With Sympathy and Awe


Here’s the latest chapter in our SJIA saga.  (It seems to have fallen out of fashion to call it “SOJIA.”  Now it’s just “SJIA.”  Like the teenager who wants to be called “Tom” instead of “Tommy,” I’ll try to accommodate the new name…but he’ll always be “Tommy” in my heart.)

We ended up doing another up-and-back to Mayo on Thursday, canceling the appointments on Friday and opting to go home instead based on the results.

Cee gets very uncomfortable after long car rides, but fortunately she made it to Mayo without tears.  We squeaked in right before the appointment time, so David went to park after dropping Cee and me off at the door.

Our first stop was xrays.  The radiologist was brusque.

CrabTech:  You going to stay in here?
Me:  No…I’ll go to the waiting room.
Me:  Are you going to cover her ovaries?
CrabTech:  For two of the pictures.
Me:  (upset because I can’t even protect Cee’s d-a-m-n ovaries)  Okay.  I’ll go out now.
Me:  (sitting down in the waiting room for 30 seconds)
CrabTech: (opening the door, sounding irritated)  Is this all she can move?  Or is she just nervous?
Me:  (going back in to Cee on the table) Let me see.  I thought they would have put in the notes that she has limited mobility.
CrabTech:  They didn’t.
Me:  (showing her how much Cee can move)  This is about as far as she’ll go.
CrabTech:  (visibly irritated) Well, we’ll just try it like this.
Me:  Sorry.  This is as much as she’ll move.  I’m sorry; I assumed there would have been a note…
CrabTech:  There wasn’t.
Me:  Okay… (leaving the room, trying not to cry)

Cee came out, I helped her get dressed, and we returned to the waiting room for our next appointment.


Next up was the pediatric orthopedic doctor appointment.  Well, sort of that was the next step.  The next step was actually the “doctor with training wheels” they send in before the actual doctor.

(Aside from his name, this is pretty much how it went down.)

Practice Doctor:  Hi, I’m Joe Newbie.  Let me ask you a bunch of questions.
Me:  (answering all the questions)
Practice Doctor:  (looking at xray images)  This is bad.  It’s bad.
Me:  Okay…so what does that mean?
Practice Doctor:  You just don’t see pictures like this from an eight year old.
Me:  So what do we do?  What are our options?
Practice Doctor:  I’ll let Dr. Orthopedic talk to you about that.  I’ll go fill her in.  (shakes our hands)  Nice to meet you. (leaves)
Me:  … Do you think “bad” is a technical term?
David:  Well, we knew this was how it was going to go.  He had on his “my first real job” suit.


I’m tired of all the doctors with training wheels.  I know they just send them in to practice collecting information and talking to real people.  At least they could have us fill out some sort of critique afterwards.  That would be sort of therapeutic.


Dr. Joe Newbie:  A Review
Good eye contact
Asked a few questions that revealed he had no idea about SJIA
Used the vague descriptor of “bad” to describe results
Seemed obviously surprised at patient’s condition
Offered little actual useful information
Conclusion:  I don’t want a doctor to approach my child with the same novelty with which you’d approach an exotic animal at the zoo.

(Wow!  Look at this pangolin!  See how his feet are?  Look at that tail shape?  Isn’t that interesting?!?! )

We saw Dr. Orthopedic afterwards.  She didn’t offer much either.  I did learn how a hip replacement actually works, though.

Before the appointment I would have lumped “hip replacement” with “root canal” and “bypass surgery”– medical procedures I’m glad exist, but sure hope I never have to deal with and don’t really want to hear about.

With a hip replacement they cut off the top of the femur and replace it with a plastic/metal ball and socket.  

Ummm…no thanks.  I’ll take the root canal instead, please.  Can we get in line for a root canal instead?  Where’s the root canal line?  No?

There’s more to it as far as what happens on the pelvis side of things, but I couldn’t really concentrate after the words “cut off the top of the femur,” and I’m too scared to google it.  Just the thought of it makes me erpy.

Obviously, once that step is taken, there isn’t any going back.  You never can have your hip back.  And since so much bone is removed in order to anchor the artificial joint, it seems to be a bad idea while Cee is so small.  There are issues with infection, rejection, and device failure.

Nowadays there aren’t many hip replacements done on the kiddie crowd because the big-gun medications have mostly eliminated the need for them.  The big-gun medications are protecting joints.

Part of the reason this is so troubling is because she is on such major medications AND THIS IS STILL HAPPENING.  She lost a hip’s worth of cartilage in four months.  And there’s nothing we can do to stop it as it’s happening on her other hip.  We are on a train and unable to do anything save hold on tight as it hurdles down the track.

I did lose it while Dr. Orthopedic was in the room.  “We’ve played the game,” I choked out from behind my tissue.  “And there’s nothing we can do?”

So.  Understading.  Dr. Orthopedic was so.  understanding. at the rarity and severity of our situation.

CAN WE PLEASE STOP BEING SYMPATHETIC AND SURPRISED, PEOPLE?  These are not characteristics you want from your doctors.  I’ll take aloof and knowledgeable over sympathetic and surprised any day.

“I’ll go confer with Dr. Rheumatology.  Maybe there’s something medication-wise that he’ll suggest.”  With that, Dr. Orthopedic was able to escape.

“Buy a lottery ticket,” I said to David, “because we just graduated out of the Mayo Clinic. ”  He smiled.  Only a little.

When we’re stressed out we fall into predictable patterns.  David retreats inward.  I act like I’ve had a few (I don’t really drink…but it’s how I imagine I would be if I did).  All the sudden I get louder, with big gestures, laughing too hard in all the wrong places.  I challenged David to a thumb war while we waited for Dr. Orthopedic to get Dr. Rheumatology  and threatened to examine the thumbs of anyone else who came into the room in order to see if they were stubby-style (like mine) or hitch-hiker (like David’s).


Dr. Rheumatology is great with Cee.  His knowledgeable nerdiness and  sense of humor have been a blessing to us these past four years.  We’d like to invite him over for sweet tea (seems appropriate given his slightly southern speech), but that would probably be weird.  “Hi, we’ve known you for four years, and you’ve seen us cry.  Want to hang out?”

At any rate, we trust him.  But he admitted that he has nothing else to offer.  When we started this last infusion medication (over a year ago?), he had said that we’re sort of at the end of the line.  There aren’t many (or any?) other medications to try.

Cee will need to have her hips replaced.  The question is when.  In the mean time, we need for her to move as much as possible through the pain so that when she’s finally able to have her hips replaced, there’s enough muscle and such to make it possible.

Is that a firm “no” on trading for the root canal, then?  Yes?  Okay.

The therapy pool is the only way that Cee really moves, so we need to up our therapy game.  That’s it.  All we’re left with is increased swimming until the magical time when Cee can have the tops of her femurs sawed off.  There are several heated pools in the area, but the logistics of how we’re going to make that work, several times a week is overwhelming.

We have one more card to play in this game, an appointment with The Guy.

Dr. Rheumatology is working to get us to see The Guy in pediatric rheumatology, a doctor at Cincinnati Children’s Hospital.  They think they can get us in at the end of March, beginning of April.  With only the fuzziest of details we can’t do any planning.  Cee wouldn’t handle a car ride, so we’d fly.  But when to fly in and out?  Will it be one appointment or multiple appointments?  Do we take the kids and make it a vacation?  Or do we pawn off the other kids and take just Cee?

And thus begins the next chapter of question marks.





So, this is where I’d like all the stories about people you know who are living large after hip replacement.  Your great aunt Bernice?  Albert, your 80-year-old neighbor?  Harriet, the oldest old lady from church?  Bring on all your hip replacement success stories!

If you don’t have any grandmas or great uncles who have gone through it, how about Cincinnati info?  What should we be sure to see or do while we’re there for a super stressful last-ditch attempt at answers appointment?  Anyone have friend out there who could pick us up from the airport so we don’t have to rent a car?

And, if you don’t know anyone with artificial hips or anything about Cincinnati, could you just tell us that everything is going to be okay?  We’ve had enough truth for a little while…how about a few rose-colored lies?  Maybe involving unicorns and rainbows?  That’d be nice.  Thanks in advance.

PS– Dr. Rheumatology has hitch-hiker thumbs.  In case you were in suspense.


  1. // Reply

    Oh, dear, Alicia. I can only imagine your sense of overwhelm right now. I so wish I were holy enough to have beautiful, inspiring, Catholic words to say to you.

    God gave Cee to you and your husband, no one else. He knew he wanted you to raise her and go through this terrible journey alongside her.

    I will be praying for you. Selfishly, I hope I can be a big enough person that your Real Struggles are enough to make *me* a better mom in the day-to-day grind, but I bet I’m not that big of a person.

  2. // Reply

    I’ve never commented before so Hi! Cee and you all are in my prayers.
    I’m from a suburb of Cincinnati (originally unfortunately otherwise I would pick you up at the airport). It might add to your expenses in terms of car rental costs but I’d look into flying into either Lexington, Louisville, or Dayton rather than Cincinnati (which is actually in Ky anyways). Dayton is usually cheapest for me.
    As for things to do the Cincinnati Museum Center is three museums under one roof. There is a beautiful botanical garden (be warned it was a bad neighborhood when I was there), the Zoo is fun. There are some cool restaurants on the river like Hofbrauhaus.

    1. // Reply

      Thank you for the information! I like to have lots of background before making decisions, and I appreciate your input. Thanks!

  3. // Reply

    My mother in law just had hip replacement surgery. The change in her has been amazing. Before surgery she was pretty immobile, using canes and scooters to get aroun, if at all. After the surgery she no longer needs any assistance getting around and is able to play and lift her grandkids again. She also has a very low pain tolerance (she admits it too) and her recovery was not bad at all.

    It always amazes me at the lack of communication that occurs in the medical field. Early on in this pregnancy I had to get an ultrasound of my kidneys. During this procedure the tech happened to see the baby and proceeded to panic and drop the ultrasound wand. She did not know I was pregnant and thought she had discovered the pregnancy. I thought “patient is pregnant” might be an important note to have in the file, guess not.

    1. // Reply

      Haha! Thanks for the smile and the hip replacement success story. 🙂

  4. // Reply

    Both my grandmother and my aunt (who was in her 50’s) had their hips replaced. They were totally new people afterwards. My grandmother went from thinking about moving into a nursing home to taking on extra gardening and planning a European vacation. My aunt was able to resume her heavy workouts she likes so much, including running. Both of them thought the recovery was pretty “easy”.

    1. // Reply

      So happy to hear this!!! And I still want to borrow your grandma’s book.

  5. // Reply

    I have never commented before, but I have been following your posts and praying for your family and Cee! Thank you for blogging through your journey.I am 17 and I have a chronic illness, have had to have infusions, lots of medicines and diet changes, know the pain in a small way, and am praying for all the little and big hard things.

    In no way am I comparing my suffering to yours, but I also have had to face the surgery decision and it was a very hard process but ultimately it has been for the best. Relief can come and I have heard great things about hip replacement surgery. The Lord was faithful and he remains to be!
    Will be praying for your trip to Cincinnati!

    1. // Reply

      Thanks for commenting, Avery. It means a lot to hear from a young person who has faced similar hurdles.

  6. // Reply

    My father-in-law had both hips replaced several years ago and it made a big difference in his mobility. It took him about 3 weeks to recover from the operation, I think, but his results may also have been influenced by the fact that he has needed knee replacements, too, for about 30 years now. (He’ll be getting those at the end of this month.). What he keeps saying is that hip replacements are far easier and less painful, with less recovery time than knees.

    I really hope Cee gets some relief… and that you find a doctor who can give you some answers.

    1. // Reply

      Yay! Glad your father-in-law had a good experience. And thanks for the prayers. 🙂

  7. // Reply

    Continued prayers for your whole family. I am not even going to tell you how much my heart breaks for you, or it will be okay, or I know what you’re going thru….cause I can’t. But I have a friend (I think in.her 40s) that had her hip replaced less than a year ago. She was a rockstar. If you would like to pick her brain, let me know and I will get you her info.
    Praying for strength, peace and answers!!

    1. // Reply

      Thank you for your prayers! For better or worse we will probably have to wait a few years before Cee is big enough for hip replacement. Then I will want All The Details. For now, I’m just glad to hear about satisfied hip replacement customers. 🙂

  8. // Reply

    I’m blown away (in a good way) at how you can write about such a serious subject with a brilliant and subtle sense of humor – kind of makes me wonder as I’m reading if I should laugh or cry. That’s totally a gift you have right there, Alicia.

    My hubby and I included your family in our bedtime prayers last night. Will continue to pray! God’s got this.

    1. // Reply

      I suppose that’s what I’m going for since I’m not sure if I should laugh or cry either. Thank you for your prayers!

  9. // Reply

    I somehow just stumbled upon your blog today and it must be fate because my 12 year old daughter is scheduled for a hip replacement (left hip) on March 27th. I’m facing the exact same issues as you. I inadvertently saw a portion of a hip replacement video and I guarantee it’s given me some sort of PTSD. Ugh. I don’t know how I will cope during the actual surgery, wondering which gruesome step the surgeon will be taking, minute by minute. But then I remind myself it’s not all about me. My husband and I have to put up a brave front because if our daughter sees us sad or scared, I’m afraid she’ll balk.

    The only positive thing is that I hope her ugly, chronic pain will disappear. No more pain meds…I can’t wait for her to not need them!

    Oh yes…can’t forget to factor in the scheduling problems! We have 3 other children…finding care for them while we’ll be over an hour away has been a huge stressor!

    Anyway, we are Canadian so my daughter’s surgery won’t be at the same hospital as yours but please know your daughter and your family will be in my thoughts and prayers!

    1. // Reply

      I am very sorry to share these same worries as your family, but thank you for commenting. It’s a lonely diagnosis, and I feel oddly better that we’re not alone with it. You are so right– we have to have a brave face for the sake of the kids.

      Prayers for you as well– and some unicorns and rainbows, too. I’ll mark the 27th on our calendar to pray for you especially then.

  10. // Reply

    Hi Alicia,

    First time commenter here, as well…
    Please know you and your family will be in my prayers!
    My family has also dealt with a difficult juvenile diagnosis, and it’s horrible. There’s no way around it, especially when the doctors seem to be out of ideas. (I was always tempted to wonder, “why can’t they just FIX IT?!”) However, a wise priest once told me to “put [a different difficult and scary situation certainly not comparable to yours] in Our Lady’s lap, and ask our Mother to untie this knot,” and I know she always comes through. Our situation, though I would not wish it on anyone, resulted in the reversion of at least one fallen-away Catholic, who is now practicing, and numerous graces and beautiful joys. I promise everything will be okay. We know Who wins in the end, and it ain’t sickness, it ain’t evil, and it ain’t pain.


  11. // Reply

    I haven’t been able to get to my computer until today.

    I want you to know I was feeling every ounce of emotion you had while writing this piece, as I was reading it. I share some of your frustration with those residents who come in, are baffled by what’s going on (could they look *any more* like deer in the headlights???!!) and turn around and flee to the security of the attending specialist’s office! And then, to have little to no answers, or nothing you want to hear anyway, from the attending – I know that frustration.

    Unlike your daughter, I am not facing hip replacement anytime soon – although, I wonder if my bursitis and the way I sometimes have to augment to move will someday mean I will be seeking out referrals for that (and, if they are hereditary, then that’s an even larger reason to suspect it will be in my distant future). My grandmother had both hips replaced, and I’ve met a couple others who have had both hips replaced. All those who have had both replaced have talked about going from wheelchair to functional walking – my grandmother had other exacerbating conditions which kept her housebound, but I know she was able to get around her apartment after her hip replacements.

    My biggest frustration comes when the “experts” have no clue – they don’t know *how* to treat CFS. And, contrary to what people automatically assume, it’s more than exhaustion – it’s also joint pain which can sometimes render stair climbing exceedingly difficult (especially with colder weather). But, I also acknowledge, I have no *clue* the extent of the pain your Cee must go through.

    You and your family are amazing – your faith, your tenacity in seeking care (’cause I know we all will do whatever we can for our kiddos), and your mama bear love are so admirable and AWE-some. I have heard good things about the Cincinnati Zoo (and, Wikipedia says it’s the second oldest zoo in the U.S., which to me also makes it a cool historical trip)! I wish I could help further with recommendations, and plan to share this on my FB feed to hopefully get more people to pray, and give comments!

    Please know you are not alone, and you have a huge tribe praying for you and your entire family. You are all an inspiration to so many people, and I am grateful you found me on the internet, so that I could get to “know” you through your writing and our interactions!

    Gentle hugs – to you and your family. And, if we lived closer, I’d bring some coffee over and let you vent.

    (P.S. – you can always fill out customer comment cards with the Patient Advocate, to give feedback on your experience in the hospitals… usually some sort of hospital management also likes to hear how their doctors and residents are doing…)

  12. // Reply

    My dad had his hip replaced. He was super high risk. It gave him a new lease on life.

    I wish I could hug you. And here I’ve been bugging you about trivial stuff. You’re a rockstar, girl, and the perfect mama for Cee. God bless you, friend. We got your back, even from afar.

  13. // Reply

    Everything’s going to be okay. I’m going say my Rosary for you and your family this week. You guys are in my heart of hearts.

    1. // Reply

      Thank you, Christina. We appreciate your prayers!!!

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