Not a whole lot accomplished today.
BUT, I did call Dr. Lahiri's office, the pulmonologist who will be doing Casey's bronchoscopy on Monday, in hopes that he'd call me back to chat with me about the procedure.  Well, I was writing down my questions when I called and the person said let me see if he's out of clinic.  A minute later he was on the phone!  I love that our docs are so accessible!   We had a nice chat but I didn't ask him all that I wanted to because I hadn't written down all my questions yet, ha ha.  Oh well, I'm feeling better about the whole thing.  The two worst things will be getting there at an unheard of hour--not sure when exactly, but Casey is the first procedure and they usually start at 7:25, yikes!  Secondly, we have to get there early and head to the Comfort Zone to get Casey's IV.  Other than that, Dr. Lahiri thinks it will be quick--like 10 minutes.  He doesn't anticipate any complications and he's not even sure if he needs to do the wash procedure.  That would show if he's had any aspirations (not a concern), take a sample of cells (probably not necessary) and take a culture to see if anything is lingering in his lungs.  Mostly we just want to see if there is any inflammation or anything unusual going on which we really don't anticipate, either.  We'll also try to upsize his trach to a Shiley 6.0 long which is the next size up.  I'm hoping it will help alleviate his plugging and also go a bit longer down which will hopefully ventilate him a little better and make us not so worried that his trach is going to come out.  He's had this size for as long as I can remember and he's grown a lot.  Tomorrow I speak with anesthesia.  Dr. Lahiri knows not to fast SMA kids too long so he's in my corner.  He's going to try to talk with them before they call me but he said to tell them to call him directly if there is any problem.  I have no problem of giving him just formula, water and juice with no baby foods or supplements during the night and stopping about 4 hours before surgery and then giving him Pedialyte for a while and stopping a couple of hours before surgery.  Anyway, I know they won't give me a problem of restarting him right afterwards.   Last time he had tubes, and his 'nether region' operated on they let us start up once we felt he was feeling good and not queasy.  Boy, this is a long paragraph, sorry!!!

Colin wasn't too cooperative in school today.  It started before Mel came to do Music so it wasn't that.  Not sure but I think he was just finding it fun to be ornery.  He didn't earn a fun break so he did nothing for half an hour instead of watching wii walkthroughs like he usually gets to. 





Casey has a pretty good day.  But, he wasn't into his Creative Writing class.  He had to leave for being too noisy.  They decided he would write a letter saying why he didn't like the class.  Paula tried to give him some ideas but Casey had his own:

Mrs. Short,
I am upset about class.
I want to go library.
Casey

He really liked the Read, Read, Read class because it was a relaxed atmosphere and was in the library which is one of his favorite places in school.  Of course we all told him we understood but sometimes it's good to try new things and see how it goes.  So we will persevere and I hope he comes to enjoy it. 

Played Skylander's SwapForce for about an hour.  We had a tough time defeating one of the bosses...I forget his name but we killed a bunch of our guys before we defeated him, phew!

Casey hasn't been complaining about not being able to do his Google maps.  Gene was going to call this afternoon but didn't.  I hope Paula can figure it out tomorrow.

Gene went to Costco for vinegar and dog food.  It's almost 8 PM and he's not back yet--it's time for bed!

Back at it!

I've been wanting to get back to writing here every day.  Not sure what stops me.  I always think that I want to go back and write about some special days/events before I start the day-to-day blogging and I never do.  So I will start here.  I was looking for some old pictures of Colin in his stander and looked back at old journal entries from 2006, 2007, etc. and I had many memories sparked by reading them and it's made me want to document more diligently again.  I hope I can keep it up!

Today is Aunt Chris' birthday.  I made a Devil's Food cake from a mix.  Made homemade frosting with Baker's chocolate, powdered sugar, vanilla, milk, Madagascarian vanilla and two ounces of cream cheese to add a little zing.  Colin tried the frosting and found it to be pretty yummy.  So I had to make her special birthday meatloaf.  We also had a can of peas (her favorite, although they weren't the baby LeSueur ones), noodles with broccoli and Italian bread. It all turned out pretty well :)

Anyway, I got Colin ready for school and did all the morning stuff and Lauren came to do a shift with him from 10-6.  He was happy to see her. He did stander and was up at 42 degrees for about half an hour.  That extra 2 degrees is a good thing as he's not gone up that far for a while.

I managed a nap :)   Can't believe how hard I slept.  But, first I read some of Emma (Peggy and I are making an effort to read some classics).  I'm glad that I didn't live back in the early 1800s.  Man, all she cares about is who is 'good enough' to marry who and who shouldn't associate with who, etc.  Boring and shallow.

Maria (Casey's SLP/case manager) called today and wanted to know what I thought about him taking Creative Writing instead of Read, Read, Read again.  The more we talked about it, the better it seemed.  Kathy Montague is the teacher and he has her for English 11 as well, so they'll already be meeting, and it will be continuity for him, etc.  I think it could be a good thing.  He seems fine with the idea.

Casey's DynaVox is still doing something weird.  Gene thought he and the rep had fixed it Monday, but it's still not sending words to the Internet like it's supposed to.  I'm kind of confused as to what's going on so we'll see what Paula thinks at school and then I can describe it to DynaVox later today and get it taken care of.  Casey hasn't been able to do his Google Maps for a couple of days and it's driving him batty!

Casey had a pretty good day at school.  He stayed in English a bit longer than yesterday so maybe he'll ease into it okay.

Lauren played some WiiU Rayman's Legends for a while.  It's one of those games that her generation is good at like Mario...I couldn't get past the first little part as I kept dying and would use up all my lives and have to go back, sigh.

Then Aunt Chris played the Lego City Undercover.  It really is a cool game and I'd love to play it myself but it's one that she's pretty good at so I'll let her be the player.  Of course I have to keep my ear out as to what they're doing and have to help out in certain parts so I guess I get to play it and enjoy it, too.

After dinner it was time for cake and presents.  Poor AC didn't get many exiting presents but I used up all my good ideas at Christmas time.   I ordered flowers for her at Centerpiece from Mom and Dad and Gene picked them up.

Then it was bedtime.  We went in about 15 minutes earlier than normal since Casey was so tired.  The boys and I started a new book called Ungifted by Gordon Korman.  I think it might be a good one.  The boys were sad when we finished the Magic Tree House last night.  Found out there's one more out that we'll buy.  Casey says we can use his Amazon card.  I'm glad that both boys like the Magic Tree House books but one of these days they'll have to get too old for them.  They really are already but we've been reading them so long together that it's like "our thing."

Back in the stander again

We're hoping to get Colin back on a regular standing regimen again.  It's tough when he has to get his academics in as well as stretching and other PT activities, oh my!