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.

Tuesday, July 29, 2008

Emily in PA

I've been reading Charlie's blog for a while now...some friends of mine had a link to it on their blog, and I was immediately drawn in. You guys have been a huge inspiration to me, especially as I've faced physical challenges with my little boy. Our son (our first baby) was born last April with a congenital defect in his right eye that left it sightless and malformed to such an extent that doctors thought it best to remove it last August. He has a prosthetic eye and is otherwise a healthy, happy boy, but the process of acceptance and understanding has been such a rollercoaster for me. And although I was only 2 at the time, my older brother passed away after contracting meningitis when he was 4. That has been a trial some members of my family have never been able to quite get over. You are so blessed that Charlie was able to fight through it, even though it brought a different set of trials into your life.

I know that physical and mental ailments come in all shapes, sizes, and levels of severity, but that doesn't lessen the impact these ailments have on family members who are trying to cope. And I think your family has done an unbelievable job of coping and being obvious supports for those around you. I'm sure you have been bouyed up through prayer and support from others, and my husband and I have also experienced the blessings that come when others pray and fast on your behalf. I just wanted to say how much I admire your strength and your determination to move on in life, because, really, what else can you do? You've been such an example to me and helped me come to terms with the fact that everyone has their own trials and Heavenly Father has a plan for each of us--our children are His children and He knows what will be best for them, even if it sometimes causes us some pain or heartache as parents. And we are His children and He knows what's best for us, even if we hope and pray the outcome might be different. Our little boys are so precious to Heavenly Father that He knew they could handle whatever this life threw at them, and so could we.

Your family is in my prayers constantly and although I'm sure there's a "creepy" factor to getting random emails like this, I hope you know your family is an incredible example to those of us who hear of Charlie's story through the grapevine!

emily (in Philadelphia, PA)