Wednesday, March 9, 2011

A Lot to be Positive About

It has already been a long week, and we're only halfway through!  Will was admitted at the Clinic earlier today to complete additional testing and to begin ACTH.  We will probably be here until Saturday.  As soon as we got checked in, Will was hooked up to the EEG lines.  It was actually a bit easier this time because at least we knew what to expect, and because we have an awesome nurse helping us (thanks Gabby - you are unbelievable!).  The EEG is recording his brain waves 24 hours a day, as well as taking an audio and video recording.  We have to be on our best behavior, as we are being taped too!  I told Dan, no picking, no scratching, and please, no breaking wind.  It is actually sort of crazy to watch the EEG waves change with Will's every movement.  We have a red button that we are to press each time he has a seizure, so that the nurses can be sure to see it on the screen.  Will is basically tethered to the wall, and he keeps trying to pull the gauze off his head which has caused them to have to re-wrap him.  As you can imagine, keeping a 19 month old in front of a camera and more or less in one place is a bit of a challenge!

Will eating his dinner
Tomorrow we start the day at 4AM for Will to get his medicine, and then he will not be able to eat or drink again until 1PM when he will get sedated for his PET scan and for the lumbar puncture (spinal tap) and they are going to do some more blood testing.  He will also get an injection of Pyridoxine (Vitamin B6), which has been used as a treatment for IS, with limited success.  The chances of it doing anything to help control Will's spasms are very low, but it is also very low risk so definitely worth trying.  Will is also going to get his first injection of ACTH tomorrow, and then they will teach us how to do it ourselves as he will need to get the injections daily once we are discharged.  When I look at Will's chubby little thigh, it breaks my heart to think of jamming a needle in it, but I know it is what we have to do to try to help him.

We have met with numerous doctors, nurses, and nurse practitioners who have all reviewed Will's chart, and it is very apparent that we are in the right place, where they have a great deal of experience in treating children with IS.  We have been told repeatedly that because Will's spasms are caused by an identified area of the brain, the likelihood that we will be able to stop his seizures with surgery is very promising, which is typically not an option for children, unlike Will, that have more generalized seizures.  That, coupled with the late the age of onset of Will's seizures and his relatively normal development thus far, we are trying to remain hopeful for the future.  One nurse practitioner told us "As devastating as his diagnosis is, you have a lot to be positive about."

Jack spent the weekend visiting his cousins a few weeks ago, and when he got back, I asked him if he missed me.  He said "I tried really hard to miss you mommy, but it just didn't work."  When we left today, he told me "This time, I am going to miss you mommy."  We are going to miss him too.  Luckily, he has lots of grandparents, aunts and uncles who are going to spoil him over the next few days!

I now have the blog set up for email subscriptions, so if you want to receive emails of updates, you just need to put your address into the "Subscribe by Email" box at the right of the blog.  You will receive an email that you need to click on to confirm your subscription, and that should be it.  Bear with me, I am very new to the world of "blogging" and not quite sure how all of this works!

It sounds like we have a very long day ahead of us tomorrow, please keep little Will in your prayers.

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