Physicals for the boys

Boys went to Mousetrap to see Dr. Queyquep for their yearly physicals.  We always get them in right before camp. Camp requires that we get certain info filled out by the boys' docs, have their immunizations up to date and documented, etc. 

We had Nurse Julie and Nurse Nancy H here (Nancy has started doing 5 hours on Tuesdays with Colin during the day.  She usually does Casey).  We got out of the house on time, yay!  Made it to our 10:00 appointments.  It's so nice having the boys' pediatrician literally 4 minutes from the house.

Casey went first.  No real concerns.  Talked about how his hands feet get cold/mottled.  She just thinks it's the nature of the beast (SMA) and an autonomic response because the nerves aren't sending signals to his extremities to 'move' so the area becomes stagnant.  These are my words--not quite sure how she put it.  Nothing new to us, but just kind of concerning because it's never been this prevalent before.  We've also noticed that when we put him in the shower, his hand become bright red.  I guess that's the blood returning to his extremities again. 

With Colin it's a little different.  He does get the cold hands/feet sometimes but he seems to be more puffy/edemic in his hands lately.  He's lost some movement and range in his hands recently, especially in his pointer fingers.  We may try some compression socks (ha ha, Colin hates socks so I don't have much faith that he will wear them) and hand 'socks'.  I *think* we may be able to talk him into wearing them.  We'll see.  We do lots of range with him and we do some massage,but we'll have to try to do better, and try to keep his arms up, and not hanging down, as much as possible.

Casey's ears looked okay.  Some debris but no infection.  Colin was his waxy self, but fine. 

Casey does Petco

Casey went to Petco today.  He is working on his VTAAP (Vermont Alternate Assessment Portfolio--Casey takes this instead of the standard state testing.)   He is assessed (cold), taught, and then re-assessed.  Anyway, he's working on homeostasis and had to go to Petco to check on temperatures of different reptile habitats.  He got a little distracted because this is what I got from Nurse Julie:

Thankfully, Julie did not buy the puppy for Casey.  You never know with her, ha ha.

He did a good job and got done what he needed to do and then had some time to wander around Staples, too.

GI appointments for the boys

Funny thing.  The boys haven't seen GI in years.  We were overdue so finally decided just to make the darn appointments and go.  Plus the boys had been having some on and off constipation/loose stools but of course when the appointment came, the boys had been fine for a while. 

And, the funnier thing is that both boys came out of the visit with prescriptions!!!  Casey had yeast around his g-tube.  I had been cutting back on his new probiotic, Dr. Mercola Complete, thinking it might be making his stools loose.  Well, it didn't clear up the problem, plus he grew some yeast since I had cut back on his probiotics.  So, he's back on a whole capsule instead of the half.  He got a script for nystatin cream--2 weeks of applying a couple of times a day. 

Colin had the tiniest bit of granulation tissue growing on the inside of his g-tube, near the edge.  So he got a script for Kenalog 0.1% ointment.  Also for two weeks.

Other than that, we just caught Dr. Damico up on how we've been doing the last several years.  It's been so long that we've seen him that there is no electronic record of them seeing him (can't remember how long Fletcher Allen has had electronic records, but it's been years). 

Pamidronate infusions today

We're here.  Supposed to be here at 8:30 but we were a little late. At least is wasn't snowing or freezing rain as it was earlier.  Checked in.  Headed to Comfort Zone for IV start.  Colin went first.  Got it second try.  I was about to blow but the got it.  No tears.  Hardly any fuss.  Don't know what his heart rate was because I forgot to turn his monitor on.  They got Casey on second try, too.  No drama. He was laughing at the nurses and talking on his DynaVox while they did their thing.

Headed up to the Infusion Bay.  IV bolus.  Tylenol given.  Wait for labs to come back.  Started Pamidronate.  Colin picked Frozen to watch, which was odd because he has not wanted to see it at the movies or on DVD.  He was totally absorbed while watching it but says he didn't like it.  After that the nurse asked if he wanted another movie or TV.  I said probably TV because it wouldn't be too much longer...  The nurse looked at me like I was nuts.  She said it was running over 4 hours.  We'd always run it over 2.  So they looked back and saw we had done that before.  Talked with doc.  Revised the rate, but somehow we still had to do it longer because of concentration...so we'll be her longer than normal.  Phooey.

Casey was pretty ornery at first.  Jenny came from Child Life with the Jim Carey grinch movie that Casey had told her thT he NEEDED to watch next time he was here.  She had looked over the entire hospital last time.  I guess she picked up a VHS copy from somewhere.  He totally multi tasked, DynaVox, iPod,--he even asked for wii and Jenny set it up for him so he could see it from where he was laying and played it with him through the glass do his room into the common area.  A little spoiled, perhaps?  Right now he's listening to Water For Elephants on his e-reader.

Much of the time there's no one else in the bay.  There are only 3 rooms.  This afternoon a little kid came in for some treatment-I'm assuming some sort of cancer/chemo treatment.  Breaking my heart with the wailing and crying.  Sigh.

This is a little stilted because I'm typing on the iPad.  For some reason I couldn't get my laptop on line.

Ouch.  I got a crown today.  Broke my tooth the end of February, during break.  Of course Dr. Molinari's office was closed for vacation.  Got in a week or so later and sure enough, broken tooth, but not so bad that the nerve was exposed.  Anyway, got my temporary crown got done yesterday.  I was there for an hour and 45 minutes!!  The worst part was that darn needle.  After the Pina Colada topical, he used a huge needle with the anesthetic in my gum and slowly pushed it over at least a whole minute.  My eyes watered but it really didn't hurt too much.  The second worst part was when he used the slow moving drill and that kind of knocked my jaw around a bit. 
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I had a crown done a while back and my face got totally bruised.  I'm waiting to see if that happens this time. 

Julia actually made it here for 9:30 to help Gene out with Colin.  Miracles do happen! 

Casey had an outing today.  They went to the mall.  Fail.  Casey was totally belligerent and yelled the whole time.  I actually don't blame him.  Last several outings have been to the mall and he hasn't done a whole lot there.  But he had his power chair so at least he could drive.  Since his chair has been broken he hasn't been able to drive so the mall was pretty pointless. 

AC came over.  We started playing Indiana Jone's Lego wii.  It's not for the wii u so it took a while to get used to the controls again, but Colin didn't mind.  We actually did pretty well.