Alternatives...Alternatives...

I've never considered myself to be a proponent of alternative medicine, homeopathic approaches, all-organics, "I only eat meat if it was fed green blades of grass on a spring water-fed farm," etc. However, I've come to realize that a few of these approaches may be helpful when it comes to our little Sadie.

After doing a lot of research , we've decided to trial Sadie on a blended diet. She will continue on her ketogenic diet for seizures, but we're going to try it with blended "real" foods as opposed to formula. In order for it to remain ketogenic, the recipes will still be high fat, consisting of some heavy cream and oil. But, we'll also be able to add in real meat (chicken, turkey, pork, beef) as well as a variety of fruits and vegetables.



A wonderful "must read" for
any parent of a tube-fed child.

There are a few reasons we're making this switch. As I mentioned in previous blog posts, Sadie's GI motility issues have been getting progressively worse. (Or, in layman's terms, she simply doesn't poo on her own). With the exception of one miraculous day last week, it's been eight months since she's pooped without the assistance of a suppository.  She's been to numerous GI doctors, has had a variety of laxative treatments, and recently underwent an anorectal manametry study - which came back completely normal. Our hope is that these GI issues improve with the introduction of real food. Additionally, it will be quite nice to feed her similar things to what we ourselves are eating. For example, this past weekend, we had chicken salad and Sadie "ate" a blend of chicken, celery, cream and oil.

Our new Blendtec blender for
blending Sadie's food

This decision was guided, in part, by a fabulous book called Complete Tubefeeding, which I initially heard of from a few other parents. I now consider it a 'must-read" for any parent of a tube-fed child. While undergoing this research, I learned that the best way to deliver a blended diet through a G-Tube is by using a commercial-grade blender. Commercial grade blenders are able to blend almost any food into a thin, chunk-free consistency that is able to easily be pushed through the opening for the g-tube. We are loving our new Blendtec blender - which I hear is also fabulous for making smoothies (send your recipes my way :).

In addition to the ongoing GI issues, Sadie still has a few days where she fails to urinate on her own and requires catheterization. Another Aicardi parent (and nurse) mentioned the use of Peppermint Spirits to aid urination. Apparently it can aid in the relaxation of the GI muscles...who knew? So, we have been putting a drop of this oil in her diaper and it does seem to produce results!

We are also excited to start Cranial Sacral Therapy for Sadie in the next few weeks. We have heard anecdotally from other parents that while it may seem a bit like hocus-pocus, their children come out of therapy so much more relaxed. Whatever helps Sadie relax, I'm all for! So, we're giving it a try - and I'll be sure to report results as she gets further along.

Another alternative medicine technique we have been trying is the use of frankincense oil for her seizures. Seizure control has been an ongoing problem with Sadie. She is still not in a great place after trying 13+ seizure meds. The few nights I've put a drop on her big toe before bedtime, I didn't see any change in seizures, but I figure it can't hurt!

As for the seizures, we've been trying to hold steady with any changes in her seizure meds, as we await a second MRI to check the functioning of her shunt. When she was undergoing her GI test mentioned above, the hospital took the opportunity to get a full MRI of her brain while she was under anesthesia.



A shunt-series x-ray

We received a call at home the evening after her MRI. (You know its not good news when a neurosurgeon calls you after-hours.) The MRI showed her left ventricle was enlarged. This could be an indication that her shunt is not working properly. We went back to the hospital the very next day to get a shunt series x-ray (where they xray down the shunt line). While the x-ray looked normal, the neurosurgeon noticed a lot of gas in her belly. This could have been caused by the intubation during the procedures, or she could just be an abnormally gassy child.

Either way, the neurosurgeon suspects that perhaps the shunt is not draining properly due to the increased pressure in her belly, and thus is causing the enlarged ventricle. It's crazy how all of the processes in your body are connected. So, tomorrow, Sadie goes in for another MRI to check the ventricle size. Please say some prayers that the ventricle size is decreasing. The poor girl has had enough surgeries in the past few months.  Besides, we are hoping to spend Easter with family and not in the hospital.

Needless to say, when seizures are not good, sleep is not good. We've tried the aromatherapy approach by hanging a bag of lavender on the side of her crib to help with sleep, with minimal results. So, we were excited to learn a few weeks ago that we got initial approval from the state to employ a CNA (Certified Nursing Aide) to watch Sadie overnight four nights a week. After three years of interrupted sleep, I could just cry with delight. 

Finally, we are in the home stretch of deciding between two alternatives for Sadie's schooling. We have toured both schools and think either would be a good fit and equally equipped to handle Sadie's complex needs. For children with special needs, home therapies end at age three and therapy and education continue through the school system. So, Sadie will begin school on her 3rd birthday (April 29th) - yikes! I can't even think too much about it without getting emotional.

So these are the alternatives we are trying so far for Sadie. We hope they'll work as advertised...just stop me when I pull out the crystals.

A Better Place To Be

Recently, Adin and I were looking at a few older posts on Sadie's blog. Two years ago, Sadie was hospitalized emergently to start the Ketogenic Diet after having hundreds of seizures per day. One year ago, she was hospitalized again to start ACTH after having seizures every five minutes.  This year, she's recovered from two brain surgeries. Reading those posts was a stark reminder of everything she has been through in her short life. And how, as soon as you think you are in a better place, reality can knock you back down.



Sadie and Daddy enjoying pool time.

Now that she is finished with the Day Rehab program at Rehab Institute of Chicago (RIC), she is continuing with her regular therapy schedule, which includes weekly Physical, Occupational, Speech, Vision and Developmental Therapies. I'm pleased to say that despite recent setbacks, she continues to do well in therapy. Moving at a much slower pace than typically developing kids, obviously, but making progress nonetheless. Recently, her Physical Therapist has been working with Sadie in a Lightgait over a Treadmill, getting her to walk a few steps at a time so her body begins to understand what this feels like.

Additionally, I've been looking to enroll her in aquatic therapy. Aquatic therapy can provide valuable movement for kids who are low tone and struggle with holding up their own body weight. We tried Sadie out in a pool, and she seems to really enjoy it, so we are hopeful we can get her in aquatic therapy soon!

Sadie and Olivia contemplating
the Modern Art.

In spite of a busy therapy schedule, we have found time to do a bit of traveling this summer, as well as getting out and enjoying some Chicago sights. Sadie and her friend, Olivia, recently visited the Art Institute of Chicago to take in the new Modern Art wing. Sadie didn't quite grasp Modernism, she was much more drawn to the Impressionists - Monet, Seurat, and Van Gogh in particular.

We also recently traveled to St. Louis for the 2012 Aicardi Syndrome Family Conference. The Aicardi Syndrome Foundation holds this biennial conference for families with affected daughters. It was such a great opportunity to see old friends and meet new ones - quite a different experience than our first conference, which we attended four weeks after Sadie's diagnosis. This time, we found ourselves to be much more social with the other families, rather than just deer-in-headlights

Medically speaking, Sadie is still being fed the majority of her meals via NG tube. She is allowed a little bit of pureed food each day, which she eats with varying degrees of success. Sometimes she chews well and swallows, other days, the food sits in her mouth and she spits it out. We continue to work with her speech/feeding therapists to improve her eating skills. She was originally scheduled for a repeat swallow study in August, but we've decided to hold off until we find out the results from her recent brain surgery.
As I mentioned in my last post, the cyst fenestration surgery has a 50% change of being successful at alleviating Sadie's hydrocephalus. Sadie is scheduled for a CT scan in mid-September, which will show whether or not surgery was successful. If the fluid is building up in her brain again, she will have to get a shunt (an artificial drain) placed in her brain. We are saying lots of lots of prayers that the surgery WAS successful and she will NOT need this.

Prior to her recent surgery, had switched some of her seizure meds to see if we could gain more seizure control. She is finally completely off Dilantin (yay!), and we had begun a taper of Sabril (Vigabatrin). She also started a new medicine, Zonisimide, which we are still hopeful might provide some seizure relief. However, in light of the recent surgery, everything is on "pause."

Speaking of a better place to be, Adin and I booked our first "alone" vacation since before Sadie was born. We are looking forward to getting away for a few days and know Sadie will be in good hands with Grandma and her Aunt Megan.

We look forward with a mixture of hope and trepidation as we await the results of her brain surgery. She needs your prayers now more than ever.

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!

An Unexpected Turn

All tuckered out from opening birthday gifts.

Raising a special needs child is often compared to a roller coaster ride. Along with the many ups and downs are unexpected twists and turns. We experienced an unexpected turn last week during Sadie's swallow study. This was Sadie's third exam to look at her swallow. Her first swallow study showed she aspirated thin liquids, and we've since been thickening her bottles using a gel called "Simply Thick."

During the swallow study, a substance called barium is added to her food. The barium lights up on the x-ray showing where the liquid is going during the swallow. (You can see a pretty cool video here.) Her therapist and doctor at the Rehabilitation Institute of Chicago ordered the swallow study to check her post-surgery swallow. We went in assuming a routine appointment - after all, she had a post-surgery bedside swallow examination in Cleveland which she passed with flying colors. She had not been getting sick and her lungs have always sounded clear (two red flags for aspirating).

However, the results showed otherwise. While drinking her bottle, even thickened, a small amount of the liquid was making it's way into her lungs during each swallow. Even at it's thickest consistency (honey thick), it was still going into her lungs.

Sadie eating her breakfast via NG tube.

Sadie was sent directly to Children's Memorial Hospital for an immediate admission and NG tube placement. (Standard protocol when a child fails a swallow study.) We were told by the pulminology team at Children's that if we had not found the aspiration, Sadie could have come down with a horrible life-threatening pneumonia. And, if she were to continue to drink, the aspiration could cause lung disease. The pulminology docs said that there are over 70 different mechanisms that must occur in the throat to ensure a safe swallow. Seems amazing that all of us aren't aspirating all the time, right?

This is what a G-Tube looks like.

So...you may ask, where does that leave Sadie? Well, there are few options for a child who aspirates. The most common being a G-Tube. Many girls with Aicardi Syndrome also have G-Tubes. In fact, one of Sadie's good Chicago Aicardi friends, Olivia, just got her G-Tube a few months ago.

In order to mentally prepare for this possible next step, we met with the surgeon this week who would perform the G-Tube operation. He provided us with pros and cons of G-Tubes. The pros being ease of medication administration, hydration, and most importantly - no aspiration. We have spoken to Sadie's team at Children's Memorial who have advised us to take our time with making this decision. They have offered to repeat a swallow study in 3-6 months to see if her swallow has improved. By that point, we can do more research and become more comfortable should the G-tube be the path she must go down.

Luckily, she is still able to eat pureed food (baby foods), so we've been feeding her her favorite keto-friendly food - mashed banana with butter. While we are disheartened and saddened by another "normal" being taken away from Sadie for the time being, we are grateful that it didn't develop into something even worse.

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!

In The Weeds

As a former waitress, when things were starting to spiral out of control, you'd say that you were "in the weeds." If you were lucky, coworkers would help out until you were in a more comfortable place.

We're on week three of Sadie's ACTH treatment. While the steroid seems to have gotten Sadie out of her every-five-minute-seizure-pattern, she is still "in the weeds." We've gone from seizures every five minutes to seizures every fifteen minutes - still not a great place to be. You know things are bad when medical professionals (epileptologists, even) look at you in amazement when you tell them the number and duration of seizures she has, as well as the numerous medicines and treatments she is on.

We've started making some slow changes with her medicines. We're finally starting to wean her off of Vigabatrin - a medicine she's been on now for a year. The jury has always been out on Vigabatrin. We initially thought it was making things worse, then after a few weeks, she got better...but she had also started the ketogenic diet around the same time. Of the four seizure medicines she is currently on, Vigabatrin has the most severe side effect - potential vision loss - and with Sadie's existing vision impairment in her right eye, it's the logical choice to start weaning first.

On a parallel track, we've also started testing to determine whether Sadie is a candidate for brain surgery. After talking with few other parents of children who have undergone hemispherectomies, we've started an initial conversation with Cleveland Clinic, who has a great epilepsy center and neurosurgeon who specializes in the surgical procedure.

In Sadie's situation, we have epileptologists, pediatricians, dietitians - all helping to get Sadie out of "the weeds." But no matter how hard we tug, we just can't seem to get her to where she needs to be. We'll simply keep trying.

Cause and Effect

Why do certain things happen? Growing up, I would always ask my parents, "Why?" Their canned response, "Because I said so."

Why was Sadie given these challenges in life? As a parent, it's hard not to blame yourself. Maybe it is god's way of punishing me for being mean to that girl in high school? Maybe it was that one night before I knew I was pregnant where I had too many martinis? Maybe it's because I didn't spend enough time volunteering, going to church, caring for those less fortunate...you see how it can drive you crazy??

For two analytical individuals like Adin and me, these mysteries that happen with Sadie are even more frustrating. After a few relatively calm weeks (only 3-5 seizures a day), the random twitches have again returned. Our initial guess (unsteady Dilantin levels) has proved to be untrue, so we're now exploring a secondary hypothesis - that her new medicine (Ospolot) is the culprit, as the twitches have seemed to occur a few days following an Ospolot increase. So...we're now taking her off the Ospolot and trying what will now be our eighth seizure medicine, Keppra.

Keppra has been used successfully on many girls with Aicardi Syndrome. Many docs like the drug due to it's limited side effects. When the twitching was occurring every 5 minutes this weekend, we ended up in the ER where Sadie received a loading dose of Keppra. Loading doses of meds are often given in a hospital setting to immediately reach a therapeutic level. While we thought we saw some initial improvement in the ER, the next morning the twitching was back...again every five minutes. It's just maddening to have her on five seizure medicines and the ketogenic diet and to still be experiencing such high seizure activity.

The emotional side of me wants to just take her off of everything and start from scratch. The logical side of me realizes the danger in this and will just keep plugging away hoping that these rough patches even out once we figure out the right medicine cocktail.

In other news, Sadie had her first visit with an otolaryngologist last week, or more commonly known as an ENT (ear, nose and throat) doctor. He is recommending a FEES (Fiberoptic Endoscopic Evaluation of Swallowing) study on Sadie. It is similar to a swallow study in that the study evaluates the effectiveness of the swallow, but will also tell us more about how Sadie is handing secretions and if there are any other issues with her swallowing.

While we can't help ourselves to try to figure out what the causes are...we keep plugging along, hoping that this rough patch will come to an end soon.

P.S. I just HAD to include the photo above in her blog. Sadie and Baxter, sibling love.

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.

For Better or Worse. Here Goes...

We're bracing for impact. What that impact is, we're not sure. After a week of various opinions, we've made a decision.

Let me start at the beginning...

Sadie saw a new neurologist last week to get a second opinion. In the meantime, her current neurologist presented Sadie's case to the team of doctors at Children's Memorial. Apparentely, the doctors do this periodically when they have difficult cases. The result was two differing opinions.

Doctor A recommended weaning a few medicines to try to determine what is and isn't working. "A" also suggested she try a few new medications. Doctor B recommended we start aggressively treating her with prenisolone, an oral steriod. Steriod treatment has always made us a little nervous, given the many side effects, including a weakened immune system. We've opted out of the most commonly used steriod for infantile spasms, ACTH, due to the high mortality rate (1 out of every 12 children), and the fact that many Aicardi parents don't think it works very well for girls with the Syndrome.

After giving ourseleves a few days and seeking out numerous opinions, we decided to forgo the steriod treatment for the time being. For better or worse, we're trying another seizure medication, Depakote.

Sadie was also at the hospital most of the day last Thursday for her Electroretinagram (ERG). We received good news and bad news. The good news is that the ERG showed Sadie to have decent vision in her left eye. The bad news was as we suspected, she most likely has no vision in her right eye....sigh. Although we had mentally prepared for this, it doesn't make the news any easier.

We've started working with two great non-profit organizations. The first is an organization called Hope's Friends. They send a home nurse to see Sadie as needed, a service that will be even more important as cold weather approaches. The nurse came out this week to check out Sadie's bowel movement issues. The ketogenic diet really stops her up :( They'll also be starting Music Therapy with Sadie this week. We'll see if we can get any Katy Perry or Beyonce in the mix, you know how Sadie loves them :) Additionally, an aromatherapist is developing aromas for Sadie to see if it will help with her bowel movements and seizure control. It's worth a try, right?

Sadie also visited the local Easter Seals chapter for a feeding evaluation. She will go back in a few weeks for a seating/positioning clinic to help determine what, if any, special equipment is needed as she gets older. Specifically, we're looking at special feeding chairs, strollers, and car seats. Both organizations have been wonderfully helpful for Sadie.

So, we brace for impact as Sadie starts what is now her third seizure medicine this week. We hope and pray that the third time's a charm.

Milestones, Shmilestones. Her own yardstick.

Comparisons are inevititable. I think mothers are particularly guilty of comparing their child to others. I remember walking into my first session of a new moms group and being envious of the mother whose 11-week-old could already hold his head up.

Comparisons are everywhere. I get increasingly frustrated with the amount of literature devoted to "milestones." Every time I pick up a piece of paper that talks about which milestones your child should have mastered by a particular age, I throw it in the trash. I've shelved "What to Expect the First Year" and unsubscribed from BabyCenter e-mails that tell me what my child should be doing.

Am I ignoring the milestones? No, they are everywhere I look - the baby in the mall playing with a toy, the friend's child who holds a gaze longer than Sadie, the child in the grocery cart who can sit in the front and not have to be toted in a car seat. Do we want her to reach these milestones? More than anything. But we're not willing to obsess about it so much that we forget to enjoy our precious 6 month old baby.

Yes, Sadie turned 6 months old this week. Her getting older is not without challenges. She still struggles with many of the gross motor skills that most children have mastered by this age. I recently asked one of Sadie's therapists how she compares developmentally to other babies her age. She wisely responded that we use "a different yardstick" for Sadie.

This six-month old has recently sprouted her two bottom teeth! She has also found her thumb and has taken to sucking on it. Sadie started solid foods on Halloween night. For the ketogenic diet, this means rice cereal and baby food mixed with butter, all measured out the the precise gram. It took her a few spoonfuls to understand what was going on, but after she realized it was food, she quickly got the hang of it. Leave it to our little girl to take to solid foods like a champ! When I fed her the next day I swear she got excited when she saw the spoon.

We received the results from her most recent EEG. While the neurologist was happy that the brain activity seemed more organized than her last EEG, she was unsure if Sadie would ever have a "normal" EEG given the damage in her brain. The good news is, the only seizures that are showing up on the EEG are those that we can see. The bad news is, she is still having quite a few seizures a day. She is hovering between 7-10 clusters of spasms a day. We're still increasing medications (topomax and vigabatrin) and tweaking the diet to see if we can gain more seizure control.

We'll also be seeing another neurologist next week to get a second opinion on Sadie's treatment. Her current neurologist has been great, but because her seizures are so hard to control, we decided it would be beneficial to get a second opinion. The new neurologist treats another Aicardi child here in Chicago, whose parents we've gotten to know quite well.

While Sadie may not yet be able to hold her head up or sit without support, she is a delightful little girl who loves social interaction, smiles at everyone, and will do her best to join in the conversation - and for now, that's good enough for us.

Sadie the fashionista. Status quo.

A few times a week, Sadie and I put her clothes away in her closet. As I hang each outfit, I hold it up to ask her if she likes it. This is also my way of checking if the clothes still fit, as she tends to grow out of them very quickly. Although she can't verbalize it, I think she really enjoys this time, and will often smile as I show her certain outfits. Thanks to her fashion-forward aunts, as well as friends hand-me-downs, she has more clothes in her closet than Mommy!

In other news, Sadie's seizures are still on the high end. She is now having between 7-9 clusters of seizures a day, mostly occurring right after she awakens from sleep or a nap. We continue to work with her neurologist to tweak medications and diet ratios to see if we can gain more control of the seizures, but so far nothing seems to be working. I can't tell you how frustrating it is to see no improvement.

We also saw a new ocularist this week, who fitted Sadie for her third (yes, third) conformer. He taught us how to put the conformer in her eye, as well as take it out. It is challenging to put a prosthetic in our baby's eye every day, but we're getting the hang of it!

We close on the new house this week, and are very excited to finally be settled. We'll also get to unpack all of our boxes that have been packed up since the move out of our home in Charlotte. It will be like Christmas...almost.

Thanks to everyone for the prayers and good thoughts. Keep them coming!

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?

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!

From bad to not so bad. Yay for ketones!

The last week of July things went from bad to worse. Sadie had been on vigabatrin, her new seizure medicine, for about two weeks. The medicine seemed to have an adverse effect, as her seizures started INCREASING. Each time the doctor would increase her meds, her seizures would go up. The increased medication was also making her drowsy. By the last weekend in July, her only awake time was when she was having spasms.

We were on the phone with the neurologists every day talking about scary remedies, from administering diastat (an emergency medication given rectally to stop seizures), to admitting her to the hospital to begin ACTH, an injectable steriod treatment. We had already decided that ACTH had too many scary side effects for us to try, one of which is possible death. So we were stuck with a baby who is constantly having seizures.

On top of the seizures, Sadie had a conformer put in her eye last week, and the conformer ended up scratching her cornea. Back to the ocularist to get it taken out, and then to the opthomologist to get medicated drops. Ugh. If only I could get paid for coordinating doctors appointments.

Needless to say all of this was super stressful. We were at the end of our rope when the hospital called to tell us they were able to get her in to start the ketogenic diet right away. Sadie was admitted on Monday. She received her first bottle of KetoCal (a special ketogenic formula) on Monday night. It smells like a vanilla milkshake. Sadie loved it...but of course she's never turned away food. We anxiously awaited the arrival of ketones in her urine, which indicates that the diet is working. I don't think I've ever looked forward to diaper changes as much.

Monday and Tuesday went by without ketones. Sadie's seizure activity held steady. She had a few scary episodes at the hospital, one of which lasted 50 minutes. FINALLY late Tuesday night she had a trace of ketones in her urine. Yay! The doctors came in saying they wanted to pop the champagne.

Speaking of the doctors, I can't say enough good things about the staff at Childrens Memorial Hospital, many of whom are aware of sadie's condition and pulled strings to get her in earlier to start the diet. Sadie was released from the hospital on Thursday night and seems to be getting better, slowly...

We are cautiously optimistic.

Sadie update - July 2010

Sadie will be three months old this week! How time flies. She is a very happy baby with a very feisty personality. I call her my little drama queen. She does not like to be woken up (well...do any of us, really?) She is quite dramatic about it and has a 5 minute ritual of stretching upon waking up. She also smiles quite a bit, she loves to be talked to, and will try to join in the conversation.

Sadie started her initial seizure medication, Topomax, on the day of her diagnosis. We've recently added a new seizure med, Vigabatrin. Sadie is still having 10-15 clusters of seizures a day. The vigabatrin doesn't seem to be helping. We are planning to put her on the ketogenic diet in late August (the first date the hospital has open). The ketogenic diet is a specific diet regimen designed to reduce the occurence of seizures. http://www.childrensmemorial.org/depts/neurocenter/epilepsy/ketogenic.aspx

Sadie will see an ocularist this week to discuss options for her right eye, which is smaller than the left (micropthalmia). We have heard that many children with micropthalmia are fitted for conformers which will allow her eye sockets to grow at the same rate . We're still not sure if she will have vision in this eye and have begun patching the "good" eye for 30-60 minutes a day to stimulate any vision that she may have in the "bad" eye.

Sadie will also be in the hospital this week for an overnight EEG. The EEG will give us more information about her brain activity in relation to her seizures.