Happy December....It's been an exhausting month here..On the brighter side, Casey grew two inches..I can't believe how much he's grown. I just hemmed all his new school clothes only to unhem them before he could ever wear most of them. With EB kids, you have to celebrate every inch and every pound. We're still at 35 pounds though..On the other hand, We went through a rough time with Casey for two weeks. Thanksgiving morning he woke up gagging and coughing...Another blister in his throat. I can't put into words what it's like to wake up from a sound sleep to watch you child gagging to break a blister that has blocked off his upper airway..and then begin coughing up blood.. If we're LUCKY he coughs up the skin right away..not so lucky scenario is that it hangs in there gagging him until he finally gets it out or it comes up far enough for me to grab it and pull it free. That's right guys..it hangs out of his mouth and I yank it free. Those of you with EB kids can sympathize with me...EB is not for the weak hearted. .....Then over the next few days we listen to him stridor and struggle to breathe as his upper airway begins to swell. We go back on nebulizers and steroids..This guys is the reason we have not removed his trach. The episodes continue and they are impossible to manage without it. And why on Thanksgiving?? At church that week a friend said to me..."you know..god's will will never take you where his grace cannot protect you". I just smiled. I sat that day and really didn't hear a word of the sermon. I am very disconnected from accepting the word and I'm not sure I have TRUE faith any longer. I go to church and I just go through the motions..Alot of times I write a grocery list or clean out my purse while the pastor speaks. And it's not the church. It's a great church and great services.... Some people reading this will understand why I feel the way I do and others won't. Some will pity me and some will try to 'fix' me. Your help won't help..It's something I have to work out on my own... Anyway, we managed to have a pretty decent day believe it or not. Casey is one amazing little boy. I learn many of the most important life lessons from my son. He is so beautiful inside and out. Luckily now he is back in school and feeling well because we have a very busy December agenda and he needs to keep up!! :) On our list...See Santa and his reindeers (check), Pick out a tree and decorate (check), go to the two local parades (check) take pictures for christmas (check) make special ornaments with the family and kids (check) ..The only things left on our list is for the kids to shop for each other and their families ..This is the cutest part of christmas for me..when they break out their banks and shop for each other. Casey took out his piggy yesterday to get money to get his brother a tech deck..and Zachary took out his bank to get Casey a tech deck...I just love my boys. And this year my family beware...you get what the kids pick out this year ... :) I am not going to buy FOR them...And I bet you get the most precious things ...I still have an acorn and one silver earring in a pink ring box my neice gave me years ago...she's 21 and it's still special to me...
Becky is a cutie too. She is such a girl. She runs like a girl, smiles like a girl and loves all the girly things...Shoes, dresses and jewelry. I encourage none of it as I'm a tomboy at heart...it's just like instinct to her.. But what is sooo cool about Becky is that she is dressed in her fancy shoes and bracelets one minute and rolling in dirt the next. She is everything I've ever wished for in a daughter.
We also got to go to a great winter concert Zachary was in...He plays trombone in the band. This year he remembered to wear his suit jacket and didn't fight to take the tie off. Last year I dropped him off with a suit jacket and tie and when he walked on stage, his jacket was off, tie was not on and his shirt was hanging out. I almost passed out when I saw him. This year he's matured alot and he looked soooooooo handsome. (ok..maybe it wasn't EXACTLY maturing ..maybe it was the threats of violence I bestowed upon him when I dropped him off about removing the jacket this year? :)
Well, Happy December all...Take time to enjoy all the magic of the season.
