Saturday, June 14, 2014

‘Nother Round of Shots!

So today was the first day of Bex’s ACTH injections without any assistance from a trained medical professional…yup, on our own!  To say it was a bit stressful would be an understatement.   Actually, giving the shot wasn’t that bad.  It was trying to measure out the exact dosage that was the complicated part!  Our doctor wrote down the dosage in units of the medication and the syringes are in mLs.  So we are supposed to be giving Bex 60 units of the ACTH, but we didn’t know how that translated to mls.   We spent about an hour with the hospital trying to make sure we knew the exact amount to give her.  

The funny part is after they explained how to measure the correct amount of medicine I nearly laughed out loud.  On the box it provides the ratio of the units to mls (400 units = 5 mls or 80/1).  Welp, there is your answer!  If we are supposed to give her 60 units then it’s just 60/80 to get .75 mls.  It was my own “come on man” moment.  Not to toot my own horn, but I am a pretty smart guy.  However, when the situation is giving your 7 month old daughter a steroid injection you tend to worry a bit more and error on the side of caution.

After giving Bex the shots Lindsey and I went to work on researching more about IS/West Syndrome.  It’s time to be proactive vs. reactive and we have already submitted several requests to get in touch with resources and support networks to get more help on how to work with Bex (and manage our lives) with this challenge.  More to come as we continue to update the “About West Syndrome” page…



  1. ONLY THE FINEST STEEL CAN WALK THUR THE HOTTEST FIRE " Lindsey, these are the words the Pastor told your Uncle Bruce in December 1999 when his youngest son ,Conor, was born 2-months early. I wanted to share this with you and Chris as I see some parallels with Bexley and Conor. The words gave Uncle Bruce some additional strength perhaps it might you and Chris also., not that you two are not strong. I think it might interest you to know that 14 1/2 years later , even though Conor is special needs, he is very, very intelligent with a great sence of humor. He has been accepted into St.Johns High School his fall as the first special needs student. I share this with you because I know these are tough times, but stay tuned, with two tough partners Bexley has, things will work out. Remember, Bexley has some Smenner blood in her and it is not in our character to give up, not that you would. Now Toledo, Ohio Smenners are huggers, Grandma Smenner and I wish we could be there to give all three of you lots of hugs, since we are not we will do it on the blog, hug, hug, hug and kisses p.s. the picture of Bexley is darling, cute as cute can be , looks like you at that age Lindsey. In closing as you know Lindsey, I have been a salesman all my life, I think positive, BEXLEY WILL BE 100 %, Love Grandpa Smenner

  2. Thank you for the kind words! Chris, Bex, and I appreciate it!