Saturday, March 22, 2008
Until next time, this is Roxey, signing off......(by the way, this is an awful lot of pressure posting on this blog!)
Britty only gathered green eggs. He did get a pink one for his mom and blue one for daddy.
Friday, March 21, 2008
Earlier today we went to the "sound booth" to test if the hearing aids turned up to amplify 100 decibels would have any impact. As you can see he slept right through. Rob was in the chamber with him and had ear plug in and said that some of the trials hurt his ears. This information will be used when the audiologist discusses his case in the cochlear implant conference
Thursday, March 20, 2008
This picture from this morning was too good to leave out. And yes, Rob does change diapers.
Applying pressure to his belly
Speech therapy tried oral stimulation with a sucker to see how he would respond. He sucked his lip a couple times but didn't like the sucker in his mouth.
Wednesday, March 19, 2008
What a truly genuine and personable man Coach Mendenhall is, so compassionate as he got to know us and Charlie. He had true empathy and concern for our situation, he cared. While we talked I had so many football questions that were going through my head that normally I would be dying to ask him but you could tell that his visit today wasn’t about opponents or depth charts it was about being there for a sick little boy and his family when they needed it. He made a comment about how sometimes we get caught up in wins and losses but in reality that stuff is secondary to things like this, things that make a real impact. He said that is what is truly rewarding. The high point of the visit for me was when he was handing out some Cougar wristbands to those of us in the room and when he got to me he took the one off his wrist and said that “this one made it through all of last season and hopefully it will help you make it through this.” I lost it a little, not gonna lie. It was great and Nixon and Rich are total studs for joining him on the trip and I think they might have even made a little bit of a Cougar fan out of my Ute wife.
I found out who arranged this and they have asked to remain nameless but in talking to them afterward they said that all they did was start the ball rolling and “The rest was all Bronco.” Nevertheless, thank you - thank you - thank you!!! And Coach, David and Andrew thank you, this means so much to us and maybe now Angel won’t get so mad at me for telling Britton that “ute” is a bad word and that “Rise and Shout” is the best song ever. What a day! The Coach was here!
Britton with no idea how big this is!
Charlie's new wristband and gear!
Coach sett'in up the boys w/ wristbands.
Cheryl Dee on Cloud 9!
The swallow study has been postponed until further notice due to his feeding issues. The speech therapist explained that if your gut doesn’t feel good the natural response is to not allow anything in your mouth. She said it is very important to make everything that surrounds eating a very positive experience and that we should not force anything. When he is opening his mouth by himself and seems to be comfortable with having food in his belly we will try again. Note to self: No more prying his mouth open to shove a sugar covered binky in his mouth. The doctor has changed his formula to one that is partially digested so he has less gas and hopefully will feel better. I think he is a little bit happier with this new food but not completely. If this doesn’t work the next step is to add another medication to help his system empty quicker. Other possible reasons to his irritation are gastric reflux, having his arm and leg braces on, just becoming more alert and not knowing how to express himself.
He wasn't very happy last evening - nothing seemed to help from 5:30 p.m. -1:00 a.m. (except for an hour nap). He didn't like the swing, rocking by g-ma, repositioning, diaper changes, etc. About 12:30, nurse Amy suggested a bath. He tolerated it and did seem to like the warm water on his body. After drying, lotioning, wrapping in a warm blanket, a fresh diaper, and a few meds, he fell asleep and had a wonderful sleep until about 5:30 a.m. (anyway that was when I first heard him.) He slept through meds, vitals and putting on his booties at 4:00 a.m. He has been fussy for awhile this a.m. but is resting now.
Angel can tell you more about his schedule for today and plans for the next few days when she gets here. I hope she had a nice b-day yesterday. She spent time will Britt, Max and Ann while G-ma Kathi was here.
I love this precious little boy. Sometimes it is hard to watch him when he is aggitated and there's nothing a g-ma can do to comfort him. Thank goodness for meds and medical personnel who can offer some relief to to this wonderful little guy.
My prayers are for a good day = a few improvements, some good naps and encouraging news.
Tuesday, March 18, 2008
Monday, March 17, 2008
PS- Why do haircuts always make kids look older?
I had to take this picture to give a visual on how huge the syringe is that the nurses used to pull out air.
TODAY: They will try to do the swallow test on Charlie at noon today but have scheduled some PT first to see if they can keep him awake. Hoping for the luck of the Irish on that. Grandma Kathi
Sunday, March 16, 2008
The second blessing in Rob’s world is that when I got here this morning I was going through some to the cupboards in Char’s room and found some Peeps that I bought right after we came to Neuro-Trauma, and of course I opened them over a month ago as to let them age in true Marion L.E. Nordfors fashion, and they were in perfect condition. So for breakfast today it was Diet Coke and six boxes of Peeps that were just stiff enough that they didn’t break when you bit them. A little taste of heaven. No I’m not sick, I’m like a Peep alcoholic, I have a 32 year tolerance and an iron gut. Ramon the Tech and I are concocting a way to get a peep in Char’s feeding tube, I think it’s only fair and Gammy would want it that way.