So Connor has his preliminary appointment for g-tube placement and Nissan surgery on Monday. This is not his surgery appointment. That would be entirely too quick and easy. We'll get to that... eventually. Here's what we've done so far:
First, I talked with Connor's speech therapist, and laid out my case for why I thought a g-tube would be appropriate for Connor. She agreed with me and wrote a note to Connor's pediatrician.
Next, I had an appointment with Connor's pediatrician, in which I laid out my case for why I thought a g-tube would probably be appropriate. He agreed with me, but wanted an appointment with our nutritionist before he would consent to the referral.
Then, we had an appointment with Connor's nutritionist, in which I laid out my case for why I thought a g-tube would be appropriate again. She agreed with me and wrote out a referral.
Then, we had an appointment with Connor's GI doc, where I laid out my case for why I thought a g-tube would be appropriate for Connor yet again. The GI doc agreed with me, thought a Nissan would also be appropriate, and agreed that Children's would be the best place to do the surgery. He referred me there, which brings us up to Monday.
On Monday, we'll have an initial appointment with Connor's new GI doc, where I will lay out my case for a g-tube for the fifth time. He will probably want to do a few tests to determine whether or not he thinks a Nissan surgery is appropriate, which will be another couple of appointments. THEN maybe we'll get to schedule the actual surgery date.
Blah.
Overall it was an interesting week. Connor has been really enjoying working on standing-- we've done some standing time every day. He gets really, really excited about being up on his feet, and he'll stand until his legs start shaking. You have to force him to take breaks.
Monday I completely forgot about PT and ST until Laura called me. We rushed down there 20 minutes late and weren't able to see Julie, but Laura managed to fit us in. My brain malfunctioned or something. I don't know what happened. At any rate, Connor got to stand on a swing, which was apparently the most exciting thing ever to happen in the history of the universe.
Tuesday we had the big Let's Talk About Deployment meeting, in which we got Jer's tentative schedule for deployment and all received free DVDs so we could discuss deployment with our kids. I watched this DVD Wednesday morning, which was a bad idea as Wednesday was also the start of That Time of The Month and the DVD involved Elmo's Daddy having to go away for a long time and all the Sesame Street characters singing about it and crying. This is not a good video to watch at a time when I tear up at food labels with cute babies on them, people.
Wednesday Barbara, Connor's Special Education teacher, came over and Connor played in the corn meal bin-- an activity he generally reacts to like I'm attempting to get him to play in broken glass. Connor is convinced that touching things, especially things with gritty, slimy, or sticky textures, could prove to be lethal, and is at any rate an extremely hazardous activity. We make him do it anyway, and I'm sure he probably thinks we're mean and horrible, but tough cookies. You know he's been having a great time when I tell him that it's time for Barbara to leave and he starts laughing and clapping his hands. Poor Barbara.
Thursday we saw Patti, Connor's Family Conversations teacher in the morning, and halfway through the lesson Gloria stopped by with baby E so I could do a little babysitting for her. Baby E is seriously cute-- she's eight weeks old and has these little rolls of fat all over her body-- and Connor was pretty okay with her until I picked her up. Then we had issues. What was HIS mommy doing holding that STRANGER BABY? Obviously E was muscling in on his territory. After some negotiations it was finally decided that I could hold E as long as Connor got a constant stream of praise about how great he was doing and what a big boy he was. I had one tense moment when Connor was on the potty, E started crying and the phone rang, but for the most part things went well. The best part was when Connor went down for a nap, E fell asleep on my shoulder, and I got to sit, read a book, drink some tea, and snuggle the baby. Ah, bliss!
Katie, Connor's Deaf Mentor, showed up at about the same time Gloria did to pick up the little one, and we had a good session. Anna stopped by and picked up the next book in the Twilight series by Stephanie Meyer. Then Kami, a vision therapist, came over and did an evaluation on Connor. She wants to send him to a developmental optometrist. I'm not convinced we need to add yet another specialist to Connor's list (which currently stands at 10 doctors and 4 therapists) and I'm not convinced that a developmental optometrist would be able to do anything for Connor since his issues are nerve-related and so I don't think any amount of muscular exercises are going to do a thing for him, but we'll see. At any rate, I don't think that appointment is exactly at the top of my priority list right now.
Friday morning Connor had his Family Conversations play group, and I got to take a much needed break to hang out with all the other parents of the Deaf and HoH kids in the program while the therapists work with the children. This week Ann shared a very moving and private story I'm not going to repeat here about her son, which, since it's That Time of The Month, not only made me tear up, but when it got to be my time to share about Connor, I totally lost it and started bawling so hard I pretty sure I was nearly impossible to understand. I'm all about sharing our feelings and all of that, but I really wish we'd picked a week to do it when my hormones were not totally ruling my mind. Oh well. At any rate, I probably shared way more information about Connor and his medical conditions than anyone was comfortable with, and then afterwards everybody had to start taking me aside and giving me little pep talks about what a strong person I am and how lucky Connor is to have me while patting me on the back, which is what usually happens in situations like these. I know people mean well, but I've never been one to enjoy compliments, and I really, really hate those speeches, which is why I usually don't share that sort of stuff about Connor in the first place. Hopefully the two weeks of Thanksgiving break will give people a chance to sort of forget about all of the awkwardness and start treating me like one of the girls again instead of some sort of martyr or saint. Blech.
Gloria, Anna and I hit the movie theaters on Friday night to watch Twilight. I can understand why they thought it would be a good idea to make this movie, but here's the deal. What do you get when you take a couple of extremely introverted characters and a plot that relies heavily on internal dialogue and throw the whole thing up on the big screen? You get 122 minutes of awkward silence, that's what you get. The movie was horrible. We laughed in all the wrong places. Then we went out for ice cream and listened to the Cold Stone Creamery girls ring a cow bell and sing a little song for every group of adolescent males that came into the store. Teenage mating rituals are bizarre to behold.
Anna and I headed up to Pike Place Market this morning for some Christmas shopping, and for a Saturday, it was dead. The lady behind the counter at Market Spice said that their sales are down by 30%. It was sort of a shocker-- I forget we're in a recession because we aren't really worried about Jer's job going anywhere and we haven't had to change the way we live at all. It was kind of a sobering reminder that things aren't going so well for a lot of folks.
We have a busy week coming up. Connor has that GI appointment on Monday. On Tuesday, we see Connor's nutritionist and will be finished with that just in time to hit Jeremy's Spur Ride ceremony http://en.wikipedia.org/wiki/Order_of_the_Spur. On Wednesday, Connor gets his FM system. (Here's a link explaining FM systems for those of you not familiar with them: http://www.babyhearing.org/HearingAmplification/AidChoices/FMSystem.asp) Thursday is Thanksgiving. Hopefully we'll be able to use the weekend to sort of kick back and relax after all of the craziness.
~Jess
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5 years ago
4 comments:
Ok, so apparently I'm no good at this whole posting comments thing. Anyway.
I can't believe the amount of rigmarole you have to go through to get a procedure done, I understand that they need to have doctors approve this sort of thing, but it seems silly you have to talk to ALL of them and get them all to agree.
You know, if anyone ever starts thinking you're too saintly or anything, I could always dig out some middle school/high school stories. >:D bwa ha ha...
Man, I read the Twilight book and thought it was awful. Like, really, really terrible. Are the sequels any better?
I hope ya'll do get to have a good Thanksgiving and get to relax together some too. We're having Jason's family in town, which should be fun.
Yeah, it's silly, but that's kind of the way it goes. Connor has so dang many doctors on his team that it gets crazy trying to coordinate everything. That's why he's currently my full time job. My guess is before they do the surgery they'll also want a consult from cardio to make sure his heart is up for it, and probably another meeting with anesthesiology so we can talk about any special issues Connor might have on the operating table, and THEN maybe we'll get around to doing the actual surgery. Maybe. Good thing it's not an emergency.
Don't you dare dig out old stories. I know where you live. Well, sort of, anyway. I could call your mom and get directions.
I think people have this idea that it takes somebody extraordinary to raise a special needs child, and I just don't think that's true. I know people mean well, but because we get that kind of thing ALL THE TIME it can get kind of tiresome. I mean, people in the grocery store will see me signing to Connor and walk up to tell us how great we are. It's sort of like being a celebrity without the name recognition or any of the money.
I actually enjoyed the Twilight series. If you didn't like the first book, you'll hate the rest of it. I have to be in the right mood to read it-- it's kind of like a cross between Anne Rice and that lady who wrote Confessions of a Shopaholic. But then, you liked the Eragon series, so you have questionable tastes anyway.
So where's your blog? Huh? Huh huh huh?
Dude, I read ONE book of the Eragon series and thought it was mediocre. I haven't even re-read it ever, which should tell you something. :P Twilight lost me when the vampires started "sparkling" in the sunlight. That was just dumb.
It's gotta be weird to have random people coming up to you and saying things like that though. However, you shouldn't sell yourself short either. But I would also be uncomfortable with a constant stream of comments/compliments of that nature.
You know, blog tag is way more productive than phone tag. : ) Not that I don't want to talk to you or anything... really... Not that I have a blog for you to tag back on. What would I write about? My dog? My war on the terrible landscaping of our house? (we're winning the war on the ugly inside the house, I must say)
But seriously, I hope stuff goes smoothly for getting Connor's surgery done. I shudder to think of the hassle if you did need to take care of something in a timely fashion...
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