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.

"Mom, I have a nodule..."

These were not the words I expected to hear when asking Brylea how her day was. Usually she gives me the run down of who got in trouble, who got "treasure", or already asking what's for snack. But now my 5 year old is becoming more aware of her "ar-thur-I-tis" (her pronouniciation). This was a new nodule and appeared on her knee cap. As a mom, I freaked!  Afterall, her follow up was in a few days. I KNEW we would sail through her appointment with flying colors. Humira was our miracle drug. This would mean infusions, stronger drugs, and more unknowns. 

Then, today arrives. The appointment day. Bry loves Scottish Rite days. She calls it her "crayon doctor."  This is when Gammy comes and brings her a surprise plus the goodies she gets from the hospital itself. It means trains and fish tanks galore. She loves this place. On the way to take the older two to school I was listening on the radio about Kidd's Kids. Small testimonies of what these parents face had me in tears. One mom was saying how they were saving for Disney but was afraid by the time they could go she didnt know if her daughter would still have sight. That hit me hard. Here I was fearing about today's appointment when there are parents fearing everyday over the health of their children. I felt so selfish. 

We get to the appointment and not only was she still showing improvement but that new and mysterious nodule was gone!!! Praise the Lord!  The only thing the Dr wanted was an MRI to make sure that what we are seeing on the outside matches what is going on in the joint itself. This is scheduled for December 10th. 

Other than that we go back in February and just to continue to pray for remission!

Pity Party for 1

First of all, let me start out by saying that this is not a Brylea update.  Its more of a "Whiny Mom" alert.  I have been struggling with so much here lately and most of it I have been struggling alone.  I am not coming here for sympathy but more of getting the answer to "Am I the only one?"

One of the things I have been dealing with is just feeling like a total letdown of a mom.  It is already July and usually I am on the ball with fundraising for Brylea and the Arthritis Foundation.  This year I totally blew it!  I have to raise another $1400 in 13 days and I do not have what it takes to get to that number.  I hate asking for money.  I hate begging.  I hate the sympathy of associating it to Brylea.  Brylea *still* talks about Great Wolf Lodge and this year I am going to have to skirt the issue that we will not be going this year.  I hate that since I connect with so many parents going through and understanding what I am going through.  I know Brylea is still young but I was hoping to get her to a point where she can make lifelong friends that struggle with exactly what she struggles with.  Especially since Brylea is entering Kindergarten this year.  I am secretly terrified for her!

Then, there is Brylea in general.  I have made it no secret that she has been my difficult child from birth.  This is no exaggeration.  She whines and cries constantly.  And yells.  And throws fits.  And still wets the bed at night.  I am continuously torn over the fact that I love her but more times than not I am wanting space from her.  Last night I felt convicted as she came into our room last night (on her own) and said softly, "Mom, I love you and you are the best mom ever!"  It is those moments that I know God gives me to remind me that she is His and that I have been blessed by her and not the other way around.  She has an outgoing personality that outshines what she battles internally everyday.  I do not know what it is like to be her and I would trade her in heartbeat.  I KNOW THIS!  But, there are days when "Brylea being Brylea" clouds those thoughts.  I LOVE my baby girl and I remind Nathan constantly that this is the child HE prayed for and wanted.  She is a daddy's girl.  Which has put me in the bad parent position of giving her reality checks daily.  I just want to know if I am the only one....am I the only mother who is impatiently counting down the days where I can fully enjoy my beautiful daughter without her driving me crazy??  I ask for prayers in this and my struggle with overlooking her flaws like God does in me and seeing the good and fun in Brylea everyday.

I am sorry if this is a post you were not expecting but due to my connections in this matter being very few and far between I needed an outlet.  And in a bad way.  I hope I am not being taken wrong either.  Just a mom...who loves her daughter...who admits to having bad days.  That is all. 

Third Time a Charm?

I know that today is probably not a good day for most of you. Afterall, its "Tax Day". The dreaded day where the IRS comes in and tells you how much you owe.  Unfortunately, this is also the day that I start my last minute fundraising for Brylea and the Arthritis Foundation. 

Last year, I decided to actually do fundraisers.  I did a 31 gifts fundraiser and a garage sale to boot.  I did really well and also with the help of Massage Envy of Rockwall we were able to meet our goal and go to Great Wolf Lodge for the annual Juvenile Arthritis Convention.

For those that are just now joining my blog on Brylea I will catch you up to date.  Every year the Arthritis Foundation does a walk to help earn money to go towards research for Arthritis.  A lot of people think it is like the Susan G Komen where to walk each member has to raise a certain amount of funds.  This isn't the case (luckily) with the Arthritis Foundation.  They put on a walk where people of all ages come out and you can also bring your dog to walk either the 1 or 3 mile path.  It is that easy.  The hard part is on me.  To be able to go to the Juvenile Arthritis Convention at Great Wolf Lodge each year I have to raise $2000 for the foundation.

Two years ago, I just simply asked for 100+ people to donate $20.  That was it.  It was easy and I made my goal.  This year since I have had so much going on with homeschool, my school, dance, basketball, and a new job I have had no time to organize and plan actual fundraisers.  Therefore, this year I am going back to the original plan.  I am looking for 100+ to say that can donate to the cause.  If you don't have $20...$5 will do.  Or, if you are "broker than a joker" simply share this blogpost on your FB, Twitter, Pinterest, etc asking for donations.  It is that easy!  Or...if you are an incentive driven person you can participate in this fundraiser put on by my friend Allison C. to help not only raise money for Brylea but also you could get a sweet deal out of it too!  Check out the link for more details and contact info:

https://www.facebook.com/#!/events/514925228553088/

If you are anxious to donate (which I am SURE you are!), you may be wondering *how* to donate.  That is easy as well.  I have set up a savings type account for Brylea at our Chase Bank.  All you have to do is give either my first AND last name or Brylea's full name and they should be able to pull it up.  If you are needing some kind of confirmation to make sure it is the right account the last four digits are 8133 to the account.  If all else fails, comment/text/e-mail me and we can figure it out together.

Lastly, if you are wanting to walk I encourage you to come out with us!  We walked last year and it was nice to walk and visit with my friends while supporting a good cause.  If you want to walk please let me know by May 1st so I can order and price t-shirts for us.  The walk is May 18th and the details can be found here:

http://www.kintera.org/faf/home/default.asp?ievent=1045457&__utma=1.1333829668.1366028646.1366028646.1366028646.1&__utmb=1.6.9.1366028681994&__utmc=1&__utmx=-&__utmz=1.1366028646.1.1.utmcsr=google|utmccn=(organic)|utmcmd=organic|utmctr=(not%20provided)&__utmv=-&__utmk=215169559

Just one more thing before I go.  If you or your workplace would like to sponsor Brylea I would be more than elated to accept that!  Please contact me if you or your workplace would like to sponsor Brylea this year on the walk.  I would happily market your business and put your business on our shirts as well!!!

Thank you so much for taking the time to read this.  I know that I am asking a lot since that gives me a month to raise $2000.  However, I work best under pressure and do the most work in that 11th hour.  I know it can be done since two years ago I raise more that than in less amount of time.  Before you think that I am just pushing to earn money for a vacation let me clarify this as well.  At the conference, I get to meet parents that know what I am going through.  Brylea gets to meet kids and bond with them that are going through what she is going through.  Plus, we get lectures on up to date treatments, medicines, how to handle her situation when she goes to school, etc.  It is more than play time for us.  It is a chance to understand what Brylea is going through and aggressively treat this disease that attacks her everyday!  I will post as much as I can on the status of the fundraising.  Thank you once again for going on this journey with us and helping us find a cure for Arthritis.

Nothing Much Goin' On...

Today I braved destiny and decided to take all four kids with me to Scottish Rite.  It really wasn't that big of a deal.  The older two escorted the youngest around to look at trains and fish while I was able to keep Brylea entertained in the room.  It was a pretty non-eventful visit.  They are continuing to notice how Humira is working for us (mixed with Methotrexate).  I was happy to report that Brylea has only asked for pain meds twice since our last visit in January.  The only thing Dr. Wright saw was that Brylea's left wrist seems to still be a little more swollen than the rest of the joints and doesn't show that great of improvement.  Therefore, she is ready to take the next step.  Sometime in the next few months we are going to do what is called a "site injection".  Radiology will do an ultrasound on her left wrist to mark precisely where to inject meds into her wrist.  We will go back in June to re-assess her progress.  Right now we are only talking a one time site injection and hopefully that will do the trick.  

On a side note, I think I get excited for Scottish Rite visits just for the simple fact that I love eating in their cafeteria.  Food is good and fairly cheap.  Plus, they have enough variety for everyone.  It has been a tradition to go and eat in the cafe everytime we go now (besides getting the popcorn!).

Other than that, we just sit and keep giving Brylea her weekly injections.  The only side effect we have found from the Humira is a pretty bad reaction to the injection site.  The only trick that we have not tried is giving Bry Benadryl before we give the shot to help counteract the reaction.  Will try it this Friday and see if it works :)

Ampin' It Up

     So we went back to Scottish Rite to follow-up on how Humira is doing in treating Brylea's arthritis and to also get the results from her MRI and CT scan.  The good news is that I have noticed with the rain and cold Brylea is doing REMARKABLE.  The stiffness is pretty much non-existent but her swelling is still there.  What the MRI showed is that the inflammation/swelling has gone down since her last MRI.  However, the bone damage is still pretty severe and has confirmed how aggressive the arthritis is that Brylea has.  The CT scan showed that the nodules in her upper respiratory has pretty much resolved and the lower respiratory nodules are shrinking.
      However, the Dr. still sees the arthritis and feels it whenever she is doing her work-up on Brylea and doesn't think the Humira is fighting it as fast and as much as she wants it to.  Especially since the bone damage is pretty severe and it is affecting the body parts that Brylea is going to need for the rest of her life.  You can not fix bone damage already done but it can repair a little as her body grows.  Therefore, instead of doing Humira every other week she wants it done every week.  We go back in March to see if that is working any.  She is hopeful regarding what she sees but it is the MRI that worries all of us a little. 
      I have to wait for the Pulimonologist to call me with their official word on what they see in the CT scan but I feel like it will be good news.  Other than that we are going to keep doing what we are doing and I feel like Humira is going to be our miracle drug!