John's Arthritis

As you all know, we've recently discovered John has JRA -- juvenile rheumatoid arthrits. We have a rheumatologist we visit every couple months (or more often if needed) down at Riley Children's Hospital. I've gotten a TON of questions on what all is going on with him, so I figured I'd start from the beginning ...

Back in June, John had ... let's call it an episode ... where he began limping. I talked to his pediatrician who said to "watch him" over the weekend and bring him in that Monday if it didn't go away. His limp didn't go away. In fact he got to the point that he literally could not stand up straight or walk. Any time he'd try to run after something, he'd fall and sit there holding his knees while he cried "Mama, it hurts. It hurts!"

Over the next three weeks, we saw three different pediatricians and made a couple trips to the emergency room. Blood work and x-rays were done. John's regular pediatrician sent us down to a pediatric orthopedist at Riley Children's Hospital who diagnosed John with "synovitis" which is basically just an inflammation of a membrane or the fluid around a joint. He thought John had it in his hip and said it would go away within 4-6wks and not to worry. We headed home with hopeful spirits, and in about two weeks all of John's symptoms disappeared. He could walk, run, and play just like any other normal 2yr old.

Less than a month later, he started that same limp again. I immediately touched base with his pediatrician and the pediatric orthopedist to find out what we needed to do next. He was seen right away by his pediatrician, and we were sent to Riley Children's Hospital again ... this time to see a pediatric rheumatologist. Right before we went down to Riley, John had another really bad episode that was worse than the first. We took him to the ER, and they put him on a steroid as an anti-inflammatory. Unfortunately, the steroid masked anything the rheumatologist could have seen, which put us one step behind on treatment and diagnosis. The rheumatologist (Dr. Chira) started John on ibuprofen three times each day to see if that would help the inflammation, rather than the steroid. He also referred us to a pediatric ophthalmologist down at Riley because juvenile arthritis can also affect the eyes. (Thankfully, John's eye exam was perfectly normal, although he does have to be seen by the ophthalmologist every 3mo.)

The ibuprofen seemed to help for a couple weeks, but then John began to continually complain of pain in his knees again. Another call to Dr. Chira (this was early October), and Tylenol was added to John's daily meds. He was then taking ibuprofen three times each day and Tylenol in between each dose. As you can imagine, getting a toddler to take a minimum of six doses of meds every day was a challenge. On top of the medicine fights, John had other symptoms that would come and go -- high fevers, head-to-toe rash, slight limping, severe pain, vomiting, swelling, and uncontrollable shaking/chills.

His last "flare" as it's called with the arthritis (about a week ago) had him in so much pain that he could not walk, he spiked a fever of over 102, his knees were so swollen they were the size of softballs, and he shook so hard you would have thought he was having a mild seizure. The crazy thing was that it disappeared as fast as it hit. Friday morning he was fine and dandy, Friday evening the flare hit, it lasted through the night, and come Saturday evening you never would have thought anything had happened!

I called Dr. Chira first thing Monday morning, and he wanted to see us that week (Wednesday was the earliest they could get us in). We made another trek down to Indianapolis, and of course by then all of John's symptoms were gone and the doctor again could see very little. He did notice that John refuses to straighten his legs all the way, even when he's walking/running, and that John turns his toes slightly inward when he walks/runs. Dr. Chira referred us to have an MRI done on John's knees to find out exactly what is going on in there, and he also wants John evaluated and seen by a pediatric physical therapist.

Dr. Chira took John off the ibuprofen and put him on the generic version of mobic for the inflammation. It's WAY easier for him because it's just once each day rather than three times each day. He's also on a stomach protectant that was prescribed to him a couple weeks ago because the mobic can cause severe upset stomach. Dr. Chira said John can continue to have tylenol as needed for pain management, but even that he hasn't needed nearly as often as he did before.

The pediatric physical therapist has a 3-4mo wait list right now, but I am working on getting him into Indiana's First Steps program. They will get his primary evaluation done and start his plan of action for therapy, and hopefully by the time he's three (since First Steps only goes up to age 3), John's name will be up on the wait list for the physical therapist. (Jake is also going to be seen by the First Steps program for his leg/foot, too, but that's another story lol) We're still trying to get the details ironed out for John's MRI -- it's not easy to find a place that accepts our insurance AND will do an MRI under sedation (he has to be sedated for it because he's so little and would never hold still, especially his legs). Hopefully that falls into place very soon.

Once John has his MRI done, Dr. Chira will be putting him on a much stronger medicine to try to put the RA into remission and hopefully avoid bone/joint damage for as long as possible. This does not mean he won't be in pain, but hopefully Tylenol will manage that for him. The stronger medicine can have some pretty severe side effects, and we will have to get John's liver checked every couple months.

JRA (juvenile rheumatoid arthritis) is not the most pleasant of diagnosis, but I keep reminding myself that it could be worse. John will have to deal with this for the rest of his life, but hopefully his doctor(s) will be able to find the right combination of medicines and rehabilitation that will slow it down so it doesn't affect him horribly. It's not something that he will "grow out of" or just go away on its own. There is no cure for it, but doctors have come very far with treatment for it. We hope and pray that we are able to keep John on a normal path for a very long time and that he is not hindered or stopped from doing things he loves. This journey will be a long one, but we'll hold his little hand every single step of the way. Keep him in your thoughts and prayers, and hope his journey with JRA isn't especially difficult for him.

It's Been What ... Forever?

Good golly, it's been a very long time since we've updated this thing here! So sorry ... but here goes! (Let's keep this short and sweet cuz this mama's tired lol)

Josh is now the back room supervisor at the Niles Walmart. He's doing really well and hoping to be able to move up even further. The hours are no fun (3pm-12am), but such is life! He's still in the Army Reserves and attending the regular monthly drill sessions. We're hoping for a

promotion to SGT within the next year! Wish him luck and cross your fingers! :)

I'm working as a teller, and I absolutely love it! According to my m

anager, if I continue on the path I'm at right now I may be able to get a supervisor position shortly after my year at the bank hits (that'll be in March), which would be super exciting! I'm also running my own little crafty business that has taken off far more than I could have ever imagined. I have my own website even! www.arielscustomdesigns.com

John is getting so big! He is about four months short of being three years old already! Already?!?! Everyone who spends time with him cannot believe how smart he is -- he knows all his letters and their sounds, numbers up to 20, shapes, colors, animals and their sounds, and s

o much more! It's very exciting to watch him grow and learn new things every day. He's a little ball of energy most days.

As most of you already know, we've found ourselves in the middle of some odd medical circumstance with John. He has been diagnosed with JRA (juvenile rheumatoid arthritis) in both of his knees. Everything began when he randomly started limping one day -- no other symptoms, no apparent pain, no swelling, he just couldn't hardly even stand up. It was like his leg would just collapse underneath him. We saw three different pediatricians, had inconclusive bloodwork and x-rays done multiple times, and were eventually sent to Rileys' Children's Hospital down in Indianapolis to see a few different doctors down there. His pediatric rheumatologist is certain it is arthritis in his knees that causes the occasional limping and th

e now constant pain in his knees. He was on a daily regimen

of ibuprofen and tylenol, but now he is just on tylenol until further notice because the ibuprofen may be causing severe stomach issues. We should find out more on that next week. Overall, he's doing well. Right now it's just finding a balance of pain meds to manage

his pain, visits to a couple specialists down at Riley's every 3-6mo, and waiting to see where we have to go next with all this. At this point he doesn't have to go the serious routes like receiving injections in his knees to reduce the swelling or anything, so we're very thankful.

Jake just turned a year old in September. He's our little bruiser, as we call him. His foot is doing extremely well -- we're waiting on his last brace to come in! The foot still rotates in a b

it, but with practice he'll be just fine. He's a bit of a late bloomer in the teething area -- he's only got a couple teeth right now, but he seems to be working on seve

ral more. He's discovered the wonderful world of walking, and he rarely ever slows down!

The boys are both in daycare full-time at La Petite Academy, and they both love it! Jake is in t

excited he forgets to even say bye. But overall, they are doing really well. I love La Petite Academy and think it's an amazing fit for them both. The teache toddler room. He eats table food and drinks out of a sippy cup all day long while he's with his friends (not so much at home, little stinker). John is in the preschool area, and he is doing great! One of his teachers t

old me that he knows more than most of the kids in the class AHEAD of him! Go John! We have easy and tough drop-off days, depending on the boys' moods. Some

times drop-offs are full of fits and tears, and other times John is so

hers seems to be genuinely concerned for their well-being, and I feel they get the attention and love they need while they're there.

As you can tell, our lives are hectic and busy and crazy and fun all in one. The boys are growing faster than we can believe, and it's amazing to watch them! Hopefully it won't take me another year or so to post on here again ;)

Until next time ...

Finally Another Update :)

Since my last post on here, a TON has happened! I'm sure a lot of you will already know most of the stuff I'm updating on in here, but I'll start from the beginning for those of you who don't ...

Jacob was born on 22 Sept 2010. My labor was ridiculously easy. I never once actually felt like I was in labor the whole time! He was healthy and perfect (7lb 1oz and 20in) except for one of his little feet. The doctors diagnosed him with a positional club foot, which basically meant he didn't have enough room to grow inside me and his foot was bent into an abnormal position. At two weeks old his pediatrician sent us to see an orthopedist who then sent us to see a children's physical therapist. His therapist (Denise) was wonderful. She did a series of castings called Ponsetti castings which stretched the muscles little by little with each cast until he was back to an almost normal position. Denise was very caring and concerned with Jake's well-being and made the whole process a lot easier to handle. Each cast was left on for one week, and he had a total of five casts before he went back to see the orthopedist. Dr. Rozzi decided that although Jake had made a TON of progress, he would need to have an Achilles tenotomy (where they make a small incision and cut the Achilles tendon). We went in for Jake's re-check on a Monday, and his surgery was scheduled for that Wednesday. Another cast was put on Jake's leg for two weeks to hold his foot in a flexed position while the tendon grew back. We were just able to take his cast off this past Thursday (Dec 9) for his post-op check with Dr. Rozzi. He said that the surgery went great, and Jake has healed perfectly! He can flex his foot wonderfully now, but he will need a brace called a Dennis Brown bar (it's got special shoes that attach to a bar that will hold his feet at a specific angle so his club foot doesn't return since the muscles are used to the wrong position). He will have to wear the bar 24/7 for three months, and after that he will have to wear it just at night for a couple years. All things considered, he's doing really well. He has a hard time eating still and spits up a lot. Hopefully once he gets used to having his brace on (which he should get Monday), he won't be as stressed and will do better with that. I think he may be a bit behind on being able to push his chest/head off the ground when he's on his belly, but I have to remember that he hasn't been able to spend any time on his belly because of his casts thus far. As of his 2mo checkup two weeks ago, he weighed in at a whopping 10lb 8oz and 22in long. Seems like he's growing faster than I can get the next size clothing unpacked from the storage bins!

John is doing really well, too. He is getting soooo big! He absolutely loves his baby brother. We'll tell John "go check on your brother," and he'll walk over and plant a big ole "mmmmmmwah!" kiss on Jake's forehead. He's running and climbing like a crazy little man now, and he doesn't let anything stand in his way. John also has braces on his feet, but they're for a completely different issue than what Jake has. When John walks, he rolls his feet in toward each other so he's basically walking on the arches. His pediatrician sent us to a podiatrist who said the issue could potentially cause major problems later on, and he sent us off to a place that would order special braces called SureSteps for him. They're just a plastic little thing that molds to his foot and uses pressure to hold his feet in the right position while he's walking. He wears them inside his shoes, and he absolutely loves them. When we take them off for naptime or bedtime, he actually gets upset and tries to put them back on! We can see a HUGE difference in his balance and walking while he's wearing the braces compared to when they're not on, and we're extremely happy we decided to get this taken care of now. He will have to wear the braces for several years most likely, but if it fixes the problem then we're okay with that!

Josh and I are doing well, too. Josh is now working full-time at WalMart in Niles unloading trucks. The only bad part is that his hours are 4pm-1am, but at least it's money! He's also in the running for South Bend Police Department. We aren't sure exactly when they're planning on hiring, but Josh knows several people who work there and it seems like things should be moving along fairly quickly. It would be an insanely huge blessing if Josh could get hired on there (and soon)! ... Not much is new with me. I stay home with the boys, get little sleep because Jake has decided it's still not fun to sleep through the night, and enjoy watching our babies grow and learn.

And here are some pics for y'all to enjoy! (Those of you who get email updates may not be able to view the pics until you visit the actual blog) ...

-Here is the progress made on Jake's foot with Just the casting. The top pics are how his foot was turned in at birth, and the bottom pics are after his 4th cast. His leg is nice and straight now, and with the tenotomy done, he can flex his ankle much farther than you see in the bottom set of pictures.

-Here's our lil man jake. He was born with a full head of dark hair, and he hasn't lost much of it yet! His eyes are turning into a beautiful light blue just like his brother's and daddy's.


-This is John's reaction when he sees us pull out the camera and start taking pictures. I bet I have hundreds of photos of him with this big ole cheesy grin and his eyes all scrunched up like this. He's too cute!

-And here is John wanting to give his brother a kiss, but Jake obviously wasn't too thrilled with that idea! lol :)

Almost Time!!!

My goodness, has it been a while since we've posted anything on here! Sorry, everyone!!

Things are going well. John is getting so big. He's nearly 18 months old now! He runs around like a crazy little man and shouts and jabbers to us in his own little language. Any time he hears music he just has to stop and dance to it. He's pretty much the cutest little thing, and he loves to give Mommy and Daddy big ole slobbery kisses. :)

Josh is still on the job hunt, but we are hanging in there. He's got a couple different security job leads, but those are still in the works and waiting on information. We can't believe he's already been home for a year since the deployment!

Ariel is at the end of her pregnancy! Her due date was 20 September, and the doctor decided to induce her tomorrow (22 September). We will update everyone with stats on mama and baby once things settle a bit! We're all excited to welcome little mister Jacob Owen Anthony into our family and become a perfect little family of four!

That's all for now, just the basics this time :) Look for another post soon about baby Jacob!

Love,
The Anthony's

Baby Anthony Is A ....

Well, I had another check up today for the baby. Everything measures perfect, and the baby is looking healthy and great! Our little one was very cooperative and definitely not shy, letting us clearly see that John will have a baby brother come September! His name will be Jacob Owen. Today he measured at about 9 ounces, and his length is right on track length-wise. Due date is still set for 20 September. We will continue to update with each appointment as things progress!

John is getting so big now. He is walking on his own, just a few steps here and there, but his confidence is increasing. Pretty soon he will definitely be walking all over the place (then mommy and daddy will really be in trouble, haha)! He is already half as tall as his mama (literally), so perhaps he will end up tall like his daddy someday.

Josh still hasn't heard anything back on the various police departments he has tested for. We're pretty much playing the waiting game and will let everyone know if/when we hear something!

The Anthony's

Lil Update

Hey, everyone. Things are going really well for us. John will be a year old on Wednesday, March 31 (gosh, how time has flown)! He is standing on his own here and there and has even taken a couple steps by himself! We're excited but also dreading having a toddler running around here soon, lol. :)

I had a check-up today to check how things are coming along with the new baby. Everything looks great -- heart rate sounded good via the doppler (he didn't tell me the numbers for the heart rate, so sorry), I'm measuring right on track, and my weight gain is good. I have some blood work to get done in the next couple weeks, and my next appointment is in a month. The ultrasound is scheduled during my next appointment, in one month. Let's hope the little one is cooperative!

I'll keep updating with news on my doctor appointments and with how things are going with John.

Love,
The Anthony's

Baby Update

I had my first "actual" doctor appointment today, and everything went great! The doctor couldn't find the baby's heartbeat right away, so he sent us off for an ultrasound (oh darn, right?). Baby looks fantastic and is growing right on track. The heartrate was a fast 180bpm, but the ultrasound technician said it was good. We got to see our lil peanut's legs stickin out, the umbilical chord runnin by its body, and we could see the definite shape of the head and body. Soooo cute, and so very exciting!!!