What's The Difference?

That's right!  Brylea got her cast off TODAY!!!  Nathan recieved a call from Scottish Rite today.  The hand surgeon called to let us know the results of the biopsy.  Turns out the tissue from her wrist and the nodule from her elbow are the cause of rheumatoid arthritis.  SO, we do not know what that means.  We go back to see the Arthritis doctors on June 7th.  Until then, we continue to pray!

Good news is that the hand surgeon said there really was no reason to visit Scottish Rite to have them take off the cast.  All we had to do at home was unwrap it.  So we did.  The wounds look good.  There seems to be no infection and it took awhile but Brylea can straighten her elbow and bend her fingers.  She took her first bath (and Bubble bath is what really was) for the first time in almost two weeks. 

With the rain that came in last week, it caused her to limp and be really sore/stiff.  By the weekend she was fine.  However, now she has these red bumps on the back of one leg and the front of another.  I will have to let the doctors know about this and see if it, too, is related to the arthritis.  I am hoping/praying with this next visit we can see about taking her off of the Methotrexate.  It is not working and a very scary drug to be giving a 2 yr old (IMHO).  Thank you for the continued prayers and for those constantly wanting updates.  It is awesome to see how the Lord brings people into your life to remind you of His love and care for us!

Breathe In...Breathe Out....

It has almost been a week since Brylea had her biopsy.  She is doing great with her cast!  We are trying hard to keep it dry and clean but its been kinda hard.  Especially for Brylea.  She cannot go outside and that has been a downer for her.  However the preliminary thoughts of the hand surgeon is that it looks to be a rheumatoid nodule which is very rare for a child especially a child as young as Brylea.  The pulminologist saw us today.  She thinks that a lung biopsy is not necessary (Thank God!!).  She also thinks that as far as she is concerned Brylea's condition is not linked to anything pulminary related.  So, no more pulminologist visits.  However, she is concerned with Brylea's tonsil size and she has another ear infection so she is referring us to an ENT.  HOWEVER, I am feeling alittle overwhelmed as far as the medical field is concerned.  I am not ready to jump into another specialist with more tests and surgeries.  Therefore, I have put a call into our pediatrician to see if we can hold off on an ENT for now.  I want to get her opinion before we do anything else.  Other than that Brylea has been the same.  She has not gotten any worse (is that grammatically correct??) nor any better.  She is in a plateau in a way.  She is still swollen, still limps a little, and still has nodules.  The methotrexate is not working so I am hoping when we go back to Scottish Rite June 7th they can take her off of it.  We go back May 18th to get the cast off!  Cannot wait for that day!

Next, I would like to say a thousand thanks to those who have prayed and prayed for our daughter.  Thank you to my mother in law, Karen, who has been Brylea's cheerleader.  She has been to every appointment and helps Brylea have fun.  She also shared with me an e-mail from a woman who prays for Brylea.  I HAVE to share this e-mail.  It was beautiful:

I am so glad to hear from you, The "Little Angel" has royalty all around her, now they have crown her arm with purple, yes PaPa does work wonders and he will receive the glory.  I will continue to pray for God little angel and your family.  Have a wonderful weekend and Happy Mother Day.  God will take care of you and your family.  Love you in Christ, Linda

I also want to thank my dad for the adorable Hello Kitty Edible Arrangement.  It was almost too cute to eat but Brylea insisted!!

In Sunday School, it was mentioned about quiet time and the Lord.  Sometimes you will read a passage and you think it doesn't really apply to anything at that moment but then you will get that "AHA" moment and everything clicks.  I have been reading Isaiah.  I am not a scholar but in this book it is addressing Israel and the fact that they have slowly slipped away from Yahweh.  The Lord speaks of His curses but then is reminded of how He is going to save them.  At first, I applied it to the state of our country.  But then I slowly started seeing the parallels in my own life.  The past month and a half have really hit Nathan and I.  We are seeing our own struggles in certain areas of our life.  Of course, there is Brylea but other things have hit us hard.  As I read Isaiah I realize that God puts us in the valleys so that we can see how awesome He is!  I went on a ladie's retreat and the speaker even mentioned that flowers bloom in the deepest of valleys.  I know that our situations that have hit us are completely out of our control.  I have cried and I have stressed, yes, I will admit.  However, now I have to take a step back and realize that all the crying and temper tantrums is not going to pull me out.  I need to fully turn to God and fall into Him to see how He is going to bring us out of this.  I have a certain peace about me now in knowing that He has not forgotten us.  One day we will look back in amazement of how God works.  It is in these times that I am so thankful to be a Christian and to know that there is hope out there.  I am God's child...along with Brylea...and along with my family.  He loves us and wants to give us our heart's desires.  We just have to sit back and let Him take control. 

Scottish Rite Appointment

Before I give an update on today's appointment let me bring everyone up to speed on where we are.  At our last Scottish Rite appointment the Director of Rheumatoid Arthritis saw us.  She thinks that Brylea no longer has rheumatoid arthritis but something else.  She still has inflamed joints with pain.  However, Brylea is growing and functioning normally.  Also,  Brylea developed nodules on her elbows at the end of last summer.  They also see nodules on her lungs.  After numerous X-rays and a CT scan they are still worried about the nodules so they sent us to a pulminologist at Children's.  The pulminology Dr ran her own tests and has her own theories.  We also spoke to a hand surgeon.  They are wanting to do a full biopsy on her elbows (versus a lung biopsy) to see what could cause the nodules and maybe lead us to an answer of what is causing her so much pain.  We go in this Wednesday for a full biopsy.

I was sitting at Scottish Rite thinking over this biopsy.  My baby is having to be fully sedated through an IV to really get a good, clean biopsy.  I am now a nervous wreck thinking about this.  I know that the Lord is ultimately in control but my human, motherly nature is taking over.  I know that this is something that is needed to figure out an answer to Brylea's mystery.

That leads us to today's appointment.  Since the pulminologist really did not have any answers (yet) and the biopsy has not been performed the Dr.'s could not really do anything for us or Brylea today.  However, it was brought to our attention that depending on the results of her biopsy of her elbows it may lead to a biopsy of her lungs.  This completely frightens me.  So, now I am asking for prayers on Wednesday's biopsy.  I am praying that the lung biopsy will be unnecessary.  I also was able to turn in a urine sample to the lab today for the first time since we have begun this process.  I was told that urine samples can give way more information than the bloodwork that they take every month.  I am praying that maybe something will be found there too.  Thank you for the continued words of encouragement and prayer.  They are greatly appreciated.

We have to be at Scottish Rite on Wednesday at 6:30 in the morning.  Our next pulminology appointment will be Monday at 2:00.  I feel like we are finally making progress.  I just want to see answers and relief for Brylea. 

I read this verse this weekend and this is what I am clinging to get me through the next week: "Therefore if you have any encouragement from being united wtih Christ, if any comfort from his love, if any common sharing in the Spirit, if any tenderness and compassion, then make my joy complete by being like-minded, having the same love, being one in spirit and of one mind" Philippians 2:1-2