Sunday, August 28, 2011

Shot night mixed with Compassion

Tonight is shot night...  (it used to be Saturday)  Humira,for Abbie and  Methotrexate for both Abbie and Jeffery...  Bailee heard Abbie scream into a pillow and comes over and said, "I will hold your hand"  We did her MTX second and it apparently doesn't burn and she said, "My hold your hand Abbie??  My help you not a cry"  Jeffery was second and he is very brave ALWAYS...  for his shots. I told Bailee "do you want to hold Jeffery's hand and help him feel better?"  Bailee said, "yes, My help him not a cream"  She comes over holds his hand and talked him through his shot," Don't cry Jeffery, my right here, My love you, my sorry you have a shot, my love you my right here..."  The one thing i have learned from this whole Juvenile Arthritis experience is how much my kiddos love each other, how much compassion they have learned for each other...  With this I have learned I have done something right as a parent, I have taught compassion.

There are days, when I hate this disease, more often than not...  today, for some reason even after the horrid Humira, Im grateful for the compassion and love in my home that my children have for each other...  in some ways, I wonder if even though this is a debilitating disease if part of the blessing in this is...  what we all are learning from each other....  to love each other more a learn more compassion than we might have.

Tuesday, July 19, 2011

First Humira injection

Okay so Im not sure how i feel... well, yes, I am...  HUMIRA...  You DAMNED well better help my baby girl...  You burned, you made her cry and broke my heart to hear her scream!!  I hate that you did that.  I held her for 45 minutes last night till she stopped sobbing...  You suck!  So you better be our magic...

This is my sweet girl...  Putting Ice and vibration on her leg to make it numb.  She didnt want to smile I told her she could smile for me...  Notice it is forced...  but she is a good sport!  <3 love her!

This is the medicine she was injected with ...

The moment I heard her scream, a part of my heart died.  I have injected her ALOT!!!  But to hear her scream like that because I WAS POKING HER...  just crushed me.  Even now typing this my eyes are full of tears for the sheer fact that I HATE hurting her.  I tell myself this is helping her...  It is...  But in this moment when your child is begging you please stop...  it burns mommy...  part of you just dies.  All the trust you build with your child from the time they are an infant feels like you just took it away from them...  and then...  this is what you have left....

A child crying in her mommy's arms begging you to never hurt her again...  She and you both know in 2 weeks it will happen again...  14 days...  of dreading and the anxiety that will go along with it...  I think im going to ask the rheumy for an RX for some anti anxiety meds for  me...  I have decided that with JRA moms need an automatic RX for something...  Even if its a liquor bottle...  Just sayin'

Saturday, July 16, 2011

The REASON for this Blog!

A & J  

Shots x 2

Post shots...  Not extremely thrilled but they are great at pretending <3

Monday, July 11, 2011

JA Nascar Truck racing

Go to this link It has a good story and a great pix, with a whole lot of JA kids signatures.  It will compete in 5 races...  I personally hope it wins every single one...  and that it will be the drivers good luck charm!

Sunday, July 10, 2011

Stacey's Video!

This is a video my wonderful friend Stacey made.  She has been an immense support to me since we started our Journey with JA.  She encourages and uplifts me more than she knows and I am so grateful for her friendship!   <3  Thanks Stacey for including Abbie in one of your videos!  Love you much!  Take a minute to watch it.

New Shades

So I know that eye protection is important.  I always have.  My kids were little and I bought them sunglasses...  but after a dozen or so pairs...  learned...  NOT to spend my money on them :o)

With JA there are LOTS of things to think about...  one of the things to watch is vision changes, inflammation redness...  They are all indicators of inflammation of they eyes.  With the MTX, it causes sun sensitivity.  We have to use sunscreen regularly...  (im terrible at that...  once upon a time I was good at it) If we don't, we end up with weird bumps under the skin and blisters. (not every child has this same reaction)  So when we were told Jeffery needed glasses, I opted to get him prescription sunglasses too!  So here are the pix of his great new shades! :o)

So here are the pix of my handsome boy!  Gosh I love this kid!

Shot night routine- Sick kids at school

So I have a weekly routine...

  • line up the meds...  
  • take the syringes out of the paper and plastic they are in..
  • wipe off the top of the vial with alcohol, even if it is a brand new capped vial
  • insert 27 gage needle into the vial
  • withdraw 1 ml of Methotrexate
  • re cap the syringe
  • remove the tip from the 29 1/2 gage needle
  • replace 27 gage with 29 1/2 gage needle
  • clean the skin with alcohol (R or L Arm , R or L Leg)
  • let the alcohol dry
  • insert needle
  • pull back plunger to check for blood
  • inject medication (while slowly counting to 10)
  • place finger over the needle site 
  • remove the needle
  • apply a bandaid
  • apologize to my child profusely how sorry I am that I have to poke them...
So this is was happening once a week...  now it is happening a couple of times a week... Since we have two children with JA.

 Can I just say that the steps listed in this order are exactly how I do it.  I dont know if everyone is like this,  I personally do a rundown of my "list" in my head and as I am working on one am thinking of the next step while I am doing it.  I feel this sense of anxiety, stress, and grief all at the same time as I look at my child and think...  WHY ...  WHY YOU???  Then I think about the other JA families, and wonder why them?  Why any of them...?  This is not like diabetes that can be controlled with insulin and diet.  This is not like any other disease.  The drugs I inject can cause cancer.  They can cause organ failure... so many horrible things CAN and DO happen.  I do this all the while feeling guilty to give them a better ADULT LIFE!  Who has to do this?  Medicate, inject,  and borderline torture your child just thinking of how they can become a "normal" adult?  

I wonder every time that I send my kids to school I worry about WHO vaccinates, and who doesn't...  I worry about who has had a recent vaccine.  Who's parents work, and because they dont have the days off or want their child to have perfect attendance sent their child to school so that mine will get sick...  These are the things ALL JA parents worry about.

If you are a parent reading this...  please...  think of this....
you are sending your child to school sick... (stay at home or working parents alike)  mine will spend approximately 2 weeks out of school PER day that you sent yours sick...  JUST to get back to 'normal'  It will take my child twice as long as yours to heal from a cold or the flu because my child is on low dose chemo...  You get to choose , you take the choice away from me.  I will end up in the ER with my child over a common cold...  You however get to sleep at night.

The rash you sent your child to school with, even though it is covered is an airborne virus...  My child will get a secondary infection from it, and end up hospitalized.  But you don't think about this because you sent your child dosed up with Tylenol, or Motrin.  You say,  "your child looks fine"  Yes.  They do look great, because I do the above listed routine every week.  But that same routine compromises their immune system and shuts it down, because Juvenile arthritis is Autoimmune...  meaning my childs immune system is over reacting and attacking every joint.  It thinks the joint is a foreign body.

So the next time you want to send your child to school with strep, because they have been on antibiotis...  WAIT!  PLEASE...  save parents like me an ER visit and and extended stay in the hospital.  Please remember our weekly routine... I would be especially grateful.

Thursday, July 7, 2011

Jeffery Eye MD

Today, we went to the eye doctor.  Our eye doctor  HAS TO BE  an MD, because of the possible chance of developing uveitis or iritis.  Both are inflammatory eye disorders related to Juvenile Arthritis.    There is also a higher risk of the Chemotherapy drugs used to treat JA causing visual disturbances.  SO...  we went to the eye doctor.

Dr. M.  He is great my kids like him.  He told us today that we only had to come in once a year.  I was a little annoyed so I asked him...  WHY only every year when the Rheumatologist ( aka Rheumy) said, at a minimum every 6 months?    He said, "OH!  Ok...  well lets do 6 months then."  He then proceeded to explain that since "JA, is so uncommon, that there is not a 'real' standard protocol unless there is inflammation"  I was floored...

 UNCOMMON????  Really?  300,000, yes, three hundred thousand kiddos have it...  I know of approximately 100 families...  1 here in idaho...  that have it and are affected by it...  it was just shocking to hear that from the doctor.

So...  the verdict, we have dodged a bullet thus far!  Jeffery's eyes are free and clear of inflammation.  YEAH!!  :o)  He is though however in need of glasses, which I will post at a later time.  He will return in 6 months to have his eyes re-checked, and we will pray that there are no adverse affects from the medication, and no arthritis inflammation.

YEAH for great check ups!

Wednesday, July 6, 2011

June synopsis

 June rolled around... June has been the worst month of the year so far....  So here are the highlights...
  •  We were offered a scholarship by the arthritis foundation for a week of conferences in Washington D.C.  
  • Started  Enbrel
  • Arthritis Walk 2011
  • MRI- done for 6 months
  • Visited with Family
  • Got to go hiking with kids
  • PLAYED with Kids
I started feeling like there was light at the end of this tunnel we are in, when we were offered the Scholar ship.  I had to turn it down.  One...  because hubby has to work...  two... the cost of airfare...  :P  I was DEVASTATED

Enbrel- first off I have to say, Enbrel is like a miracle drug!  Within 2 doses, She was moving better...  and seemed to be feeling better.   Enbrel is a FORTUNE!!!  But they have the most amazing program called Enbrel Support that will pick up your co-Pay on the meds.  They are WONDERFUL  every expirience we had dealing with the drug company has been great...  Now for the down side...  After a month of using it, my little girl got a "site reaction"
End of June pix

First week of July Photo-  So it's official, Abbie is allergic to Enbrel.  She had a MASSIVE site reaction AND she had a rash on her bum from it.

 Then MRI  was a long day, Abbie had hers and was sedated but apparently she is a restless sleeper and the MRI Lab told me  When we went back to the doctor 2 weeks later...  we just waited ...  I just waited...  on pins and needles hoping that Her MRI would come back with different results than what we saw on the MRI in January...  No such luck.  She is still inflamed. Her jaw is still deteriorating...  we thought we could stop or at least lower the dose of her MTX...  THEN she had the site reaction from the Enbrel.  

AND all during this month at the same time wondered what the doctor would say about Jeffery (J)  And his swelling.  

Jeffery Results...  X-rays and joints show active arthritis-  This was a horrible blow to end the month.   I am still reeling at the diagnosis...  after two weeks...  I hate JIA, I HATE that my kids have to deal with this and I HATE there is not more awareness.

My goal:  Bring Awareness to JIA through what ever means I can!

JIA Raw and Real

So earlier this year, we were told that my oldest- Abbigale (A) had Juvenile arthritis after almost a year of  wondering what a rash was from ...  swelling that went un explained and trying numerous anti inflammatories...  The doctor told us in January the official diagnosis, after an MRI numerous x-rays that out sweet beautiful Abbie had JIA.

JIA= Juvenile Idopathic Arthritis I was clueless.  The Arthritis Foundation page at the time seemed so unfriendly so I went to my "social network"  and started looking up JA...  Anything I could hunt down.  I remember writing on the page how lonely it felt.  It was like I was in this diagnosis process.  More than once I have stated my anger at the fact that I have a daughter who is suffering with "an old person disease....  More than once I have thought it was unfair that she has to have weekly injections...  TONS of daily meds, mouth sores, sore joints, weird rashes...  This disease is horrible, its autoimmune, and NOT CURABLE... You can go into remission but the joint damage that occurs IS PERMANENT!!! 

Children with JA are treated with Chemotherapy drugs.  As a parent you have to choose...  to treat, or not to treat.  It is not an easy decision.  The meds sometimes are just as bad as the disease...  I chose and still choose to medicate.  Long term benefit wins hands down to any other treatment. 

This is where our journey begins...  from here on out...  this is it raw and real...