How Do You Measure a Year?

Sadie "dolled up" for Easter.

It's hard to believe that Sadie turns TWO this weekend. Although in some respects, it seems like she's been around longer than just two years. Heaven knows, the poor girl has endured so much in her short little life.

It has now been almost 9 weeks since Sadie's brain surgery. As the doctors predicted, Sadie is still having seizures. The seizures are milder and less frequent than before. Pre-surgery, Sadie was having 5-10 clusters/day lasting as long as 15 minutes. Post-surgery, she is at 4-6 clusters/day, with the most severe lasting 10 minutes. While this is a significant improvement, I can't help but be a bit disheartened that we didn't see a more drastic improvement. Although we went into the surgery with our expectations set, knowing that we could see NO improvement... as a parent, you can't help but HOPE for more.

Since my last blog post, sleep has improved slightly (quick prayer to sleep gods). At two years old, she still has trouble sleeping through the night, primarily due to the seizures that awaken her multiple times during the night. Mommy has now developed a habit of pulling her into bed with her if she awakens between 5-6 am. Mommy and Sadie snuggle, hold hands and dose for another hour or so. I have to admit, it's my favorite part of the day :)

Sadie using a switch during vision therapy.

Therapy is going well. Sadie's muscles are getting much stronger. Her head control and trunk control have improved immensely. We've also been working with a switch - basically a big button that teaches Sadie cause and effect. She currently uses a switch that says "eat" when we feed her. This picture shows her using a switch during a vision therapy session.

Unfortunately, until we receive that crystal ball from heaven, we'll have to continue making these difficult decisions on behalf of our daughter...not knowing the final outcome. Making each decision in the most thoughtful manner possible, all the while hoping...and hoping...that your decisions made will result in her having a better quality of life. And isn't that what EVERY parent wants for their child?

Last year's birthday blog post measured Sadie's doctor visits, therapy sessions, etc. This year, she has had the same busy schedule...but I feel like so much has changed. When we look at her, we don't see a child with disabilities. We see a child who knows her Mommy and Daddy - likes music, being outside, snuggling with her aunties...and a child who is HAPPY. And that is our biggest wish for her.

The Beat Goes On

At this week's 18 month appointment with Sadie's pediatrician, I saw that her file had been upgraded. Most of the other kids' records are held in file folders. Sadie's records are now held in a large 5-inch three-ring binder. Luckily, we've made only a few additions to that binder recently, as the past few weeks have been relatively stable for Sadie. So we thought we'd take this opportunity to update you on what is going on with certain aspects of her life and general health.

Seizures - Seems like the logical place to start, since they (unfortunately) are such a big part of her life. Sadie is still having between 5-10 clusters of seizures a day. Mostly occurring when she is waking up. The clusters can last up to 10 minutes and vary in intensity. Relatively speaking, this is a better place than where she has been previously. We've now tried nine seizure meds (yes, nine), and have come to the conclusion that it is unlikely that we'll see significant improvement with medication changes alone. So we have been exploring surgical options. More on that to come.

Oxygen - Sadie has been off oxygen for about 2 months. (Yay!) She receives chest physical therapy (CPT) as well as an inhaled steroid (Flovent) twice a day. Chest PT is administered by tapping on her lungs with a little oxygen mask. It works to keep her lungs open and air moving freely. It's such a relief not to cart around oxygen tanks everywhere we go! We've even weaned ourselves off the pulse oximeter monitor (during the day, at least, she's still on it at night).

Eyes - Sadie's last MRI showed a growing cyst behind her right eye (the smaller eye). Her opthomologist will monitor the cyst by viewing her MRIs every 6 months. He is not terribly concerned and advised us that if it does create a problem, he can easily drain it. We did discover some good news recently with the help of Sadie's vision therapist. We now suspect that she does have some light perception in her right eye. Her therapist patched the eye with good vision and waved a light stick in front of Sadie. She promptly reached out and grabbed at it - much to our astonishment. Go Sadie!

Therapy - Sadie's therapy schedule is still going well. She is making strides with her therapies, and we've continued music therapy, and even added a massage therapist once a month! (Too bad massage therapy isn't also for mommy!) Sadie has also been using her stander during physical therapy. The stander is equipment that keeps her upright in a standing position. She stands for about two hours total every day. Because she isn't bearing weight on her own, the weight-bearing position helps for better development of her bones and joints. (The photos above show some of Sadie's activities during physical therapy (standing, sans stander) and swinging in the gym at the therapy center.)

Ketogenic Diet- Sadie has now been on the Ketogenic Diet for the past 15 months. We continue to measure out her food to the precise gram. She is taking her bottle pretty well, and we'll start to transition her onto a sippy cup soon. We've hit a stumbling block trying to get her from pureed foods to foods with a bit more texture. The high fat ratio of the Ketogenic diet has provided some challenges with transitioning to foods with more texture - there are only a few things that have such a high fat content. We're using a few recipes (such as a pancake made with her KetoCal powder, or a little bit of chicken mixed with mayo and avocado). She'll hold the chicken or pancake in her mouth, but won't chew or swallow. We're seeking out some supplemental feeding therapy from Children's Memorial to see if we can overcome this hurdle.

Sleep - Sleep is still a major challenge with Sadie. Her naps during the day rarely last longer than 20 minutes, then she is awakened with a seizure. After 18 months of not sleeping through the night, we put her on a medicine called Neurontin, which has helped slightly. She is still awakening at night with seizures, but will typically go back to sleep. Unfortunately, she rarely sleeps past 6 am. The past few nights, she's been up for the day at 4:45 am and 5:30 am respectively. We are considering hiring a night nurse to monitor her seizures at night so we can get some rest.

Surgery Update - We're still waiting on some test results requested by the doctors at Cleveland Clinic. We're planning another visit to Cleveland in the next month for a consultation with the doctors. If everything goes well, we'll likely schedule Sadie's brain surgery for the beginning of next year.

We're hoping that the upcoming Holiday season continues to proceed smoothly for Sadie. Please pray for no hospital visits or unexpected illnesses. We want to keep that medical record binder as thin as possible!

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.

Sadie's first act of rebelliousness

Sadie was baptised at the end of July. We figured that if the seizure meds don't work, perhaps holy water will!

Sadie has been on her new diet for over a week. We've seen a slight decrease in seizure activity. She has good days and bad days. The docs tell us that it may be a month before we see the full effect of the diet.

We've also been battling with our insurance company, United HealthCare, because they don't want to cover Sadie's new formula, KetoCal. Even though we've provided them with letters of medical necessity from our doctors, they seem to think it is a dietary supplement rather than a prescribed medical treatment. I have a feeling this will be the first of many battles with insurance.

We traveled back to the ocularist to get her new conformer put in her right eye. The conformer is a clear plastic shell that fits over her eye. It looks great, and she seems to be tolerating it very well.

Sadie also started some of her therapies this week. Her occupational therapist worked with her on grasping objects, turning her head and taught me some exercises to work on with her. She also had an evaluation with her vision therapist this week. I told the therapist that she didn't seem to be swatting at toys above her head on her playmat. We set Sadie down to observe her, and in her first act of rebelliousness, she promptly swatted both toys hanging above her head. Let's hope she continues to prove Mommy wrong!