The Limp Saga, part 2

I've posted before about Sam's limp. (Need the backstory?  You can read it here.)  Well the saga continues.

After a 6 month wait we FINALLY had an appointment with the rheumatologist.  Dr. DeGuzman is AMAZING!!  She did a thorough physical and took the most complete medical history of all time.  She wasn't phased at all that she saw Sam on a "good day" (meaning his limp was so incredibly minor it was difficult to appreciate it during exam). She had no doubt that we had seen him in much worse shape -- I didn't even have to pull out my phone to show her videos as proof!

The good news -- it doesn't appear to be muscular in nature.  Dr. DeGuzman honed in on the fact that I have Crohn's.  This, combined with that Sam has pain in his sacrum, has Dr. DeGuzman hunting for a particular genetic marker, hla b27.  Basically sacrum pain in kids as young as Sam is super-rare. The genetic marker we're looking for is seen in people who have a negative rheumatoid factor (which Sam has) but who have a particular type of arthritis (not gonna name it now b/c we don't need to start researching it until we know).  She also mentioned that his pain could be a precursor to Crohn's (which also shares the hla b27 gene).

Sacrum pain is difficult to examine because of the location (base of the spine).  Dr. DeGuzman said Sam's muscles reacted to the pain but she wants to see that joint better.  Soooo today we are heading to TCH-West Campus for an MRI.  While there she is also having his left foot scanned as well.  Remember the last bone scan?  And how we were told it showed he limped?  Yeah...apparently it was the wrong foot that showed that limp.  The bone scan shows blood flow in the bones.  If Sam had been favoring his right foot, his left would have shown an increase in blood flow.  But that's now how it worked out.  He was favoring his left and it was his left that showed an increase in blood flow.  Thankful Dr. DeGuzman caught that!  She examined his foot closely and found that he has mid-range pain.  What that means is this:  On the scan, there is a HUGE white spot on his left foot (showing the increased blood flow) in the middle.  When she stretched and bent and twisted his foot, she was able to determine that his foot is causing him pain (in the middle, not the toes or heel).  Because of all this she wants an MRI of his foot too.

If you think about him today, would you pray for sweet Sammy?  It's a no-big-deal MRI but he has to be sedated which always makes me a bit nervous.  I'll keep you posted as we get new info.

Papi Battle 2013

It's gone on long enough; Grace's love affair with her papi (her pacifier) needs to end.  We've tried before -- once right before the twins moved in I almost broke her of it.  But the turmoil of special needs newborns sent her over the edge and I caved in an effort to right at least part of her little world.  Again, before the girls came home I had her only using it at night and again the turmoil of new people and new places rocked her little psyche but I was determined to hold fast...until her new sisters decided to give in to her regardless of my wishes.  I can see clearly when I'm in a losing battle so I caved again.  But it's time, time to declare freedom from papi.

We had a brilliant plan for our girly girl.  We'd let her earn stickers for papi-free time (it started as whole days, then moved to daylight hours only and then quickly to 8 hour stretches!) and once she earned 14 stickers she could go to the "paint store" with Mommy (it's what she calls the nail salon).   This papi-free experiment started, full of excitement and promise, Tuesday afternoon, and though she didn't quite understand the full-measure of what we were asking her to do we pushed forward.

So far Grace has 2 stickers.  She went to school all day Wednesday with no papi -- one sticker!  She survived after-school-Dora-watching and dinner and church with no papi -- one sticker!  She then began to sound like a broken record repeating the word "papi!" over and over and over again as she sat on her bed.  I got the message -- papi at bedtime it was.  Bedtime was part of the papi-battle we had decided to fight later so we let her have it.

About 4am today, in her sleep, Grace popped that papi out of her mouth and began to scream-cry, "I don't want any stickers! I don't want any stickers!" Yep, that's right, my sweet baby girl was having a nightmare about losing her papi.  Her daddy's heart isn't sure he can fight the papi-battle anymore.  We're going to try to stay strong...but if you see her strolling around town with that papi in her mouth you'll know we lost.

Because I should post

It's not been good lately friends, not good at all.  There are a host of reasons I could trot before you but they don't really matter.  Adoption is hard, having 5 kids is hard, cramming 7 people in 3 bedrooms is hard, transition is hard.  I've talked about all this before...nothing new. 

I figured I should put something down on this old blog in hopes of keeping (ahem, jump-starting) my rhythm.  

So I'm sitting up at midnight listening to some new hymn rec's from my friend Lindsey; I've just finished cleaning off the counter, switched over another load of laundry (will that ever end??), typed my VBS curriculum notes and am firmly trying not to do anything else on my to-do list.  The house is quiet and my mind is not.  I'm trying to drown the noise of life and the world with truth of my Savior in hymn form.

A lady cursed at me today because my kids were in the street.  Another lady shook her finger at me for the same reason. Sunday someone from my church (she didn't recognize me but I recognized her) stopped and gave me quite the lecture for letting my children ride their bikes in the street. If I didn't know better I would think the street is a ridiculous place for a child to ride his bike.  I've been  trying to remind myself all day that my kids were behaving, weren't in the wrong.  More noise...

I stand amazed in the presence of Jesus the Nazarene...

I fought with my daughter most of the day.  Lots of tears, a bit of yelling (shocking yes, I ran out grace too quickly) made for a terrible day.  Some days (most days lately) I feel like I've got the words, "I just don't know what to do" on a repeating track.  More noise...

And wonder how he could love me, a sinner, condemned, unclean...

A friend of mine got her daughter today.  What glorious blessing!  And my arms ache for the babies that won't come home here anymore.  I wonder if that desire will ever fade. The fixer in me spins out of control trying to find a way to get that part of me what it wants.  More noise...

So I stand on every promise of your word...

The house, oh the house.  I've heard from the Lord on this one.  And I don't understand.  But I've heard so I will cling to that.  The house deserves it's own post.  Maybe I'll write that one next.  But knowing doesn't always make things easier.  More noise...

So I'll stand on every promise of your word...

Be thou my vision, O Lord of my heart

Naught be all else to me, save that Thou art

Thou my best thought, by day or by night

Waking or sleeping, Thy presence my light.

no more noise...

I miss him

This is Isaac on the night we met him.

I miss my boy.  I miss the way he snuggled in close to sleep.  I miss the way he grinned with his whole mouth open.  I miss the way he was just starting to vocalize with us.  I miss the way he neatly book-ended my little family.  I miss the way he felt immediately like part of us.

Of course he doesn't look this way any more.  He's two now (I'll never forget his birthday -- 1/11/11). And April 1st of this year will mark two years since he was taken from us.  I still sometimes hope it was just a cruel joke. He's a big boy -- probably with no memory of all the memories he made here.  

I've never had to bury a child.  I have no real understanding of the finality of that horror.  But I have lost my son.  I've had to grieve, alone in the middle of the night, the ache of empty arms.  People say I should be happy for him (and in my mind I guess I am); he was reunited with his biological family.  Sometimes my heart struggles though, because we were his family when no one else wanted to be.  At the strangest times I find myself thinking about him, wondering what he's doing, what he's like.  "They" said it would get easier with time.  I suppose it did -- I don't have to wonder every second how I'm going to breathe again.  But the grief itself isn't less, isn't easier.  It's not constant; no, now it hits in waves, unexpectedly and without warning, ruining me for a time. There are people in my life who say I need to get over it, pull myself up by the boot straps and move on, it's over.  I'm not sure how to do that. I'm not even sure I want to do that. 

There's no real lesson here.  No clever way to end this post.  But if this is to really be any sort of memoir of me, then this needs to be here.  

Facebook rulebook

Before beginning this post, I think I have to admit that writing it officially makes me old...as in yesterday's technology old.  Not in the "I'm a relic" way -- I'm only 31 after all (is that right? I can't even remember).  But in the "I'm an iPhone 4 in an iPhone 5 world." I always wondered when this would happen and how it would feel...

On to facebook...

I think I need a facebook rulebook.  I recently commented on a "friend's" status and immediately thought, "I wonder if I just interrupted that conversation." And right then I began to have a feeling that I'm breaking a whole mess of unspoken rules about to whom and when I should comment.  I have a mess of friends -- old and new -- that fill my newsfeed daily.  Some are funny, others...not so much.  All entertaining for my somewhat voyeuristic self.  I've recently decided that if a name is on my friend list then I'll consider him/her my friend, as in I'll actually say something if I have something to say.  Let the commenting commence to start.  Precisely because of my new personal commenting rules, I've discovered that not everyone shares those rules.   In fact, I'm beginning to think I'm in the minority if not solitary position here. I don't want this to read as a plea for more comments.  I personally don't really care if I get comments...if you feel like saying something then say it.  Some days my introverted self just doesn't want  to comment -- too much personal interaction.  Rather this is me wondering, "am I doing this wrong?".  Is there a right way (and conversely wrong way) to comment?  Are there circles on facebook?  Am I supposed to only comment on those in the inner sanctum and just creep on those outside it?

And here's where I think it may be an age thing.  If you are labeled "Friend" then I think that deems us entered into some sort of relationship.  And if we are entered into some sort of relationship then I think that there shouldn't be any rules to how and when I communicate via the medium of the relationship (in this case facebook). And if there are rules, then shouldn't we terminate the relationship?  I just keep thinking that if any of my "real life" friends and I had rules on communication it would be difficult for us to maintain our friendships. And maybe that's the kicker.  Maybe I've grown tired of using facebook to check up on people and see how far they've come.  Maybe I've come to a place in my life when I realize how difficult it is for all of us and I genuinely want to celebrate and grieve and have community with folks...no matter what we were like decades ago.

I'll end with this...another apology for this mess of words I'll call writing.  Seriously out of practice...

The bone scan of 2013

I posted on facebook yesterday about Sam having a bone scan and it became clear that we hadn't done the best job at keeping the world informed of the goings-on around here.  Thought it might best to set the record straight and get us all on the same page.

Sam limps. That's the short answer.  He's actually been limping...for 8 months. At least that's as far back as we can remember.  We can distinctly remember talking about it around Mother's Day 2012 but it could have been happening before.  And I remember, even then, not knowing why he was limping.  We've watched him over the course of that time -- some days his limp is BAD and other days it's non-existent.  Some days he'll tell me his leg hurts and other days he'll only identify pain if asked and other days he looks at you like you've grown an extra appendage when quizzed about his leg.

Christmas this year brought inquiries from lots of people...enough inquiries that we decided that maybe we should take him to the doctor.  We fully expected to be told it was a high ankle sprain or some "no big deal" thing.  We first visited our pediatrician.  She poked and prodded and could find nothing definitive, and though he limped into the office and out of the office, when she asked him to walk he did so without a limp.  Her assessment:  send him to the orthopedic doctor.  So we made an appointment. Again, Sam limped in so severely that the nurse was worried he shouldn't be walking at all.  We x-ray'd and examined and again, when the doctor asked him to walk, skip, jump, and balance, Sam did so without a problem.  "Normal gait" was the observation.  I cried.  My son is limping for everyone except the doctor.  Our ortho decided to order blood tests to rule out infections and other illnesses; words like "muscular dystrophy" and "leukemia" floated around and I held my breath for 3 days waiting those test results.  All were normal.  And in case anyone's keeping track, that's the third time in his short 5 years of life we've heard it might be cancer for Sam.  So tired of that.

Because Sam was still limping and the x-rays and blood work came back all clear, the doctor ordered a 3 phase bone scan. We waited 2 weeks for the first available appointment.  Then we ventured to Texas Children's where they injected him with radioactive dye and took pictures of his pelvis, legs and feet.  Then we waited 3 hours and took more pictures to see how the dye had been absorbed into his bones.  A fascinating test, really; I was amazed at the technology.  We weren't sure how to even pray for that scan.  We didn't want them to find anything but we also weren't sure we didn't want them to not find anything either, weren't sure we wanted to go the next step.

Bone scan results come back quickly -- we received a call from our ortho last night.  The bone scan was clear except for a slight abnormality that indicated a change in weight bearing.  Basically -- the scan showed that Sam limps.  Now we are being referred to a pediatric rheumatologist.  The kicker -- there are only 4 pediatric rheumatologists in Houston so the wait is super long to get an appointment.  I can't actually call and make an appointment; our referring doctor has to do that for me. Fortunately, because my God's not a God of coincidence, one of my best friends has a sister-in-law who is a pediatric rheumatologist, and although she practices in New Orleans, has been great about answering the zillion questions I've had.

The good news, from our ortho and our pediatrician and our friend -- it's probably not a big deal.  All of Sam's tests are good, great in fact.  And he's healthy and active and "normal" (Sam's never been normal a day in his life but from a medical perspective we'll take it).  We'll pursue this new direction and see what happens. And we'll try not to worry.  Because we know who goes before us and who is our rear guard.

A Cornucopia of Randomness

Some thoughts...

1.  There is no greater creation than dressing, turkey, gravy and cranberries, at the same time.  Trust me on this.

2.  To the lady who took the seats from my children in church:  I kinda think you may have missed the point of being there.  The perfect center seat isn't it...glad my newly-turned-5 year old gets it.

3.  Some lessons have to be learned by experience, no matter your age.  For me, recently, this was the need for exercise and a good diet. Two weeks off and my body started shutting down.  One day back and, amazingly, things have completely turned around.  No more skipping morning runs for this lady.  I've heard it all my life but to see it played out so clearly was perspective-changing.

4.  Pre-teen sass may be my kryptonite.  I've had more in the last month than I care to stomach.  And goodness, we're just beginning.  Right now I'm trying to understand how I became the bad guy when I'm not the one dealt the punishment for disobedience.  Somehow...always my fault.  Luke says we need to get the devil out of her...I'm thinking of dosing her food with midol. (Not really on both accounts).

5.  Making things like turkey soup from a leftover bird makes me feel ever so pioneer-like.  Ma Ingalls and I might as well be enjoying a rare chat and a cup of coffee.

That's it.  Maybe I'll get something a bit more lofty, or at the very least organized into complete thoughts, later.