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!!

Reflections

As I sit in my bed, going through my nightly routine of thumbing through the seemingly endless Facebook posts, I suddenly realize what is going on in my bed.  I have a husband that is trying to take a cat nap before heading out of State for the next few days.  I have my youngest son glued to hubby's back sleeping soundly.  Then, I have Brylea sleeping at the opposite end of my bed.  We had our usual night of what I call "Crazy Dance Night" where the girls and I spend the majority of our afternoon/evening preparing and going to dance.  Bry wasn't quite into it but I talked her into going tonight.  She then comes home with a new complaint.  She says her shoulders are hurting and it feels like her "bones are cracking."  Hubby and I make her more comfortable in the bed with her Kindle and just silently watching her.  She knows what this means.  She needs a shot.  She asks about it and we confirm that she will not get one tonight.  However, in the back of my mind the big day is coming.  Infusion.

I'll be the first to admit that Brylea and her personality drive me INSANE!  She is strong-willed and stubborn to the core.  However, everyone else that encounters Brylea sees nothing but her quirky personality (I swear she is Junie B Jones reincarnate) or the fact that she looks like Drew Barrymore in ET (may hold on to that for early retirement!).  Brylea is my beautiful, blonde hair baby girl.  She makes me laugh.  She loves to cuddle. She is a free spirit.  She is my blessing.  And as I sit here tonight surrounded by 3 of my blessings it made me turn off Facebook and truly thank God for what I have.

I was talking to Nathan the other night about the upcoming infusion.  I was sharing with him my thoughts on the whole arthritis and how it sucks.  Then Nathan brought up a good point.  He asked if I ever stopped to think about the impact Brylea has made on those she has not met.  And the fact that this is going to be her testimony one day as it is ours now.  Yes, I know, she is not healed.  However, our testimony in this journey is that God has provided TREMENDOUSLY in all of this.  We have heard story after story of parents that have to fly to doctors appointments, or drive long hours, with the expense of hotel rooms.  Plus, the cost of the medicines alone!  We pay maybe $50/month for our prescriptions.  Did not have a second thought in it until I heard recently of a family that pays $4,000/month for one prescription.  That's right!  No typo!  Her doctors appointments are free of charge.  God may not have healed us (yet!) but He has provided.  He has taken such good care of us and yet I am worried over an infusion.  A simply IV.  I worry about her future mate.  I just worry.  I wasn't given the gift of compassion.  Just worrying.  But through this all I have also been blessed with friends and family that have shown enough compassion and love that it makes it tolerable.

So, I can sit back and worry and fret over this appointment on Monday.  Or I can sit back and soak up the blessings that God has surrounded me with and that I take for granted on a daily basis.  Thank you to those that are reading this.  Thank you for those that have offered food or help.  Thank you to those that have simply asked what you can do to help.  And, most of all, thank you to those that have prayed for Brylea.