I need to lower my expectations...

Yesterday was Jenna's three month routine follow ups with the ophthalmologist and rheumatologist at Duke Children's Hospital in Durham NC. Almost four years in, and I still do not have a handle on this. With every appointment, I go in thinking that I know what's coming. Yesterday, I went in thinking that THIS is it! THIS is the appointment that changes our lives as we have come to know them! THIS is the appointment that we FINALLY get to start reducing her med doses. Ummmm, nope. 

I managed to snap some pics with my phone yesterday too (she never let's me!!) So I am going to share those while I tell of our day.

 This first pic is Jenna on the ride to Duke. It takes us about 2 hours and fifteen minutes. That used to be a torturous ride, but she has gotten used to it. This trip I let her bring the laptop to play on. :)

 Up first yesterday was ophthalmology. THIS is the appointment that always makes me the most nervous. Uveitis is often a silent disease. So it can be there, flaring, causing damage and we would never know. (I tried to get her to unfold her arms. NO doing!)

 First they check her vision. She has been complaining of difficulty seeing at distances. BOY I guess! She really had trouble with the charts.

 Then a fellow comes in to check her with the slit lamp to look for signs of the Uveitis. Jenna is such an old pro at this. They don't even need to tell her what to do anymore!

 These are the "really cool" sunglasses that they gave her. Glad you like them Toots. She needed to have her pupils dilated and lights can be painful afterwards. SO, Dr. Wallace came in, checked her over with the slit lamp and deemed her cell and flare free! WHOOT and HOLLA! She needs glasses but hey I'll take it!! She is really excited about getting glasses. She has no clue what a pain they are. Dr. W said he is fine to start reducing meds whenever the rheums are and he will see us in three months. BUH BYE!

 Off to Pediatric Rheumatology. She was very scared to stand this close to the railing for a pic, but she did it for me anyway. Thank you Bean. :) We got to see our favorite rheum, Dr. V!! YAY! We hardly ever get her. Okay, so here is where the unexpected comes in. The GREAT news is that her joints all look awesome! No signs of any active disease. No swelling, stiffness or heat anywhere. SO, my thought was that since she is doing so well AND since the Methotrexate has been making her so sick, let's get her off this crap. Ummmm, nope. WHAT?? WHY?! Three months ago at her appointment, she was having severe morning pain and stiffness. Even though she looked fine at the appointment, morning were still torture for her. Peg legged, scooting around on her butt, miserable. She was put on once daily Mobic. That has worked like magic. No more pain, no more stiffness, she has seemed to be doing better than she has in a very long time. Dr. V is concerned that if we reduce her meds now, after only three months on the Mobic, that it will bring all that pain and stiffness back. She feels that Jenna's body needs more time, that in six months if she is still doing this well we can start stretching the space between Humira injections. Okay, I can take that. Not what I was hoping for, not what I was expecting, but we can take it. We are going to TRY to change her DMARD from Methotrexate to Avara. The MTX is just making her so sick. Partially because, well, it's toxic chemotherapy. Partially, we think, because she is anticipating being sick and the anxiety of it coming is only exacerbating the effect. Here is the problem, Avara is a pill that cannot be crushed or cut up in anyway. It must be swallowed whole. Jenna can't even swallow one mini M&M or a tic tac. :( My hope is that the simple fact that if she can swallow this tiny little pill each day that she gets to skip one shot a week and not get sick is enough motivation for her to get that danged thing down her throat hole! I guess we will find out tomorrow morning.
Jenna shared a few things at yesterday's appointment. Jenna sharing thoughts and feelings is pretty rare! When Dr. V asked about Jenna's activity level I was about to tell Dr. V that it's been great! But out of the corner of my eye I saw Jenna shaking her head "No". I asked her, "You DON'T think you have been active?". Again she shook her head "No". I said, "Really? You seem to Daddy and I to be more active." Again, the shake "No". It hit me then. I said, "Do you mean you aren't as active as your friends?" This time I got a "yes" shake. Ooooooooh, well, :(. She also, for some reason, asked me about the Humira Pen yesterday. I had no clue that Jenna even knew about the pens! I said, "Why do you want to know about them?" She said, "Well, when can I get them instead of the needles? That way I can just, *insert sound effect*, get it done." After explaining how the Pen works, getting the med in super quick, which makes it hurt worse, she was all set with the pen. :p I told her that if she changes her mind to let me know and we can get her the pen. After that discussion, she asked me if Jordan uses the Pen for her injections. Jenna looks up to Jordan SO very much!!! One day, they WILL meet! I told her. "No, Jordan doesn't get injections anymore. She has to get infusions for her meds. " Jenna then asked me to explain infusions.I told her that Jordan has to go to the hospital to be hooked up to an IV for hours to get her meds through the IV. Jenna's eyes bugged out and she said, "HOURS?!" I said, "Yes, it takes hours. How many depends on the med. But still, hours." To my surprise, Jenna said, "She's lucky." I'm sorry, SAY WHA?! I asked her, "You would RATHER have infusions??" She replied with a very somber, "Yes." Well that about knocked me off my chair.

And then there was this. Jenna always draws on the table paper at any appointment. But this was new. She has never been so expressive about her arthritis.

"You have BEAUTIFUL ankle bones!"

That is what Jenna's rheumatologist said to her at her 3 month appointment this past Wednesday. "You have BEAUTIFUL ankle bones!" Who would have thought that would be music to our ears? Before she started her exam I told her that while I don't think Jenna is at 100%, I still feel she is the best she has been since her diagnosis in August of 2008. After examining Jenna, the doctor agreed. Jenna is doing GREAT. I expressed my concern over the fact that she is still experiencing periodic pain and stiffness. When a storm blows through, when the temperature drops, sometimes when she wakes up or after a car ride. I asked her, "Is this just her normal? Is this okay?" She assured me that yes, this is okay and perfectly normal. Even a child that goes into remission can still experience all of this. She does, after all, still, have arthritis. Even if she hits remission, she won't be cured. Sadly, surprisingly, this is music to my ears. I could not be more happy. She does have an awful lot of tightness behind her knees. Again, perfectly normal for a child with arthritis. Her homework before her next appointment is to get that stretched out and be able to at least reach her ankles with her fingertips. Right now she can't even sit up, she is so tight. Now, you may be thinking, "Wow she is doing so great she must be ready to taper meds!" Yeah, nope......read on.....

Jenna also had her 3 month ophthalmology appointment on Wednesday. We didn't get terrible news, but it wasn't what I had hoped and prayed for either. After nearly two years of hearing Dr. Wallace say clear and quiet, I heard the dreadful word CELLS. She isn't in a full blown Uveitis flare right now. He assured me that this could go either way. We could come back and she will be in a full blown flare. Or, these few cells could just go away all on their own. Not terrible, but not so great either. Had her eyes still been clear and quiet both doctors would have been comfortable tapering meds. Not now. These few cells have taken that chance away. Even when we go back, if they are gone, it will be risky to try tapering now. We are so blessed with amazing doctors. Dr. Wallace took the time to very patiently reassure me that since she isn't having any major, adverse side effects from the meds she is on, keeping her on them right now is really the best thing. Overall she is doing well on them, taking her off of them right now could be disastrous. We are also blessed that he understands the dangers of steroid eye drops. We are not putting her on a course of drops at this time. We are waiting to see what happens. When we go back to have her rechecked, if the cells are still there, then we will start drops. AND GET HER OFF OF THEM QUICKLY. So very thankful that he is educated on this. Sadly, many doctors are not. They, for whatever reason, don't understand the dangers of these drops being used long term. We will need to do a med change to in order to get her off the drops. But we will cross that bridge when and if we get to it.

Overall, I still consider this to be a great day for appointments. Her joints look and feel great! Her eyes have hit a teeny, tiny, minor bump in the road. It will be okay. No matter the turn it takes, I have faith, it will be okay.

The Eyes

 So, the GREAT news is that her eyes remain inflammation free! I am still so stunned by this. That means that since December of 2009, the Uveitis has not acted up for her. That is incredible given the difficulty we had getting it under control. The combination of Humira plus Methotrexate continues to keep her eyes healthy. It amazes me, it brings me great joy, yet I can't help but also feel a bit of guilt. You see, it isn't so easy for everyone. There are still so many little ones that struggle to find the right combo of meds to tame this beast. I hate that. I feel so lucky, so very blessed. And again, I must stress, to ALL of those that doubted and STILL doubt our move down here, had we stayed in Maine, this would NOT have happened.
Since her eyes are still healthy, we are not comfortable playing around with her meds at this time. Despite the fact that her joints continue to flare off and on, it just isn't worth the risk to her eyes to play with the meds. I called her rheum office and scheduled her 3 month follow up and asked that the nurse please speak with Dr. V about keeping meds the same for now. I got the call back before days end. What a relief, she is FINE with keeping her on the MTX and Humira for now and we will see how she is at her appointment in November. PHEW!
So for now we wait and see, again, what this disease will do. It is so hard to just let things be. To not be hyper vigilant, always on edge, questioning every little thing. I don't even know how to explain it to someone with a healthy child. But, for now, I am going to just let things be as they are. I am going to try not to ask her every morning, every afternoon, every night, "How are you? Are you okay? Are you sure?" I need to back off. I need to TRUST that if something is wrong, she will tell me. We'll see how this goes.

She was so upset about missing art class AGAIN this week. It's her most favorite enhancement class. What a pleasant surprise this was. The Art Cart was out at Duke Eye Center. :o)

Breathing a Sigh of Relief...

....so far anyway. I should have her lab results tomorrow, or the beginning of next week. Once I have those and they look okay, THEN I can really breathe I sigh of relief. Overall, it was a really good visit.

The ride there was better than it used to be thanks to our "new to us" vehicle. The highways here are still a nightmare, Larry got to witness this for the first time and he was amazed. But, it was definitely a more comfortable, smoother ride. Jenna was for the most part comfortable the whole way. A few times when I looked back she was grimacing and trying to find a comfy position, but overall she did okay. Two hours of sitting still isn't easy on anyone really.

We got there a little ahead of our appointment and were taken in almost immediately. We saw a new doctor, I can't for the life of me pronounce his name, but he was very nice, very thorough and we all liked him, we shall  call him Dr. D. He took the time to answer all of our questions and answered them in ways that we were able to understand. Gotta like that! Jenna was loose as a goose, no pain, no stiffness....NO SWELLING, NO signs of ANY active arthritis!!! WOOOOOHOOOOOO baby!!!!!!!!!! SO pleased to hear that. However, he said that given what we told him about her Fall and Winter, she likely had active arthritis then. SO, that means that yesterday was day zero on the road to being able to wean her off of meds. BOO! That is a big bummer as I thought that we started that in December of 2009 but, she is doing well now so I need to focus on that. We talked a bit about her hyper mobility. He seemed pretty amazed at how far he could overextend her joints and it not hurt her. He said that the pain that we are describing her as having (pain behind knees while seated, pain from extended walking, etc) is from her hyper mobility, not from her JIA. The good news of that is that he wants to put her in physical therapy. FUNNY, I asked the doctor that we wasted a year on about that and he said no. Hmmm....so anyway, the goal is to strengthen her muscles and tighten her ligaments and therefore, eliminate her pain :) I called today to set that up, she starts next Thursday, they said three times a week to start. WOW. Labs went great. She held still, he was in and out in the blink of an eye! I think food was her motivator but by the time we were done with the lab we were already late for her eye appointment!

On to Duke Eye Center.....we only got slightly lost in the hallways :p We arrived for her appointment thirty minutes late but they took us back fairly quickly. The resident that saw her first was great with her. He is in the right field for sure. I wish ALL peds doctors were like that. He said everything looked great to him but he knows that Dr. W likes to get a better look with another machine. It had been well over a year since they last dilated her to look behind the retina so we did that too. UGH. Poor kid apparently still remembers all of her nightmarish experiences with the doctor in Maine because she fought us like a wild animal just trying to get the dilation drops in :"( AND, they didn't take the first time, so that was a total of 40 minutes waiting for her pupils to dilate. By this point it was 2 or 3 in the afternoon, we hadn't eaten anything, and Larry had been up for 24 hours. Awesome. But anyway, Dr. W took a look with his "better equipment" saw NOTHING, looked behind the retina, saw NOTHING!!!! WOOOOOHOOOO! Eyes are still clear and holding strong! I am so very grateful for that especially given the struggles that I know so many other parents are going through right now trying to find the med combo that will work. We have been so fortunate. Dr. W said that as far as he is concerned she can start weaning anytime and he will send that recommendation over to Dr. D. But, he also said with a smile that he knows they won't go for that :) LOL!

So, that's it! We go back in three months unless something new comes up. She starts her PT next Thursday. Lab results should be ready tomorrow! Thank you to everyone that has been praying for my sweet Bean. It means more to me than I could ever express.

Oops sorry, just remembered a couple more things. We spoke with Dr. D about our troubles getting a 504 in place for Jenna. Of course, the social worker wasn't in yesterday. She will be back on Friday and he will give her the info and have her call us so that she can take care of it. This will definitely be needed now with her having PT as the latest they schedule is 5 pm and those are difficult to come by. So I may need to pull her early or bring her late. Also, I forgot to ask about the CARRA registry :( Very disappointed in myself for that. Next time though, I promise. And lastly, her official diagnosis now is extended oligoarticular juvenile idiopathic arthritis. Dang that's a mouthful!

Counting My Blessings

I just feel such a strong need today to count my blessings. It is very easy with a chronically ill child to be angry and hateful. It's something that unless you are or have lived it, you simply can't understand. Most times I wish more than anything that we didn't have to know what it's like. Some days I get very angry with God for doing this to us. I get very angry with the disease for raging through my sweet Beanz body and wreaking havoc on it. Then there are days like today. I know that God has a plan and a purpose for every single one of us. I know that He loves my Bean. He isn't doing this to hurt her or to punish her. Instead it is to use her and me through her. It is my life's purpose, because of what is happening to my child, to educate myself and then educate the world to the best of my abilities. I thank God for that. It has also I know given Bean a strength that she otherwise wouldn't know. It gives her siblings compassion and understanding that they otherwise wouldn't have.

We are also very blessed that Bean, despite all that she does go through, could be much worse. I have been so fortunate to connect with other JA Moms and we all share our stories with each other, many of them now with the world via blogs. A great number of these children still have not found the right med, combo of meds and or dosage of meds. Many of them struggled just to get the diagnosis. Too many of them are having their vital organs attacked either by the disease itself or by the medications they are taking to treat the disease. Some have already had surgeries on their joints and now have more scheduled. Some of them have had to have joint replacement....IN A CHILD! Way too many of them simply cannot get the Uveitis to go away and stay away and now have permanently damaged eyes. Their eyes!!! They are just babies for crying out loud!

So please, take a moment today, and count your blessings.....

3 Days & 2 Appointments

Monday this week we brought Bean to the "rheumatologist" at Brenner Children's Hospital. I was thankful to be able to get her in so quickly seeing as how I had just called Thursday last week. What a joke, what a waste! Mondays appointment confirmed we are doing the right thing by going back to Duke Children's Hospital. Her pain has been increasing in intensity and frequency for at least a month now. Oh and still exhausted! She also has swelling that comes and goes in her toes and fingers, her knees are squishy and she has been having toes and the heel of her hand turning purple and she says that REALLY hurts. And of course interspersed with all of this is periods of time where she seems perfectly fine! I love those moments, nothing brings me greater joy than to watch her skip, dance, run (which always looks odd and hobbled) and play like a "normal" healthy little girl. But I also know what will come later on. She will be laying somewhere crying that she hurts, or taking her frustration with her pain out on all of us because she is trying to hide it and deny it exists. So this guy says non of this fits JA. That simply put, swelling and pain do not come and go with JA. It's either there or it isn't. Really? That's new to me but I was willing to set that aside to look into further on my own. Turns out that's BS. I have, since Monday, heard from adult sufferers as well as Moms of JA kids that say of course it can come and go. So my next question to him was, okay so if this indeed isn't her JA then what is it because this certainly isn't normal or okay. He asked to speak to me in another room. I braced myself because I knew what was coming. He says she is either faking it for the attention, OR because she has been told that she has this chronic illness that causes chronic pain she just has it in her head that she should be in pain. Uh huh.....so riddle me this "DOCTOR" why then is it that she pushes herself way beyond her comfort zone, typically denies anything is hurting her when clearly it is, then finally reaches her breaking point only when she is in agonizing pain and THEN and only then does she stop what she is doing?? He said he has no answer for that, he just knows there is nothing medically wrong with her and that her JRA is currently under control. Right, thank you so very much for wasting my time today and doing nothing to help my child. I recently had requested copies of her records from his office which includes all her labs. I looked them over briefly and thought they really didn't look anything like her Duke ones but at the time didn't think much of it. Yesterday Hubs and I were able to access her labs from Duke (last done Dec 09) and compare them to the labs from Brenner. He has done nothing other than a basic panel that any one of us would have at say a regular yearly exam. He hasn't run a sed rate or a CRP. Now, here is the other interesting part of that. Her last time at Duke I clearly remember there being little to no visible inflammation, maybe some squishiness in her knees, her range of motion was excellent, and yet her sed rate was 26 with normal range being 0-13. So clearly with Bean she can have inflammation that you can't see. UGH. Still kicking myself for not researching this doctor before making the switch.

Now on to today. Today was her routine opthalmologist appointment to check for a Uveitis flare. I was so nervous going in there today. With all the pain she has been in I was really worried that it had come back. If that was the case I know we would have needed to discuss another med switch. I have tried to go back through the blog to see exactly when her eyes became clear. Best I can find is in February I reported that they were still clear yet in January she had about 10 cells so closing in on one year anyway of her eyes staying healthy. WAHOO!!!!! Breathing a sigh of relief on that one. The opth and her assistant her horrified by what the doctor told us on Monday. Felt good to get confirmation of the absurdity of it all from another doctor.

The unfortunate thing in all of this is that Beanz appointments at Duke aren't until March. I'm being told by friends and family to call and explain, maybe they can get her in sooner. As awful as it may sound, I have another crisis with another child that is more demanding of my focus right now. Until we can get this crisis resolved Bean will have to wait to be seen at Duke. We will simply do our best with hot baths, Motrin, rest and massages for now. I pray that this other issue will be resolve very, very soon.

Ooooh and by the way, in case you were wondering, yeah still no 504 in place. MmmmHmmm...