And we wait.

blood work.

it's a topic that our almost 5-year-old can very matter-of-factly tell you about.

{which, kinda breaks my momma-heart. he really shouldn't know this much about hospitals, doctors, needles, and blood}.

Often his first sign with his juvenile rheumatoid arthritis is fatigue.

well, it's back.

he's exhausted.

really, really exhausted.

so, we increased his medicine to the maximum dosage.

and now we wait

and pray.

wait for test results.

wait to see if the medicine will work.

wait and pray.

wait, pray.

and trust.

--------

He will shelter you with his wings. 

His faithful promises are your armor and protection.

Psalm 91:4

Another JRA update

Sweet Grant.

He's my favorite-four-year-old.

{although he will quickly tell you he is four-and-a-half}!

 he's changing from preschooler-to-little-boy right.before.my.eyes.

he's playing with his tractors less and transformers more.

his logic abilities astound me and his eating abilities seriously surprise me!

he's funny and extremely observant.

{and wakes up with his knees hurting almost daily}.

his juvenile rheumatoid arthritis has taken us on an almost-year-long-journey so far.

last week we had another appointment with the really fabulous rheumatologist.

it made me so, so thankful.

so thankful that we walk into the children's hospital instead of push him in.

so thankful that we turn left towards rheumatology and not right towards oncology.

so thankful that three small pills keep his joint pain and fatigue under control.

so thankful that he has no more swelling in any joints.

{no more swelling!!}

about his knee pain?

the rheumatologist said that it's actually a good sign - meaning that when we give him the medicine, the pain goes away.  it's kind of the best-case-scenario with JRA.

so, good news.

for now, it's status quo.

three small pills and lots of prayer for remission. i can handle this. 

so, so thankful for a very manageable, very treatable disease.

and so, so thankful for my sweet four-and-a-HALF year-old.

grant owen, 

you

are

so

prayed for.

Blessings.

it's Tuesday.

and I'm kinda getting over the migraine-of-the-century here.

So thankful,

so very, very thankful!, 

that at least Matt's schedule was flexible enough to step in and help care for the kiddos a lot over the past couple of days.

so, thanks to some naps, a great Nurse Practioner who stayed after hours to give me some emergent migraine medicine, and a lot of prayer, I'm feeling functional at least. thank goodness!

{on another note...}

 

...for those of you who have followed Grant's journey, you'll know that our favorite-four-year old was diagnosed with systemic juvenile rheumatoid arthritis last spring.

He had a tonsillectomy in August to try to help his extreme fatigue level.

at a follow-up with the ENT yesterday, we are so, so thankful to say that although he had the worst-tonsillectomy-recovery-ever, his mouth has healed fabulously.

He is now back to his three-times-daily NSAID for his JRA.

and is doing great.

really, really great.

for which we are really, really thankful.

even over the last few days as I've battled this migraine,

I've been so reminded that even our health is a blessing.

that I think our family will never again take for granted.

  {a four-year-old who is not complaining of joint pain? big, big blessing.}

{a 2-year-old who's not in the hospital with toxic shock syndrome? big, big blessing.}

 Grant's future with JRA?

 we're staying status quo right now with his three-times-daily meds.

see the ped. rheumatologist in about 6 weeks.

and, as always, we pray.

a lot.

for his health. 

his heart.

and we count every.single.day. that doesn't include some health crises

like emergency calls to the ENT or big, swollen, red, painful joints.

a blessing.

-------------

grant owen.

4 1/2

Tonsillectomy and JRA issues

This is pretty much how we're feeling about

juvenile rheumatoid arthritis 

these days.

our favorite-four-year old...

...is getting his {crazy huge, thought-to-be-fatigue-causing} tonsils out this Friday.

His consult with the ENT

{who has a special place in our medical lives 

after diagnosing Grace with toxic shock syndrome in May!}

went really well.

Until he saw on the chart that Grant has received the official JRA diagnosis.

and that he takes a NSAID 3x/daily.

And we realized that a NSAID carries increased bleeding risks.

Which, clearly, we do not want going into surgery.

So, for the next {at least} two weeks,

Grant will be JRA-medicine-free.

{I'm already feeling the need to ask you to pray for us!}

We accidentally missed two out of 5 doses of Grant's medicine a few weeks ago.

And Grant's knees immediately were swollen, warm, and painful.

He was extraordinarily fatigued.

and back to complaining of leg pain.

So, this momma is understandably a bit hesitant going into two weeks of zero arthritis medicine.

Our rheumatologist has given us a few options if worse comes to worse

but it'd mean steroids.

So, we're praying for the miraculous.

and also praying for Divine kindness, patience, and understanding 

in the mean time.

So our favorite-four-year-old can {as quickly as possible!}

get back to his happy, easy-going, mud-loving self.

Thank-you, again, for praying with us.  

------------

I've asked for prayer for Grant so much on this little blog world of mine.

Can I pray for you?

Leave a comment with your prayer request, and I will pray for it, regularly, over the next several weeks as I pray for Grant and his JRA and tonsillectomy.

Let us then with confidence draw near to the throne of grace,

that we may receive mercy and find grace to help in time of need.

Hebrews 4:16

Awareness.

July was Juvenile Rheumatoid Arthritis Awareness Month.

As the month has gone on, and Grant got the "official" diagnosis,

 I've thought a lot about how our lives have changed since he started having JRA symptoms.

My normal laid-back self flinches at Grant rubbing his legs. 

When he looks more tired than usual, I start praying.  

and analyzing.  

Did he just go to bed too late? Or is the inflammation returning?

I glance at his knees when he's in shorts and find myself comparing for swollen-ness.

He's had more blood draws than a 4 year old should, 

and knows way too much about doctor's visits.

{she's going to wiggle my arms mommy! Then I'll walk down the hall really fast!}

However, all in all, the Lord has protected our sweet Grant over the past several months.

 my heart still cringes at what the diagnosis could have been.

Praising the Lord for a very manageable, very treatable disease!

And, after spending time at a very high-tech children's hospital,

I'm so much more aware of health issues in children now.

How if a kid is kinda cranky in Sunday School class,

they may not just be being difficult.

They may have awakened with swollen joints and 

pain beyond what a child should know.

How if a friend seems kind of flustered and overwhelmed,

her inside may be aching for her child.  

Even if the prognosis is good, 

seeing speciality doctors and super-tech hospitals is a lot to process.

Awareness.

Awareness that we all deal with our own difficulties.

That there's more to everyone than what we see.

And awareness leads to compassion.

Compassion for hurting kids.

Hurting mommas.

Awareness that we all, 

{4-year-olds with arthritis, 80-year-olds with heart disease}

need help, healing, and hope.

Hope for this life.

and eternity.

...I have put my hope in the Living God, who is the Savior of all men...

I Timothy 4:10

Our week.

Happy Friday!

Our week.

{in cell phone pictures!}

Loving LOFT's sale racks right now.

{taking photos for BFF approval}

And Pottery Barn Kids' sale racks!

{only lived 2 years with out a bed skirt on our Sweet Girl's bed.  

Who knew how much better it would look with one?}

How the Sweet Girl and I made it through a grocery trip.

{Yes, those are froot loops. The girl loves them. Seriously. loves a little too much}.

And, from the grocery trip.

"As is" should not appear on meat.

And Grant.

  Our sweet, enthusiastic, easy-going 4-year-old.

  

Who now officially has Systemic Juvenile Rheumatoid Arthritis. 

After months of doctor appointment, blood work, x-rays,

and a whole lot of prayer,

it seemed a bit anti-climatic to get the official diagnosis from the doctor.

But, we know now how to pray better,

and are thankful that this diagnosis didn't include previously-said words like leukemia.

{oh, my!}

On a positive note, 

Grant has no more swelling in any of his joints!

Full mobility in wrists and ankles!

{for the first time since our original appointment in February!}

and a 50% chance of remission.

Yes. Please, Lord, remission.

Praying.

Grant.

Many of you have followed Grant's journey over the past several months. 

Praying with us for protection and healing from juvenile rheumatoid arthritis.

Today we have a routine appointment with the pediatric rheumatologist.

{Really, after months of hearing spinal tap and abnormal in medical conversations about Grant, 

nothing really feels truly routine for this momma!}

We're expecting good news, praying for good news.

But a part of my momma's heart always get a bit nervous walking into a 

super-super-high-tech children's hopsital.  

with MY child.  

seeing bald babies pulled in wagons, 

I hold Grant's hand a bit tighter, pray a bit harder, and walk to the doctor's office a bit faster.

We've really had a great two months with him.

The NSAID is working!

The fatigue is almost completely gone.

He's only complained of leg pain on a couple of occassions 

{when we've accidentally missed one of the three-times-daily doses, or when it's raining}

And there's been very little swelling in his knees.

As I tell the doctor all of this, I pray for good news.

And, as always, I pray for Grant's heart to be protected.

Physically. Emotionally.

Spiritually.

More than Soccer

Grant.

{my favorite four-year-old}.

He takes a weekly soccer class that he loves.

{loooooooves!}

He loves to kick and run and throw and run some more and then run some more!

{Mommy watch this I'm going to run sooo fast even faster than Coach Ben!}

Today was the last day of the spring session, 

and at the end of the class Coach Ben spoke with me.
He recommended Grant move up into the 

{invitation only!}

advanced 4 year old soccer class.

Yes, I know it's "just" a 4-year-old soccer class.

But, this is my sweet, sweet four-year-old.

My sweet child who, just five months ago, was lying on the couch complaining his legs hurt.
all.day.long.

Who woke up in the morning shuffling like an 80-year-old man.

Who started to refuse to walk his legs hurt him so badly.

 In my original post about Grant, I said we were praying that if juvenile rheumatoid arthritis were indeed the diagnosis, the Lord would protect him.

Five months later, he's kicking and throwing and running!

{Willingly, happily, and, apparently, well!}

My momma heart is happy tonight,

and I'm praising our Sovereign Lord for His protection over Grant and His provision for Grant's medical care.

And I'm going to keep on praying so that, Lord willing, 

Grant can keep on kicking and running.

{maybe, someday, even faster than Coach Ben!}.

Rough Day

 It was a rough day around here for our favorite four year old. 

For the first time in weeks, he complained of his legs hurting.

All day long, he barely walked.  

He laid on the couch, holding and rubbing his knees and ankles.

 {My legs very don't feel well, mommy}.

My heart broke for him.

Praying that tomorrow is a better, more pain-free day for our sweet Grant.

After the Appointment Update

We're all pretty excited about the doctor's appointment Grant had today.

Just absolutely fantastic news!

no more swelling in his wrists, knees, or ankles.

Full mobility is back in his ankles!

His labwork is great.

{except for one something-or-other level that the rheumatologist didn't seem too concerned about.  We might repeat that level in 2 months, but for now, I'm choosing to not google it.}

We're staying pretty status quo for now:

same non-steroid anti-inflammatory.

four milligrams, three times a day.

return in two months.

My main concern for today's appointment was how fatigued he still is.  

There could be several reasons, but we're hoping that his stamina is just pretty low from how sick he was for so many months.

So, basically, we get him outside a lot to play this summer.  

{I think we can handle that.}

After seemingly endless doctor's appointments that included spinal tap, leukemia, meningitis, sepsis, and toxic shock in the discussions, it.was.fabulous. to walk out of the doctor's office with a 

you're doing great!

from the doctor. 

So, now, hopefully, I can blog about lighter things. 

Like how we're out of Diet Coke and I'm dying for one.

Thanks for praying with me, friends. 

The JRA continues

These two little kids have been keeping us busy recently!

{busier than usual!}

Here's what's going on with the oldest G:

 

Three weeks ago we visited the pediatric rheumatologist at Riley Children's Hospital.

The absolutely fantastic news from that appointment is that his blood work came back beautifully.

His white blood cell count was {finally}completely normal.

{A normal WBC count almost entirely rules out the possibility of leukemia}.

 We have been giving him a new medicine for the past 2 weeks.

Basically the strongest non-steroid anti-inflammatory he can have.

It.is.a.miracle.drug!

The pain, the complete fatigue and exhaustion - it's all better!

We are so happy to get our cheerful little boy back.  

He's happy, cooperative, and sleeping only slightly more than normal.

We are hopeful that this medicine will keep the JRA symptoms under control, so we don't have to move on to a stronger treatment!

We return to the ped. rheumatologist tomorrow afternoon.  

We are anticipating getting the official 

Juvenile Rheumatoid Arthritis 

diagnosis.

 I am also anticipating and hoping to get a few more details about this disease and the future treatment plan.

For now, we are blessed that we have an excellent doctor only 40  minutes from us, that Grant will *take* this new medicine fairly easily, and that it's seeming to truly help.

{To be honest for a moment?}

I could pretty easily get pretty freaked out about what the future may hold for our sweet boy.  My heart aches for him...I would love for him to avoid more pain, more stiffness, more exhaustion, more medicines that may have serious side effects.  I would love for him to not have to take medicine 3x a day at just 4 years old.

But, I'm trusting.  Trusting that His plan is perfect, that HE will keep us and love us and guide us.

And keep Grant and love Grant and guide Grant.

Even in the middle of a degenerative disease.

Even in the middle of whatever the future may hold.

And that even through it all, good stuff will happen.

For His glory.

Now therefore stand still and see this great thing that the LORD will do before your eyes.

I Sam. 12:16

 

Our Favorite Four Year Old

 

We've had a lot of people telling us that they've been praying for us recently.  And, yes, this gets us all as excited as it does Grace.  We are also extraordinarily humbled that you would go before the throne on behalf of our favorite four year old. 

For the past months we've been dealing with some health issues with Grant.  

Fatigue, leg pain, swollen lymph nodes, random high fevers.

We've been working with a pediatric rheumatologist at Riley Children's Hospital.  

We saw her again today. 

Grant was a bit shy at the doctor's office...

...but my ipod, some special candy, and a green shake later, we all survived the day.

No "official" diagnosis, although the dr. did say that it's really looking like 

Systemic Juvenile Rheumatoid Arthritis.

We got more blood work done today, with the special "magic" cream on his arms that makes it not hurt 

{as much}.

Apparently we're ruling out some muscle diseases and other freak things...and we'll go back in 2 weeks.  The doctor reassured that she does not think this is a malignancy, although the another CBC that has a normal WBC count will be reassuring. 

because, you know, us moms? we worry.  

you do not want to know the results you get if you google Grant's symptoms

however reassuring, the doctor did mention discussing a bone marrow biopsy in our return visit in 2 weeks,  to completely rule-out scary stuff. we are praying hard for nothing scary.  seriously hard.  I can almost not even write about the scary stuff.  

So, pray hard with me?  The need for a bone marrow biopsy is contingent on today's blood work and his symptoms over the next couple of weeks.

We also have a new medicine, another NSAID. Our biggest issue right now is Grant's level of fatigue...the poor guy is tired, and asking to go to bed, even after sleeping for hours and hours and hours.

{the medical reason is the sedementation rate, which measures inflammation.  his sed rate is high, presumably from the JRA, which makes him exhausted all.the.time.  we'll get his recent sed. rate back tomorrow}.

But, we are thankful that the last medicine he was on was a miracle drug for about a month.  

We had our happy, easy-going, cheerful little boy back!  

We are praying the new med works even better.  

That his four-year-old little body will be free from pain.

And that the Lord would use this in Grant's life, to ultimately draw him to Himself.

Thank-you for praying with us and for us.  

Our hearts ache for our sweet little boy,

and it is humbling and encouraging in so many ways to know your hearts ache with ours.

Thank-you for loving Grant through your prayers.  We are all so, so thankful for them.