Great News: Lucianna is improving!!!

 

Dear friends and family,

{For those not up-to-date on the blogposts:  We sent the Rheumatologist an email and explained that Lucianna did not seem to be getting better but possibly worse.  He requested to see us this week.  This is the result of that appointment.}

WE HAVE GREAT NEWS!!!  We are elated to share that Lucianna's doctors appointment went really, really well today!  

DESPITE HER LIMITED MOBILITY, 

SHE'S GETTING BETTER!!! 

Daddy & Lucianna coloring at the appt today!

Daddy and Lucianna playing with one of the toys.

Such a great patient!

We were expecting to hear that she definitely has JRA and that she needs to be moved to a nasty drug called, Methotrexate, since she has been really struggling to get around but here's what happened:

Dr. S said that she actually has NO inflammation on her joints and no fluid on them either.  Then he felt her other joints, feet, fingers, hips, shoulders, nothing.  He checked her lympnoids, heart and back...everything looks good!  He asked her to walk with him while she held onto his fingers...much to our surprise, she did pretty good.

I must have had a "deer in the head-lights" look on my face because I was in such disbelief!  We can't understand why her behavior (non-walking, crying in the night, bent knees, limping and difficulty sitting on the floor, etc.) does not match her physical exam of no inflammation or fluid in her joints.  What the hay????

Dr. S said that joint pain is very painful and somewhat traumatic for such a young child.  She could be experiencing some muscle atrophy due to her inactivity for so long while she was having this flare up.  Basically her muscles are weak from non-use.  She also could be experiencing "fear".  She could conceivably be "fearful" to put weight on her legs or walk because she knows how painful it has been the past 30+ days.  He says it could take a couple of weeks or so for her to regain her strength in her legs.  He asked if we had the ability to go to a pool and get her exercise that way - we were happy to report that we did have a pool membership.  :)

So we said, "So you don't think it's JRA?"  He said, "I just don't know.  She looks great.  She has made a huge improvement in 30 days.  I see that improvement and you don't because you see her everyday." I said, "So the Naproxen apparently seems to be working?"  He said, "Yes, appears so, and this is about the time we see improvement with that drug, between the 4-6 week mark."  As far as he is concerned, this very well could be Transient Synovitis.  What is transient synovitis? 

Basically, TS is a condition that occurs post viral (she was suspected to have had Mono one week before the arthritis symptoms presented itself).  So in TS, the virus settles in the joint, most times it's the hip but it can be the knees.  Typically it is resolved in 4-5 weeks, we are at week 7.    If we move forward and it definitely appears to be TS, the only lasting affects are that she may find she has arthritic problems in the future when she has a cold or virus, but there are no long term affects or damage, and the arthritis problems don't persist except when she's not feeling well.  She may even get sick and have no arthritic problems whatsoever.

So do we think it's Transient Synovitis?  Possibly, not sure, but things look very, very promising for that. What we DO know at this point is that she is getting better and as long as she continues to show improvement, we don't need to go back for two or three months.  When we do go back, if she's completely walking fine, the doctor will slowly wean her off the Naproxen and hopefully by fall she will be back to her 3 year old self!

This evening, she is getting around, but still whinny about it and definitely struggling, jelly bean bribes have really worked wonders to get her to walk. :-)  The doctor has told us to try to encourage her walking but if she won't do it, go ahead and carry her.  He also wants us to use language around her that she picks up on like, "The doctor says you are all better!" and other language that makes her think she is not different, but just like other kids.

We will keep you all posted but please continue to send the good vibes, prayers and all the positive energy this way! 

I hope this is the end to this bad, bad dream.  I am so excited to get my old life back...one that's full of trips to the park, moonbounces, car rides to VA and NY and DANCING!!

Much love,

Lucianna's-oh-so-happy Mommy!

Appointment moved up to tomorrow...


All -

Update on our appointment visit:

Lucianna had a rough weekend and is definitely struggling more than we've ever seen.  Her sleep is poor at best and her mobility is minimal, if at all.  I wish I had something better to report. We've been able to get an appointment for tomorrow at 1pm at Hopkins, instead of waiting until next Tuesday, thank goodness.

Wish us luck.

Love,
Lucianna's Mommy

Heading back to the doctors...



Dear friends and family,

(**Video and pictures attached for those receiving the email alert - you may need to watch online instead.)

I am sorry to have to report that since returning from New York on Sunday, Lucianna has gotten worse each day.  Today, I was unable to get pants/shorts her because when she woke up this morning, her legs were in a locked, bent position.  I foolishly tried, but quickly realized that she could not flatten her legs out. 

Monday to Friday of this week...

During the first half of the day - she is unable to walk, stand or put any weight on her legs and requires being carried around.  Mid-day she is able to walk more but is hobbling like an old women or a kid with a full diaper.  On Wednesday, she was complaining of two fingers hurting and not able to make a fist, although she hasn't complained of that since, thank goodness.  As of late, when she is able to walk, she needs to hold onto a table, wall, or anything to help her get from point A to point B and has been caught wincing when her leg slips into an undesirable position.   It is becoming more apparent that her hips are causing her a lot of pain now as I see this just based on the way she walks.  I think our bad days are starting to out-number our good ones, so we want to get to the doctor before she gets any worse.  We emailed her doctor late last night and shared our concerns.  He wrote back very quickly and stated that he would like to see her next week.  Unfortunately, his first available appointment isn't until Tuesday, 7/31.   Sigh.  I am hoping they get a cancellation and can get us in earlier. 

Instead of going into all the possible next steps for treatment,  I will reserve that for my blog after our appointment at Hopkins.

Many of you have expressed to me how incredibly helpful it has been to see Lucianna in the videos and how it helps you to visually understand this illness. The video below is not easy to watch, but trust me when I tell you, that even though she looks this way, she is having fun and still "being a kid".

This video was taken tonight.  This is what I call a "not-so-good day", since she didn't really walk all morning and this is her walking in the evening.  You can hear her ask me to "carry her" in the beginning of the video and at the end you can see she still has that awesome laugh! 

I wish I could truly express how tough it is to carry this 32lb child everywhere.  I so appreciate our wonderful nanny Kylee who does it without complaining.  I have a daily, consistent back ache...I want workman's comp!

Well, let's end on some good notes:  As you know since the pain has really started to bother her in the night, she's been not only reluctant to be alone at any time, but also desperate to sleep with us.  She literally has not wanted me to be in the kitchen, if she's in the living room which is about 20 feet away.  She wants me right there with her.  Bedtime has been incredibly hard. I decided to rearrange her room, get her in a big girl bed and give her Bella's old fish tank sound machine to "change it up a little".  It has worked wonders. She is sleeping soundly right now, alone...with ocean sounds playing.  I know she will call out for me in the middle of the night as usual, but it was good to be able to get her to start out in her room.

This weekend we are going to get the "real-deal" - a full size bed since her cribs converts to it!  I LOVE THE SMILES!  

We will update you all if anything changes, but right now, 7/31 is the next step.  

I love the matching cheek bones...other than that, they are as different as night and day.

Thanks for reading, for following and getting alerts via email.  It means a lot to us to know you are all interested and staying informed.

Love,

Lucianna's Mommy

New York - It must be the water!

Hi everyone,

(***There are pictures and video with this post that may need to be viewed online rather than in just email.)

Well Wednesday is here (just barely), and I am happy to report that our visit to NY was both therapeutic and just plain fun.  The "water" not only makes the bagels so good but may be responsible for giving Lucianna some "good days".   We had two days at the beach with the grandparents, one afternoon at Aunt Nancy & Uncle Manny's backyard pool and lots of time with friends and family.  Lucianna absolutely loves collecting rocks at the beach and digging in the sand.  Bella is turning into quite the swimmer and I think she'll be swimming on her own soon!  Thank goodness for their Daddy...if I had my way, they would be in life jackets until they are 30.

Water, Sand and Family - Nature's medicine!

 

Hi everyone and happy almost hump day!  

**If you signed up for the email alerts and are getting this via email, there is video in this post that you may not be able to see unless you go to the blog page on the web.

What does this illness look like? (Pictures & Videos!)

**Please read archived posts for a history of how this began...

Happy almost Saturday everyone! (Only one more hour 'til midnight.)

I am ready for the weekend, that's for sure.  It's been a long week, and I have a burning desire to just be with my children.  During the day at work when I check in with Kylee, (our nanny), I wait anxiously for her responses to my text messages asking how Lucianna is doing after getting her meds and breakfast.  The past few days, her responses have been, "she's requesting to be carried a lot" or "she's sitting more than normal" or the text I received Tuesday said, "she hasn't walked at all today", {it was 11am}.  The past two days she has seemed the most active between 5pm-7pm but still struggles during the day with comfortable mobility. She has had three not-so-good days in a row this week...I really hope tomorrow is makes up for all those and is a great day!

July 4th - Just another day...

HAPPY 4th OF JULY!

So we have lived in West Virginia for over five years now, I am still amazed at how much "country folk" love their fireworks.  It has really been July 4th around here since mid-May and somehow I don't see an end in sight.  Just what we need, crazy drunk mountain men with fireworks!

Aqua therapy to the rescue!

So, I came home from work today to find that Daddy took the girls to the public pool by himself.  I don't know that I would have attempted that activity on my own, but he often surprises me.  It never fails that right when you get into the pool, one of the girls has to go to the potty.  There have been many times when he has texted me pictures of him and the girls at a chinese food buffet.  He knows I won't go to a buffet (for many reasons), so he takes the girls as his date!  I wonder if he is using the girls to pick up chicks?

How it began...

What is JIA/JRA - Web MD 

What is JIA/JRA - Kids Health 

Please take 5-10 minutes to read about this disease by clicking on either of the above links or reading the summary below the posts at the bottom of this page.

This blog is to keep our friends and family updated as well as
share information with other families going through this.

Lucianna, (lu-see-aah-nah), 3 years old, is our youngest of two daughters, our oldest daughter is Isabella ("Bella"), who is nearly 5 years old. I chose the background for this blog because Lucianna will do anything for a jelly bean!

(Some prior history on her for other parents reading who may be able to find some commonalities:)  As an infant Lucianna had food allergies to breast milk despite my efforts to eliminate offending foods. No elimination diet would work and I had to give up breast feeding at about 10 months. Lucianna was put on a special hypo-allergenic formula, (Elecare), for infants with food allergies and it worked great. She was eating normally by 14 months old, drinking cow's milk and eating the recommended table and jarred food. We slowly learned that she had a speech delay as a toddler but it was remedied with a great speech therapist between ages 18 months and 2 years. (As with anything, we were very swift in our action to get her help.) At 2 years old, her speech was considered advanced for her age. We were thrilled!

That leads us to current: Up until June 7, 2012, she was a very active child with no prior health concerns. On Memorial Day Saturday, May 26th, she had a fever of 102.3 with no other major symptoms. Worried that perhaps she had an ear infection or strep, and that we were headed into a holiday weekend, I chose to take her to urgent care.