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!

A Spring of New Beginnings (and Hats!)

It has been three weeks since Sadie returned home from her stay at Cleveland Clinic. We have been enjoying getting back into our regular routine. Sadie's scar from surgery is healing up well and her hair is growing back slowly. She received an assortment of spring sun hats from her Grandma. We joke that it is the "Spring of Hats," for Sadie. Being the trendsetter that she is, I'm sure that soon everyone will be wearing them.

The seizures have been holding steady. They are still less intense and frequent than before surgery, but she still has multiple episodes per day. She continues to be quite vocal and active...even a bit hyperactive at times. She particularly likes to kick around and talk around 3:30 am. Once she awakens, it's fruitless to try to get her back to sleep, so we typically pull her into bed with us and just endure the yelling and swatting until one of us gives in and gets up for the day. It's really quite comical...and tortuous. I now understand how sleep deprivation is used as a method of torture.

We have one more week until she is completely weaned off Phenobarbitol, so we are hopeful that the hyperactivity and sleep issues will settle out once her body has adjusted. Anecdotatally speaking, Phenobarbitol is notoriously difficult to wean and can cause all kinds of withdrawl symptoms in kids. We've spoken to many parents who have experienced similar difficulties during their child's wean.

Her doctor mentioned that we have the option of increasing her sleepy medicine (Neurontin) to try to get her to sleep a little longer. But, my mind was having a hard time making that leap...given that she just went through surgery in the hopes of weaning her OFF some of these meds. So, we decided to endure the sleep deprivation for a few more weeks until she is completely weaned off Phenobarbitol. Let's hope we can both keep our sanity until then...

Sadie's therapy schedule has been keeping us quite busy lately. Three days a week she is in the Day Rehab program at the Rehabilitation Institute of Chicago (RIC). She receives Physical Therapy, Occupational Therapy and Speech Therapy in Day Rehab. She also sees her regular therapists through Early Intervention (EI), but we have scaled back a bit with EI until she completes Day the program at RIC. Presently, we think she'll be in Day Rehab for at least two more months. The duration will be based on how well she is doing and how close she is to her pre-surgery baseline.

We've already seen HUGE improvements with her head and trunk control. When she left Cleveland Clinic, her muscles were quite floppy - a wet noodle. Now, she is managing her head quite well. She still needs to be supported while sitting, but that has also improved immensely. The therapists at RIC have ordered a Benik Vest for Sadie to help with her trunk control. Of course, Sadie's will be hot pink!

A bit of good news - we've heard back regarding Sadie's diagnostic testing for a mitochondrial disease, and so far, everything has come back negative. There are still a few tests outstanding, but this is great news.

In the meantime, we are beginning to plan for her two year birthday! It's hard to believe that Sadie will be turning two at the end of the month. Of course, we'll be on the hunt for the perfect hat for the occasion.

My Problems > Yours

Recently, while speaking with a group of fellow special needs moms, the topic turned to our shared exasperation at some people's lack of perspective. These moms have kids with some of the most complex medical conditions - feeding tubes, daily seizures, non-verbal, non-mobile, oxygen requirements, etc.

One mom recanted a tale of a text message she received while she and her husband were writing up their daughter's DNR (Do Not Resuscitate) orders. The message of complaint from another mom detailed how her power had just gone out and she and the kids were forced out of the house to wait it out at the local Rainforest Cafe. My fellow special needs mommy wrote back, something to the effect of..."I'm sorry your day has been so hard. We're writing up our daughter's DNR Orders. Talk more later."

We all know these martyrs. The people who respond with a long sigh when you ask how their day is going. Always reminding you of their hardships, trials and tribulations. Even those who have legitimate things to complain about, they're just no fun to be around. I vowed never to be one of them.

Now, I realize that what may sound relatively trivial to me, is in fact, a big deal in these martyrs' lives. But, by about the sixth time I'm hearing about how they're just so worried that little Johnny is still using a pacifier, my head is about to explode. I want so badly to bring them back to reality and remind them that while they are googling the long-term dangers of pacifier reliance, we are debating whether or not we are going to have someone cut into our daughter's skull.

A good friend of mine suggested that this is exactly how I should respond. "Give them a little perspective," she said. No, instead I typically excuse myself from the conversation before I say something I'll regret.

Besides the lack of sleep, our little Sadie has been doing OK for the past few weeks. We are still dealing with seizures every day - but no diastat seizures for about 3 months now (quick prayer to seizure gods). She's still doing well OFF oxygen as well. Our recent challenge has been with feeding. As I mentioned in a previous blog post, we've been to see a second feeding therapist at Children's Memorial Hospital. She's provided us with a few additional tools to use with Sadie during her feeding times - such as a chewy tube (which promotes a natural chewing pattern), a maroon spoon, and a NUK brush.

These tools have provided for a bit more cooperation during feeding, but she'll still have quite a few mealtimes where she simply does not want to open her mouth and/or swallow her food. We've also been slowly introducing Sadie to a sippy cup during her feeding times, but some days she just has an aversion to any type of feeding. Luckily, we've still been able to keep her hydrated and get her daily calories in by using her bottle. We're just keeping at it.

In January, we will visit the docs at Cleveland Clinic again to talk about a possible surgery for Sadie. We were given the option to have surgery performed on this same trip, but decided that we'd need some time to process the conversations to make an informed decision. In the meantime, we're looking forward to spending a lovely Holiday Season with friends and family. And, when I encounter one of these martyrs, I'll just need to remind myself that it's not what happens to you, but how you react to it that matters.

P.S. The photo above is of Sadie meeting Santa for the first time - you can see she's overjoyed!

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!

Perspective redefined.

Shortly after Sadie was diagnosed with Aicardi Syndrome, I remember thinking that there couldn't be anything worse than this disease...daily seizures, possibility of regression, a child who may not walk/talk, and a cognitive ability of 6 months to a year of age. This assumption was challenged last week when I attended my first moms support group.

The group is for mothers who have children with rare and life-limiting conditions. One woman's story in particular stuck with me. Her daughter was diagnosed with a rare condition called Batten's Disease. It is a degenerative illness where the body gradually breaks down. Her daughter developed normally until the age of 3 1/2, and is now quickly declining.

It was the first time that I realized how lucky we are that Sadie "only" has Aicardi Syndrome. I don't spend much time feeling sorry for myself or our situation, but not a day goes by that I don't wish Sadie's prognosis was different. However, to witness your child slowly deteriorate must be the worst kind of pain. It's all about perspective.

Sadie has been on her new seizure medication, Depakote, for a few weeks now. I'm sorry to say that we haven't seen much improvement. I feel like we're fighting a battle against the seizures. Occasionally they'll retreat, but then once they learn our tactics, they come back stronger. We're still on the medication merry-go-round and hope that we will find something that works very soon.

Despite the lack of seizure control, our little girl is growing like crazy. Sadie is now 7 1/2 months old and is already growing out of her 12 month clothes! She is in the 95th percentile for height and weight. She will start speech and feeding therapy next week. We've also enrolled her in one extra session of physical therapy so she gets some additional time working on her gross motor skills.

She also had another bout of trouble with her eye. Seems she picked up a virus last week in her eye, so we're again on daily eye drops to clear it up. I joke with her Opthomologist that we should get a frequent visitors card.

Sadie is still enjoying her solid foods. She likes her fruits the best, and I swear I heard her say "YUM" while eating her bananas.

We're looking forward to the holidays and getting to enjoy some good relaxation time with friends and family.