You Put the Lyme in the Coconut & Drink it All Up!

The girls had a 2 hour delay this morning, as the teachers had In-Service meetings.  Unfortunately, they didn't get the chance to sleep in or take it easy at all.  J had an appointment with the Pediatric Rheumatologist regarding her JIA up in the city at 9:30, and I wanted to give us 2 hours to get there as we would be hitting the tail end of rush hour traffic.  L had to catch the bus, which comes here more than 1 1/2 hours before the start of school.

You would have thought that I had masterminded this evil plot to get L on the bus against her will this morning, by the way she was behaving.  I must have heard "It's not FAIR!" at least half a dozen times before I left.  My mother, who was the lucky one who got to actually get her to the bus, told me that L was quite pleasant the entire time she was there this morning, so apparently she had an attitude adjustment after I left!

J and I had an uneventful trip up to Children's Hospital.  Apparently the GPS in the Subaru actually routes you around the worst of the traffic, so we had only about 15 minutes of stop-and-go.  We were listening to "Snap Judgement" podcasts, so it was not an unpleasant ride.

We saw a new Rheumatologist this time, since it has been more than 3 years since we've been there and J has been in remission that whole time.  This Dr. remarked that viral illnesses can cause flares sometimes in kids with JIA.  J has missed 7 days of school since Feb for GI viruses, so I guess that correlates.  She did say that it is a bit unusual to have random joint pain or stiffness that comes and goes with JIA, so if she would have another episode of joint pain/swelling, she would want to get a Lyme titer right away to rule out Lyme Disease.  That was interesting to hear, as her Lyme titer was questionable when she was first diagnosed back in 2010.

J and I stopped briefly at Krispy Kreme for donuts and coffee on our way back to town.  The excuse from Children's stated that she could "return to school/work on 4/12/2016."  She was hopeful for a minute that she could stay home the remainder of the day, and I almost caved as both girls are just about BURNT OUT with school at this point, but I dutifully dropped her off at the Middle School, a mere 1 1/2 hours late for school.

Well, I feel a bit relieved.  It is not a trip that I like to make on a regular basis, and I don't ever want to see J in the continual distress that she was in was she was first diagnosed.  The Dr. says that she has a 40% chance of outgrowing the arthritis eventually.  Perhaps we are already there and I just panicked a bit when I saw her swollen knee.

The house was cold when I returned home.  I have started a fire, and I've been trying to ignore the nagging gastric discomfort that started on the drive to the city.  I guess I should just give up and take some Zantac and try to relax.

Where's the Bear? #67

It has not been the greatest of days, even though it was a day off school for the girls.

The rest of J's blood work came in, and it looks like her JIA is flared up again, after being in remission for about 4 years.  I have an appointment in about a month to take her back to the Pediatric Rheumatologist at Children's Hospital.

This evening, after being downstairs for an unreasonably long time "getting ready for bed", L yelled up the stairs that the toilet was overflowing.  She is known for her excessive use of toilet paper, so I blamed her for that.  The toilet did not unplug, however, and it appears that whatever blocked it is blocking the entire line to the septic tank, making ALL FOUR of our toilets unusable.  JP, L and I spent almost 2 hours cleaning up toilet water from the floors of both downstairs bathrooms, and I have a load of towels and rugs running in the washer.  The plumber is coming late tomorrow morning.

SIGH.

During all of the excitement this evening, J snuggled up with her bear to read Harry Potter for the third time.  They are literally party poopers.

It is impossible to "Dog Whisper" Chickens

I had J home with me today.  Her school had a trip to an amusement park all day, which she was waffling about already, since she is not a roller coaster fan.  She came home yesterday crying with a painful, swollen knee.  I am concerned about her JIA recurring after nearly 4 years in remission, but that is for another post.  Last night, JP said point blank, "You should not go to an amusement park tomorrow and walk around for miles on that knee."

With anti-inflammatories in her system, she is feeling much better today.  I enlisted her help to sit on the veranda and paint the picnic table/benches.  They look great now!

 

While I had the green paint out, I decided to paint the door inside the barn that goes into the Chick-bit house.  The peeps and rabbit didn't seem to mind that I was working there, but several of the hens appeared completely put out.  They clucked and complained long and hard.

At first, I tried talking soothingly to them, like you might with a fussy baby.

Didn't work.

Then I "dog whispered" them.  You know that short, sharp "Ch!" that Cesar Millan uses to get the attention of the dogs he is training?  It works sometimes with my dogs, and I even use it on the girls on occasion.

Didn't work on the hens.

I yelled at them to "Shut yer corn holes!"

All that did was upset the peeps and bunny.

I chased them outside.

That worked for awhile, but they came back in twice as agitated.

I finally decided that the only viable option was for me to just paint as fast as humanly possible, and get the heck outa there!

So, it's not a great job, but the door is painted on the outside.  I need to clean and sand the inside of the door and varnish it at some point.

 

This has been just one more observation to prove that chickens don't have much in the brain department!

Good News!

I picked J up early at school today.  She had an appointment with her Pediatric Rheumatologist.  It was a long drive in the lashing rain and construction up to the Big City, and an even longer one home in the beginnings of rush hour traffic.  We received good news there today, however.  The Doctor told us that there was no need to schedule any follow up appointments unless J was having problems.  We are to continue the eye exams every 6 months for an indefinite period of time, but that only requires driving into the Burg...15 minutes vs. 75.

Hooray!

Number 15

J and I spent most of the day in the city today at the Children's Hospital. An MRI of her ankle last month showed swelling and inflammation from arthritis there, and is, we believe, causing her to run and walk with a very stiff gait.

Because of the success of the steroid injections in her knees last year, the Rheumatologist (and we now have a new one) recommended injecting her ankle. She also recommended doing the procedure under anesthesia because of how difficult the knee injections were for her.

When we checked in to Same Day Surgery this morning, the ladies at the front were initially concerned about the fact that J ate cherry jello at 8:30 this morning. They assigned her the number 15, and that is how they called us from the waiting rooms all day. Later on, the Pre-Op Nurse and Anesthesia Resident were concerned about a loose tooth. J was seemingly not concerned about much. She and I passed the time reading cards from Bella's Mystery Deck, and trying to solve the mysteries.

Everything went very smoothly. They even let me walk back to the procedure room with J, stay with her and hold her hand while she went to sleep, and kiss her before leaving for the waiting room. All this business is like a day on the job for me, and since J was at ease, I could be too.

Being at Children's again, made me extremely grateful (again) that my children are in such good health. A toddler recovering near J in the PACU had a bad accident with a cut and fracture swelling his arm to three times its normal size. I watched a young mother in tears as she waited to hear news of the infant that she had been nursing in Pre-Op just a couple of hours earlier. Back home, one of L's little friends was diagnosed with a fractured leg, and may not walk on it for 3 weeks.

After dinner, JP wheeled J in my grandmother's wheelchair to the bathroom, and she came out in tears. We applied ice, and put on a movie for distraction, but she was shaking with pain and had no relief until JP gave her some pain medication. This was very UN-like our experience last year, where she felt so much better right away that it was hard to keep her down for 24 hours as instructed. I rubbed her back, while JP read from "More Adventures of the Great Brain". She finally started to relax about 20 or 30 minutes after taking the medication, and we got her settled down on a little bed on the floor of our room.

Little L was distraught about sleeping downstairs by herself, so Kali's bed was moved in there to sleep with her. Musical beds all around!

This too will pass. In a couple of days J will be up and running around again. I just feel a bit guilty for making her go through this thing that hurt her...again.

Outing of the Week 1 - Klavon's Ice Cream Parlor

Another trip to the big city today to visit the Children's Hospital, this time JP was able to come along. Dr. H was a bit concerned about swelling in J's left ankle, especially since we told him that both ankles have been swelling on and off since our last visit in Feb. At this point, we are to watch it for another 2 weeks. If the swelling has not subsided, she will need to have an MRI of the ankle.

I have been very optimistic about J's disease course, since she hasn't had any pain or long term swelling since her knees were aspirated and injected in January. Today, however, the Dr. said it was likely to recur...the incidence of complete remission after the injections is apparently very rare. We will continue to hope for the best!

After our appointment, we decided to visit a nearby Ice Cream Parlor that we had seen featured on the local PBS station recently. You can watch it here, starting at 14:35. The girls had hand scooped ice cream cones, JP had a delicious strawberry milkshake, and I had a chocolate New York Egg Cream (milk, chocolate syrup and soda water...interesting). The building has beautiful art deco lights, original inlaid terrazzo floor, and an 18 foot long marble soda counter with iron stools in the shape of bottle caps. There are lots of interesting old bottles and memorabilia from when it was also a pharmacy, back in the 1920's. J asked if we could "come back a lot"? I think we can make it a tradition after appointments at Children's Hospital.

Rag Bag

Another weekend has come and gone. Where DOES the time go? I've just finished moving furniture for the second night in a row. I hope we don't make a habit of this! Went East yesterday for a lovely dinner out and shopping for a new recliner (to replace the one we have been borrowing from my Mother, which was replacing our old, mouse infested one). We ended up with OUT the lovely dinner, but WITH a new recliner AND couch. (It ends up that Roomful Express was having a 70% off Going Out of Business Sale.) The new challenge is to make it fit in our living room, which is limited by a wood stove and the stairway. We may FINALLY have accomplished the impossible!

My dear friend accompanied the girls and I up to Children's Hospital today, since she knew I was nervous driving in the big city by myself. The girls (including one of hers) were quite content to watch "Annie" on the drive to and from, and we enjoyed chatting. We received very good news today: J's JIA appears to be in remission at this point. We were given the go-ahead to discontinue her oral anti-inflammatories, and do not need to return until summer. The joint issues may return, but we'll cross that bridge when we come to it.

We stopped at Krispy Kreme on the way home for coffee (and chocolate milk) and donuts to celebrate the fact that I didn't get lost on the way there, did not lose the van in the parking garage, and made it home without incidence.

Today is Valentine's Day, by the way. L came home from Preschool with a bag full of valentines and candy. We delivered a few valentines for J after returning from the city. John handed me a stack of cards last night after we moved furniture and before turning in for the night: a valentine, my birthday card, and a mother's day card from last summer. I guess the pile of cards he had fell back behind his safe, and he just recently recovered them.

Home Fires

It has been cold this winter. Below freezing cold for days on end, with a respite of 35 degrees thrown in here and there. It has been lovely to keep a fire burning in the wood stove in order to keep the house in the 70 degree range, and know that my electric bill won't suffer because of it. I can usually start a new fire in the morning with the embers left from the night before, using the previous day's junk mail as tinder.

Since we were out all day, and there was no fire, the stove was cold and dead tonight. I tried unsuccessfully for at least an hour to get one started, but it would only smolder and smoke. Finally JP did his thing, and it is roaring again...but not in time for me to bask in the warmth before climbing into my cold bed.

Instead, I am warming my brain by munching Godiva dark chocolate in tiny bites, and feeling warmth in my heart thinking of the wonderful people at Children's Hospital of Pittsburgh that we encountered today.

J returned to see her Rheumatologist this afternoon for joint injections in her knees. She was dreading this procedure, which is the common reaction when you inform someone that they are going to have needles stuck in their knees. The procedure was planned down to the last dot on the consent form. The nurses gave J a stuffed puppy to hug during the injections. The Music Therapist had even been scheduled to help with diversion. She sang songs with J, including "Stinky, Stinky Diaper Change" (sung to the tune of "Twinkle, Twinkle Little Star"), "Jimmy Picks Boogers" (sung to the tune of "Jimmy Cracked Corn"), and an original composition about our dog and cats.

It is incredibly difficult to watch your child suffering and be unable to help. I am reminded often these days of my brother and sister-in-law, who spent many months in and out of the Children's Hospital several years ago when my nephew was ill. I asked my brother once, "How do you do it? How do you take him to all of these appointments and know that they won't all be pleasant, that he will still have a terminal illness? How do you go on?" He told me "I just do it. He's my son, and I do what I have to do for him."

No child should have to experience what so many of the patients at Children's do. No parent should have to watch their child suffer. But it happens. Life is not fair, as I tell my girls so often. The wonderful thing is that there are those special people who make the hard things just a little easier, with a stuffed toy, a silly song, a joke or even a hug. I feel extremely lucky that our situation is one of the better ones that walk through those doors in Pittsburgh, and I admire my brother and sister-in-law even more for their walk, which was incredibly more painful than ours.

So, with the powers of dark chocolate working their magic on my brain, and the cockles of my heart glowing, I will go warm my toes by the fire before dashing off to bed.

New Year's Resolution: Same Old, Same Old...

Whew! December was a busy month! Just days after returning from our R & R in Florida, Christmas arrived (ready or not), along with 8 extra family members who celebrated Christmas, Birthdays and New Year's with us. Now, 8 days into 2011, I have finally finished putting away the extra bedding and towels, taken down the Christmas tree, and baked a second Birthday cake. I was hoping to slow down a bit, but January is plowing ahead, regardless of my desires.

JP and I had Pre-Employment Physicals last week, which shocked me into reality. Soon our lazy limbo period will come to a close and our late nights, sleeping in, and afternoon naps will have to become a thing of the past as our jobs begin in 2 weeks.

J is deep into school already, and we are nearly caught up from vacation. She has testing with her Cyber Teacher next week, as well as another visit with her Rheumatologist. We had a brief spark of hope regarding her arthritis last week, when the Rheum. informed us that her Lyme Titer was positive. After confirmation blood work, we discovered today that it was a false positive, leaving us with no doubt of her diagnosis of JIA.

L was very excited to go back to Preschool this week. She has been a busy girl for the past 2 weeks, celebrating a birthday and 2 Christmases within 72 hours. We have Birthday Party II this weekend so that she can have the pink poodle cake she was hoping for.

New Year's Resolutions...did you make any? I just use the start of each new year to renew my efforts of becoming more organized and improving my time management issues. Speaking of time management...staying up late to blog is counter productive. Time for bed.

Happy 2011 Everyone! I wish you all the best in achieving your own New Year's Resolutions this year.

Just a few pics of our fun Holiday activities with family:

It Must Have Happened in Mexico

We just received the word today from a Pediatric Rheumatologist that J most likely has Juvenile Idiopathic Arthritis (formerly known as Juvenile Rheumatoid Arthritis). She has been complaining on and off of her knees bothering her since soccer in September and October, more regularly for the past couple of weeks.

J is the kind of child that does NOT want her boo-boos examined...never has. It took a long time for me to be able to actually touch her knees (I actually had to threaten) in order to discover that they were both quite swollen.

She is not disabled by any means. She continues to run and jump and play like always, just has trouble getting up and down the ladder to her bed on the top bunk, and is stiff and sore after sitting for a while.

I am feeling overwhelming guilt at this point. Primarily because I didn't push her to let me check her out months ago. I also have this nagging feeling that I might have done something wrong to make her more susceptible to this. Was it our vacation in Mexico 8 years ago? After trying to conceive for 3 years, we went scuba diving and couldn't drink the water, so drank other beverages, then returned home to find that I was several weeks pregnant at the time. Was it because of my irresponsibility in her early weeks?

Where to go from here? The Doctor tells us that it is good that only 2 of J's joints are involved. She will start with daily anti-inflammatory medication, then return for a follow-up in a couple of weeks. I am researching JIA...something I wasn't completely familiar with, although I had a sinking feeling since examining her knees that this might be the diagnosis. I am trying to find kid-friendly information to present to J as well. In the meantime, we are readying ourselves for some time in the sun down South.

Gotta escape this never ending blowing snow somehow!