Every Little Bit Helps!!

This morning I received a call from John's rheumatologist. They ran labs at his last appointment to see how elevated some of the levels in his blood were that are indicators of inflammation. Everything was perfect except for one -- his SED rate. The SED rate is one of the biggest indicators of inflammation. Normal levels are 15 or lower, and John's is still at 25. Pretty high for a little dude, but MUCH lower than they have been (is average has been around 40, and it climbed to 112 while we were at Riley's in December). This is excellent news!! He has been off of his anti-inflammatory meds for a few days now, and he's doing very well with it so far. The colder weather that's creeped back up on us seems to be affecting him a little bit, but he's doing well with just tylenol. We'll probably sneak a couple doses of ibuprofen back in there to see if that helps him, but overall he's really doing great! I'm so proud of my little mister man and how he's handled everything so far. Hopefully we'll continue to have good news with each appointment in the future, and maybe ... just maybe ... his body has truly done the impossible and cured itself of an incurable disease!!

Yesterday marked three months since John was admitted to Riley in December. Crazy, right? It feels like it was just yesterday but also feels like it was an eternity ago, all at the same time. Is that even possible?

Since our Riley visit John has overall done exceptionally well. We had that one ... let's call it an episode ... at the end of February that landed him in the hospital for a day, but other than that he's been good! His physical therapist said numerous times he is well beyond the average skill/mobility level for a child his age, and she even said he's doing so well that she feels he does not need the therapy at this point! Of course, we are to call her if we have any questions or concerns or if he seems to be stiffening up or backsliding in anything ... but as of right now, we are therapy free! Yay!

Today, John had check-ups with his ophthalmologist (let's call it Ophth for short) and his rheumatologist (let's call it Rheum for short). The Ophth was amazed at how cooperative John was with the tests -- even putting his chin on that little plastic rest and his forehead up against the bar so she could look at the back of his eyes! He does such a fabulous job with that one. I am so proud of him! The Ophth was also amazed that he knew all of his letters and their sounds. Way to go, Mister Smarty Pants! :)  She said his vision is far better than what a child of his age should have (we'll thank Daddy for that trait), and the issue with the nerve above his eye has completely resolved itself! They have no idea how or why, but it did! That means **drum roll, please** no surgery!!!! Woohoo!!! What a relief!!!

The Rheum was also very pleased with what she saw today. The warm weather seems to be helping John tremendously. She wants us to take him off his meloxicam (the anti-inflammatory), keep him on the daily regimen of tylenol 3x's/day, and keep a VERY close eye on him to see how he does. We're hoping that his mood swings will subside without the heavier medicine, and maybe just maybe he'll be alright knee-pain-wise without it! She said that it could be one of two things: 1- He does have a very very odd form of JRA that comes and goes and worsens with the cold weather and season changes. Very possible and would totally make sense for him. OR 2 - Sometimes, according to the Rheum, a child can develop an autoimmune disease (i.e. JRA) that hangs around for a few months, years, whatever. Then, the child contracts a different virus or something that causes them to be extremely ill with high fevers and the whole kit'n'caboodle (such as John had in December). Somehow the body and immune system almost manage to reset themselves for lack of better words, and the original autoimmune disease/disorder seems to clear up. Hopefully, this is what happened or is happening with John! That would be AMAZING! We have to go back to the Rheum in September/October (as the weather is starting to change again) to have John re-evaluated because she doesn't want to just assume whatever it is/was is gone now just because he's doing well at the moment.

This has been the first set of appointments since we started this whole journey that has had ANY glimmer of hope! I absolutely LOVE his new Rheum. She's amazing, and she listened to every single question and concern I had about John. It's very encouraging to finally have a doctor who is going to listen and try to help us figure out what's going on and how we can help John be a kid again!

Another Month ... Another Hospital Stay

The months of January and February were pretty good for John. He only had a couple episodes with his knees/fevers that were worse than normal, which meant we only needed to use his codeine (if I remember correctly) three times. Yay!

He started physical therapy, which was very exciting. Denise, his therapist, is amazing. I can tell she really loves working with the kids, and she really loves John! She gave us exercises to do at home, most of which we can incorporate into every day playing, to help build John's leg/knee strength and keep his range of movement where it needs to be. Denise has actually recommended we put a hold on therapy for now because she can't find enough tasks to challenge him! John can climb steps one foot after another with no help (a task generally not learned until approx 4yrs of age), ride a tricycle on his own, and even rollerskate! He's a tough little cookie, and he's amazed all of us! Josh and I are so incredibly proud of how well he has done.

Although we haven't battled as many big flare-ups with John's knees, we have still dealt with the "normal" pain, stiffness, and aches he gets. We've also been passing the sicky germs around. No fun! Both boys had a stomach ick at the same time. We had towels and buckets strategically placed around the living room. Ick! Thankfully, that only lasted a couple days. Jake had an ear infection that was accompanied by a bad cough. Coughing is the only symptom he shows when he has an ear infection, crazy kiddo. Most of the time we have no idea he's got anything going on! He's doing much better now, though, and he's still as ornery as ever. :)

We did have a bit of a scare with John again last week. He was very sick for several days and ultimately ended up not even being able to keep down a little bit of water. We were in contact with his pediatrician at least once a day updating her on how he was doing, and we were all extremely concerned because his healthy just continually deteriorated. During the weekend his fever bounced from 100* all the way up to 102.6*, and he just layed in my bed whimpering and completely lethargic. His pediatrician tried a new antibiotic, but it did nothing. We tried alternating tylenol and ibuprofen, as recommended, but that did nothing. After a full day of keeping absolutely nothing down, his pediatrician and I both decided he needed a visit to the ER for IV fluids for hydration.

The visit to the ER was, as usual, less than pleasant. The doctor seemed to have "bigger concerns" than my sick child. In fact, he barely spent twenty seconds checking John before he got a call and had to leave. A nurse came in several hours later, after John's antibiotics were through his IV and about half a bag of fluids had gone through, and said we were being discharged -- that the doctor felt John was doing well enough at this point to go home. Funny thing is that John was just laying, almost limp, in my arms. I told the nurse to send the doctor back in, do  NOT touch his IV, turn the fluids back on, and we are not leaving. Josh ended up having to give the pediatrician a call (he was at work, and I was updating him via text) and letting her know the situation John and I were dealing with in the ER before anything got done. (The pediatrician is located in the same hospital we were at, just up a few floors.) Finally, the doctor came back in, pulled up a chair, and tried to convince me that John was fine and could go home. I told him John was NOT fine, he DID need more fluids, and we were NOT going home until he got them. We discussed things a little bit further, and the doctor made a recommendation to John's pediatrician (basically because of my demanding) that John be admitted for hydration and observation.

I am so incredibly thankful I insisted John be admitted. They gave him antibiotics and fluids through his IV all through the night, and by morning he was actually sitting up in bed and asking to watch cartoons. Yay! Amazingly huge improvement! And he'd stopped vomiting! Double yay! I got him to eat a few cheerios and a couple chocolate chip cookies (he is his mama's child), and by afternoon he was asking to play! Another huge yay! The turned off his IV, we pushed fluids from a cup, and I got him to munch on some little snacks here and there ... by late afternoon, I got word that we were going to be sent home. This time, I had a happy little man on my hands who was roaring like a dinosaur choochooing like a train. I hadn't seen him acting that happy in a LONG time! It was amazing!

He did super super well throughout the beginning of the week. Daycare drop offs in the mornings have been tough, but I expected that considering he was used to having Mama all week and had to readjust. The back and forth is extremely tough on him. I felt like we were finally coming into a clear patch until I got a call from his daycare this afternoon. John spiked a 102.2* fever at daycare, but it left just as quickly as it came. They know of his knee issues and the symptoms that come and go with that, but they always give me a call whenever something like that happens. They said he was drinking lots of water and a little juice and was just tired and cranky, but otherwise was doing fine. Since 102* is the average temperature he gets with these flare-ups, and considering the weather changing (which affects him sooooo badly -- think of your regular arthritis and multiply it tenfold or more, then pop that in a 2yr old's knees) and also considering the fact that his temperature was back under 100* and there was just about an hour left before normal pick up time, I decided to wait it out. Tonight he took lots of water, ate really well, and his temperature was back to normal. Hopefully it stays there!

One Step Forward. Three Steps Backward.

Yes, that seems to be the dance we're dancing lately with John's diagnosis ... or lack thereof.

Tuesday was John's first follow-up appointments (three to be exact) with different doctors at Riley since he was  down there in the hospital.  He had appointments with his ophthalmologist, rheumatologist, and ENT ...

Appointment One :: Ophthalmologist
John sees an ophthalmologist every few months because the JRA can also attack the eyes.  The bad part is that by the time outward symptoms show, the vision is almost guaranteed to be lost.  The doctor dilates his eyes every couple appointments and looks at the backs of his eyes at each appointment. John does surprisingly well with all of this. We make a game of his putting his chin in the little chin rest of the machines and his forehead up against the top bar part.

At this last appointment the doctor did not need to dilate John's eyes because they'd just been dilated when John was admitted to Riley in December. She kept repeating one specific test with him and saying "hmmmm" a lot, so of course I asked if everything was okay. She mentioned the fact that John holds his head very far to one side, but I could not figure out why that would make any difference for an eye exam. After finishing the test (again), the doctor told me that she is almost certain that there are six nerves surrounding the eye, and John has one above one of his eyes that is misfiring, per say. The misfiring causes double vision when John holds his head upright and normal, but if he tilts his head to the side, the double vision clears. Odd, right? What could possibly cause that kind of thing? Glad you asked! Apparently, this problem is most often seen right after a virus or infection occurs. Makes sense considering John started tilting his head to the side just a day or two before we left Riley (remember, he had the mastoiditis of his ear and the bone behind the ear).  The only way to fix the nerve and correct the vision and head tilting is with surgery.  I don't know the details on the surgery or recovery at this point, but we go back to see the pediatric ophthalmic surgeon on March 22.

Appointment Two :: Rheumatologist
Dr. Chira is John's rheumatologist.  From the beginning he has been baffled by John's case because John does not present classic symptoms of any one specific disease.  Tuesday, Dr. Chira decided that he no longer feels John has JRA, but he still cannot give us an answer (or now even a guess) as to what John does have. He tried to tell me that John may just be "confused" and "feeling an odd sensation that he can't describe, so he just says 'ow' to describe it."  This really ticked me off because a toddler does NOT wake up crying in the middle of the night and holding his knees/ankles/elbows and saying, "Mama, it hurts! It hurts!" because they are confused about some strange feeling. And boy, did I let the doctor know that I felt that was ridiculous! He then told me that John is apparently just having some random sort of chronic pain that has no rhyme or reason and can't be diagnosed or pinpointed ... I also let him know how I felt about that load of bologna!! Josh and I absolutely REFUSE to be told there is not reason, diagnosis, etc. for John's pain. We KNOW there is SOMETHING going on inside his little body, and we will NOT stop until we find out exactly what it is! He was a perfectly healthy child just six months ago, and we want to know what has taken that away from our little man.  After arguing with Dr. Chira for quite some time, he finally said he would consult with a neurologist and the pain team to find their thoughts on John's pain.  We see him again on March 22 as well.

Appointment Three :: ENT
I was very thankful John had a follow-up appointment with the ENT who placed the tube in his left ear (while he was admitted to Riley in Dec) because as I put John into the car in the morning, his ear started draining this disgusting goopy stuff! ... The doctor was quite clearly NOT used to working with very very young children like John. He was very clinical and not especially "fun" when he tried to get John to cooperate with different things. I was not impressed, but I guess he checked what he needed to check in John's ears. He said that the drainage is from yet another ear infection, but the good news is that the tube is doing its job!  He gave us a prescription for ear drops that need to be used twice a day in that ear, so hopefully they'll do the job!


The long and short of the story is that we are once again without a diagnosis and treatment plan for John.  This frustrates us like none other, but we refuse to be told there is nothing that can be done and that there are no more options. There have to be options. There have to be explanations. We will do absolutely everything and anything we need to do in order to find them. For now, John's medications are being switched around a bit. Dr. Chira wants us to wean him off of the tylenol a little bit and see how John does with less/lower pain meds. We're also still waiting (about six more weeks, give or take) on the genetic blood panel to come back with results.  Hopefully those will tell us more.  Until then, all we can do is as much research as possible. I am reading up on chronic pain in children, JRA, and some other things. Perhaps those will give me some insight or direction on what we can do for John or where we can take him.  Please continue to keep him in your prayers as this road has just gotten more frustrating than ever before.

Angels In Disguise

I am amazed at the generosity of the people around us right now -- friends, family, and even people I just chat with every now and again on facebook.  Everyone has been so incredibly supportive of everything that's been going on with John and the journey we've taken thus far with him. The road has been stressful and frustrating and overall extremely difficult, but I am blessed to say we have not traveled it alone!

I wanted to put a special thank you out to everyone who has helped us. We appreciate each and every one of the angels that have entered into our lives -- from family who watched Jacob while we were down at Riley's, to those who have helped us financially in any way, to my co-workers for pulling together and covering my shifts so I could be with John, to those who have prayed for us, and even to those who have just been there to listen to our thoughts, concerns, and worries.

I cannot express enough how much all of you mean to us and how thankful we are to have you in our lives. We are still waiting on the genetic blood testing to come back -- it will take another 8wks approximately.  Once we have that, we will have a more firm diagnosis and hopefully be able to set a more solid treatment plan.  I have come to accept that this is not something that will go away for him, and it is not something that will get better for him. That is not an easy realization to come to, but knowing we have the support we do reassures me we can make it through whatever lies ahead of us on this bumpy road!

So ... thank you once again for everything.  You are all angels in disguise!

Home Sweet Home

As I believe most of you already know, we are home with our little man now. We were released from Riley on Wednesday the 28th because John was clinically doing much better. He was walking pretty well by then and had even tried to run a couple times. The doctors sent out a pretty extensive genetic blood screening the night before we were discharged, but those will take 8-10 weeks to get the results. We won't have a more definite diagnosis for whatever is going on with John's knees until those come back. We'll get into that a little more later in this post ...

John's nurses were all very sweet when we left. He'd fell asleep in the wagon, and they were all disappointed that they couldn't tell him bye! They were very kind and wished us the best with John's journey and finding out what is wrong with his knees.

When we left Riley it felt like we had orders for enough prescriptions to start our own pharmacy! John is on an antibiotic for two weeks, a strong anti-inflammatory, a stomach protectant, a high dose of tylenol, and he also has an extremely strong pain prescription for when he has another flare up in his knees.  Getting all of John's meds filled here at home proved to be quite the struggle due to their high grade and potency, but we finally got everything filled for him! His doctor also gave us another prescription for physical therapy.  I have a physical therapist that we will use; I am in the process of scheduling his first appointment. The goal with the therapy will be to have exercises that will help get John through the flare ups, and we'll also be working on getting his gait back to normal when he walks and runs. He's stiff and sore, so this could be a challenge; but the therapist we'll be going to is the same that worked with Jake's foot after he was born, so I'm confident she'll do a great job.

Now, back to those genetic blood tests the doctors sent out ... If they come back with positive results, then that will mean John has a severe genetic problem ... but we'll deal with that if we have to turn that corner.  If the genetic tests all come back clear, then the doctors fall back on Juvenile Rheumatoid Arthritis again. JRA is very difficult to diagnose because there is no specific test that can determine "yes, you have JRA." The only way to diagnose JRA is to eliminate everything else under the sun and hope you can find a combination of extremely potent medicines that help ease the symptoms. If in fact the doctors do fall back on JRA, then John will fall under a special category of JRA called "systemic JRA." It's a much more rare form of JRA, and we'll go into more details on it if we find out that's what he has.

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Now that we are home, we're facing a completely new set of challenges.  John is having nightmares of being poked with needles (which isn't surprising considering he was poked over 20 times while he was in the hospital for that week, and they woke him almost every night with a needle at least once). He wakes up screaming, "Stop it! Stop it! It hurts! Owie! Owie!!!"  It's absolutely heartbreaking to hear him cry like that and see him curled in a ball with his arms over his head. He is also afraid to sleep in his bed. I think it reminds him of the crib in the hospital because they both have bars/slats on the sides. I'm considering upgrading him to a full-size bed, but we'd have to get him a new mattress and the bed rails for his bed, so we shall see. The good news is that his fits to fight sleep are getting **slightly** shorter, so I guess that's a start.

Since we're back I probably won't be posting on here as often because I am very busy with working full time, tending the boys, coordinating appointments, and still running my crafty business (www.arielscustomdesigns.com for those of you who haven't seen it yet). I will keep everyone updated as much as I can, though! 

We hope everyone had a Merry Christmas and a fabulous New Year! May this year be brighter than last, and may your hopes and dreams come true!

We're Getting There!

Sorry for the lack of updates the last couple days. There hasn't been too much going on around here with Christmas and whatnot. Let me think where I left off last ...

John's MRI came back mostly clear. They went ahead and just did it on his knees as well while they were in there. The results showed something "odd" in a couple spots on his brain, but the neurologist said not to worry about it. They don't know if it's just circumstantial because his body has been under so much stress, something that developed along with everything that's going on right now, or something that's always been there and is really nothing. We've been told to just watch how his motor skills are over the next several months to make sure he doesn't digress in anything. Overall, they aren't concerned with it. The rest of the MRI came back clear and gave no new leads on anything ... of course.

The bone scan confirmed the mastoiditis (infection in the inner ear that also spread to the bone behind the ear), but it didn't give any new information either. John is on ear drops and antibiotics for the mastoiditis, and the tube in his ear will also be helping that. The fluid from his ear that they sent out for lab tests came back fine, but they half expected that considering he'd been on antibiotics for nearly a week before it was tested. The doctors said the antibiotics basically sterilize any fluids like that and make the lab results not nearly as helpful.

Now that John has decided to start walking again, he doesn't want to stop! We took him for a walk around the hospital last night for some exercise. I expected him to walk for a little bit and then chill in the wagon the rest of the time. Nope! He actually decided he was going to pull the wagon himself! Silly boy! We literally had to fight him to let us carry him so his knees could rest! He's not walking completely normal yet, but that is probably a combination of the joint pain, not being on his feet for a week, and suddenly being on his feet constantly.

Today he's been pretty happy and even joined in for activity time in the playroom on our floor. He painted and played with trains and had an all around great time! So wonderful to see him playing again!  He does seem to be overdoing it a little bit with all this walking, running, and activity. His knees are very sore, and he's whiney and irritable. But he's landslides better than he was when we first got here!

At some point today he has to have some pretty extensive blood work done to test for some less common problems. Also, a hem/onc doctor is supposed to come talk to us about some other tests to rule out any form of childhood cancer. His doctors said they don't think it is because he isn't presenting a classic case of symptoms ... but then again, he's not presenting a classic case of symptoms for anything at this point. We're just trying to rule out anything and everything we can think of at this point.

This morning the doctors said they expect us to be able to go home in the next couple days! Yay!