My Own Dose of Perspective

So, I was feeling a little guilty after my last blog post. You see, I didn't want anyone to think I was making reference to them when I was speaking about perspective. It was more of a general statement, not referencing any one person in particular. But that's the problem with generalities, folks tend to think you are talking about them. That was truly not my intention, so if I offended anyone, I apologize. Shortly after I posted that last blog entry, I was given my own dose of perspective.

We attended a holiday party put on by a great organization called Hope's Friends. (The photo above is from that party, with Sadie looking inquisitively at Santa.) The organization, under the Hospice umbrella, provides palliative care to children with life-limiting conditions. Attending the party were children with a variety of different diagnoses and conditions. It was a great reminder that even we need a little perspective from time to time.

Sadie has had a few busy weeks as we wrap up 2011. In addition to the holiday party mentioned above, we've spent time with our dear family and have gotten together with a few close friends for the holidays - all of whom showered Sadie with love and affection. She had her monthly visit to Lekotek (the special needs toy-lending program) where we picked out some great toys for her to play with over the holidays. We also heard back from our local park district, who agreed to install a special needs swing for Sadie at our neighborhood park. We're looking forward to warmer weather so she can enjoy her first time playing on a playground!

As we wrap up another year, I am reminded of all the wonderful people and organizations who have helped our family. From the friends and family who sat bedside with us during Sadie's five hospital stays this year to the volunteers who helped with caring for our lawn while Sadie was in the hospital. We are eternally grateful for everyone's support.

Here's to a happy and HEALTHY 2012.

For Better or Worse. Here Goes...

We're bracing for impact. What that impact is, we're not sure. After a week of various opinions, we've made a decision.

Let me start at the beginning...

Sadie saw a new neurologist last week to get a second opinion. In the meantime, her current neurologist presented Sadie's case to the team of doctors at Children's Memorial. Apparentely, the doctors do this periodically when they have difficult cases. The result was two differing opinions.

Doctor A recommended weaning a few medicines to try to determine what is and isn't working. "A" also suggested she try a few new medications. Doctor B recommended we start aggressively treating her with prenisolone, an oral steriod. Steriod treatment has always made us a little nervous, given the many side effects, including a weakened immune system. We've opted out of the most commonly used steriod for infantile spasms, ACTH, due to the high mortality rate (1 out of every 12 children), and the fact that many Aicardi parents don't think it works very well for girls with the Syndrome.

After giving ourseleves a few days and seeking out numerous opinions, we decided to forgo the steriod treatment for the time being. For better or worse, we're trying another seizure medication, Depakote.

Sadie was also at the hospital most of the day last Thursday for her Electroretinagram (ERG). We received good news and bad news. The good news is that the ERG showed Sadie to have decent vision in her left eye. The bad news was as we suspected, she most likely has no vision in her right eye....sigh. Although we had mentally prepared for this, it doesn't make the news any easier.

We've started working with two great non-profit organizations. The first is an organization called Hope's Friends. They send a home nurse to see Sadie as needed, a service that will be even more important as cold weather approaches. The nurse came out this week to check out Sadie's bowel movement issues. The ketogenic diet really stops her up :( They'll also be starting Music Therapy with Sadie this week. We'll see if we can get any Katy Perry or Beyonce in the mix, you know how Sadie loves them :) Additionally, an aromatherapist is developing aromas for Sadie to see if it will help with her bowel movements and seizure control. It's worth a try, right?

Sadie also visited the local Easter Seals chapter for a feeding evaluation. She will go back in a few weeks for a seating/positioning clinic to help determine what, if any, special equipment is needed as she gets older. Specifically, we're looking at special feeding chairs, strollers, and car seats. Both organizations have been wonderfully helpful for Sadie.

So, we brace for impact as Sadie starts what is now her third seizure medicine this week. We hope and pray that the third time's a charm.