In Which Connor's Ticker Looks Good And I Get Some Respite

So Connor had his cardiology appointment this morning, which went well.  His heart looks about the same, which is always nice to hear, and he did well at the appointment, which the exception of the seizure he had shortly before.  As a result we now know the entire current pediatrician team of Madigan.  While they were all very nice, I sort of wish we'd skipped that part.  Connor was fine, and as it goes this seizure was a short one, but they're never particularly fun.

I got a phone call while I was at Madigan; the respite care worker who was supposed to be starting today ended up unavailable and so the home health agency wasn't going to be able to staff any hours for me until January.  I was, needless to say, pretty disappointed about that.  Luckily the staffing agency had another respite care worker who could work with him in the meantime-- and possible permanently if we get along well.

So we met with our new respite care worker, and she's very sweet.  She came and watched Connor for pretty much the whole afternoon, so I got the chance to get a lot done around the house.  We're not exactly sure what the schedule's going to be like for the next month, but we'll figure it out.  I'm so excited to have the help again!  She doesn't have quite the same flexibility in her schedule that the home health agency was going to provide and I'm not sure when we'll be seeing her again, but I'm so, SO glad that I'll finally be getting the chance to have a break!

So tomorrow the respite care worker was going to becoming all day and Eden and I were going to have a special outing together, but unfortunately that's not going to happen.  However, my parents were gracious enough to step in and offer to watch the little guy for a while so the little miss and I can still have a few hours of quality time.  I'm not entirely sure what we'll be doing yet, but I'm sure it will be fun!

~Jess

In Which Connor Is A Sickykin

I kept Connor home from school today as he wasn't feeling at all well; he dozed upright in his chair all through our morning routine and even the car ride to drop Eden off.  So I brought him back home and put him to bed, where he slept for around three hours.  Then he perked up a little bit and I brought him out into the living room, where he watched the Broadway productions of both Phantom of The Opera and Les Mis-- both highly appropriate movies for a seven year old.  Oh well; he loves the music.

With the exception of a brief break for tea with my mother after she popped by to say hello and choir practice in the evening, I spent pretty much the whole day cleaning and belting out the lyrics to the musicals.  Connor seemed to be okay with my top-volume version of "Do You Hear The People Sing?" but the cats were extremely unimpressed.  I'm pretty sure Cricket thought I was dying in some horribly agonizing fashion.

Tomorrow the little guy has a cardiology appointment; I hope he feels up to going!  I have to schedule those things quite a bit in advance, and we need a renewal of the kid's heart medication.  We also have our first respite care session tomorrow, and it would be nice if the little guy was feeling up to meeting somebody new.  I'll be sticking around the house this first time anyway as it will be a new nurse, but I would imagine things will go much more smoothly if Connor isn't feeling crabby because he's sick.

~Jess

In Which Connor Has A Check Up And I Plan Well In Advance

Connor's day went a little bit better than yesterday; he only had three seizures.  However I think his body decided he needed to be in recovery mode, because he went to bed at four in the afternoon and has been down ever since.  He had a cardiology appointment today, and he actually fell asleep in my arms in the examining room while we were waiting for the doctor to come in!  Then he fell asleep again in the car on the way home.  The little guy almost never sleeps in the car, so that's an indication that he was just plumb worn out.

Other than the impromptu nap, the cardiology appointment went really well.  Apparently Connor's heart condition looks really good; it hasn't changed since the last time they looked at it, and everything is within normal limits.  So we don't need to change his current dose of heart medication, and we won't need a cardiology appointment again for another year!  I'm glad that Connor's heart is doing so well-- that's one less thing we have to worry about.
I finally got around to photoshopping a picture of Ellen's stocking to remove her real name so I could show you a picture of what it looks like now that it's all finished!  I think it turned out pretty well.

While Connor snoozed away today I got to work planning out my next few sewing projects.  I still have a couple that I'm finishing up right now, but I like to work on designs way in advance so that I have plenty of time to figure out how they'll work logistically. 

When I'm creating a pattern I have to figure out now only how to break the design into pieces, but how to layer the pieces to create the proper effect.  It takes a lot of figuring out!  This way while I'm working on the stuff I already know how to do my brain can be busy thinking about the next project.  Since I take a ridiculous amount of time to finish up projects, I usually have quite a bit of time for thinking!



A really, really rough draft. 



So I sketched and finished out the next stocking I'll be doing, which is a polar bear sleeping under a Christmas tree.  Then I roughed in the very first draft of the stocking that I'll be doing after that, which will be a Chinese dragon holding a Christmas wreath.  This was a relatively quick sketch figuring out the layout, so there's still a lot I have to change-- like the fact that I gave the dragon horns when he's in fact supposed to have antlers.  Whoops.  That's what rough drafts are for, right?

Both of these stockings are gifts, though thankfully not for this Christmas.  The polar bear will have a lot of sequins, but it should be fairly straightforward and I don't anticipate a lot of issues.  The Chinese dragon is going to be one of those projects I end up hating-- I can already tell.  It just screams out for lots and lots of beading and sequins and-- Heaven help me-- metallic gold embroidery thread.  But I'm going to do it anyway, dang it!   

I just hope it turns out as lovely as the picture I have in my head.

~Jess

In Which Connor Goes To The Cardiologist

Connor had his four year cardiology appointment this morning.  He has an extremely rare heart defect called Left Ventricular Noncompaction Syndrome, and so he has appointments every six months to check and see how things look in there.  We also usually go in before trips where we'll be out of state for over a week, or before major medical procedures.  So we drove down to the on-post hospital to see how he's doing.

The doctor always does a cardiac ECHO on his heart to check the function.  Connor thinks the sonogram wand tickles, so he grinned and giggled through the whole thing.  Then we went upstairs and got an EKG done, which the little guy was very calm and patient through.  He's had this sort of thing done so many times that as long as you aren't rubbing alcohol pads on him or tying a rubber tourniquet somewhere (he knows what both of those mean) he won't get upset at all.

Things look great!  Connor's heart is functioning at a normal level and his doctor said he looks very stable.  Those are always great words to hear.  Unfortunately we also found out that our doctor (who is fantastic) is retiring very soon.  So by the time Connor needs to come in again, he'll have a new doctor. 

This is a problem we're starting to run into with Connor's doctors and specialists.  The doctors in the army, just like nearly everyone else in the service, are moved from post to post every few years.  Most of the time this isn't a problem because their patients are also moving from place to place.  However, because Connor has so many medical issues, we are pretty much settled since there are so few posts that have all the specialists and resources he needs.  We've been in the Pacific Northwest long enough now that Connor's doctors are moving on.

Our cardiologist wasn't really excited about the idea of us being assigned to a doctor he didn't know since Connor is such an unusual case.  So he is referring us to a civilian doctor he knows well and trusts who works at a local clinic.  This has already happened with a couple of Connor's other specialists.  Very slowly our care is transitioning to the surrounding community rather than the military. 

This poses some interesting logistical problems.  For example; the pharmacy at the military hospital dispenses Connor's medications at no cost to us.  However, the prescriptions for these medications must be written out by a doctor who works at the military hospital.  So if Connor's neurologist (who is in a civilian hospital) prescribes us a medication and I don't want to pay for it out of pocket, I have to have Connor's pediatrician (who is at the military hospital) represcribe it.  Orders for some other referrals and equipment have to be done the same way.  What this means is that while we can go to the civilian hospitals for specialists, our primary care manager must always be at the military hospital. 

So it's a little more work for me, but the continuity of care is totally worth it.  And I'm so glad Connor is doing well!

~Jess

We Got The Call!!!

I heard a terrific banging noise coming from the direction of my entryway today, and discovered Loki engaged in an epic battle. He was attempting to break his enemies "neck" by picking it up in his teeth and slamming it into the wall repeatedly. Then he'd throw it on the floor, bite it in the "neck," and kick it with his hind legs to "disembowel" it. See how diligently he defends me from his fierce and vicious foe?

This is why I will not be buying shoes from Neiman Marcus any time soon.

Crazy cat.

In other news, we heard back from Connor's cardiologist today! He was very courteous, listened carefully to all of Connor's symptoms, and said that because Connor wasn't experiencing any change in "state of mind" during the episodes-- no confusion, loss of consciousness, etc. that they probably weren't something we needed to worry about, but that he wanted us to come into the office tomorrow to get him checked out, and he wrote us in. He also gave us a way to reach him more directly if we ever came across another situation where we needed to get a hold of him. I'm relieved-- didn't think it was anything big, but it's nice to hear it from a doctor. A polite doctor.

For the folks at home, here's a picture of Connor's "happy" toes, and a picture of Connor's "Popsicle" toes-- or I should probably say "Popsicle foot," as the whole darn thing turns blue, along with his fingers and the skin around his mouth. The picture on the left was taken after he'd been exercising for a little while, and the one on the right was about five minutes later after a rest and the reemergence of the pink "happy foot." Dramatic, no?
















Anyway, this will also be the last appointment we have to get out of the way before we can finally report back to the general surgeon to make Connor's g-tube appointment. This makes me very happy. I have Rocky Road ice cream to celebrate. Yum.



~Jess