"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!