Stronger

Sadie weight-bearing in the LiteGait.

Sadie is going into her third month of the Day Rehab program at RIC (Rehabilitation Institute of Chicago.) She has been attending RIC for three days a week/two hours a day. During this time, she gets physical therapy, occupational therapy and speech therapy. While it has been an intensely busy few months, we couldn't be more pleased with her progress.

Her head and trunk control have improved significantly - and she can even sit with very little assistance. During speech therapy, she is working on communication by using the switch - shown in the photo to the right. Knowing her preference for pop music a la Beyonce and Katy Perry, her sweet speech therapist put a photo of Katy Perry on her switch. Each time Sadie presses the switch, we play music and have a dance party.


Sadie's switch with Katy's photo

Unfortunately, there are a few skills which Sadie used to practice, that she has since lost - like reaching for and grabbing a toy, bringing her hands to midline, and rolling over. Even before her surgery, she stopped demonstrating these skills. We are hopeful that with the help of her therapists that she will be able to regain these abilities.

In addition to her therapies at RIC, we are still working with her home therapists through the Early Intervention (EI) program. We recently visited our neighborhood park with Sadie's home PT, where Sadie experienced sitting on a swing and sliding down a slide - with the help of Mommy and Karen, her PT.

Sadie exploring the neighborhood park

While she is making great strides with her therapy, Sadie continues to struggle with daily seizures. As I've mentioned, we have seen some improvement post-surgery- particularly with the duration and severity of her seizures. Unfortunately, she's still having about the same number of seizures per day.

So, we are again in discussions with her doctor about switching up seizure meds. Our first order of business is to try to wean her off a few of these meds (she is currently on five - Vigabatrin, Keppra, Dilantin, Clonazapam, and Neurontin) - not to mention her Ketogenic Diet. Weaning the meds that aren't working will allow us greater flexibility to try new things. The challenge is figuring out what IS and IS NOT working.



Snoozing at the Zoo

Her blood draw a few weeks ago showed that her Dilantin level was a bit low. So, upon her doctor's recommendation, we are going to try weaning that first. If we can get her off Dilantin without upsetting the apple cart, then we are going to try a new medicine called Zonisimide (Zonegran). Zonisimide has been recommended for Sadie by a few doctors. So, we're hoping that it will work well for her. But first...a five-week wean off Dilantin. I never said things happened quickly.

In the meantime, Sadie experienced her first visit to the Zoo while visiting friends in Milwaukee. Of course, she spent most of the trip napping, but she did see a few of the animals. Mr. Cheetah made an appearance right in front of the window where Sadie was looking - and I think he caught her eye!

So, as Sadie's therapy sessions at RIC begin to wind down this month, we'll have a bit more free time to enjoy the warm summer weather, and to get her outside practicing some of her new skills!

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.