Cast #5

Well, another week, another cast, and (I think) another tooth.  Isn't life grand when you're 11 and 1/2 months old?  Actually, E thinks it is a pretty cool age.  He's enjoying pulling himself up in the crib and doing laps around the inside when he's supposed to be sleeping, and I know I've said it before, but that cast really does not slow him down at all.  He's figured out how to transition from his tummy to sitting and vice versa in spite of the cast, and aside from the putting it on/taking it off part, he ignores it.  It is so cool to watch him explore what he can do!
So we went back to Chapel Hill for a second round of x-rays and (supposedly) to schedule the surgery.  Unfortunately it appears as if a computer glitch has claimed a lot of the x-rays taken that week.  I love computers, but not so much today.  Another week to wait before we find out more about E's surgery.  On the bright side, from what I'm reading about the surgery we're almost definitely looking at an Achilles tendon lengthening and a pin through the navicular and the talus to hold that joint together.  The iffey thing is whether he'll need another release on the top of his foot, and another week in the cast may help us stretch enough to avoid that third part.  Just speculation on my part, but I'm trying to keep the silver-lining thing in the front of my head.  God leads us through these things, and I'm trusting in Him that it's going to be for the best.

Busy week - 3rd and 4th casts

The third casting was last week, and I didn't get to post because E and I left right after his appointment to go see my grandmother in the hospital.  We got there a little late (hate traffic!) but it was a neat appointment because he had his fluro x-ray.  No idea if I spelled that right, but we could see the bones in his foot are starting to line up nicely.  Yay it's working!  On the downside, E's leg (especially the front of his ankle) is super red and irritated-looking.  I'm sure it's just the skin reacting to being covered by the cast for so long, but he was unhappy even getting the cast removed this time - probably due to the vibration on his sensitive skin.  Poor guy cried through both that and the re-casting.  My hubby picked the cast color this time, as I previously failed to realize that the purple cast that I thought was cool looking was unacceptable because purple is the color of the Baltimore Ravens, and being a Pittsburgh Steeler household that is not good.  So, we left with E in a camo cast, which did earn multiple compliments during our trip to Georgia to see Granny.  Aside from a bout of pinkeye and another upper tooth cutting, this cast was pretty uneventful.

We actually arrived early for today's casting, and Dr. Henderson was very happy with how E's foot is looking.  Again, we cried during the cast removal.  And then we cried before Dr. H even had a chance to touch his foot.  He knows what's coming, and it breaks my heart that he's so unhappy.  He's normally such a sunny kid!  I just don't know how to help him through this.  He weaned himself off of the bottle last month, and a sippy cup isn't much comfort.  We had the lamb paci (from Pacimals - love that thing!), but he worked himself into such a state that his little head was soaked in sweat by the time we were done.  On the bright side, it sounds like we're getting another x-ray next week and Dr. H is expecting to schedule our surgery.  Hubby and I are not in agreement about the time frames we heard last time when we asked about the plan during and after surgery.  Dr. H said that they like to keep the kids overnight after the procedure to make sure everything's ok, and I think they'll cast him into a neutral position when they're done for 8-12 weeks.  My husband heard 10-12, but either way we probably won't be out of the cast until after Thanksgiving.  Maybe Christmas, but that's just me thinking and hoping.

Second cast

So we survived the beach with a 10.5 month-old in a cast, including the necessary plane ride to and from to reach the beach.  We were celebrating my grandparents' 90th birthdays (within about 3 weeks of each other), and everyone had a blast.  Unfortunately, as is not uncommon with visits to extended family that involve multiple (8 total) munchkins, E came home with a fever that, while controllable with ibuprofen, did not want to go away.  That was Monday, and Monday night he woke up at around 3 am crying - I re-dosed him with the ibuprofen because he felt really warm, and he fell back to sleep, but I didn't really.

Tuesday we made our second trip up to UNC.  We'd been reading up on the diagnosis of oblique talus, and there really wasn't a whole lot to see - most of the research we could find was on the more involved vertical talus.  Any mention of oblique talus was accompanied by a statement that resembled - it's not that bad and doesn't always even require treatment.  That should have been our first clue, I suppose.  We traipsed up to UNC, and due to feeling crummy and not sleeping well the night before, E actually napped during the drive up.  He held up remarkably well to the cast removal, and didn't start really crying until Dr. H came in to re-apply the second cast.  During all of the crying and holding him down for the casting (that SO sucks, by the way), we did manage to turn our brains on enough to ask Dr. H about the surgery issue.  It hadn't sounded like, from our reading, that it was always a necessity.  Dr. H was very firm though, that surgery would definitely be necessary to fully correct E's problem.  Maybe just a tendon lengthening, but probably also a pinning of the joint.  We blinked, and missed our chance to ask more questions.  We were (again) a bit shell-shocked.  The doctor had just confirmed our worst fears, in that we would have to deliver our precious baby over to the medical team for him to have surgery.  We were confused, as we had thought his diagnosis was the more benign oblique talus, but in all of the swirling, we packed up our sniffling little boy and headed home.

That was a very long day.  E was fussy all day, difficult to console, and very un-like our normally happy child.  We attributed it to the new cast, and doled out the acetaminophen at regular intervals.  Which explains why he wasn't still running a fever, I guess.  Tuesday night was probably the worst night of his entire childhood.  He slept in 40 minute intervals all night, with 10-20 minute spurts of crying in between.  Which means I slept in 35 minute intervals, assuming it took me longer to fall asleep after I was sure he wasn't going to start crying again.  We decided that we'd just gotten lucky during the previous casting, and I made sure I kept up with his acetaminophen that day, which made him more comfortable.  Wednesday night was only marginally better, so by the time we got up on Thursday, I'd decided we were going to the pedi.  I was going insane from lack of sleep, and while he was taking very nice, solid 2 hour naps, the little guy was obviously exhausted.  Sure enough, on top of a new cast, the poor dude was coping with a double ear infection.  Antibiotics, followed by the normal diarrhea that seems to go with antibiotics in kids, but at least it was something we could fix, unlike the cast just being uncomfortable.

Amidst my lack of sleep, my husband had started to get upset.  I wasn't operating on all 8 cylinders (heck, probably not even on 2 after all of the nights in a row with bad sleep), so it took me a little longer to get ramped up.  Every thing we found on the internet suggested that with a diagnosis of oblique talus he shouldn't need surgery.  We didn't understand why, if he had the milder version, he was definitely going to need surgery.  Also, we didn't really know what the full plan of care was.  We knew what the internet said, and Dr. H had answered "yes" when I had asked if he would be casted after the suregery, but we were feeling like we had been bundled so quickly from one thing to another that if anyone had explained what was going to happen, we'd missed that part.  I called up to UNC, although given my sleep deprivation I was probably not the right person to be making that type of call, and was able to pretty easily get a nurse to look at E's medical records.  I'm sure anyone actually reading this has already figured out that we had mis-understood Dr. H that first day and E was actually diagnosed with vertical talus.  This made the matter-of-fact way he'd referred to E's need for surgery make much more sense.  Dr. H passed the message along via the nurse that he would explain it (he actually said "again," but I'm pretending I didn't hear that part) at our next appointment.

So, we're closing the end of our first week in our second cast.  No new cast this week because the doctor is on vacation, so I'm not sure if that means we'll need fewer casts because he's in these first two longer, or that we're prolonging the whole casting process between our various vacations, but at least my little boy will have some extra time to get well.  On top of everything else, he's also cut 1 (and probably in the middle of cutting the other) of his top two teeth.  The fact that he was sleeping at all, between the cast, the tooth, the ears, and the diarrhea, is nothing short of a miracle.  Here's to more miracles and both of us getting sleep in the next week.

Diagnosis Day

Life is pretty fantastic for us so far.  Ethan is growing and developing in every way that he should.  He is an absolute joy, and we are loving life as his parents.  God is so good!

Fast forwarding to his 9 month well child appointment - we saw one of the physicians at our pedi's office, as the PA we usually see was out on vacation.  She said that even though his foot did appear to be getting better, if it was her son she would take him back up to Chapel Hill for a second look.  They made us an appointment, and off we trekked again.  

This time, we were much less nervous.  We'd been told so often about the packing-problem-it-will-go-away, that we didn't think much about it.  The appointment wasn't at a perfect time for his nap, but we'd hoped he would fall asleep in the car on the 1 hour drive.  No such luck, but fortunately he was still in good spirits in spite of the missed nap.  He's a pretty happy baby in general.  Our PA came in to examine our son's foot, flanked by (I suppose) a few students.  He stretched both feet to check the range of motion in Ethan's feet and hips, but he seemed a little concerned with the stiffness he discovered in Ethan's right foot.  He said that this was different from the last visit, so he thought an x-ray was appropriate.  By this point in time, Ethan was getting a little fussy (an hour and a half after he should have been down for his morning nap), but he handled the x-ray remarkably well.  A few minutes later, the PA came and told us he was going to have us see the pediatric orthopedist Dr. H.  As quickly as we were bundled into x-ray, we were shifted into yet another room, where a few minutes later the doctor strode in.

I have to say, I didn't process a lot of what he said.  I think both my husband and myself were feeling a little shell shocked.  He talked about different foot problems and how one particular foot problem - congenital vertical talus - matched up with what was going on with Ethan's foot.  He talked about the two versions, oblique versus vertical talus; what we would see when we googled the terms and the more common term "rockerbottom" foot.  He talked about casting, and surgery, mentioning that oblique talus didn't always require surgery.  We were then bundled over to casting, where we met the casting tech.  Meanwhile, Ethan is 2 and a half hours past nap time and 30 minutes past lunch.  Needless to say, the casting didn't go very easily.  Fortunately, my little trouper was so exhausted that he fell asleep mid-casting.  

We left the office with a zonked little boy in a cast, and a little fuzzy as to what had just happened.  As we talked in the car on the way home, we decided that Dr. H had meant that Ethan had the milder version - oblique talus - and thanks to the miracle of modern technology, we googled the term on our iPhones on the way home.  We didn't come up with a whole lot, but we focused on Dr. H's mention that oblique talus didn't always require surgery.  We didn't know much of anything about the plan - if they had talked about what was coming next, it didn't register with us.  We were hoping for a few weeks in a cast, maybe followed by a brace.  Our next appointment wasn't for almost 2 weeks, since we were leaving for vacation in Florida for most of the next week.  Yay - a week at the beach with a baby in a cast.  Doesn't that sound like fun to you?

My First Time!

As a blogger!  I've decided to start this blog because when our son was diagnosed with Congenital Vertical Talus (CVT), we of course googled the term - and found very, very little except abstracts and scientific journal articles.  Nothing in any group.  Nothing in any blog (that we have found).  Nothing from any real people whose child had dealt with, and hopefully conquered, this diagnosis.  Wow, I've also discovered that I hate typing or speaking the word "deformity."

So here's the story so far.  On October 15, 2009 our son Ethan arrived to brighten our life.  He showed up with very little fanfare, but with much anticipation.  We had waited 6 years for this moment.  He was my parents' first grandchild on the East coast.  He was my husband's parents' first grandchild.  And he was perfect in every way, except his right foot was folded up front-wise against his shin.  It worried us, of course, but the pediatrician who examined him assured us that it was "just a packing problem," and they seemed very confident that it would work itself out.  "The womb isn't square," we were told, "so this happens sometimes."  No worries.  After a few days under the heat lamps (he had jaundice), we took our beautiful son home.

Two week checkup, still we were assured that it was no problem.  Again with the "it's a packing problem, and it will work itself out."  The same thing followed at all of the subsequent appointments - not to worry.  At his 4 month check up, the foot did indeed look better.  But it still was obviously just not right.  We were seeing the PA at our pediatricians' office, and she decided to refer us to the orthopedists at UNC, just to be sure.  So, rather nervous, but pretty sure we would be coming home with a brace or a cast, we trekked up to Chapel Hill.  The PA there examined our son's foot and, again, assured us that it was a packing problem and it should go away with time.  He didn't take an x-ray, as he said there were so few bones that were visible in a baby's foot at this age.  He didn't make us a follow up appointment, but encouraged us to keep stretching Ethan's foot and to give them a call if something changed.

Meanwhile, Ethan was growing and doing everything he should.  He slept through the night (shout out to Babywise!), he rolled over, he started solids, he pulled to stand, he learned to crawl.  He has the most people-pleasing personality, as he absolutely loves to make you smile, and he is SUCH a talker!  He loves to laugh, and his smile lights up a room.  We decided for me to (as much as the budget allows) stay home with Ethan, and I'm having a blast being a mommy.

Next time I'll cover more about our diagnosis day.