Sunday, February 24, 2008
A Day of Rest
Things are smooth. Charlie had one storm early last night but the fell asleep about 0130 and slept until 0630. Rob was pleased. He Stormed again from 1030 to 1230 then a little clonadine cocktail wiped him out. Rob was pleased. In the last few days he has started sweating during storms way worse than before so I asked Dr. Fran what causes this. He said it's a autonomic sweat that is common in kids w/ uncooperative brain stems and should improve. I hate uncooperative autonomic nervous systems. Right now Charlie is out like a light and we're having a great time playing w/ Britton. Rob is pleased. Surgery for tomorrow a.m. is still a go however Rob won't be here, he'll be enroute to Las Vegas for a week long conference and he will not be pleased. The pictures of the house, minus the futile graffiti, look fantastic. In 3 weeks that house got way cooler than we deserve. Thank you, Thank you, Thank you!
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16 comments:
Ang,
if anybody deserves it it is you. 1st of all for putting up with Rob this long and second because in my eyes you are a saint and have earned your way straight to the celestrial kingdom.
Your example of faith and COURAGE continue to amaze me and those whom you share your life with.(all those who read this blog at least 50 times a day!!)
Thank you for your example. We love you and will pray extra hard for you and Rob and especially Charlie tomorrow.
Deirdre
Well you guys are getting a lot you don't "deserve" so consider the house a slight balancing point!!!
was that rob in the 3rd person? meghan doesn't love the 3rd person. i'm sorry he's storming again. i blame myself for speaking too soon (saying i was glad he was over the storms). i am anxious for the surgery tomorrow, & will be pleased when it's over. i am sorry you won't be around rob. luckily, you can stay up tp date on the blog ;)
i am so grateful you guys have been willing to share with us this experience you are going through - your highs, low's, vulnerability, and joy. every day i talk to someone new who is watching charlie and who has been touched by you all. you're awesome. have a good, restful, family day. love you guys.
Good pick up meg. That was Rob in 3rd person. I'm not sure why.
(Angel)
So you mentioned that Char is going in for neurosurgery tomorrow but what exactly are they doing? Or is he getting the cochlear implants?
Hopefully today will be a restful day so Charlie will be good to go tomorrow!
Tomorrow Charlie is having his drain internalized (shunt put in). The tube that is currently draining fluid from his brain to a bag outside will be put inside to drain into his stomach cavity. This will prevent any further build up of pressure. The EVD (drain that he currently has) is just temporary and the shunt is permanent.
The cochlear implants are still a little bit down the road. First, the Ear surgeon (I'm not sure of their official title) needs to see Charlie. Second, any further hearing tests need to be performed. Third, he may need to try hearing aids. Then if all is in place we would go through with the implants. We should get more info on Monday after meeting with Dr. Park
Rob, simmer down about Angel's school spirit. She will sleep soundly on top of the big red U and you can conveniently forget it is there. Quit pouting and stare at the north east corner of your driveway. All is fair in love and school rivalry. The fact that I care NOT ONE BIT about either school is something you continue to make me proud of! The brainwashing you are responsible for in my house however, should keep you up at night.
Angel...you will be happy to know that your cousin suggested and there was some talk of inlaying a red U in the carpet under your bed but 3.00 was in the budget and red carpet wasn't! Let me know if there is anything you need done...I feel I might have a knack with a spray can!
I am glad that super Cooper is finally sleeping a bit. Give him a love from me!
You asked why I don't always post comments, so here's one: thinking of you guys...... love and prayers.
Susan, seriously. Have you ever given anyone "a love?" That would require touching someone wouldn't it? I guess that is why you have Angel do it for you. Okay. I get it now.
I went to the temple last night and put Charlie's name on the prayer roll. I also pray for you guys every single day and think about you every moment.
Our prayers are with you and your awesome family. Thank you for letting us all share in your journey even on the not so great days. You guys are so strong and continue to amaze me in all that you do. Have a peaceful day and night. And Rob continue to take your wife out on dates because you both need it. I hope your house continues with great progress and that you will post if you need any help with anything else.
Angel, your house is way cool because of all the work you guys have put into for the last year. Now, it's just topped off with love from some very talented folks.
I just talked to Papa and he's up for the 5K at Liberty Park, at least 1 lap. That will be cool.
Love ya, My prayers are with you tomorrow.
Jolene
where did the sitemeter go?
Good Luck on the shunt toorrow. Our prayers are still with you.
Love Jill B
Happy 4 weeker Charlie!
Good Luck in the am with sugery. We Love you
Kippi & Richard and Family
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