOVE pupil reacion! More please--
He looks wonderful! Sounds like things are going smoothly. He looks so cute in the last picture. You guys are doing great. Hang in there. You are in my thoughts and prayers.
Thank you for posting those great pictures! Charlie looks so good, especially in the last one. I'm so sorry Rob is not able to be there. It must be hard on him. We'll pray that he feels better soon so that he can be with you all. Is the plan for discharge and trial of the cochlear implant still for this week?
Kara M
Well, what a pleasant surprise after returning from our Sunday walk (past your house, I might add)!! The pictures are amazing. I love seeing the brightness of the sun next to the brightness that is Charlie! No wonder his pupils reacted...he was in good company! Thanks always for keeping us updated and letting us ride the ride with you!
Looking good Charlie! (You too Suz!)
Coop! You are a handsome kid! Way to do some growing and some lip smackin' and pupil reacting - nice moves. It was the perfect outside day, I am glad you got to spend some time there.
Love the last pic! I bet he loved being outside. Hope you have a good night Charlie.
He looks so great. That last picture is so beautiful! What a great day to go outside!
I think it's amazing at the love and support that so many people have for you and your family. We are excited for Charlie's progress, and the anticipation of him going home! Yeah! You mentioned Louie and Rodrigo...I know you can't talk about their personal situation and why they are both there. But is there something special that we could do for them, since they are so close to your family? (Sounds like they are already set up with guitar hero!) I just don't want them to feel like they are forgotten, even by those of us that have never met them.
Liz
The sun can do amazing things for the soul! God Bless you SIEMPRE! Pura Vida Charlie!
The Baxters
I must say, since I first heard of Charlies story last week from a good friend and viewing his blog everyday, I look forward to checking his blog. Its the first thing I check!
His photos always bring tears to my eyes and I am so happy that he is doing better. I'm sorry that Rob has to stay away until his cold goes away, but perhaps this is the perfect time for him to get some rest.
Charlie is beautiful and I'm so glad he is getting another tube removed tomorrow....yeah!!!! He looks like he was enjoying the fresh air. God bless and he is always in our prayers. Love the Paddock family in Redondo Beach, CA.
I became aware of Charlie this week. It's amazing how you can immediately fall in love with him. I am so sorry for all that your family has gone through...especially sweet little Charlie. He is such a fighter! We are going to continue praying for him and your family. What wonderful parents you are. I wish I could just come and rock him. He is so precious. I have a little girl around his age, and couldn't even imagine. I am just so happy you still have him with you today. I wish you all the very best. Charlie, we love you!
i am commenting from inside the mini in mantua because cheryl told me about the eyeballs - i couldn't wait. WHAT A CHAMP!! i am thrilled. love that he got outside, he needs a little tan - he's started looking like his mothers son ;)
it has been a long, emotional three months. i'll never forget that first moment in the hospital... and as i really believe this is what was meant for charlie, if i were doing the asking, i couldn't ask for better more loving, awesome "charlie fans". while at times i know it's been exhausting for you guys, can you imagine doing this alone as so many people do? you are all loved. ty commented tonight about how cool it is that people around the world are actually praying for your boy who they don't know. not just saying it, but actually praying. awesome.
sorry you can't be with him
robbie. get some rest ang. we're excited for his homecoming.
I have to tell you all.......the pupils are FANTASTIC! While on the group date with Ang and Big Jare last night (and poor Jenny RN who was taking WAY TOO MUCH garbage from Jared-I told her to call security), I almost hugged Jenny when she checked his pupils and they were reactive. They were a bit sluggish, but as a first time viewer of this small miracle in those huge blue eyes, I almost cried. Looking at those eyes in the sun today makes me want to do a cartwheel, but we all know such behavior would end in traction. I KNOW that this little dude has big things ahead and I feel pretty lucky and totally blessed to be able to wait and watch!
XOXO
my friend passed along the story of your son. he is truly a miracle! My brother has spent a great deal of his life at PCMC and they can work wonders up there! Your son is moving strides as the posts go on. I truly hope he makes it thru this quickly
Ahhh save the best for last. What a beautiful picture. He is such a beautiful baby. This picture is great. He seems so happy and content and just happy with life. Great photo hope you all had a great day. These photos look like we were all there with you. They capture your day. Thanks so much for sharing. I love this little guy and I have not had the chance to meet him. You are in my prayers little man.
Many of us don't have a personal relationship with Charlie's family but we feel very connected through your blog and the thousands of prayers being offered each day on behalf of him. What a champ Charlie is. That is fantastic to see progress, especially in those big beautiful eyes. They speak to your soul and connect to your spirit. Thank you for sharing your story and his mission with all of us. Best wishes for continued progress. Please let those of us that don't know you personally know if there is anything we as a community or as individuals can do for you and Charlie. Especially with his homecoming not too far off, if we can help in any way big or small, please let us know.
What a great day, I'm bawling, and I just wanted to tell you how excited I am for you that things are moving forward and not backward. I can't wait for your family to be able to take him home. We my gigantic family had a special fast today for a cousin and an uncle, and we decided we wanted to add you all and Britton and Charlie to it. I hope it will add a little more "umph" to his progress, no matter how little that "umph" may be. We love you, and also, since so much focus has been set on Charlie, for good reason, I don't want Britton to feel left out. Is there anything he needs that any of us could do for him?
I'm so thrilled to see so much progress. My thoughts and prayers continue to be with you guys.
Great to see him moving forward.
We love this little guy.
That last picture of Charlie is so sweet! I am sure enjoyed the sunshine and was happy to be outside like all kids do. Love this little guy!
What a wonderful day! Congratulations! I hope all is going well today.
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