A Rocky Start

Sadie with her EEG leeds (and bow) on.

Well, 2013 started off quite rocky for Miss Sadie. We were hoping that we would start to see a decrease in seizure activity after her shunt was placed. Unfortunately, that's not what happened.

Let me back up a bit. Sadie went in for shunt surgery on December 27th. The surgery itself went quite smooth, lasting only about 45 minutes. Post-surgery, she wasn't herself and seemed to be a bit uncomfortable. Despite pain meds, she had a restless night and was quite twitchy. A CT scan showed no issues with the shunt, so the docs ordered an EEG to check for seizure activity. About 20 minutes into the EEG, she had a big seizure - probably the scariest one I've seen to date. Sadie stopped breathing twice, turned an awful shade of blue, and oxygen levels dipped to 40% both times. A slew of nurses rushed in to administer oxygen. She seemed to come out of it fine, but it was quite scary nonetheless.

The EEG showed two focal seizures had occurred during her cluster of infantile spasms. Emergency seizure meds were administered, which calmed her brain down. The next day she was back to herself and was discharged from the hospital.

As I mentioned, our hope was that the shunt placement and subsequent fluid decompression in her brain would result in fewer seizures. Unfortunately, the seizures just continued to escalate in severity and frequency, until finally I wasn't sure if she ever fully recovered from one seizure before another started. On January 8th, we decided that we weren't comfortable managing this at home any longer and took her to the ER.

In the hospital bed with her angel doll.

Ultimately, she was in the hospital for a total of twelve days. The shunt was fully examined and was functioning properly. So...the question remained, what was causing the seizure increase? A full evaluation was run - CBC blood counts to check for infection, nasal swabs to check for signs of respiratory viruses, urine samples, chest x-ray, etc. No evidence of infection or viruses were found. In fact, other than the relentless seizures, she seemed to be perfectly healthy.

The doctor concluded that perhaps movement of some of the brain tissue was causing seizure activity, either that or she simply needed a tweak to her seizure medicines - or some combination of both.

The Epileptologist on hospital service happened to be Sadie's own doctor, who knows her quite well. She was able to quickly evaluate Sadie and recommend a course of action. She started her on a four-week course of high-dose steroids, Prednisone, to calm seizure activity. She also put her back on Dilantin - a medication that has seemed to work successfully for Sadie in the past. Additionally, we increased the dosage of a few of her daily seizure medicines, including a new medicine that she recently started, Banzel.

Over the twelve day hospital stay, she went from seizing almost non-stop, to having a few seizures an hour, to a seizure every few hours. While this may still seem like an awful place to be (and trust me, it is...) she's in a much better place now than when she entered the ER.

Smiling at Daddy.

Never short on challenges, Sadie decided to embark on a pee and poo strike while she was in the hospital. (Caution, if bodily functions gross you out, stop reading now...) Now, as many of you know, pooing daily has never been Sadie's specialty. Recently, it's taken a liquid suppository every three days to get the girl cleaned out (or have a poo-nami, as we call it). However, while hospitalized, she decided to escalate this to a whole new level. Two suppositories on day 3, two enemas on day 4...and still no poo. It finally took a third suppository on day 7 to get her to have a bowel movement (now escalated to a poo-splosion). How she kept all that inside her for seven days is beyond me.

Onto the pee situation. Sadie occasionally holds her urine. Sometimes, she'll go as long as 6 hours, then flood through everything she happens to be sitting on - chairs, beds, daddy's lap, etc. However, during this hospital stay, peeing was not something she was interested in. At one point, she held her pee for 16 hours before the nurses cathed her. The urology team then got involved in Sadie's care. They started her on a medicine called Cardura which helps with urinary retention. We were also instructed that we should cath her at home every four hours if she isn't going on her own (oh, joy). Sadie will go in for a urodynamics study in a few weeks to try to get to the bottom of the issue.

We've been so consumed with Sadie's surgeries and health issues, that everything else has taken a back-seat. We've been working with our local school system to try to determine an appropriate school for Sadie. At the age of 3 (which she will be on April 29th - yikes!), her in-home therapy services through Illinois' Early Intervention program end and she will receive therapy through the school system. We visited a local school in mid-December, which we really liked, but just didn't feel like it was the best fit for Sadie. We will visit a few more schools in February.

So, we hope that 2013 will begin to trend in a positive direction. Heaven knows we could use a break. And, more importantly, so could Sadie.

P.S. Like my Facebook page for more frequent updates on my adventures: http://www.facebook.com/friendsofsadiemccann

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!

That's How I Roll.

Well, we figured out the mystery from the last blog post. Like I mentioned, for the past few weeks Sadie had been acting restless and was just not her smiley, interactive self. Feeling exhausted and defeated, we took her to the ER at Children's upon the advice of her pediatrician. Boy am I glad we did. Her bloodwork showed that her Dilantin level was 3x higher than it should be. Dilantin toxicity is the official term. Symptoms include darting eye movements, dizziness, nausea, etc...this explains why Sadie had been out of sorts.

She was admitted to the cardiac floor where they did a STAT EKG to monitor her heart. She was in the hospital for a total of 4 days until her Dilantin level dropped back into the normal range. Dilantin is a tricky medicine to get a good level in kiddos due to the fluctuation in metabolism. But, we are hesitant to give it up since it's one of the few medicines that has had a positive effect on her seizures.

We are excited to have our Sadie back. She has been giving Mommy and Daddy wonderful toothy grins lately. While visiting her Grandma last weekend, she rolled over for the very first time! Of course she did it while Mommy was out of the room...but we were able to capture it in the video above. Now that two of her grandchildren have rolled over at her house for the very first time, Grandma is convinced that Grandpa Chris in heaven is giving the babies a little nudge.

We've also just returned from our visit to Cleveland Clinic with Sadie. We'll post more about the experience later this week. For now, we're cherishing the moment we are in with Sadie.

An Enigma Wrapped in a Riddle

"It is a riddle, wrapped in a mystery, inside an enigma; but perhaps there is a key." - Winston Churchill

We always say "if it's not one thing, it's another." Miss Sadie continues to be a mystery. The seizures are relatively low (well, for Sadie's standards), but she has not been herself lately. She is restless, irritable, not eating and sleeping well. She is also not as interactive as she once was. It's been about 2 weeks since we've seen a smile (very un-Sadie-like). This lack of recognition and interactivity just tugs at the heartstrings, especially because this was once one of her strengths. We're trying to figure it all out, but it's as if we have 12 puzzle pieces from 12 different puzzles.

We thought we solved one piece of the puzzle when the docs found another UTI last week. Yes, her fourth UTI...which we think is happening because she tends to hold her urine for hours on end, then bacteria builds up and before you know it, another infection.

However, we are now on day 4 of antibiotics and Sadie has not gone back to her happy-go-lucky self. My current theories are a Dilantin level that is way too high (when in doubt, blame the Dilantin) or a side effect of weaning the vigabatrin (maybe it was doing more than we thought).

Sadie's oxygen requirements have also been up and down. She'll do great for a few days off oxygen, then for some unknown reason, she'll need it again. We had a great appointment last week with Mary Massery, a PT who specializes in kiddos with respiratory issues. Since Sadie has developed her propensity for oxygen, Mary's name has been brought up by numerous people. She is in such high demand, that it took 6 months to even get in to see her! She was able to provide some great recommendations for Sadie. Maybe we can get her off this oxygen once and for all!

The biggest news of the past few weeks is that we've heard back from the doctors at Cleveland Clinic regarding a second opinion on Sadie's treatment and possible surgery. We will be traveling there in early October for some testing and a surgical evaluation. While she is there, Sadie will meet with Dr. Elaine Wyllie and will undergo a PET Scan and an ICTAL SPECT . The ICTAL SPECT is a test where dye is injected during the onset of a seizure, the dye pinpoints the location of the seizure activity in the brain. It can be very helpful for doctors in surgical planning.

Sadie will be hooked up to a Video EEG in the Epilepsy Monitoring Unit during her entire stay at Cleveland Clinic. This will enable the docs to capture as much brain activity as possible.

We hope and pray that this team of doctors can help us determine the right path for Sadie's treatment. Perhaps they can find the key to unwrap this mystery.

A Dose of Honesty

Recently, I received a Facebook message from a family who was considering adopting a newborn baby with Aicardi Syndrome. I don't know why the biological parents were giving up their daughter. Perhaps it was a decision they made before they realized this baby would have medical complications. Hopefully, it was not a decision made after the fact.

It struck me as amazing that there are people out there who would actually VOLUNTEER for this life. I came to the conclusion that this family must be truly special to accept a child with such severe special needs. As hard as it is to admit, if given the choice, I honestly can't say I would do the same.

It doesn't mean I don't love my precious Sadie for the special little baby she is. However, as she gets older and her disabilities are more visible, I struggle with how to respond to questions about her. After seeing Sadie in her baby wheelchair with an oxygen tank and pulse oximeter underneath, a man in the store asked "What's wrong with her?" I was taken aback. He likely was not aware of the insensitivity of his question. I stopped in mid-aisle and stood there for a few seconds, unsure of what to say. I finally uttered quietly, "Oh, she just needs a little oxygen," and scurried away before he could ask anything else. After thinking it through, a simple explanation "She has a rare neurological condition called Aicardi Syndrome," would have sufficed.

We did not ask for this life. Sometimes I feel like the deer-in-the-headlights cartoon character who is the only one in line who didn't take a step back. When people say "I don't know how you do it." I simply respond, "She is my daughter. You would do the same."

For the past few days, Sadie has been off the oxygen. She needed it, again, for a few weeks post-hospital. We have also seen some improvement with her seizure activity after a recent Dilantin increase. However, she is restless, not sleeping, and not eating very well. (Which means Mommy and Daddy are averaging about 4 hours of sleep a night.) If it's not one thing, it's another.

As for this special family and their unselfish desire to adopt this precious baby, the biological parents ultimately chose another adoptee family for the baby. I can only hope this special child went to a family who will cherish her for the beautiful angel she is.

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.

It Gets Better?

When Sadie was a newborn, she and I would take daily walks around our neighborhood. There was a local park we'd circle every day with a playground, pool, and softball fields. After Sadie's diagnosis, there were some days when making that loop was just too painful. Every child jumping off monkey bars, running by the pool, pitching a ball - was a vivid reminder of my own child's limitations.

As Sadie is our first baby, Adin and I have no previous experience in typical child development. We only have the children of friends and family with which to compare. Now that summer is into full swing, we find ourselves at friends' barbecues, pool parties, and family gatherings. As I mentioned in a previous blog post, it's quite difficult NOT to compare your own child to others.

Friends of ours, parents of another Aicardi girl, compare it to "the bends." A feeling you get when resurfacing from a deep sea dive. You are thrown into an alternate reality, then just as quickly, you're catapulted back into your own reality. Psychologists call it "chronic sorrow," a pervasive grief experienced by parents of children with special needs. There is no "It Gets Better" campaign for parents of children with special needs. You're simply handed a copy of a poem about Holland and sent on your way.

Don't get me wrong, I LOVE seeing our nieces, nephews and friends' children, and am fascinated with how quickly they grow and develop. But will there always be a twinge of pain when seeing a child do something that Sadie might never do? Does this mean our friends and family should feel guilty for having healthy children? No - absolutely not. We simply hope they cherish every healthy, typically-developing moment.

And while I hate hanging out in the land of "I feel sorry for myself", perhaps I've been thinking more about this lately because Sadie has been experiencing one of the most rocky seizure periods she's ever had. Her Dilantin levels have been all out of sorts - high one week, low the next. We also started a new medicine, Ospolot, a few weeks ago. Since then, she's been having periods of time where all she does is twitch. Sometimes it's mild - just the foot and hand twitching in a synchronized pattern, other times, her whole body twitches. This can go on for over an hour. We tend to err on the conservative side when it comes to administering Diastat (her emergency med), otherwise, we'd be giving it every day. We have given it three times in the past two weeks.

Just when we thought things were starting to calm down, the seizures spiked again for no apparent reason. We also noticed that Sadie's heart rate was extremely high and she was running a temperature. Come to find out, Sadie had a urinary tract infection (UTI). We started her on antibiotics, but the fevers continued to spike. Back to the pediatrician a few days later and they gave her an antibiotic shot - to which she had an allergic reaction. Hives all over her arms and legs.

And, while we thought we had gotten rid of the nasal cannula, she's needed to be on oxygen for the past week. According to her pulminologist, this can happen when kiddos get sick. Grrrrr...the girl simply can't catch a break.

So, I'm patiently waiting for things to get better. Patiently.

The only thing constant

Recently, I've felt like the only thing constant is change. We're aching for some regularity in our lives. Seizures are changing, medications are changing, feeding is changing.

Some changes are for the better....

Like Sadie is now taking all her nutrition by mouth. NO MORE NG TUBE! She is excited about the bottle, excited about solid foods...NOT so excited by her medicine syringes. So we've been experimenting with different methods of getting the medicines in her belly. What complicates the issue is the thickening of the liquid. As mentioned in the previous blog post, Sadie's swallow study showed that she aspirates thin liquids and all of her medicines are thin liquids (compounded liquid or crushed tablets mixed with water.)

Another positive change is Sadie's EEG. She had another video EEG study done last week to look at her brain waves. Sadie's neurologist reported that her recent EEG showed "more organized brain activity."

We are also happy that Sadie is slowly shedding her cords. She has been doing great off oxygen during the day. She even gets through her daily naps off O2. She is, however, still needing a trickle of oxygen at night. But we hope to get rid of the nasal cannula soon! I can't say when we'll be comfortable taking her off the pulse oximeter. There is a certain level of comfort in knowing her heart rate and oxygen levels at all times...but I know that in order for us to live a more "normal" life, we'll have to get rid of it soon.

Some changes are for the worse...

Sadie's seizures are still a little out of control. We've had to use diastat five times in the past six weeks. The most recent episode happened while her aunt and I were out shopping. Sadie began to have a seizure that lasted upwards of 20 minutes. We quickly headed to the car and administered the Diastat in the back of the minivan. As we headed home, her O2 levels dropped quickly and she became unresponsive. We gave her some emergency oxygen, but the O2 levels only rose into the mid-90s. So, we again found ourselves in the ER at Lutheran General. By the time we arrived, Sadie's O2 levels were back up, but she was a little woozy from the Diastat.

Luckily, this time we were released within a few hours. The docs found that Sadie's Dilantin level was high (33.6). Therapeutic range is from 10-20. If the level gets too high, it can cause increased seizures. So, we're working with the doc to reduce her levels. We also started a new medicine this week, Ospolot. Ospolot is not yet FDA approved in the US, but is used to treat seizures in Europe. Clinical trials look promising for Sadie's seizure types. One of Sadie's Aicardi friends, Josie, has used the medicine for years and it has worked well. We are hopeful that this new medicine will also work for Sadie.

We had Sadie out and about in the past few weeks. The photo above shows us at the finish line of the Epilepsy 5K Walk. Sadie also enjoyed her very first tea party for her friend Carmen's fourth birthday! The photo above shows Sadie in her fancy party dress with her Mimi. (Can you tell she likes her hands?)

The changes remind us not to get too comfortable. So, Sadie's journey continues as we change course...and change course again.

Social Sadie. Warning, sickness ahead.

The past few weeks, Sadie has been quite verbal and is often taken to having long conversations in her crib in the middle of the night. She's not cranky or upset, she just wants to chat. She'll do this for hours on end, but simply prefers to do it between the hours of 12 and 4 am. We hope this bodes well for her future verbal ability.

She has also been quite active, and has gotten close to rolling over. She keeps herself entertained talking and moving, moving and talking for hours at night in her crib. Adin and I will alternate getting up to check on her. The conversation usually goes something like this.

Cathy: Honey, can you get up and check on her?
Adin: Arrgh...
Cathy: I think she just said "daddy." She obviously wants you.
Adin: Arrgh... (rolls onto his side and climbs out of bed)

Seeing as how she likes to communicate with us, we've started to teach her sign language. We're currently teaching her two signs - "milk" and "more." We've done better with the "milk" sign, and swear that she is trying to do it on her own!

She also does a funny thing when she's dosing. Her eyes are little slits and we ask her if she's "fake sleeping." She typically responds with a big smile although her eyes are still mostly closed.

Speaking of sleep, we broke down and tried the melatonin one night. She slept for a record four hours (four hours, people!). Unfortunately, the next day was a crazy high seizure day for her. Its hard to discern whether it was the melatonin or another factor. So for the time being, we're holding off on the melatonin until we're at a more stable place with her medications.

Speaking of medications, Sadie is still on her four seizure meds (Topomax, Vigabatrin, Clonazapam, and Dilantin). The latter two are the ones that seem to be showing some positive improvement. We're still weaning Topomax, albeit very slowly. Vigabatrin will be weaned next. It will likely take us until June or July to get her off both, as long as we see no adverse effects.

Speaking of adverse effects, we've heard from many people that seizure activity often spikes right before a child gets sick. We think that is what happened with Sadie earlier this week. We spoke with the on-call neurologist after she had a really rough night and morning - seizures happening every 5 minutes. The neuro advised us to give her Diastat (emergency medication). This is a huge thing for us, as it was the first time we've administered Diastat at home. It was a little nerve-wracking, but it stopped the seizures. She, of course, was way out of it for the rest of the day. Not suprising, as Diastat is a form of Valium.

Because Diastat can suppress breathing, we hooked her up to her new pulse oximeter to monitor her O2 level. Pre-diastat, her O2 was about 95%, post-diastat she hovered around 85%. I was again on the phone with doctors, and was trying to avoid the dreaded "take her to the ER" response. (Sidebar - love love love the folks in the ER at Children's, but we feel like the past few times we've been there, Sadie's been hit by a wrecking ball as they try to get her O2 levels back up.)

So, we took her to the pediatrician. Luckily by that point, her O2 had gone back up into the 90s....whew - crisis averted. In the meantime, our lovely home nurse (who sees Sadie once every two weeks) had an oxygen compressor and tanks delivered to our home. So - we've added to our beautiful collection of medical equipment. Lo and behold, two days later, Sadie comes down with a horrible cold. The seizure increase served as our warning sign.

We forge ahead as Sadie approaches her first birthday at the end of this month. So hard to believe that our little girl will be one soon. Even through all the hospital visits, doctor appointments, therapy sessions, etc., she has been our joy and the light of our lives.

Home Sweet Home. Sleep Sweet Sleep.

Sadie has been home from the hospital for about a week. She is still struggling with kicking this recent respiratory virus. At her pediatrician's request, she is now the proud owner of a pulse oximeter and a nebulizer machine. We will use the pulse-ox at home to monitor her O2 levels should she get sick again. We've been using the nebulizer machine to give her albuterol breathing treatments three times a day. We'll continue with the treatments until the virus works its way out and her breathing returns to normal.

While in the hospital, we finally weaned Sadie off of one seizure medicine. While Clobazam looked promising at first, it seemed to be having an adverse affect, as Sadie's seizures went up with each increase in dosage. Once we backed off the dosage, her seizure activity went down. We also started Sadie on Dilantin when she was having a rough time with seizures at the hospital. I hesitate to say that her current seizure medication cocktail (dilantin, vigabatrin, topomax and clonazapam) seems to be showing some improvement. The seizures are at their lowest level. She still has episodes daily, but we've gone from 20+ seizures a day down to 3-5. Our next step is to slowly wean a few of these meds that we're not entirely sure are working, something we've been wanting to do for quite some time.

We also received some troubling news a few months ago that I didn't feel comfortable blogging about at the time. The doctor noticed some new brain abnormalities in Sadie's recent MRI. According to the doctor, there were a few areas that showed some "disbursed white matter." She said the changes looked consistent with a mitochondrial or metabolic disorder. "Instead of her Aicardi diagnosis?" I asked. "In addition to her Aicardi diagnosis," she responded. Wonderful.

This time around, I did no googling, no researching...I simply just ignored the fact that our daughter was being tested for an additional disease and kept on living. As a friend so wisely stated, "no point in going down paths that aren't yours."

I've come to the conclusion that we are the big losers when it comes to the battle of the odds. If a medication has a extremely rare side effect, Sadie is bound to get it. As it turns out, that's what the doctors think is happening with these MRI abnormalities. So far, all the mitochondrial and metabolic tests have come back within normal ranges. So that leaves the medicine. Apparently, one of Sadie's seizure medications, Vigabatrin, can cause MRI abnormalities that are similar to those shown in Sadie's MRI. The problem occurs with high doses and when children are very young (check, check). The good news is these abnormalities often revert back to normal once the medication is weaned. So, the plan is to slowly get her off vigabatrin and hope it is a transient finding and the MRI goes back to its original state.

We are overjoyed to be home after our 7-day stay at Children's Memorial. Sadie has been delightful this week. Smiling, chatting, happier than we've ever seen her. She dove headfirst into her therapies this week and did a great job. The picture above was taken during one of her monthly music therapy sessions. She liked the rain stick toy, but she liked her therapist's diamond ring even more. Smart girl.

The only trouble we've had with her is sleep. The girl simply doesn't sleep. And when I say that, I mean she is up about every hour at night. I found that one side effect of dilantin is insomnia. However, I'm not willing to give up seizure control for sleep. Insomnia combined with the coughing make for long nights for the McCann clan. We've been encouraged by her doctors to explore melatonin, which is a mild, naturally-occurring sleep aid for children. With all the medicine that she's on, we've been hesitant to add one more thing...but give us a few more nights and we may be there. For now, we thank God for espresso.