A Little Something Extra

Wednesday, June 29, 2011

Look, Ma! No brace!

Micah had another set of x-rays on his leg yesterday.  It looks much better.  Sorry... no pictures of the actual x-rays this time as I was attempting to keep him quiet enough to hear what the surgeon was saying.

In a nutshell, the bone is filling in nicely.  The risk of re-fracture is low.  He would like Micah to wear the leg immobilizing brace while he's in the car and when he is fatigued.  But Micah is cleared for weight-bearing, including walking with assistance.  He actually stood up himself in the middle of the floor and posed for this picture before taking a couple of steps.  Woohoo!

On a separate note, Micah also had the privilege of seeing his other orthopedic surgeon yesterday morning for a check-up on his hand.  Both of his hands were x-ray'd to make sure that they're growing at an equal rate.  Visible on this year's x-rays are the growth plates on the bones on both hands.  Last year's x-rays looked like an infant's bones (no growth plates).  Long-term plan is to clip the webbing between his fingers to increase the functionality.  His middle two fingers, for example, don't move well independently of each other.  But we're going to delay that for a while.  And we don't go back to see her for a year!

At that appointment yesterday morning I had the privilege of meeting a special military family in the waiting room.  Their son, Elijah (almost 2 years old), is recovering from a serious bacterial meningitis infection.  He went into septic shock (like Micah) and ended up losing some limbs.  He has been inpatient at Children's of MN for 2 months.  During that time, he has become a big brother! (can you imagine your child being airlifted to Minneapolis and you living in the hospital with your critically ill son when you were 33 weeks pregnant?).  Anyway, Elijah was at Gillette Children's seeing some of the doctors that will be caring for him when he is *hopefully* transferred there for inpatient rehab this week.  He is absolutely adorable!

Okay, I needed that reality check.  Seriously, Micah had a similar toxic shock experience.  By the grace of God, not only did he survive, but he also had no long-term effects.  I'm sure that Elijah's parents are just happy that he is alive.  But he has some struggles ahead of him.  Please pray for this sweet boy.  I'll share his CaringBridge page if I get permission from his parents.

Wednesday, June 15, 2011

Sofa climber and sleep stuff

There is no photographic evidence of the following event.  I left 3 children in the family room and went to the kitchen to get dinner out of the oven last night.  I probably left the room for a total of 2 minutes.  When I returned, I found Micah on the sofa and not in his comfy chair on the floor.  The other two kids hadn't budged.  But Micah apparently decided he would rather watch TV from the sofa than from his chair.  I'm pretty sure that event did not fall safely into the "no weight bearing" category. (but WTG, Micah, for the motivation to get up?).  Have I mentioned that this kid has the best.laugh.ever?  He was pretty proud of himself and gave me a hilarious laugh when I asked him how he got there.  Oh, well.  Seriously... I can't supervise 24/7.

Micah is sleeping well.  I can't even believe I'm saying that.  We took him off Prevacid.  And last night we dropped his decongestant.  If we can successfully take him off his nightly pain-reliever, then I'm going to have a nice little chat with Micah's ENT.  Why?  Because the only thing that's different since the cast experience is that he now knows how to sleep with a pillow.  If the pillow is fixing his poor sleep, then wouldn't it make sense that he has had some sort of breathing issue that was making him wake up frequently during the night?

There are some studies that have shown that individuals with Down syndrome sleep poorly.  Great information, right?  I mean, most parents of a little one with Down syndrome could tell you THAT (history: Micah "passed" his sleep study, aka no apnea episodes, but he had THIRTY awakenings!).  But there hasn't been enough research done to show WHY they don't sleep well.  I hope to address that at a seminar at the NDSC annual convention (in San Antonio in August... who else is going?).  There's a workshop being presented by the director of the DS clinic at Denver Children's that is supposed to address new medical information and controversies.  I hope the presenter will be open to questions.  And Brian Skotko will be doing a workshop on medical updates too.

I'm so excited that one of Micah's SLP's (speech and language pathologist) will be attending NDSC this year.  And she'll be joining Micah's neurodevelopmental pediatrician at the medical professionals conference the first day.

On a separate note, Micah saw his ophthalmologist last Thursday and received a new prescription.  His crossing is getting a bit worse and his doc would like to see if new lenses will help.  If not, we might have to go back to patching.  Or possibly a surgical repair.

Thursday, June 9, 2011

Cast is off

The long-awaited day arrived.  Micah had his cast removed yesterday afternoon.  He did GREAT with the cast removal.  We were warned by the nurses that he would probably cry after it came off due to the sensory change.  I was more worried about the noise of the saw which is used to remove the cast.  I attempted to minimize this by bringing the iPad and headphones.  It worked like a charm.  He didn't cry at all... during the cast removal.

But he definitely wasn't happy when the orthotist put the leg immobilizer on his leg.  I'm pretty sure he just didn't want anyone touching his legs at that point (that included me, by the way... he was quite irritated when I touched his legs).

I do not have a photo of the x-ray from the day Micah broke his leg.  But here's a photo of the x-ray taken at his 2-week checkup (taken through the cast).

And here's a photo of his x-ray taken today (the bright white dot by the bone is just the mouse cursor):

Does this looked healed to you?  It doesn't to me.  But there is healing going on.  You can see faint lines connecting the brokenness together.  Apparently this bone will always have a slight lump on it (we felt it today).  And apparently anything less than a 20% angle is considered a good fix.  But we neglected to ask the surgeon whether Micah's bone growth is taking longer than anticipated.

We had been prepared for a few weeks in the leg immobilizer brace (it keeps his leg straight).  But I certainly wasn't expecting to hear, "No weight bearing," for three more weeks.  Eesh.  I was looking forward to getting him back on his feet.  No dice.  Not only that, but they have made me terrified of Micah re-fracturing his leg (apparently 1:20 chance).  Another quote: "Don't let the leg twist."  I'm still not quite sure about this one.  I mean, I can control how I move his legs when I change his diapers.  But for those of you with kids who have hypotonia, remember back to how our kids sometimes get from sitting to the floor and vice versa?

We were told that Micah can sleep without his leg immobilizer brace, but that was making me nervous.  Apparently it made Micah nervous too, because he cried when I took it off when I was dressing him for bed.  I imagine that it might feel more secure since he's been wrapped so tightly for 6 1/2 weeks... maybe his leg needed the hug.  Whatever the reason... HE SLEPT THROUGH THE NIGHT LAST NIGHT! :-)

Best part of the day: putting Micah into the car after the appointment.  His face lit up like he had won the lottery.  He started to laugh and he giggled the whole way home.  He was SO EXCITED to see out a window again!

Sunday, June 5, 2011

Home stretch

Wednesday is the day the cast comes off.  I'm sure some of you are thinking, "Wow, that went really quickly."  Trust me... I'm NOT thinking that. :-)

Micah has gotten much more mobile in his cast lately, which has resulted in the need for sleeping modifications (again) because he's rolling over more.  Last night I found him asleep on his side with his leg up in the air at a 45-degree angle.  We had to put boards on the sides of the toddler bed last week because he slid out the side one night (twice) and woke up crying with his head on the bed and his feet on the floor.  He'll be back in his crib on Wednesday night.

On a separate note... I've heard that there are some issues with my blog and Google Reader.  Sorry about that.  I don't use Google reader, so I'm not familiar with how it works.  But apparently there were some spams that went through last week.  I hope they were isolated to that one day.  Please let me know if it happens again.  Not that I know what to do about it if it does...