The Little Things

As a mother (or a father I suppose), you dream big for your children.  When they are born you look forward to the days when they can crawl, walk, say your name, and even comfort them.  One of the things that the arthritis has prohibited Brylea is the fact that she does not want anyone to hold her hand.  It is almost as if it hurts.  So walking alongside her, we as her parents, just huddle around her to make sure she doesn't dart anywhere. 

The other night she crawled in the bed with us.  As I was falling asleep she scooted next to me and whispered, "Hold my hand, Mommy."  It was the sweetest words (next to "I love you") that I have ever heard come from Brylea's mouth.  I gently moved my hand over and placed it in hers.  I cherished that moment and probably will for the rest of my life.  For the first time in 3 years I had finally felt Brylea's hand in mine.  It is the small things like this that help me through the days when I am uncertain about the future.  I do know that God is in ultimate control and I have given this illness to Him.  A few weeks back our youth pastor preached on James.  James 1:2-3 says, "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance." (NIV).  I find glimmers of joy through all of this.  This last "glimmer" had me so OVER joyed that I had to share it.

I also wanted to let you know that Brylea has been doing good.  With the colder fronts moving in it hinders her a bit in the mornings but nothing too severe as of yet.  We (actually I should just say "I") have been preparing for the Juvenile Arthritis Conference this weekend at Great Wolf Lodge.  We recieved our agenda for the weekend and I am super excited to be able to network with other parents and also discover more about this disease.  I wanted to say THANK YOU to everyone who donated to help make this possible.  This weekend would not have been made possible without the support of so many friends, family, co-workers, and even strangers coming together in a short amount of time.  I will take lots of pictures and cannot wait to share them!

Happy Anniversary

Well, we have come to our one year anniversary of finding out about Brylea. I feel in a way we have come a LONG way from a 1 yr old that limps and has "chunky feet" to a 3 yr who has been diagnosed with rhuematoid arthritis but I am still learning terms, medicines, reactions, and the list goes on and on. Luckily I am finding other moms who have lead me in the right direction and to let me know we are not alone in this.

We had our follow up today. There is good news. Everyone is seeing improvement with her meds. However, they think something else may be going on with Brylea they just do not know what specifically. She definitely has RA but she has other symptoms no one has ever seen and only read about. For now they are happy with her progress. Her fingers are starting to curl a bit. So, she will be wearing a soft splint at night so that when her wrists are resting they do not naturally curl up like an arthritis patient but instead rest in a more level position with her arm. I would take a splint at night over more meds anyday!

In all of this Brylea has shown through. She now runs, jumps, and is a more active child. As she was growing she was very particular about not holding her hand while she walked. A few weeks ago at church she actually wanted to hold my and Nathan's hand. It was awesome! We take those small moments and rejoice that God is healing her and has a special
Plan for her. And in that I know God has not left me or Brylea. In the words of a leader in our church Sunday "He is molding our particular path" to glorify Him more!

thank *YOU*

Okay!  I am *so* excited about this post!!  First of all, Brylea started her Enbrel on July 22nd.  You can tell such a tremendous difference in her as well.  She runs and jumps and has so much energy!  It is awesome to witness.  However, for us, she now is hard to put down at night because she wants to be up and playing.  Now we just have to get that balance for her (and our!) sake. 

Secondly, I decided to save the best for last!  Not only did we meet our goal but we went beyond our goal!  I am happy to announce that I am sending the Arthritis Foundation a check for $1,643!  Thank you!  Thank you!  Thank you to those that donated and I was not aware of and thank you to those that just simply spread the word on through Facebook, e-mail, and word of mouth.  I now would like to take the time to personally thank the following people: 

Academy Kids

Matthew and Lori B.

Ed and Cara B.

Breanne C.

Aaron and Marlene C.

Benny and Cathy C.

Dad

Tommy and Janice F.

Odessa F.

Tabitha G.

Kari G.

Pam "Hairdresser"

Karen and Frank H.

Aimee H.

Shane and Megyn I.

Carlton and Leann J.

Grant and Amy K.

Shannon K.

Stefanie L.

Chasity L.

Marcee M.

Troy and Glenda M. (Abba/Immie)

Brad and Stacey P.

Michael and Lorie P.
Nova and Rhonda P.

Laura R.

Tamara S.
Vonda S.

Teen Challenge

Bridget T.

Kyle and Maria T.

Mark and Juli V.

Taylor V.

Doug and Kara W.

Christie W.

If I forgot anyone, I sincerely apologize.  I tried my best to keep track of who donated.  If I forgot you please let me know so I can GLADLY add you to the list. Thank you!  Thank you!  I am so excited about what this conference will do for not only Nathan and I but also for Brylea!



FAQ's...

I have had questions raised and I would like to answer them here on the blog.  First of all, in my blog requesting $1500 it has been asked that if the conference is free then why do I have to raise so much money.  That is because I completely forgot to mention that originally.  The reason the conference is able to be free is because the Arthritis Foundation would like for each family to raise the money for the Arthritis Foundation.  This is just like any other cause like Walk for The Cure or the Susan G. Komen Foundation.  You can read all about it at http://www.arthritis.org/chapters/texas/ja-family-weekend.php. 

Another question is who to make the checks out to.  You can either make them out to me (Ashlea Longenecker) or to my daughter (Brylea Longenecker).  Wells Fargo will accept them either way.  Also, if you have any questions trying to find the account please feel free to e-mail me (longawhats02@yahoo.com) or message me through Facebook and I can send you the account number.  Both venues go straight to my phone so as soon as I see the alert or e-mail I will answer right away.

Thank you so much to everyone who has donated or pledged to donate so far!  I am getting more and more excited with each $20 donation that Brylea is receiving on behalf of the Arthritis Foundation!

When Oppurtunity Knocks...

  Over the course of learning about what Brylea is dealing with I have had several people contact me and ask what they can do to help.  It seems everytime my answer is prayer.  However, today my answer is a little different.  I was introduced to a woman whose daughter has been dealing with arthritis for 7 years.  She has introduced me to an opportunity that I CANNOT pass up.  This is where I am asking for your help as well.
  In September, there is a weekend long conference at Great Wolf Lodge.  This is not some ordinary conference.  It is a three day chance to talk with fellow doctors, nutritionists, and parents who are knowledgable in arthritis.  This is a chance for Nathan and I to get a better perspective in how to help Brylea.  This is a three day weekend where Brylea can meet other children going through exactly what she goes through.  I believe this conference was meant for us to learn as a family how how to treat arthritis. 
  Now, this is where *YOU* can come into play.  The conference is free.  Absolutely free.  There is just one catch.  We have to raise $1500 by JULY 31ST to be able to attend the conference.  I know...I know!  That is THIRTEEN days away.  I understand this.  However, something inside of me is screaming that I have to try.  I have to try for Brylea to raise this money.  I realize I do not have time to organize some kind of charity fundraising event.  This is why I am writing this now.  This is it.  This is my only way of getting my message out to everyone.  I spoke with my mother and she had a great perspective.  All I need is 75 willing people to donate at least $20.  I have OVER 300 friends on my Facebook alone.  I see posts and reposts about cancer awareness, autism awareness, "If you are Truly My Friend" reposts.  Now I am asking for a repost of this blog post.  If you cannot donate $20...donate what you can.  If you are just financially strapped then I am asking that you repost this blog post to anyone and everyone.  Copy and paste it into an e-mail and forward the snot out of this.  I KNOW I can raise this money but I CANNOT do it without *YOUR* help. 
  The next question may be how to donate.  To make sure that people realize this is a legit fundraiser (and not a way for Nathan and I to get a down payment on a really cute sportscar lol) I have set up a benefit account at Wells Fargo.  All you have to do (or your family, friends, etc...) is walk into your nearest Wells Fargo and ask to donate to the benefit account set up for Brylea Longenecker or the benefit account set up by Ashlea Longenecker.  They will be more than happy to help you.  If you have any more questions feel free to contact me at longawhats02@yahoo.com.  Thank you so much for reading this!  I wish I had a gift for every donation like PBS but I don't.  I just have the hope that this conference can make a HUGE difference in Brylea's life. 

Thank you again!

The Longenecker's

 

Enbrel Here We Come!

So...to catch everyone up to speed.  On our last appointment the Dr.'s at Scottish Rite had decided to put Brylea on another arthritis medication (Enbrel).  It will be a twice/week injection (that we do at home) in conjunction with her Naproxen, folic acid, and her weekly Methotrexate.  I tried to get the Methotrexate out of the equation but supposedly the Dr.'s know more than I do.  :0)

With my prescription in hand I delivered to CVS back in the beginning of June.  Since then, I have had to make several calls to CVS, our prescription insurance, and Scottish Rite.  In the meantime, I have heard horror stories of how much this medication costs ($1400/mnth +).  Nathan and I were anxious at first but knew that God would provide somehow/someway.  Our insurance was declining the Enbrel request since they prefer Humira (another arthritis medication) and I had to go through our "specialty pharmacy" to get the prescription filled.  My insurance had to triple check to make sure that Scottish Rite absolutely wanted Enbrel specifically (hassle!).  However, today I spoke with our insurance today and they were going to call HR to get the override to get the Enbrel approved.  The customer service rep said I would get a call back by this afternoon letting me know what was going to happen. An hour later I get a call back letting me know that the Enbrel was approved and they would be shipping it directly to me.  However, it GETS BETTER!  I only have to pay a monthly co-pay of $50 (!) to get delivered.  God came through and now we will be back on track with a regimen that will hopefully help Brylea.

This summer had been going really well for Brylea.  Fortunately for her there has been no rain or cold fronts so she has been feeling good.  However, on Thursday she had her first nosebleed.  The Dr.'s ask every check-up if she has had one so now I am watching for further incidents and hoping this is the only isolated one.  I do not know how nosebleeds are connected but I am thinking its a bad sign from her medications.  It may have just been a fluke from the hot air that we are experiencing.  But since then she has been swollen and really limping for the past few days.  As much as I hate the thought of my daughter receiving 3 injections/week I am hoping that we can see drastic improvement.  With my couponing I have stocked up on cute Band-Aids hoping to help the cause.  Thank you everyone for your inquiries and prayers!  I am still on my Happy Cloud from the good news received today!

Big Girls Don't Cry

So today was the *longest* appointment ever..I think..lol.  Thankfully my wonderful mother-in-law came to help since all four kids got to experience Scottish Rite today.  After much waiting Dr. Naprassi came in to discuss what they think we should do next for Brylea.  It was determined that so far nothing is helping her.  Another Dr. from rheumatoid was there as well.  She dealt mostly with adult rheumatoid and told me that since the biopsy showed that the nodules were rheumatoid related that Brylea is extremely rare.  Therefore, they are wanting to get more aggressive with her arthritis.  Along with her Naproxen and weekly Methotrexate injection we will also be adding Enbrel to the mix.  Enbrel will be a twice a week injection since Brylea is so young.  I am skeptical at this news.  I am hoping with the Enbrel injection along with the Methotrexate injection that she will feel instant pain relief.  I was really hoping to get her off of the Methotrexate since it is such a powerful drug but no such luck.

Brylea also had developed a rash that almost resembles excema.  So, the next step there is to see a Dermatologist to see if maybe it could be excema or another disease related symptom.  The rash has them somewhat baffled at this point as well.

We go back in July to see if the injection cocktails are working.  However, they were really taken back by her joint inflammation especially in her wrists.  If the newest regimen does not work then they will go to joint injections as well.  I am praying that we do not have to add any more injections to my almost 3 year old's body.  I want her to be a normal child (as much as she can be).

Pray for my husband as well.  Brylea is his little girl.  They are very close and this breaks his heart.  He sees children playing sports or even games at AWANA and he wants so much for Brylea to be able to join them.  I take the motherly approach and know that Brylea is going to accomplish whatever she sets her stubborn mind to.  I just wish my husband would join that same bandwagon.  Thank you for those that continue to pray and ask about her. 

Philippians 4:6-7 - Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

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

Ragamuffin Gospel

I have been diving into this book to learn more about God's grace and love. In doing so the author, Brennan Manning, quotes Psalm 8. I love how it is paraphrased in this chapter and thought I would share it.

Yahweh our Lord, how majestic is your name throughout the world! Whoever keeps singing of your majesty higher than the heavens, even through the mouths of children, or of babes in arms, you make him a fortress, firm against your foes, to subdue the enemy and the rebel. I look up at your heavens, shaped by your fingers, at the moon and the stars you set firm, what are human beings that you spare a thought for them, or the child of Adam that you care for him?

Just beautiful!

Easter Sunday

Today is Easter Sunday.  We had so much to be thankful for.  We went to church and heard an awesome sermon over the Prodigal Father (or more commonly the Prodigal Son).  We went to my grandmother's to celebrate with family.  However, this weekend has been hard on Ms. Brylea.  She is swollen on her feet and has been limping since Friday morning.  She usually limps but this weekend she was really struggling to walk and even whined about how her feet hurt.  It is obvious that her daily regimen is not working.  My husband and I are really hit hard today.  As a kid you see Easter as a time for egg hunts and sugar highs.  Not for Brylea this year.  It is about trying to keep up and eat as many Smarties as possible.  Even though she has a smile on her face and it may seem she doesn't have a care in the world, we as her parents, can see that she is in pain.  This afternoon let up for her but by the time we got home the day had taken its toll.  She chooses to relax in a hot bubble bath until Dora comes on.  I am hoping tomorrow will provide some relief for her.  We have not been able to see any correlation to her daily activities and her pain.

As a side note, Nathan and I have been truly blessed by the prayers.  Even my mother-in-law was in tears two Sunday's ago by all of the sweet, sweet reminders of prayer for Brylea.  We get weekly reminders of how people are praying for our daughter and even requested updates.  This truly makes us grateful for friends and family and even acquaintances of the two.  I know that the Lord has a purpose for all of us.  I know that Brylea's condition is under His control and that he has not forgotten her.  There are times when I wonder why but then have to remember that she is God's beautiful, growing daughter that has a personality that makes us laugh all the time.  However, as a mom I want to hold her and take the pain on myself.  I want to tell her that it is going to be ok and that it will all go away but I can't.  The most powerful thing I can do as a mother is pray for her and put the situation in God's hands.  I am thankful that she is functioning like a normal two year old.  I am thankful that for the most part we have received free medical care for her.  I am thankful that she is advancing academically.  Most of all, I am thankful for the prayers that have been given up for her.  So, if you have prayed for our daughter we want to personally take this time to thank you and thank you again.  Thank you for taking time out of your schedule and your life to remember our daughter.  Words cannot express the gratitude!