Thursday, January 16, 2014

Counting on Your Fingers

The other night, J-Bear and I were lying on her bed snuggling and chatting.  We were discussing something that happened in July.  I held my hand up and count the months on my fingers. 

"Let's see, that was August (I put a finger up to count 1), September (I put up a second finger to count 2) . . . . January - that was 6 months ago!"

Jenna looked at me with the most shocked look on her face. 

"Wow!  I didn't know a grown up ever uses their fingers to count!"

She cracks me up!

Sunday, January 12, 2014

The Last Shot

Tonight I gave Jenna the last shot.  We are officially out of Increlex, the medication that has done an incredible job of helping our girl grow.  Something she can't do on her own very well.  I don't know how I am supposed to feel about that.  I know a lot of thoughts go through your mind. 

Utter bewilderment and disgust that the company (Ipsen) that makes Increlex could lose control of its manufacturing process so badly that there is now no Increlex available.  A world-wide shortage they call it.  It's not called a shortage when there isn't any at all.  

What will this break, however long it be, do to my daughter's health?  Without growth factor (what Increlex replaces in her body), your muscles and bones have trouble growing and developing properly.  Will she develop heart troubles because of this 'manufacturing challenge'?

Are we going to experience our first broken bone?

Before Increlex, Jenna had lots of teeth growing issues.  What will the lack of medicine do to our already-in-place orthodontics plan?

How much height will she miss out on?  While lack of height is really just a cosmetic side effect, you still wonder.  Since we have no idea how long we will be without Increlex, will she still grow to be taller than her mama?

Will she miraculously grow on her own?  Probably not.  But if the manufacturer had not screwed up and caused this outage, we never would have had a reason to take a break.  So we wouldn't know how she might grow.  Guess we will know now.

They currently charge about $1,200.00 a bottle and we use 4-5 bottles a month.  What will it cost when it suddenly becomes available again?  Will our insurance approvals, which are in place at the moment, remain in place when and if we can get Increlex again?  Or will we have to jump through the approval process hoops again? 

On the up side, travel for the family just became a lot easier.  We won't have to carry medicine that requires refrigeration, needles, etc when we travel.  And over night adventures for Jenna without the her parents or Aunt Kristin just became possible.  Planning sleep-overs or a weekend adventure is difficult when you have to have a shot after dinner and after breakfast.

The MAGIC Foundation blog for Increlex parents had a post in mid-December that Increlex would be available in Europe the last week of December.  I have not seen anything recently, but maybe if Europe has approved the batch of medicine Ipsen made.....maybe the FDA will find it acceptable too.

Jenna has been on the shots for almost 6 years.  She doesn't remember life before Increlex.   It's just going be weird around here to not have to remember to do a shot after breakfast and dinner.

Thursday, January 2, 2014

Sid the Goldfish

A few nights ago, I was working on the computer.  Jenna came into the computer room and fired up the 'other computer' and said she was going to write a story.  She penned "The Goldfish that Hates When the Kids in the House Go to School".  In my humble opinion, it's a fabulous story!