Thursday, July 31, 2008

Sucks and Smiles


For the last while per the entourage of therapists we have gradually started introducing varied items orally and w/ baited breath monitored Charlie’s disgust or acceptance of said items. It has been long known that Char is quite fond of a pinky finger and if left to his devices he would chew any and all pinky fingers into damnation leaving the donor w/ a mutilated stump. But that’s just it, he only likes to chew not suck.
I figure there are two ways to look at this; 1. Charlie must be a Cougar fan insomuch as he isn’t used to sucking. 2. Charlie might be a yewt whilst learning from example watching his mother chew on things like 4th and 18, 17-10, "Beck under center, 13 seconds left…" etc. Or perhaps there is a less likely 3rd idea that could explain his plight. We are told that the act of sucking is very difficult and takes a great degree of coordination. Which in somewhat of a backhanded way proves my long argued point that Tommy Grady (Utah, 05-07 QB) and Steve Tate (Utah, 04-07 DB) are great athletes simply by deducement of the degree which they suck/ed ergo great coordination and capacity of that which is difficult. Comprende? Editors note: Rob is excited for Football to start Aug. 30th.
However sucking as it is related to Charlie is improving albeit at a glacial pace. Last night Ă…ngel gave me a bottle of formula while I was enjoying my snug w/ Char just to see what would happen. Tantamount to the crimson team on the hill Charlie did some good sucking. Off and on for near a quarter hour he worked the bottle not w/ what would be considered calf like proficiency but was entertaining the idea that relearning sucking might not be a bad idea. It was only about an ounce of formula but most of it was extruded by his own power and all of which was swallowed nicely w/o any ill effects i.e. gagging, choking, aspirating.

Good Dream/Tender Moments
Last week Rob and I were cleaning the house at 11:30 at night (We both do better at night than in the morning). Charlie was in a deep sleep on the couch with his heavy exhaling snore. As I came over to check on him I saw a twitching smile. It reminded me of a newborn when they are in a deep sleep and they smile due to gas bubbles or dreaming or just because they need to exercise their mouth. Whatever was causing it, the corners of his lips turned up and then returned almost immediately to a relaxed stone face. This happened 3 times for a split second each and then I ran out to the garage yelling "Rob come quick, Charlie’s smiling". He sat down on the couch and saw 2 more split second smiles and then Charlie was done. Probably off dreaming of something else. I love knowing he still can smile even if it isn’t in response to anything
As I’ve said before, Coop gets meds at 8pm and then falls asleep for a while, he then gets more meds at 10:00 to help him stay asleep. Occasionally Rob and I delay the 10:00 meds an hour or so, on purpose, so we can enjoy a little cuddling when everything is calm and we can just attend to Charlie. He will calmly wake up and look around and seems to connect with us more so than in the day. His body is not very active this late at night but his eyes seem to be more active than usual and he will just stare at our faces.
A week ago during this time, I was placing my finger at the base of his fisted palm. In the past, in order to get him to hold onto your finger we have either wiggled it into his fist or waited until he opened his hand and then quickly put it in. This night, however, he purposefully (a word we use sparingly because we aren’t sure he means to do most movements) opened his hand and then tightened it around my finger 8 times in a row. (That is why I can say purposefully). It was like he had figured out that if he wants to grab something he feels that he first needs to work against the stiffness/tone in his body and open his first and then close the fist again. What a discovery for him.

40 comments:

The Baum's said...

Holy Crap! That's so cool! Who would have ever thought I'd be calling my whole family into the office to look at a kid sucking on a bottle, but that is truly awesome! It makes you appreciate the little things....enjoy it!

Angie said...

Way to go Charlie! Keep up the hard work!

Shannon&Eli said...

i am sitting here in tears. That is amazing...and i am crying because of the time you take before bed to sit and snuggle with such an amazing little boy. I hand it to you. You are amazing...

Kristin said...

OMG, that is so awesome! I LOVE this post... (especially because we got to hear from Angel too). I never thought that watching a child suck on a bottle could bring me that close to tears, but I was wrong... that is so neat. Congrats on the baby steps that give you hope!

Megan said...

I have been so behind on blogging...so when I checked Charlie's blog I was ecstatic, baby steps are awesome!! Way to go Charlie!
We still think of you guys every day!! We sure love you Charlie!!

Anonymous said...

A-MAZE-ING! The world is still cheering for you Charlie.

Great to hear from both of you, Rob and Angel.

Meghan said...
This comment has been removed by the author.
Andrea said...

I am truly elated reading these words. I loved, loved, loved the video. Way to go Charlie!!! Ashley is asleep now, but will be so excited for Charlie when I show this to her tomorrow. I'm impressed that he is liking the foul taste of formula after getting tastes of lip smackers. Keeping steppin!

Andrea Mathis

Clancy in Idaho said...

That video was precious. Thank you for sharing it. Charlie's many fans out here in the blogosphere never get to see him in action. To do so, especially doing something that is such a big deal like sucking and swallowing it, makes my heart sing. I wish someday to meet Charlie. He and his parents have inspired me in ways I can't begin to explain.

The Woolstenhulme Family said...

I LOVE that Charlie is learning to do such little things. I really enjoyed the video. It is neat to acutally see him in action. Keep up the Charlie Steps!! This is exactly what we are all praying for. I say this everytime but you two are the most awesome parents!!! Keep enjoying you alone time at night with Charlie and give him a squeeze for all of us!

linds said...

i love everything about this post!!! good work char!

linds said...

wait, wait...not everything. rob you lost me in the beginning and i come from football stock.

erin said...

Way to go sweet Charlie! It was fun to hear from both of you in this post. I am so glad you shared the smile story and loved hearing how he was squeezing your finger! We love you guys! Go Charlie!

Suz said...

Yet another reminder of how great a 'Charlie Step' can be! Wearing my Charlie Step braclet helps me remember to slow down and really appreciate the small wonderful things in life....something I really need to work on. I cease to be amazed how many lives have been changed for good by Super Cooper! I truely feel blessed to be a very small part of his life.

XOXO!!!!!!!!!

Tammy said...

That is so awesome. I got lost there at first also. The only thing I really understood was that BYU rules and Utah sucks! As soon as we get Kayden's BYU flag put up that all the football players signed for him last year I will let you know!

summergibbs said...

I cannot read this blog at work anymore! Everyone in the office is wondering why I am sitting here crying. Yay for Charlie! He is most definitely taking "Charlie steps" and is progressing every day! He is such an inspirational little boy and you are both awesome parents. Keep up the good work!

Anonymous said...

Amazing news Guys!! Loved Briit's Answer to Angel and the Video! Rob makes me smile. Shyla

Allison said...

That is such awesome news. And I must say Rob, I am equally excited for August 30th. Go cougs! And love that you have Pearl Jam playing in the background. I am a huge fan.

Meghan said...

hooray for super coop! whilst i am aware he is no where near plowing down a bottle, i love that he has a new step to be working on. yay! i am also super excited that he is wrapped around your finger ang.

ps rob - you win. but check out m-w and see why i am an idiot.

Erin said...

First off, Robs post cracked me up even though I know nothing about football.
Second, how tender is HE?! Wow.

Erin said...

LOL- by "HE" I meant Charlie. LOL

Anonymous said...

I have followed this post since my daughter told me about, and I sit here mostly in tears the whole time I read them. For me, I have 4 grown children and grandchildren, and I cannot imagine what strength it is taking from both of you to keep up the good spirit that you continually do for Charlie. It is these types of moments in his life that you will be so superbly blessed for in Heaven, and know that there are thousands of people out there praying for Charlie and cheering him on with each of his little "Charlie Steps". May God Bless you all in your daily lives in caring for such a precious little boy.

Pat

wheelyfast said...

So cute!
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Through the Looking Glass said...

Ah Charlie - you suck almost as much as your dad! (Which apparently is very little - never fear, Rob) I can't wait to see you again tomorrow night and I hope this means I'm allowed to stick my finger in your mouth and get in on the action.

Keep up those smiles - those do wonders for every mom's heart.

Marilee said...

Who knew a video of someone sucking (!) could be so cool. Way to go Charlie!

Anonymous said...

Hooray! The video was especially great to see and the family enjoyed it, too. Since meeting Charlie in person, he's even more dear to us. Still praying for you guys!

Much love--Kara M

p.s. Sorry, Rob, but I just had to start skimming at about line 2.

Jamie said...

Awesome Charlie! He is such a great little person. Again, thanks for always sharing thess private and tender happenings.
My daughter wears her C.C. braclet with so much pride. She tells people "this is my Charlie Cooper braclet, he is sick, and he is my friend!" It makes me so happy, we have never met you, but she has such a sweet interest in him. We continue to pray for you.

Anonymous said...

You are kidding! That was awesome!
You guys are so amazing. You handle new normal with such grace. I am so excited Charlie is making purposeful movements- and I hope and pray that soon you will be enjoying purposeful smiles. They may not be the same big toothless grins you enjoyed before Charlie got sick, but victory is sweet in whatever form. We will take what we can get from this little fighter. Thanks for keeping up the blog and sharing your wonderful family with us.
Still praying!- the Messicks

Trish said...

This really is the best news of the week! Hooray and strong work Coop! We love you so and wish you were going to be at the wedding as it's really you, Char, that held us together!

Anonymous said...

YAY for Charlie!!! We are so proud of you! Keep working hard :)

Mrs. Organic said...

His story is very inspirational, what a champ!

Do you know about Communication Interveners? It is possible that Charlie would qualify for one as part of Early Intervention. They help children with vision and hearing impairments communicate.

Anonymous said...

Charlie You Go Boy !!!! Thanks so much for sharing his progress with us. I love to check the blog each day to see if there is any more great news. You are amazing parents and you give me encouragement when times are rocky with our little one. Charlie is getting so big too. Keep up the good work little man. I am cheering for you. You can't go wrong with Roxanne and Joel helping you out. They have done wonders for our little girl.

Love,

Bountiful Family

Anonymous said...

Wow you guys. How exciting! That is truly some remarkable progress. Thanks for the update!

Steph said...

CHARLIE!!! We're so proud of you buddy!!! Still praying for you guys and love to hear about all the little Charlie Steps!!

Anonymous said...

wow!! how amazing is that! what a great couple of weeks you have had! GO CHARLIE...and cougars :)
-fans in orem

Anonymous said...

Thank you, thank you, thank you for including a video of sweet Char. I love that little boy so much despite the fact that I am in NC and don't personally know any of you, and it was so great to see him do his very best Ute impression. Go Char! :)
I am so also happy for you both that you were able to see the smiles. I love hearing these little stories of progress. His brain is working hard to rewire things. Let's keep celebrating all the "Charlie steps".

-A friend in NC

Anonymous said...

Wat to go little guy. I find myself yelling to emily in the other room to come quick. Though the moments aren't long, and we never can be sure why, I love those tender mercies. Whether its him holding his head up in the stander, or a random smile or chuckle, or that he took 3 bites in a row of mash potatoes and gravy without choking, I swear it is just as rewarding as watching a first step or hearing dadda as the first word. It took a year and a half for hunter to start opening his hand, I hold it every chance I get.

Bryson

Ginny said...

I know I am a lot slow on the uptake, but hey, we were out of town. I did read the text of this post from my phone while waiting at some paradisiacal location for something I can't now remember and laughed embarrassingly loud at the parallels Rob drew regarding sucking. Dave appreciated my outburst a little more (and was embarrassed only slightly less) when I shared with him the dialog.

Regarding Charlie's version of the verb, I couldn't be more excited!

DribbleBoy said...

GOOD JOB CHARLIE!!!
LOVE IT.

McCall

Anonymous said...

Oh, what a sweet little baby....he KNOWS his mama and his daddy, and is trying to communicate in little ways. I'm sure of it. I'll bet he would tell you everything will be ok, that he's being watched over and taken care of, and that he loves you SO much for taking care of him if he could. Oh, I would do the same thing--prolong giving him the sleepy meds just to get to snuggle a little longer. Your little boy is so precious.....so so tender and precious...