No news is bad news. The roller coaster.

I've found that its much easier to update the blog when there is good news to share. Unfortunately, the past few weeks have been quite trying for little Sadie.

Last Monday we made a second trip to the ER. When Sadie was up all Sunday night crying, we figured something was up. We drove her, again, to the ER at Children's Memorial who found that the corneal ulcer was irritated again. We've increased her eye drops and it seems to be healing up fine. Ugh...

Sadie's seizure activity had been decreasing, then last week, for no apparant reason, she started to have more clusters. We've been speaking to the neurologist and dietician, but we can't seem to pinpoint the issue. We're again increasing medications and talking about adding additional meds. At this point, Sadie is on two different seizure medications (Topomax and Vigabatrin) as well as three other medicines to deal with various side effects of the seizure meds. With medicines, special powdered formula, a gram scale - our kitchen counter looks like a pharmacy...or a meth lab.

In the midst of special diets, seizure meds, and eye drops - our little girl is developing quite the personality. She prefers Beyonce to nursery rhymes (Halo is her favorite). She also has developed a liking to Katy Perry's "California Girls." She talks up a storm and moves her mouth trying to talk when she looks at us.

All of her therapies are now in full swing. Sadie has Physical Therapy (PT), Occupational Therapy (OT), and Vision Therapy (VT), once a week. She also meets with a Developmental Therapist once a month to get an overall assessment on how she is developing. We've been working with her OT to get her left hand caught up with her right. Due to the damage on the right side of her brain, the left side tends not to function as well. Last week, she discovered that she can move her left hand to her mouth and will grasp both hands in front of her!

Sadie has a full schedule this week. Her four month appointment with her pediatrician was on Monday. She meets with all of her therapists this week. On Thursday, we'll be at Children's Memorial for an MRI of her brain as well as an appointment with her opthomologist to get an update on how the corneal ulcer is healing and what the next step is for the conformer. The MRI is to monitor her choroid plexus papilloma, a tumor in her brain that can cause a buildup of spinal fluid in her brain. She will get periodic MRIs to monitor the growth of the tumor.

The doctors continue to monitor her progress closely. Our moods are predicated on how well Sadie is doing. If she has a bad day, we have a bad day. If she has a good day, we also do. We had heard from other Aicardi families that the first year is the most difficult. It's a roller coaster of emotions. We just wish that the dips on this coaster weren't so low.

What a week...And it's only Wednesday

We finally thought that things were leveling off. Sadie's seizures had been decreasing since being on the ketogenic diet. Pre-diet she was having between 15-20 clusters of seizures a day consisting of 80-100 spasms per cluster. Post-diet she now has between 3-7 clusters a day with 20-50 spasms per cluster. We never thought we'd be happy to say that our daughter only has 5 seizures a day, but I suppose it's all relative, right?

The dietitian and neurologist are still tweaking meds and diet ratios a bit to see if we can get more seizure control. The unfortunate thing about seizure meds is that it takes time to see the full effect of the medication, and if it doesn't work, it then takes time to wean off the medicine - stopping cold turkey can be dangerous. So, needless to say, this process can be arduous.

Last week of August - we were happy to finally have a week without a doctor appointment - the first time since Sadie's birth! Unfortunately, Sadie had other plans for us. On Monday, she began to cry inconsolably. After about four hours of her crying out in pain, we took her to the pediatrician, who recommended we head down to the ER at Children's Memorial.

The ER doctors did a battery of tests - bloodwork, urine sample, ultrasound to check for kidney stones or some sort of blockage. Everything came back negative, and Sadie was still quite unhappy.

Finally, the doctors decided to take out the conformer in her eye and check for a scratch. When the opthamologist pulled out the conformer, they found the problem. She had a corneal ulcer on her eye. Basically, this can happen when your eye gets irritated or scratched and the scratch fails to heal itself. The doctors told us that it can be quite painful. Damn conformer. So, Sadie is now on medicated drops to clear up the ulcer.

Two pieces of good news since the last update. We *think* insurance will be covering Sadie's KetoCal formula. It only took 10 phone calls and three letters of medical necessity. I'm still sceptical until I actually see a paid claim.

Second, we bought a house! Yes, the same day Sadie went into the ER, we made an offer on a home in Des Plaines, IL. The home search has taken some time due to a few limiting factors. We were only looking at one-story homes due to Sadie's potential for mobility issues. Many of the ranch-style homes available were built in the 50's or 60's and haven't been updated much since then. We wanted something updated with a more open floor plan. Second, we were looking for easy access to a Metra station for Adin's commute, as well as a suburb that was close to downtown for our visits to the hospital. Luckily, we found a great updated, one-story house that fit all of these criteria. We're happy to finally be in our own home again after a year of renting.

The adventure continues...anyone up for helping us move at the end of September?