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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Thursday, May 17, 2012

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.

1 comment:

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