Sunday, April 20, 2014

Happy Easter....and we have an idea....


Here are the kids this morning looking bright eyed in their Easter best....except #1 who looks tired after singing on Holy Thursday, Good Friday, and for Easter Vigil and then getting up to sing at 8 am Mass this morning. I think she's about ready for a break.

Ella is stronger and walking without assistance most of the time for the past two days. Her knees keep trying to buckle, but she's not letting them. Thanks for your prayers, we can definitely feel them.

I took her to the chiropractor this week, and at last someone had an idea for us! We're waiting to talk to the GP this week and see if he agrees, but at least someone has something concrete for us to check.

We're not discussing until we have something more concrete to go on, but here's a hint:


Monday, April 14, 2014

Her Name Is Ella

She looked over my shoulder earlier this week while I was blogging and sighed "I have a name...I'm more than a number." I explained to her about google and the internet and her own privacy, and she shook her head at me. "They're all praying for me with a number....I have a name."

And she's right. She does.

Her name is Ella.

If you're going to pray for her, worry for her, and help us look for answers....the least we can do is tell you her name.

I asked her to select a picture that she thought looked like her and she chose this one:

before the arthritis...before the scooter accident that knocked out her permanent teeth and broke her jaw...just her...strong and healthy. It's the girl she hopes to be again someday, and the person she still is in her own mind.

But I also like this one:

Older...stronger in so many ways...the bravest person I know.

She's been complaining lately that, even though she's crazy shy, she misses people. She's starting to feel a little cooped up here in the house and the few places that she can easily go.

So she's started a blog. Not much writing if any, just her artwork. She spends a lot of time drawing...she needs it the same way that I need to write...it's visceral to us.

If you have some time, stop by and tell her hi. Look at the wondrous things she creates.

I asked her what she'd like the world to learn about her and she shrugged and then said "I'm more than arthritis and weak legs. That's nothing about me."

She's right. She's not a number or the condition of her legs. She's my amazing girl, and I'm thrilled to be able to share her with the world.

Go here for her blog

Doodles

Sunday, April 13, 2014

I'm So Sucking At This

She fell in Mass today. 

I caught her, but she fell. 

We were walking up to Communion and she slipped/tripped on an umbrella someone left on the floor of our pew. I saw it just before she got there and didn't know what to do, and in my moment of indecision she went down. My mind isn't in this yet. I'm not practiced enough to spot the obstacles and either point them out or move them, and there's not much time for me to scale this learning curve.

The strength she was enjoying late last week has left her again. I don't know where it went, but I miss its optimism. 

She curled up next to me in church, and lifted her legs onto the pew with her hands so that they could curl beneath her. I leaned my cheek against her hair and let the tears spill down. I wiped them for a while, but it soon became pointless. I'm not sure why I spent time on mascara this morning as it was gone long before the readings were completed.

The small boys jockeyed for space on the other side of me, and the baby climbed relentlessly on and off of my lap. My husband kept glancing my way with this look of intense concern. Public displays of emotion make him uncomfortable, and I'm not very stiff upper lip at the moment.....I kept wanting to say "Stop looking at me in that tone of voice!" But I know it's not him....it really is me.

On mornings like today, it's all too much.

I can't be what they need because I'm so depleted, mostly because this thing we are fighting has no name. There's great power in being able to name the evil in your midst, and there is a strange kind of comfort there. It's one we don't yet have. I have researched and queried until I in longer know what words to search or questions to ask, and still our enemy is unknown.....and even more frightening because if it.


This afternoon a spring storm rolled through. As the thunder boomed the baby ran to me breathless with fear and said "What's that?"

"It's just the thunder." I told her.

She breathed out a contented sigh and said "Oh. Thunder. Yes," and was at peace. The next time it crashed, she startled and looked around for me. "Thunder." She said reverently, still jumpy but without the same anxiety. It had a name, and that made it better somehow.



That's all I want right now. I want to look at the shaky legs and my daughter's weakness and be able to say in hushed tones "It's only......." I want to call it by its name and take the fearful mystery out of it. I need to name it so that I can turn that energy onto more important things.

Friday, April 11, 2014

Better-ish?

After our unhelpful trip to the ER in which they ran no tests other than strength tests (asking #4 to push or pull against the doctors' hands) and the subsequent consensus that she didn't need physical help but a psychiatrist, we came home to regroup and figure out what our next step was to be.

Thank you to all of you for your help in brainstorming this. We have a list of things to try. (She's negative for Lyme disease, btw.) We're blessed to have a doctor who is open to suggestions, is willing to listen to wild theories, and finds it hilarious that I would crowd source this whole thing. Unfortunately, we have very little to go on as every test has come back normal except that her Vitamin D level is slightly low. With nothing to go on, we are holding on until next week to see where we are after the weekend.

So here's the new info:

After two days of resting and taking it easy, she's both bored and feeling better-ish. That's her description not mine. She woke up this morning a bit more steady on her feet and less wobbly. She spent the day pushing too hard, because she is just a 9 year old girl after all, and playing too much and is shaky again this evening. I have no idea if it's the rest, the time, or the paleo diet she's on, but she was stronger this morning....so that's hopeful. Right?

That's where we are tonight. I'll update you tomorrow.

Thanks for your prayers and good wishes. God bless you all.

Wednesday, April 9, 2014

Okay...So Now What?

Thank all of you for your prayers, help, and advice about what's ailing #4. We just got home from Children's Hospital....that's right, they sent us home.

After running more tests (including many that y'all suggested), they found nothing. She's completely strong and healthy unless she tries to stand up and then her legs collapse. That didn't seem to be a factor. We saw two neurologists, a rheumatologist, and the ER doc who came to the conclusion that it's all in her head.

You read that right....it's in her head.

They discharged her with a referral to a physical therapist and suggested that we find a psychiatrist. The doctors confessed that they had run out of ideas of what to test, and concluded that she must be imagining it....

because there's no way it could be anything else. My level headed, extremely shy, straight shooting, no drama kid is attention seeking....that's what the ruling was.

We disagree completely. The only question is what do we do now?


Tuesday, April 8, 2014

Crowd Sourcing an Answer for #4

Scottish Rite has declined to see our girl (age 9) because what's going on with her "doesn't sound as if it's related to her arthritis." I have all kinds of thoughts about this, but I'm trying to clean up my language. Our family doctor ran blood tests which have all come back normal. We're trying to figure out what to try next. (Our family doc is game for whatever we want to try.)

This seems to be progressing very quickly, so I'm crowd sourcing a brainstorming session here. There are no dumb ideas or questions (unless they really are dumb) so throw those ideas out here.

Here's the rundown of what's been going on:

Last Monday she was feeling fine. Except for the arthritis flare in her left knee, she was basically healthy.

Tuesday She complained that her legs felt kind of tired, but she was still moving fine.

Wednesday She said that her legs felt tired and heavy. She was still moving, but had a more pronounced limp than usual. 

Thursday She was still walking with a limp and had begun walking across the room from object to object instead of in a straight line. She complained that she felt cold but wasn't running a fever.

Friday Her temp was slightly elevated at 99.6. She was still limping and said her legs felt even weaker. That night, as she walked across the room, her legs buckled and she fell.

Saturday She spent most of the day on the couch because she was tired. Her temp was still in the 99 range. She was using her cane of and on for support.

Sunday She stayed home from Mass because her legs felt too weak to walk. When she did walk, she had to hold on to walls or furniture to keep from falling.

Monday We went to see our GP. She was unable to take more than one step towards him without my support under her arms. He tested the strength in her legs and said it was noticeably less than it should be. There was no new swelling in either leg or her back. He ran blood tests to check for elevated white blood cells (evidence of infection) and signs of muscle break down in her blood. All tests came back normal. He gave her crutches to help until we have answers.

Tuesday She is unable to stand without crutches or other support.

It's moving so quickly that I'm afraid she'll be in a wheelchair before much longer. I want to avoid this. Have any of you seen, heard of, or experienced anything like this? I'm looking for theories, guesses, and/or anecdotes here.

If she were your daughter where would you begin looking? Neurology? Muscles? Infectious disease? Alien attack? Throw it out there. Time is ticking and we don't know if that makes a difference in the end...but it could.


Please feel free to share and link to this post, the more the merrier. We need lots of eyes and lots of ideas.


Edited to add: It is 8:30 am and we are leaving for children's hospital of Dallas. Thanks for your input. I'll let you know what we learn.

Sunday, April 6, 2014

Crying Uncle

The past few weeks have been hard. First with a crisis pregnancy, then the baby's death and a week later miscarriage....and now #4 is worse.

Her rheumatoid arthritis flared up a few months ago, eventually spreading to 14 joints in her legs and feet. The holiday of remission was over and we resumed her weekly shots and medications. A month in and she was down to only her left knee, foot, and ankle in flare...stubbornly so. Her knee is obviously deforming. I can see that already even after a few weeks. It's hot to the touch and so fluid filled that the contours of her kneecap have disappeared. She has developed a noticeable limp and I keep praying that it's due to the tightness of her knee joint and not because the wild growth from inflammation has made her left leg longer than her right. It is shocking how quickly deformities can happen in her young body.

Then this  Wednesday she took an unexpected turn for the worse. It was no longer her joints which were causing pain, but the weakness of her muscles. She teared up that morning and said her legs didn't feel strong enough to carry her. I looked for new signs of swelling, but saw nothing new. By Friday afternoon she was holding the walls and furniture to walk anything further than a few steps, and I could see them buckling underneath her. That evening they gave out completely and she collapsed in a heap on the ground. While she hasn't fallen again, she remains unsteady and her temperature is elevated but not quite feverish.

What is going on? Is this more arthritis or something new? Is it a side effect of her medication or is her body deteriorating? I have no answers, only questions....only fears and uncertainties.

We see our family doctor tomorrow, but I know he will be stymied too. The visit to him will just be a formality. He has been as upfront about his ignorance of JRA as he has been willing to learn. We have become a team where it concerns her healthcare, trading information and resources. We are both running to gain knowledge about her disease, but we always seem a step behind. 

Once he has seen her, we can schedule an appointment with the rheumatologist. With luck we will see her within the next two weeks. Then will begin the testing and work to bring her back to health.

And we're tired....the whole family but mostly me and #4. Her from her disease and me from the emotional an physical toll of the past few weeks. All I want is a few weeks of calm....time to heal body and soul.

I've been running on fumes for a while now, and need desperately to recharge or I won't have the strength to be the mom they all need for me to be, but especially the mom she desperately needs right now.

How I long for the quiet of an empty church with no company but my Creator. I need the strength to be weak enough to lean into His comfort and be still. I'm longing for comfort in the midst of the storm....all I want is a moment of peace in which to cry uncle and tell Him I've had enough, that this is my limit and I can't take any more. To hand it all over to Him and let Him carry us all...if only I could could catch my breath long enough to say it.



**Please don't use this as an opportunity to promote your favorite diets or health fads. Do you really think there's a chance we haven't tried them yet?