Back to Square One

On Sunday night, we were at a prayer meeting.  Brylea came limping in from the gym area saying she had tripped but the way she was walking was a little scary.  It was definitely a flare up but what was so alarming was that it came out of nowhere.  I figured with a little rest she would be okay the next morning.

However, that next morning she was not okay.  She was limping severely.  She was not complaing of pain but you could tell that walking was going to be difficult.  I knew that we had done the Scottish Rite path before and I was hesitant to go back and explain why exactly we had been gone since February of this year.  So, like a chastised dog I called Scottish Rite for help.  They immediately got us in today.  Not only that but we met a new Dr.  I was upset seeing a new face but quickly got over it once I got to know her.  She was Dr. Wright.  She sat down and took the time to really talk to us and assess Brylea.  I guess, in a way, we were lucky that Brylea was still limping today so that Dr. Wright could see what we were talking about.  She was truly concerned for Brylea.  She says that the arthritis Brylea has is very aggressive.  She also was sincere in wanting to know what treatment we wanted.  She said she would consent if we decided to stay with homeopathy but of course she was biased in the medical field.  Nathan and I knew that we needed to make a decision concerning her treatment.  We decided to get Brylea back on the Naproxen, Methotrexate (which she upped her dose a tad), and Humira.  I was thankful that Nathan was there so that he could ask his questions and for both of us to express our concerns with the medicines. 

I am also thankful for the fact that we were able to go to the Juvenile Arthritis Convention so that Nathan could also hear the good & the bad about each of these medicines.  However, we both knew time was of the essence and with the cold front coming in Friday we needed Brylea to start her treatment as soon as possible.

I want to scream how this sucks and this isn't fair.  Everytime someone wants to offer their two cents on what to take, how to handle it, or what they heard happened to a friend of a friend of a friend I just want to cover my ears, close my eyes, and tune them out.  We are learning with this just like everyone else.  I wish there was a blanket treatment for everyone.  I wish it was that simple.  However, its not.  What works for Suzie Q might not work for Brylea.  I understand that people are trying to help.  I truly do.  At the same time, I can only take one thing at a time.  I can say what has worked (or for now what has not worked) from our individual experience.  I just know that I have a little girl in true pain but does not voice it because the pain is all she knows.  At some point you have to take a step back and say that if this was your child how far would you move the earth, mountains, and everything in it to make it all go away.  That is what Nathan and I are doing.  The best way we know how at this point in time. 

I am thankful for my wonderful mother-in-law who has yet to skip an appointment to be that playmate for Brylea.  I am thankful for my husband who gave up a vacation day of his upcoming camping trip to just be there.  I am thankful for the encouraging texts from family and friends.  I am also thankful for the "strangers" I meet who say that they are praying for Brylea.  A few months ago, at a function of my grandmother's I met Mary and Nancy.  One of these precious ladies admitted that everytime she passes her dresser (I believe and hope I am not getting this wrong) she prays for Brylea.  My daughter is in the prayers of many!  That is one advice that I freely take and give.  I serve an awesome God who rubbed dirt in the eyes of a blind man to make him see, with the simple words out of his mouth caused the lame to walk and also calmed a raging storm.  I know, I KNOW, God has a plan for my Brylea.  He has already blessed her with optimism and a wonderful personality & charm.  All we can do is trust Him since He trusted us to take care of Brylea while she is here on this Earth.

Things that I need prayer over is the fact that I am going to need a lot of time off of work due to updated visits, MRI visits, Pulminology visits, and ENT visits.  Also, for now insurance does not cover her Humira.  I was shocked with the $827 bill at the pharmancy.  However, I have called the Specialty Pharmacy section of our insurance and they are working on not only approving it but I pray that the cost is severely LOW!

Other than that, all I can say is thank you and keep praying!!!

Rollercoaster

These past two weeks have been kind of emotional one for some reason.  I have had bouts of teetering from being on the verge of crying to just full out bawling.  I do not know why this is.  I wish I had an answer. 

Then, there has been Brylea.  She is back to hurting again.  Especially in her hands.  She cries about EVERYTHING.  She is demanding.  She is annoying.  She is trying.  And I just want to be able to take a deep breath since Summer has started.  I thought that summer would be easy.  Afterall, its Texas and the heat should be good for her joints.  I am wrong. 

I also admit that my faith usually gets me through.  I wish I could sit here and type that I found verse after verse to calm me and get me through this but I have not.  I don't have a spiritual application for what I am going through right now.  I just consider it a trial and at this point I can sadly say that I am allowing Satan to get to me.  I see my daughter limping, trying to keep up, and even trying to get dressed.  Normal tasks that any 3 (almost 4 yo) should be able to do with ease without getting wore out but she cannot.  Sunday was my breaking point.  I was sitting in the car talking with hubby about how I felt.  I want to say I am doing everything that I can to help her but I know in my heart I am not.  When she turns 20 and looks back on her childhood can she smile at the fact that her parents did all they could so that she could have a fulfilling life??  Or (in my always negative thinking) will she be crippled, look back and wonder why we did not do enough or why she wasn't loved enough to fight for.

I know I am just "being a girl" but these are things that I am truly struggling with right now amidst other things that just seem to be piling on.  I think I have been in "protector" mode for so long that I have yet to truly process the fact that my daughter has arthritis.  I have had to be strong for everyone else that it is finally hitting me.  I am finally starting to grieve about this.

I have heard of another pediatric rhuematologist that has recently moved her practice from Houston to the Ft Worth area.  I have decided to give her a call and get yet another opinion on how to treat Brylea.  I am wanting to go to a Dr. that is the same Dr. I see every visit without having to go through all of Brylea's history (again) and get a new diagnosis/viewpoint each time.  I excitedly called today because I felt like I am moving forward with my daughter.  However, the soonest they can get Bry in is December 4th.  I am alittle discouraged since I wanted her to be seen before the cold snap comes back.  But I also know that it is better than never.  I am asking for prayers for not only Brylea but for myself as well.  I am letting Satan defeat me right now.  I know God has an awesome plan but my soul is too weary to look onward on what that is.  Thank you to all of those that still ask about Brylea and let me know that you are still praying!!

Arthritis Walk 2012

Today we participated in our first Arthritis Walk!  We were so excited and full of energy (that was short lived lol).  We walked three miles.  Well, Nathan pushed Brylea and Levi 3 miles in the stroller.  Thank you to everyone who helped with the fundraising to go to the Arthritis Foundation!  I am excited to announce that we did raise enough money to be able to attend the Juvenile Arthritis Convention at the end of September at Great Wolf Lodge.

I also want to take this oppurtunity to thank Massage Envy in Rockwall for all that they have done for not only Brylea but us.  Ms. Rhonda is awesome at being able to give Brylea messages twice a month to help her when she is hurting.  Brylea gets these for free thanks to Kenneth at Massage Envy in Rockwall.  They also donated the funds to make Great Wolf Lodge possible today.  Then, at the walk we were presented with an extra blessing at the walk by Kenneth and his wife, Celeste.  Even Nathan had tears in his eyes over the generosity given.

We came home tired/exhausted but happy to have been able to have participated in this great cause!  Thank you to those that came and walked with us: LeAnn B, Madison B, Logan B, Braden B, Michele F, Kylie F, Allison C, Addison C, Shannon F, Ursula W, Lexi W, Andy W, Nathan L, Lexi L, Caleb L, Brylea L, and Levi L.  Excited to start a new tradition with Team Queen B's!

Holistic Approach

So, back in February (and after our last Scottish Rite appointment) Nathan and I decided that maybe we should try a more natural approach to Brylea's Arthritis.  We decided to take her off of her medicines and see what the holistic Dr. would say.  After several appointments, disguising supplements (and successfully failing), getting rid of dairy/gluten, and one strange castoral oil treatment we are liking the results.  Now, it was not an overnight success.  There were times when I cried with Brylea over the pain.  At the beginning of the detox period she was not mobile at all.  She was swollen and in severe pain.  However, with the warmer temps coming in she is doing SO much better!  We are still trying to figure out how to get her natrual supplements in her but for now she is acting normal again.  She still has the swollen joints but they aren't as red and in the mornings she is not nearly as stiff.  It is truly a blessing!

Secondly, we have been doing good with our fundraising.  We made around $600 at our one day garage sale.  Next month's fundraiser is a raffle.   Donations are coming underway right now as we speak.  I am excited about our fundraising progress so far.

Another awesome oppurtunity that we have is Massage Envy in Rockwall has granted us a scholarship for a year's worth of massages for Brylea for free.  I went today and met with Becca the manager and Ken the owner.  I am excited for this oppurtunity that was given to us my a fellow Arthritis friend, Ro.  I will keep you updated on the raffle as I get more donations in.  I am excited about those already coming in!! 

Thank you so much for those that ask for updates and pray for Brylea.  She is a tough kid with a stubborn personality!

New Year for a Fresh Start

Ok...I feel like such a bad mom...really...or maybe just a highly unorganized mom disguised as one that has it together.  I am here to break free and admit I so do not have it together.  However, new year means a fresh start.  Starting with this blog.  I am determined to keep up with this.  That way I can get Brylea's story and latest updates to those that ask (which we LOVE the asking and the PRAYERS)!

We went to the Dr. in December.  They did not like the fact that after being on a cocktail mix of Methotrexate and Enbrel that she was still limited in her joint mobility.  The swelling has never gone down in her hands and feet.  However, her overall mobility is great.  We have noticed that if we skipped a dose of her meds you could immediately see a difference.  Plus, living in Texas and the weather being crazy whenever a cold snap hit it hit Brylea the most.  She had an MRI and X-rays on December 29th.  They also re-tested for any other underlying autoimmune diseases since her arthritis is so rare.  We went back on January 9th for the results.

What they found is the same.  The MRI showed swelling/inflammation around the wrist.  However, her blood work came back normal.  They still did not like the results from the Enbrel so they switched her to Humira.  The good is less injections.  The bad is that the Humira is a physically painful shot.  If the Humira does not do the trick then Brylea will be the youngest patient to recieve the infusion medicine Orencia.  I am not a big fan of Plan C.  Therefore, I have an appt a week from today for a homeopathic Dr. to look at Brylea and see what his plan would be.  I do not think it could do any worse and I am very optimistic.

Now, enough with the medical update.  I am also writing this post because in May there is a big Arthritis Walk.  I am so excited about this!!  As many of you know (and helped TREMENDOUSLY) I had 13 days to raise $1500 to be able to go to Great Wolf Lodge in September for the JA conference.  This time, I have til May to raise the money.  I already had my first fundraiser this month and in the two weeks that I had it going I raised$133!  This is a good start!  For those that were not able to participate there will be plenty of more oppurtunities!  On March 3rd, there will be a Skate-a-thon in Mesquite from 12-5.  It will be $5/person and part of the proceeds go towards Brylea.  I just need 60 skaters (minimum).  However, I will be getting flyers to pass out at my places of employment and possibly my children's school.  Also in March I am going to start collecting items for a garage sale at my house.  I am hoping this will be the big ticket item to help me get to my goal!  So, start your Spring Cleaning and remember Brylea before throwing anything out!!!

Ok!  I think I am done for now!  I will update more on the fundraisers and on Brylea's progress.  We go back to Scottish Rite March 5th.  I am hoping that whatever the homeopathic Dr. suggests will have some effect on Brylea so that we can steer clear of the Orencia.