Honoring Our Sweet Girl

As some of you are aware, over the past few months we've been pouring our heart and soul into creating a lasting legacy for our sweet girl. I'm proud to announce the development of The Sadie McCann Fund - a memorial fund established in Sadie's memory to benefit families of children with Aicardi Syndrome. 

The motivation behind this Fund - besides honoring Sadie's memory - was a stark realization that we have been so incredibly blessed as we navigated this diagnosis and its associated challenges - blessed to have a strong support system, blessed to have the financial means for one of us to take an extended leave from full-time work, blessed to have the ability to find the resources we needed, blessed in so many ways. This realization comes with knowing that others do not have the same means and resources available to them - which can make navigating life with a chronically ill child much more difficult.

We will be raising funds over the next few months and plan to award grants to our first group of families in the Spring of 2017. If you are so inclined to make a year-end charitable donation to the fund, we would truly appreciate your support. Please feel free to share the website with friends and family and on social media. We will also be continuing fundraising efforts at our annual spring "Celebrating Sadie" event.

Thank you to everyone who provided advice and counsel throughout this process. We are humbled to have your support and friendship as we honor Sadie's memory.

Were you the Recipient of an "Act Of Kindness?"

Over the next few weeks, teams of family and friends will be canvassing their communities with "acts of kindness" in memory of Sadie.

The majority of participants will be in the Northwest Suburbs of Chicago. As part of a Life Celebration for Sadie, teams of four will be provided with a list of "Acts of Kindness." The list will include acts such donating items to a local food pantry or paying for the person's coffee behind you in line. Each recipient will then be given a card that states the act of kindness was done in memory of Sadie (see image).

Sadie taught us so much during her short life. One of the most important lessons she taught us was to be kind to everyone, for everyone is fighting a battle we know nothing about. We can think of no better way to honor her life than to shower our community with kindness.

In addition to the large contingent of participants in the Chicago area, there will be remote teams performing acts of kindness in 20 different cities throughout the U.S. and Canada - from Los Angeles to New York.

Visit Sadie's Facebook page to see photos of some of our Acts of Kindness.

So...were YOU a recipient of an "acts of kindness?" Share your story in the comments below!

Honoring Sadie

It's been three months since our angel went to heaven. I haven't posted anything because, to be honest, this blog was developed as a way to update friends and family on Sadie's experiences. And, with her now in heaven...well, you see...

I speak for both of us when I say the past three months have been the most difficult of our lives. It has been hard to set aside the "what ifs" and the horrors of her last few hours. However, we have been blessed by the outpouring of support received from friends and family. It has been a humbling experience to know so many people care.

I heard a wise person say, "You can let you're grief tear you down, or you can take that experience and rise up." We've been trying to rise from this experience. I can tell you that it's definitely not easy, it takes dedication and work, but it is so worth it.

We were honored to have so many individuals and organizations help us during Sadie's short life. It has always been our desire to give back to these organizations in some way. It is through giving back that we are choosing to honor Sadie's memory.

Recently, a group of friends and family made dinner for the families staying at a local Ronald McDonald House. The Ronald McDonald House is a wonderful organization that provides housing for families so they can stay near their hospitalized children. As many remember, our family stayed at the Ronald McDonald House near Cleveland Clinic twice during Sadie's surgeries.  Making dinner was a great experience and we also had the ability to talk to a few of the families.

This spring, a group of us will be participating in a yard clean-up through another amazing organization, Normal Moments. This service is provided to local families who are consumed with their children's chronic medical issues. Our family benefitted from the yard clean-up for three consecutive years. I can't tell you how nice it is to look out your back door and not see overgrown bushes and weedy flower beds. The volunteers beautifying our yard gave us the most precious gift - the gift of more time with Sadie. We are happy to be able to offer this gift to another family.

Finally, we will be celebrating Sadie's life and what would have been her 4th birthday (April 29th) with a life celebration in early May. The inspiration for the life celebration came (in part) from two websites (www.thebdayproject.com and www.randomactsofkindness.org). I've always been so moved by stories of folks who perform these random acts of kindness. So, inspired by this concept - we will be conducting an Acts of Kindness scavenger hunt as part of Sadie's Celebration.

Attendees will be given a list of "acts of kindness" to perform - tasks such as helping an elderly person load groceries into their car or paying for the person's coffee behind you in line, etc. Each team will pass out a card as they perform these various acts of kindness which will explain the act of kindness is being done in her memory. We hope to blanket our community in kindness.

We hope these efforts provide some joy and comfort to others - we know it provides the same for us. It is these types of things that have provided us light during these dark days. We thank everyone for their ongoing support.

Our Angel

With a heavy heart we share that Sadie received her angel wings yesterday morning. She joined her Heavenly Father, grandfathers, great grandma, uncle and many others who passed before her. We are comforted knowing that her body is no longer suffering and she is skipping and laughing in heaven.

In lieu of flowers, memorial donations may be made to JourneyCare Foundation – Care for Children Fund, 405 Lake Zurich Rd., Barrington, IL 60010; Normal Moments, 1318 Baylor Ct, Naperville, 60565; or the Aicardi Syndrome Foundation, P.O. Box 3202, St. Charles, IL 60174.

You Don't Say...

I have this friend, let's call her Suzanne, who is a skilled verbal communicator. She always knows the right thing to say at the right time. She is concise and thoughtful with her words. Suzanne - without any pretenses of trying to come across as self-important - deftly uses large intellectual words in daily conversation. I've always admired her verbal prowess, as well as those of people like her who can clearly articulate their thoughts and feelings verbally.

Admittedly, I am not one of those people. I have always communicated more clearly in written form than verbal. (Example A: this blog.)  I often struggle to say the right thing at the right time, to clearly articulate what I'm thinking, and more than a few times have made many a verbal faux pas.

I recently read a blog post on one of my favorite special needs blogs in which the author, a fellow special needs mom, speaks about how she is often frustrated by people who refer to her as a good parent simply because her child has special needs. I've also come across dozens of other articles and blog posts written by special needs parents - many of which are titled "Ten Things NOT To Say To A Special Needs Parent." (Google that phrase and you'll see what I mean.)

Every time I read one of these articles I can't help but have mixed feelings. Don't all of these articles, while well-meaning, just alienate those people who attempt to verbally come into contact with us? People with good intentions, who just may not have the right words? Are we (as a group) doing ourselves a disservice?

Say this to us, but don't say this to us. Doesn't it just makes people afraid to say anything at all?

Now, unfortunately, I know that there exist some genuinely mean-spirited people out there. Like the woman who told a fellow Aicardi mother that she should keep her loud, overexuberant child at home. Or the horrible people who were subsequently kicked out of a restaurant for telling a family whose child had Down syndrome, "Special needs kids should be kept in special places."

However, these are not the folks to which I am referring. I like to assume that those truly awful "humans" are few and far between, and the majority of people out there are genuinely kind and goodhearted - or at least try to be.

So, for everyone who may come across this blog post. Please don't worry about the words that come out of your mouth.

As long as you are well-intentioned, I'm very forgiving.

What a Whirlwind

Sadie before her VNS surgery

What a fall it has been so far! Sadie has been so busy with school starting and all of her other activities, that we simply just haven't had time to provide an update.

Sadie's VNS surgery occurred in mid-August. The surgery itself was uncomplicated, however, post-surgery was a disaster. What was supposed to be an easy recovery turned into a two day stay in the PICU due to a high heart rate, uptick in seizure activity and vomiting. Luckily, she improved enough by day two to be sent home.

She was still under the weather the following week, and thus, missed her first day of school. Then a few rough days followed and she ended up back in the ER for excessive lethargy. In the absence of all other signs, the lethargy was determined to be due to a recent increase in one of her seizure medications.

Once Sadie evened out, her VNS was turned on. Since then, we have been increasing the "pulse" of the device every two weeks. Essentially, the device "zaps" the vagas nerve on a continuous cycle - in Sadie's case, every 5 minutes. The device also comes with a magnet that can be used to "swipe" the device when we detect the onset of a seizure. We keep the magnet velcro-ed around her ankle - which we joke looks like a house arrest bracelet. We are hesitant to make an initial assessment, but so far Sadie seems to be benefitting from the VNS therapy. (I always say that with caution, because she does have a tendency to go sideways once we declare she's doing well.)

Sadie's VNS magnet.

We also got a bit of not-so-good news this month. I had noticed that she was coughing a bit more following her oral feedings. To rule out aspiration, I asked for a repeat swallow study. Well, as suspected, she is now aspirating some of her thick purees. The feeding therapists indicated that it is no longer safe to feed her orally. While this is a real disappointment, the most important thing is to keep her safe and not risk pneumonia - so she will now get the entirety of her calories via feeding tube. The therapists did say that there is a possibility that swallow skills may improve as seizures improve - so in the meantime, we are working on oral motor activities to keep those muscles strong.

Now onto some good news. This school year has been wonderful for Sadie thus far. As I've mentioned previously, she attends a school for special-needs children in Palatine, IL five days a week. I cannot say enough good things about her school. It's such a relief to know that she is cared for so well during the school day.



Tailgating at Notre Dame.
Touchdown Jesus, no thanks,
would rather sleep!

Sadie has also been growing like crazy and is quickly growing out of her pediatric wheelchair. She was just fitted for a new chair - which I'm excited to hear comes in pink! However, along with the new wheelchair fitting comes the inevitable fact that it will be much more difficult to lift this new chair in and out of the van - making the purchase of wheelchair-accessible vehicle more pressing. We are continuing conversations with local and national vendors to determine which van is best for us.

We've also been blessed in the past few months to have found a CNA who watches Sadie overnight four nights a week. As you know, sleep has never been her strong suit. We are now at 3 1/2 years of a child who doesn't sleep through the night. Unfortunately, she still has multiple seizures during the night that awaken her. Our CNA keeps a close eye on her overnight - monitoring seizure activity, changing diapers, repositioning - and awakens us if there is any problems. She has been a godsend. Who knew what a difference sleep makes!

In addition to everything else going on, we've taken Sadie out and about quite a bit these past few months. Last month, she visited Daddy's alma mater, Notre Dame, for her first tailgating experience. Despite all the talks and preparation for the visit, she decided she'd rather nap than tailgate and slept through the entire visit! We also took her back to one of her favorite places, Shedd Aquarium, to see the sea animals -
and her favorites...the jellyfish!

We are always a bit nervous as we approach cold and flu season. So, we'll do our best over the next few months to keep miss Sadie healthy. We're also hoping that the VNS therapy will continue to show good results for her seizures.

The World Through Disabled-Colored Glasses

Sadie and I recently found ourselves with a few hours to spare between doctor appointments. One great thing about the Children's Hospital's location in downtown Chicago is that any type of food you desire can be found within a 2-block radius. I had been craving Thai, so I was excited when my smart phone informed me of a Thai place just around the corner - yippee!

However, upon our arrival to the front of the restaurant, I realized that it was not going to work. Stairs. And lots of them - stairs up to the door, stairs up to the super cute patio that would have been a great place for us to sit outside on this lovely day. Bummer. No curry for me and no outdoor patio for Sadie.

Resigned that Thai would have to wait for another day, I rounded the corner pushing Sadie's chair. OK, I guess Chipotle will have to do. A little sloped ramp into the door, and what do we run into immediately once inside? STAIRS! Ugh...handicapped access to enter the restaurant isn't helpful if you have to navigate stairs once inside.

Fine. Let's do Potbelly next door. Two nice men open the door for Sadie and I. And, what do we get once inside? Yep. Stairs...again. I'm so frustrated by this point, I am on the verge of tears. The men who opened the door ask if I need help once they notice that I immediately turn to leave. I point out that there is no ramp for us to get to the counter and order food. They seem surprised (and annoyed) by the lack of accessibility as well - although I'm sure it wasn't apparent to them until I brought it to their attention. And, admittedly, these barriers were not at the forefront of my mind either in my pre-Sadie world.  

Once you have a child with a disability, you tend to view the world differently. Curbs, stairs, steps, uneven pavement - once easily navigable, become obstacles. You develop a new disdain for the non-disabled who use disabled parking spots for their convenience. Whose improper use seems to multiply exponentially on cold, rainy days.

A handicapped-accessible
beach in Cape Cod.

I've become programmed to scope out restaurants and public places, making note of those businesses that are easily accessible. Accessibility doesn't just mean a ramp or a handicapped parking place. It means automatic doors with push button (that work!), wide aisles, clothing racks that aren't super close together, seating options in addition to booths, low tables (not bar-height), braille elevator pads, TTY phones, etc.

I remember meeting a high school teacher in Charlotte who taught a class on diversity. As one of his assignments, he would require students to be in a wheelchair all weekend. I remember thinking what a valuable lesson this would be for everyone. And, got me thinking...maybe there could be some organization that could give a seal of approval to handicapped-friendly businesses? A sticker on the door perhaps alerting the wheelchair-bound person that they will not encounter stairs once entering said establishment? Something like this perhaps? http://www.jjslist.com/pages/seal_of_approval/158.php

It's been 23 years since the Americans With Disabilities Act was passed, and there still exist businesses who - because the age of the structure in which their business resides - don't have to adhere to the tenets of ADA. (Perhaps they didn't see this - http://www.slchamber.com/page/sandbox/view/ubet )

Its just sad that some business owners continue to rest on the loopholes in ADA. It's also unfortunate, because I'm still craving my red curry.

What I Did This Summer

Sadie working on an art project
during school.

It's been a while since my last blog post - and a lot has happened in that short time. At the end of the last post, Sadie was being treated for pneumonia in the PICU at Lurie Children's Hospital. She was able to come home in mid-May after about a week in the hospital. She went back to school a few days later. Her regular school year ended in late May, and Sadie started her ESY program (or Extended School Year) in early June. ESY is essentially the same thing as school - same hours, days, etc., but it runs only through the end of June.


In early July, we took a short family vacation to a lovely beach house on the east side of Lake Michigan. The weather was great - "Sadie weather," as we call it - mid-70's with a nice breeze. Because Sadie has a hard time regulating her temperature, we try not to take her outside if it is too warm.  Sadie got to enjoy the beach for the first time and put her little toes in the sand. She also enjoyed laying on her towel in the shade - a regular bathing beauty!

The following week, we were preparing Sadie for surgery. For some time now, we had been speaking to her neurosurgeon and epilepsy doctor about placing a VNS (Vagus Nerve Stimulator). I mentioned the device and how it works in a previous blog post. Essentially, it helps to control erratic brain waves through a series of pulses to the vagus nerve. The device also comes with a magnet that can be "swiped" at the onset of a seizure - and has the potential to stop or decrease the severity of a seizure.



Staying cool at the beach.

However, in typical Sadie fashion, a curveball was thrown at the last minute - and the VNS surgery was changed to a shunt revision procedure. You see, in addition to speaking to the doctors about the VNS, they had also been monitoring her shunt function. Despite multiple shunt taps and MRIs, Sadie's team of doctors wasn't convinced that her shunt was working properly. The MRI continued to show enlarged ventricles - which is an indication of excess fluid in the brain. So, two days prior to her scheduled VNS surgery, the procedure was changed and Sadie underwent a shunt revision.

During a shunt revision, the doctor checks all the components of the shunt - the catheters into the brain and down into the belly, as well as the valve function. The doctor explained that he knew there was an issue as soon as they opened up the incision, as fluid was pooling around the shunt. This is an indication that the valve was not working the way it should. The shunt valve - which was a fixed valve - was replaced with a programmable valve. With this new valve, the rate of flow can be adjusted if necessary.

The procedure itself took about 2 hours, and Sadie did great in recovery and was out of the hospital the next day. An MRI is scheduled for this week to see if this new valve is set to the correct setting. But, we are hopeful that this procedure corrected the issue with her shunt once and for all!

We are anxious to proceed with the VNS surgery. Sadie's seizures are still quite difficult to control. She has now tried 15 different treatments - a variety of medications, ketogenic diet, surgery - and she is still having seizures daily - sometimes more than 20 per day. We are hopeful that the VNS will help control at least some of these seizures. Another Aicardi mom conducted an informal poll of parents, and of the 20 parents who responded to her survey - 50% saw a reduction in seizures by half or greater. Pretty good odds, in my opinion.

How a VNS works

While we wait to schedule her VNS surgery, Sadie will again be enrolled in RIC's (Rehabilitation Institute of Chicago) Day Rehab program where she will receive intensive therapy until school starts back up. Three days a week, two hours a day. I heard her give an exasperated sigh as the doctor and I discussed this therapy schedule. However, she progressed so well when she did this therapy post-brain surgery last Spring, I can only hope that it will help her just as much this time around.

Hope. It's something I've been thinking a lot about lately. As I mentioned, Sadie's seizures are still terrible. I'd be lying if I said there aren't many days when I feel hopeless - as if there is nothing else we can do for her. I do understand that there is the possibility that VNS therapy will not work for her. But, all we can do is HOPE.

It's this hope that keeps me from staring at the bottom of a bowl of brownie sundae daily. On the contrary, we've been doing our best to stay healthy - (trying to) eat right, getting to the gym, etc. - attempting to stay healthy for HER. But that's a topic for another blog post. For now, we are hanging by our fingernails to those strands of hope.

In With the New

Sadie on her birthday.
Before her first day of school.

It's been a whirlwind of a month for Sadie - turning three, starting school, a birthday party, new swingset, new bed. Lots of changes. I can adjust to change pretty well, but tend to get a little anxious when everything changes at the same time. That's exactly what has happened over the past month.


Sadie exhausted after her
first day of school.

As I've mentioned in previous posts, at the age of three, children with special needs stop receiving therapy through the Illinois Early Intervention program, and are eligible to start receiving therapy services in school. It doesn't really matter when the third birthday is, if it's the last week of school or the first week - they can start right away. Because we didn't want there to be a gap in Sadie's therapy, school started right on her third birthday, Monday, April 29th. 

Our school district gave us the choice between two out-of-district special needs schools for Sadie. After visiting both schools, we decided on a public school about 20 minutes from our home. We really liked the staff and the way they worked with each child's individual strengths.

Enjoying pool time at school!

Sadie has a nurse specifically assigned to care for her during the school day. The nurse takes care of monitoring seizures, oxygen, feeding, administering medicines and cathing for urine as needed. But she also plays with Sadie throughout the day - attending all of her therapies and even going in the pool with her during swimming time! Sadie is now two weeks in, and I can't say enough good things about Sadie's school, her classroom, and all the nurses, teachers, therapists and aides she works with.  Between circle time, music therapy, PT and OT, art projects, and weekly field trips - Sadie is one busy girl!

Sadie's birthday cake

We had a wonderful time celebrating Sadie's third birthday with her friends and family. She got to eat her special ketogenic cupcake, open lots of gifts, and play with all her friends and family. She has also been enjoying her new swingset. The picture below shows her on her new JennSwing, a special needs swing. Sadie's uncle Colin helped set it up in our backyard. Every day, when the weather is warm (which can be hit or miss in Chicago), we take Sadie out on her swing. She really enjoys it, and generally enjoys being outside as well.

Sadie enjoying her
new swing.

Thanks to two very generous organizations and some special people, we have ramps in and out of our house now too. One out to the backyard, and the other out to the garage - making it easier to get Sadie outside on these beautiful days! Once we are able to purchase Sadie's wheelchair-accessible van, we will no longer have to lift her in and out of the car. Saving her discomfort, and our backs!

This month, Sadie also transitioned out of her crib and into her big girl bed! Insurance approved a SleepSafe bed for Sadie. Which is, essentially, a hospital bed that doesn't look like a hospital bed. The head and foot of the bed articulate, it has full side rails, and the entire mattress raises and lowers. It will be great for Sadie long-term.


Sadie's new SleepSafe bed.

So it's taken some time to get adjusted to everything  new happening in our lives. And, in the midst of all this "new-ness," Sadie suddenly got very sick. She began breathing heavily, needing oxygen at home, and her heart rate skyrocketed. We took her to the ER on Saturday afternoon and as of today, she is still here. She is being treated for pneumonia in the PICU (Pediatric Intensive Care Unit) at Lurie Children's Hospital. I have been posting periodic updates on her Facebook page. But, things are looking up and we hope to have her out by Friday and back to school on Monday. Keep your fingers crossed and say some prayers that she continues on this positive path!

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.