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!

Love,

Lucianna's Mama

In like a lion, out like a lamb?

Snow Angels

Dear family and friends,

The girls had a wonderful Christmas. It was made extra special by being a white Christmas! Santa was very good to them, although, sometimes they really "test" Santa. <Grrr...> The girls were particularly sad that "Christmas is over" and did not like it when mommy had to take down the tree. We still listen to Christmas music though. Why not, it's kid-friendly and I never worry about anything bad being said!

That said, we've had a little bit of a rocky start to our new year. Lucianna had her routine eye appointment this morning. Unfortunately, it was discovered that her right eye has inflammation back. (I was sort of expecting to hear this since her eyes have shown some intermittent redness and cloudiness since her last appt.) Nonetheless, it was disappointing to hear. We knew that there is always a chance of a relapse with both the JRA and Uveitis. Doctors are unable to really tell a parent what to expect since both these illnesses manifest themselves differently in every child. However, doctors do prepare you by saying, "things can change at any time for any reason". We JRA families are desperate for a clear picture of what to expect as we struggle for remission and jump these hurdles.

We are now back on Pred Forte drops for the right eye, 4 times a day and back on the nightly dilating drops. The left eye is still on an every other day dose and is still "quiet".

Along with the Zantac and Naproxen that we administer three times a day, her Rheumatologist agrees with the ophthalmologists' recommendation that an increase in the Methotrexate will help her. So tomorrow night, we move from 0.3mls to 0.4mls. Now of course, Mommy is a bit nervous since more MTX can mean more chance for some side effects, but we will cross that bridge IF it comes. I am just going to keep a watchful eye over her and try to identify anything out of the ordinary. Our next Rheumatologist appt is Thursday, January 10th. The Rheumatologist called me today to tell us that he still wants to see her despite her change condition. (Before, he wanted to only see her when we got the eyes quiet.) So Lucianna will have some blood work either tomorrow or Monday, (that's loads of fun, but I make Daddy do it).  The blood work is to make sure that her liver and other tests all check out ok. We're hoping for good news.

As always, we're taking it one step at a time. A bumpy start to the new year, but maybe that means "out like a lamb"???

Wishing you all a wonderful, and HEALTHY new year!

Love,
Lucianna's Mommy