Friday, January 25, 2013

Clowns, ballerina's and peace and "quiet"!

At our Rheumatology Appt - Johns Hopkins Hospital
Dear Friends and Family,

We are pleased to share the good news that we received at our last rheumatology appointment on January 10th.  Our almost four year old with her triplet baby dolls, is doing quite well!   This blog post will give you some insight into our Johns Hopkins visit and update you on her health.

It takes us about 90 mins to get to our appointment - which is actually great!  There is such a shortage of pediatric rheumatologists in this country, some people either drive for a whole day or more, or have to fly to the nearest pediatric rheumatologist.  We park in a parking garage that has to be a sick joke by the developers because we never know how to get out of the garage or how get to the street level. 

On this particular visit, we were surprised to see clowns!  Apparently, they come every Thursday.  I love that they dress up as doctors.  Doctors shouldn't be scary for kids...their comedy routine helps to make "Dr's" seem less intimidating. :-)

Lucianna is weighed in a special chair since most kids who are seen at Hopkins are very ill and many have severe physical limitations.  (On her first few appointments having a chair was vital since she couldn't stand on her own.) 

After her weight, they take her height, we learned that she's growing!  Our doctor says one big concern with JRA kids is the lack of vertical growth. She's doing marvelously, except that Mom and Dad are both short so she doesn't have a whole lot of help in the height department!

Finally, after some checking of her vitals, we are sent back to our room. Our doctor caught her doing something that made him very happy...CLIMBING!  As a reminder, most of the summer she was unable to walk or had very limited mobility.  Now, not only is she walking and running, but also climbing!    He was very pleased!

The next order of business was the doctor examining all her joints for fluid/swelling/inflammation....NONE.  ZILCH...ZERO...NADA!  She has one wrist that has some limited range of motion, but otherwise, she looks great!  He also read us the report from her lab work done that previous Monday...all clear.  No liver damage from the medicine's, blood work all checked out and her inflammation levels were on the high side of normal. 

So what does this all mean?  Well, it means that Methotrexate is doing exactly what it's supposed to be doing.  Quieting her JRA and quieting her eyes.  At her last eye appt, she was continuing to improve.  She is seen every 2 weeks and our hope is at the next appt, we can discontinue steroid drops.  Four months of constant eye drops...we are thrilled to see the light at the end of the tunnel and hope that her eyes remain quiet. 

Recently, she tried a ballet class with her sister.  She wasn't quite ready for it and decided she didn't want to go anymore.  Bella decided she didn't want to go either...but for that one day, it was great to see these two dressed up and having a ball!  Lucianna was running, yes, running all over the dance floor saying, "try to catch me!" 

So for now, we're waiting to hear that her eyes are quiet and want to continue to see the Methrotrexate doing it's job with no side effects.  We also are hopeful that we can continue to administer it orally rather than intravenously.  We see the rheumatologist again in 3 months unless she has a change in her health.

So,  we are grateful for peace and quiet!  Quieting eyes, quiet arthritis and loud and active Lucianna!  Life is good!

Lucianna's Mama

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