New IS Friend

I found a new IS friend that is local to our area.  Crazy enough, I found her through one of Ethan's friends at school.  Finnley has just begun her ACTH treatment and we are ever hopeful that it will stop her seizures.

As I read the following post for the first time, I cried knowing that yet another family was affected by IS.  But to see the message of hope in her mother's post lets me know that a mother's hope has no bounds.

I look forward to following their blog and Finne's progress and I hope you will too!  

They say behind every cloud is a silver lining. I like to imagine that lining is not only silver but full of chunky glitter and sparkle. Something that catches all the light and makes you look forward to whatever is behind that cloud. There is always something good on the other side of life's challenges. It may take awhile for us to discover it sometimes - but it is always there. What we learn from it will help us to grow and become stronger. If we don't learn from it - my experience has been that it will be taught to us over and over until we that lesson in.

A bit of a cloud presented itself this month to our family. I say a 'bit of a cloud' because nothing compares to the cloud(or trial) of almost losing a child. Paul was given a lay off notice at his job and has until the end of the month. One blessing is that his boss is going to carry our insurance until the first of the year. A wonderful blessing because Finn's next treatment will be around $100,000.00 and without insurance or a dead rich relative - treatment just wouldn't happen.

Job prospects are grim right now as we all know but we are hopeful for the change. If there is one thing we have learned this year - God knows us. He knows our family and hears our prayers. I always knew that - but know I KNOW that. I hope all of you know that. We are His children and are individually known to Him. He listens and answers in the way it will serve us the best. We may have a job tomorrow or it may be six months from now. Heck - we may be living with you! But we know that we will be where the Lord wants us and needs us. Not moving is of course our first choice but that glittery lining may be in Texas, Ohio or Bora Bora! I am personally hoping it's in Hawaii but only time will tell. (Can't you just picture that glittery rainbow over Kauai??)

Prayer strengthens us when we are scared and gives us hope when we are feeling alone. We are at peace with the job situation, calm even. So maybe that proves that we have learned a lot these past two years. It usually gets really dark and scary right before everything falls into place and we know where we are headed. It's not dark at all - maybe that means we have a long time yet... Or, that our perspective has changed and our faith has increased in His plan for us. How do people get a long in this world without the gospel of Jesus Christ?

Finnie's seizures have not gone away so we are on to the next phase of treatment. It should start within the next few weeks. I will have to inject her with the medication and that makes me a little nervous to be the one hurting her everyday but it's a necessary evil. She is doing well otherwise and smiling more and more. She LOVES Angie and they are so cute together. Finn just lights up when Angie comes into the room - it's so sweet.

more...

TheSqueakyWheel.com

Wouldn't you know it? They have a site made for us squeaky wheels!! They also categorize by "Price Unfairly Changed". No complaints about Questcor yet. I'm surprised!

The Walrus

After reading Danielle's post today,  these images came to mind:

Well, as you may have guessed, the Walrus is Questcor, manufacturer of Acthar Gel (ACTH) .  Fat, bloated, and whistling all the way to the bank, charging up to $25k per vial of Acthar.  The oysters, are our children, who have no choice but to follow since there really aren't a lot of options for them.

Who is the carpenter in this story?  According to some, the carpenter did no wrong because he didn't technically eat the oysters. But he aided the walrus in the deception, and even built the shelter in which the oyster's were eaten.  

Does the carpenter remind you of anyone? Who's side is she on? Some would say she is somewhat sympathetic to our cause, some would say she's aiding Questcor to continue their evil ways. Read the post and judge for yourself.

All images are copyright of Disney and are reproduced without Disney's permission. They are for entertainment purposes only.

Show your support!

Our friends the Foltz family, just received news that their son Trevor has had a return of his infantile spasms.  Trevor had gone through a round of ACTH right around the same time as Kaylee and was seizure free for about eight months.  Danielle (Trevor's Mom) had testified in front of the JEC in Washington in July about the price gouging of ACTH by the pharmaceutical company, Questcor that manufactures the drug.

As you can imagine, they were devastated by not only by the news of their son's return of Infantile Spasms, but also torn by the fact that the drug they are recommending, once again, to treat his infantile spasms is ACTH. 

Yet again, they are having to deal with the same hurdles they went through with the first round of ACTH.  Questcor makes the process of obtaining the drug so difficult.  Not to mention the cost takes a significant chunk out of Trevor's lifetime insurance cap at 17 months old.   This is a drug that just a few years ago cost around $1500 per vial, now costs $25,000 per vial.

Today she posted an open letter in response to new the CEO of Questcor, Don Bailey.  Please take the time to visit her blog and post a comment to show your support.  Our hope is that by getting the word out, Questcor will do something to facilitate change in policy of obtaining the drug or lower the price to make it more accessible to all that suffer the devastation of infantile spasms.

Down and out...

It's been a rough week for Kaylee.  Her two bottom teeth are coming in, so she has been absolutely miserable.  Today, she went all day with out taking a nap, not even for five minutes, UGH!!!  She cried and cried and cried!  If she wasn't crying, she was on the boob juice or I was holding her.  If I even motioned to put her down, she cried and half the time, if I tried to even sit while I was holding her she cried!  She finally went down a couple of hours ago, but she has woken up twice.  

For a while there, I felt like we were on ACTH all over again, only worse because today's cries were actual "pain cries", not "I'm grumpy cries".  Isn't it funny how a mother always knows her baby's cries?  I resorted to driving the kids around in the car to try to get her to sleep.  With gas prices these days and my SUV, those teeth better come in soon!!  She did manage to sleep for about 20 minutes after we drove around for nearly 20 minutes, so the break was short lived, but it was nice while it lasted.  I think I will try that trick that was in that movie Collateral, where Jamie Foxx kept a picture of an isle of paradise on the sun visor of his cab, so he could go on vacation when ever he wanted.  Here is my paradise:

Ahh...welcome back!

Here is a dose of my reality, the dreaded playroom off the living room (heh, see my exercise machine, still in the box.  Those credit card rewards sure went to good use:)




On top of all that, the boys were not getting along.  Ethan was having a "bossy, no share day" and Javi was having another "I don't want to do my math homework" nights.  It took us an hour and 45 minutes to get through one worksheet with about 15 problems.  There was Kaylee on the boob, while I was explaining carrying the number to the ten's column to Javi for what seems like the millionth time.  We did get through it, but not in time to use his "Wii bucks" to play Wii before his dad arrived to pick him up, so that was another freak out.  When Javi is hell bent on playing Wii, it is like trying to talk down a jumper.  I think I missed my calling, with all my experience with defusing tantrums, I could be in hostage crisis management. We were doing breathing exercises, counting to ten and breathing with each number, which usually the first few numbers are more of projectile saliva (sorry to be gross), than breathing.  Countless reminding of "making good choices today, so we can play tomorrow".  We have been trying to use more natural consequences for those types of situations to control "behaviors" rather than time-outs.  Time outs are currently not recommended by ABA, but we still use them for certain situations. Anyway, just one of those days in the G-funk family. Fortunately, it's not like that every day. Speak of the little devilette, she is up and crying again!