Fourth Time's a Charm. Exhaling.

Well, things are getting better. We thought we'd be much more excited, but the way in which things came about put a damper on Sadie's progress.

The past few weeks have been rough. After the new year, Sadie's seizures continued to get worse, to the point that she was having very little awake time when she wasn't having a seizure. After experiencing three clusters of seizures in an hour, I spoke with her doctor about changing up her medicines (again). We had been increasing Depakote to see if we could gain more seizure control, but obviously this strategy was not working. The doctor has decided to abandon Depakote, and add Clobazam (now Sadie's fourth seizure medication).

While many doctors use Clobazam for seizure control, it is not yet FDA approved in the US, which means we have to go through a Canadian pharmacy for the medicine and pay out of pocket. While this is not ideal, we are more than willing to do it if it means that it will help Sadie. Until the medicine comes in from Canada, we are using Clonazapam as a bridge. Sadie's first few days on her new medicine were trying. The good news is, she is having fewer seizures, the bad news is she was so drowsy from the medicine that it was hard for her to even take her bottle. Our hope is that once we start weaning her off these other medicines, she will become more alert and interactive.

Sadie's therapies continue to progress quite well (that is when she is awake for them). Her reach and grasp has improved quite a bit with help from her Occupational Therapist. Last week I picked Sadie up and she promptly reached out and grabbed my hoop earring. I had to lay her down on the floor to get her to let go! I guess sometimes teaching her to reach and grab has it's consequences.

Bowel movements have become much better as well. She receives a "laxative cocktail" once a day which consists of half a Senna, a teaspoon of Miralax, and a teaspoon of milk of magnesia. We will have a poo-nami (as we like to call it) every 5-6 days, but the past few times she's gone without the help of a suppository.

Thanks to Easter Seals, we've also placed orders for Sadie's first pieces of special adaptive equipment. She is soon to be the proud owner of a Kid Kart XPress Pediatric Stroller, a Rifton Bath Chair, and a XPanda Feeding Chair. While these names may not mean much to many of you, the equipment will be a huge help for Sadie so that she can be positioned properly while being transported, bathed, and fed.

We are taking a few deep breaths now that we have better seizure control. As we venture into 2011, we hope and pray that this new medicine will continue to work for Sadie - controlling her seizures while limiting the side effects.

Trying Times. A Christmas miracle.

We've been delaying our Christmas update, as were waiting to see if there would be good news to report. Unfortunately, that is not the case. Sadie had a pretty rough holiday season. Her seizure activity began to increase a few days before Christmas. We've been slowly tapering one of her seizure meds, Topomax, in the hopes that we could get her off of one of the three medications and increase her alertness. She's been on Topomax since she was first diagnosed with Aicardi Syndrome, and we haven't been entirely convinced that it is working. Additionally Topomax is not an ideal medication in combination with the ketogenic diet as it can cause kidney stones. So, a few days before Christmas, we started to decrease her dosage. A few days later, her seizures increased 7-10 clusters of a day to 10-15 clusters a day.

We didn't want to jump to the conclusion that Topomax was working. Unfortunately in children with seizure disorders, so many other factors can play a role with seizure increases. For Sadie, it could be the change of routine with traveling, the fact that she was running a low-grade fever around Christmas, coming down with a slight cold around New Years, etc. Our New Years Eve was spent on the phone with her neurologist, and we're working on tweaking the Depakote dosage to see if we can get more seizure control while keeping Topomax at the same level for the time being. Needless to say, we're frustrated and continue to hope that someday soon we'll see an improvement in Sadie's seizures.

While experiencing trying days and nights over the past few weeks, our holidays were also interspersed with a few moments of pure Sadie happiness and joy. She had many moments where she would talk, squeal, giggle, smile...were it not for these moments, we'd be having a much harder time. Of course, our little girl was also showered with love and affection from a host of friends and family. It will take three trips to get all of her gifts and clothes back to our house! Her closet continues to expand.

In addition to the seizures, we've also been battling with some bowel movement issues with Sadie. Warning to readers who may get squirmy when hearing about poo, you may want to skip this paragraph. I feel like the topic of poop has come up way too much in our household lately. It's been about 2 months since Sadie has pooped on her own...that is, without the help of a glycerin suppository. We actually had to give her an enema last week to get her to go, after three suppositories didn't work. Talk about stress. We're not sure what to attribute it to - the ketogenic diet, which can be constipating or the fact that she is taking three sedating seizure medicines, or a combination of both. We've tried everything - miralax, milk of magnesia, prunes, senna, baby massage, reflexology. Day four after reducing her Topomax doseage, Sadie had a bm without help of a suppository. Adin called it a "Christmas Miracle."

Because of these issues, we've added yet another doctor into the mix. Sadie had her first appointment with a GI specialist at Children's Memorial. This month will be a busy one for little Sadie. She'll have another MRI to monitor her choriod plexus papilloma tumor. We also have an appointment at Easter Seals to get her fitted for a specialized stroller and potentially a special car seat.

So, we'll stay hopeful that 2011 will bring Sadie better seizure control, more moments of pure joy and happiness, and the knowledge that she is loved and adored by many people.