Fresh Start

As I logged into my blog I realized two things:

1. It has been TOO long since I have blogged

2. Thus making me a horrible blogger!!

However, there really hasn't been much to report in the 4 months that I have had my short hiatus.  But to continue with this blog let me catch you up on a few things.  First, Brylea has been doing monthly infusions of Actemra.  Once a month we come to Scottish Rite to hook Brylea up to an IV where she sits for roughly an hour while getting her drug.  Afterwards, we are able to continue our tradition of getting lunch in the cafeteria and go home.  Well, we may or may not stop at The Cupcakery for some indulgence. ;)

In the meantime, she has remained constant in my eyes.  She had started complaining of shoulder pain (she says it "feels like my bones are cracking"), she still has swelling in her fingers, and because of this abnormally crazy Texas weather her middle finger hurts in the mornings.  We also still have morning stiffness.  I just knew in my heart that the infusions weren't really working and that the next step of joint injections would be imminent.  I came fully prepared to breakdown at Scottish Rite.

As we are walking into the exam room, I notice a certain doctor is here.  Let me pause and say that in the almost four years that we have been coming here, Brylea has seen a plethora of doctors.  It has hardly ever been the same doctor each time and at one point it was discouraging because one doctor would say Brylea's condition was heading in a certain direction and the next appointment we would be told something contradictory.  However, today I noticed that Dr. Punaro was walking the halls.  Dr. Punaro just isn't a regular doctor.  She is the Director of the Rheumatology department.  This is a good as it gets!!  So when the nurse walked in I asked (thanks to the urging of my fantastic mother in law) if we could see her today.  I was told yes!!  I was excited.  Afterall, joint injections are at stake here!  I wanted to make absolutely sure we received the best consult today.

Dr. Punaro reviewed Brylea's chart and was apologetic in that it had been almost 3 years since she had last seen Brylea.  She examined Brylea and noticed that out of all of her joints that were infected, she only had TWO active joints out of the 19+ originally diagnosed.  Her range of motion was excellent!  She had just seen a patient whose knee was permanently stuck in a 90 degree angle.  When things like this are brought to my attention it puts Brylea more into perspective.  The fact, however, that she is still showing symptoms worries the Dr. a little bit.  She stills wonders if we are on the right track.  When she had seen her the last time she wanted to test for Lupus and other autoimmune diseases to make sure that we are on the right path of treatment.  She also mentioned just how rare and unusual Brylea's case is.  So, she has ordered a whole new realm of testing.

Brylea is still getting her infusion today and also we are going to get a chest X-ray.  Plus we are having to come back to see a Sonographer to get all of her sonogrammed to see what is going on.  Plus, we will be getting another MRI in her wrist to see if there are any changes.  

We go back in July to see...drumroll....Dr. Punaro again!  Super stoked!!  She wants to review all of the tests and go from there.  We will get one more infusion in before seeing her.  The next option (in her eyes) is another infusion medicine.  Please forgive me for not remembering the name but it starts with an R (no not Remicade) and it is something not normally given to children nor children with arthritis.  However, if Brylea is RF+ and CCP+ (have no idea what the CCP is..forgive me) then this may be the next step.

Long story short it looks like things are on the up and up.  We ask for continued prayers not only for Brylea but also for us as well.  Starting last month, Scottish Rite has started charging the patients.  Before they worked solely on donations, then only charged insurance, and now they are having to pass the costs onto the patients.  Due to me being a bonehead we do not have insurance (at all) right now.  Therefore, this frightens me with all of these treatments and tests she will be getting.  I pray that financially we will not be affected with the cost of her treatments.  Thank you for taking the time to read this and also for the continued prayers!!