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.

The Most Annoying Part...

Some people may think that the most frustrating thing about being the parent of a special needs/medically fragile child are the child's needs themselves. The constant fear of hospitalizations, the struggle to reach milestones, the endless quest to find the right mix of medicines.

However, while these things are indeed frustrating and tiring, what's even more tedious are the day to day struggles that we parents deal with. Here are a few samples of recent conversations. (Names have been changed to protect the innocent.)

Medical Supply Company

8 AM
Mom: Hi, my daughter's feeding pump doesn't seem to be charging.
Rep: I'm so sorry about that. I can get another pump out to you today.
Mom: Great. How quickly will it arrive? She uses the pump for lunch around 1 pm.
Rep: No problem, the pump should be there in 3-4 hours, so no later than noon.
Mom: Great, thanks.

12:30 PM
Mom: Hi, I'm calling about a replacement feeding pump that should have arrived by noon.
Rep #2: Sorry, let me check on that. (long pause) Oh, it looks like the replacement pump won't arrive until at least 3 pm.
Mom: I was told that it would arrive by noon.
Rep #2: Sorry about that m'am.

Pharmacy

Pharmacy Tech: Hi, I'm calling about a refill order that you placed for your daughter.
Mom: Yes, I'll be at the hospital tomorrow and can pick up the compounded medicine.
Tech: Oh..well, you should have enough of your current medicine to get you through the next 3-4 days.
Mom: Yes, I do. But, I will be at the hospital tomorrow and can pick it up rather than go through the hassle of delivering it.
Tech: Oh, it's no problem. We'd rather not overlap since the compounded medicine is only good for 28 days...so we'll deliver it to arrive at your home on Tuesday morning.
Mom: OK. That's fine.

(Next day)
Tech: Hi m'am. We have your daughter's medicine here for you to pick up.
Mom: This is Michelle*, right? We spoke yesterday about you delivering it on Tuesday morning.
Michelle*: Oh, right...but I saw on our clipboard that it was to be ready today, so we got it ready for today.
Mom: Well, I don't know about your clipboard, but we are now home from the hospital, and I'm not coming back to pick it up. You'll have to remake it and deliver it for Tuesday.

Prescription Drug Benefit Company

Dad: Hi, I'm calling about my daughter's compounded solution of Prevacid. It seems that the Pharmacy is having trouble running it through insurance because of a specific ingredient they have to use.
Rep: Which ingredient?
Dad: Ironically enough, it's just purified water. They can't use any of the sugary syrups due to my daughter's special diet, and the other ingredient - sodium bicarbonate - is on backorder. So they just want to substitute purified water. However, your computer system is not accepting the purified water as an approved ingredient.
Rep: You are right, the computer is not telling me it's an approved ingredient.
Dad: What is your common sense telling you?
Rep: I'm sorry sir, the pharmacy will have to fax in the label for the purified water and our pharmacist here will have to approve it and an NDC code needs to be entered into the computer for it to be approved.
Dad: Can't you just put an override in the system so my daughter can get her medicine?
Rep: I'm sorry, we can't do that.
Dad: How about I run a bottled water over to the Pharmacy for them to use?
Rep: I'm sorry sir, this is our protocol and it will take at least 15 days to get this resolved.

(15 days later)
Dad recaps conversation above.
Rep: I'm sorry it seems there is no way to get this entered into our computer.
Dad: Really? We did everything you said. The pharmacy sent the information, and you're still not able to approve it?
Rep: We just can't get it in the computer as an approved ingredient.
Dad: So, you're telling me that because your company can't figure out a way to get it in your computer my daughter must go without her medicine.
Rep: I'm sorry, sir.


Add about thirty other similar conversations and there you have it...the most annoying part.

Note: A third character, Inner Monologue, has been left out due to the dialogue being laced with profanity.

One Year Ago. Hindsight.

One year ago, we were preparing for what would be the biggest procedure of Sadie's life. On February 23rd, 2012, she had part of the right side of her brain removed. Similar to a hemispherectomy, the surgery removed her right frontal and parietal lobes of her brain. The hope was that by removing these areas of seizure focus, she would experience fewer seizures and have a better quality of life. The full surgery story can be found here.

It feels a little surreal to be approaching the one-year anniversary of her surgery. In some respects, it feels like it happened so long ago. It's been a rough year for Miss Sadie - a long recovery in Cleveland followed by two subsequent brain surgeries - a cyst fenestration in August to alleviate hydrocephalus, and a shunt placement in December when the hydrocephalus returned.

We knew going into the surgery last year that there could be a range of outcomes - anywhere from significant reduction in her seizures to no reduction. While we did see some initial reduction in the months following the surgery, the seizures seem to have found a new focus area on the other side of her brain.

Is this disheartening, yes. Does it make us question our decision? Of course. But we know that these are the unfortunate decisions that we as parents of a medically fragile child have to make in order to improve her quality of life. They are decisions that we wish we never had to make. We simply have to move forward and continue to do everything we can to make sure she has the best life possible.

On that note, a bit of good news is that her pee strike seems to be coming to an end - yay! After having to cath every four hours for a few weeks, she finally decided to start peeing again on her own. I was never so happy to see a wet diaper. Champagne was popped and celebration ensued. She is now peeing on her own about 90% of the time. There have been a few times every other day or so, when we have to go in to get the pee, but it seems that her bladder has regained it's function.

Ultimately, who knows why she started retaining her urine. Although the pee strike seemed to coincide with her treatment on the seizure medication, Banzel. While urinary retention is not a listed side-effect, Banzel proved to be an awful medicine for Sadie. It intensified her acid reflux - causing her to vomit a few times and actually seemed to make her seizures worse. Once we started weaning her off the medicine, she had fewer seizures. Case made that every girl with Aicardi Syndrome is so different, as Banzel has been a great medicine for many of Sadie's Aicardi sisters.



Activating her light box during therapy

While the pee issues seem to be getting better, the constipation issues continue. We are following the treatment plan of Sadie's GI Motility Specialist who has ordered an anorecal manometry study. She will undergo this test next week to determine whether her muscles "down there" are operating properly to pass stool. Fun stuff.

Another bit of good news, is that Sadie completed her steroid treatment a few weeks ago - whew! We were hoping that getting her off steroids would help with her sleep issues. Unfortunately that does not seem to be the case. As a matter of fact, her sleep patterns have been getting progressively worse lately. She has been a bit hyperactive lately and is unable to nap during the day. At night, she is able to get to sleep, but staying asleep has been an issue. On a typical night, she is up between 3-6 times. The entire house is sleep-deprived.



How the Vagal Nerve Stimulator (VNS) works

We had been holding off on investigating the sleep issue in great depth, thinking that the sleep problems were related to her seizure activity - hoping that better seizure control would equal better sleep. After almost three years, and only a handful of nights where she's slept the entire night - we're ready to pursue an in-depth sleep analysis. More to come on that.

We have also scheduled an appointment to discuss a Vagal Nerve Stimulator (VNS) for Sadie. A VNS is like a pacemaker for the brain - helping keep the brain waves from getting too crazy. VNS has been a highly effective tool for girls with Aicardi Syndrome, and we can only hope that it is just as helpful for Sadie.

So, lots going on in Sadie-Land. She is back in the swing of things with all of her therapies. And overall is more alert and attentive - giving out lots of smiles, which makes this crazy journey a lot more enjoyable!

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

Redefining Rare

Sadie snoozing after her
g-tube surgery.

We always say that Sadie redefines "rare."  Her diagnosis of Aicardi Syndrome itself is rare, with only about 800 known instances of the Syndrome in the U.S. Additionally, many of the events that have occurred this year are rare side effects of the Syndrome and her treatment.

Starting with her brain surgery at Cleveland Clinic in February, she has experienced a series of these "rare" events. First, the 27-day hospital stay following her surgery, which began with Sadie falling into status epilepticus post-surgery - supposedly a rare side effect, occurring in only about 2-3% of cases.

Next, during her six month surgical follow up this past August, the docs found scar tissue had formed in the brain causing fluid to build up. Another rare occurrence resulting in her second brain surgery, a cyst fenestration to drain the cyst and open up the brain's natural circulation. The surgery had a 50% chance of success of alleviating the hydrocephalus (fluid buildup).

Our hopes were that we would avoid a shunt (artificial drain) placed in Sadie's brain. We thought our prayers had been answered earlier this year when the fluid seemed to be circulating, and the scans showed that the cyst had decreased in size.

Sadie in her holiday jumper

Recently, Sadie's seizures have been particularly hard to control...getting worse and worse despite medication increases and changes. Additionally, she has not been as visually attentive and her eyes have been a little shaky and downcast. Well, we may have found the cause. The recent scans show fluid is again building up in her brain, now requiring a shunt to be placed.

If there is a silver lining to this recent discovery, it's that hopefully the hydrocephalus was the cause of the seizure increase and we'll see a decrease once the shunt is placed. Optimistically, we also hope that some of Sadie's movements and behaviors that we thought to be lost, will return.

Sadie will have her shunt placed at the end of this week. Her fourth surgery of 2012 (Merry Christmas to us!). Dr. Tomita at Lurie Children's Hospital will perform the surgery - a surgery which he explained as "common"...as common as brain surgery can be, I suppose. The surgery will take about 1 hour and if things go well, she could be released the very next day.

In other news, Sadie's g-tube surgery earlier this month went quite smooth. Despite a little bit of discomfort, she performed like a rock-star and was released the very next day. We can only hope that shunt surgery will go as smoothly.

Moving into what we hope to be an uneventful 2013, we always pay close attention to the "rare" side effects of treatment and medication. As we now know "rare" means "things likely to happen to Sadie."

Facing Reality

Sadie in her owl costume on Halloween.

The morning after Sadie's diagnosis, I remember awakening and hoping that the previous day was all a dream. But I quickly had to face the reality that it wasn't. Coming to terms with reality can be a difficult task for parents of special needs children. It's been particularly difficult lately as Sadie has been struggling in so many areas.

We've already faced some pretty tough realities - that our little girl may never walk, talk, or develop like a normal child. But for a long period of time, she was still making gains. She smiled, she held a toy for a short time, she swatted at beads on her toy bar, she rolled over for the first time at 18 months! While these might sound like small, insignificant gains to others, they were HUGE for us - and for Sadie.

I always try my hardest to stay positive, but the simple truth is she no longer does many of these things. Things that we once took for granted - like bringing her hands together, holding and grasping a toy, mashing her little hands against her face, swallowing food, sucking on a bottle. We've had to come to terms that these skills might be lost.

Who knows why she has regressed in some areas. Maybe it's the burden of multiple seizures (now over 20 per day) catching up with her. Maybe it's an unfortunate side effect of the two brain surgeries. Maybe it's just the nature of her getting bigger and it being more difficult to move her body around. Whatever it is, it hurts my heart deeply.



This is what a G-Tube looks like.

Recently, we've had to accept the fact that she needs a feeding tube. Every parent has their own hot button - something that is particularly difficult to accept. For some, it's the wheelchair, or the trach, for us...it was the G-Tube. Her recent swallow study confirmed that Sadie's swallow isn't strong enough to get all her calories orally. The news didn't come as a huge surprise to us. After all, she has had the temporary NG tube in place for almost 6 months now.

The G-Tube procedure will be done at the end of this month. It pains me that she will undergo yet another surgery this year. But we know that for her health, it's what she needs. On a positive note, we'll never worry about dehydration or getting her medicines. I also learned that you can vent a g-tube, allowing gas to expel directly out of the stomach...who knew? When people ask about it, I tell them it looks like the plug for an inflatable pool toy. I suppose it's a natural way to feed, after all, we all fed that way in utero, right?

The "wobble switch" recommended for Sadie.

Despite my melancholy about the hiccup with her development, Sadie has been keeping busy with her weekly aqua therapy sessions. If she would only keep her eyes open in the warm therapy pool. (She seems to think it's a bubble bath.) 

She also underwent an augmentative communication clinic at our local Easter Seals branch. They recommended a few low tech communication devices for her as well as a wobble switch. The switch can be used to activate toys, play music, make choices, etc. It is easily activated by any movement of her hand or arm.

So, while there are a few good things happening in Sadie Land...it's been difficult lately to see the forest for the trees.

Why I Don't Care if You Stare

As many of you know, Sadie began her journey to diagnosis with a hunt to find out what was going on with her right eye. I remember leaving one of Sadie's first opthomology appointments alongside a mom pushing a child with Downs Syndrome in a wheelchair.

Right or wrong, I remember thinking to myself "wow...it could always be worse."  I also vividly remember how very put-together this mom looked - tall, attractive, with her hair in a ponytail and wearing yoga clothes. I admired that she looked like she had it all together, despite the challenges she faced. Now, how I wish that vision impairment was Sadie's only disability.

There are many conversations by parents in the special needs community about others staring at their child. Most of these discussions on blogs and message boards hover around the "rudeness" of the adult or child who is staring at their special needs kid.

However, my feelings about this differ slightly. Honestly - I really don't care if people stare. In fact, I understand why they do. Sadie looks different. It's not often you see a little 2 1/2 year old girl in a wheelchair with a tube hanging out of her nose.

Adults usually politely look at her, then look away. Children are a little different, they examine her very closely, and often ask their parents a question about her. "Why is she in that chair?" "What is that cord in her nose?" "What happened to her?"

A few parents will look at me apologetically, to which I simply smile back at them. I've found that most parents handle these questions quite well. "You see, honey, some kids are in a wheelchair because it takes them a little longer to learn to walk." or "Remember when your friend Isabelle had an NG tube when she got sick? That little girl has one too."

Parents shouldn't feel like they have to apologize for these questions. Kids are naturally curious. I expect stares and questions from children. I actually find myself quite interested in the parents' responses to these questions.

And, yes, some adults stare too, and I'm OK with that. There were the two nuns in a hospital lobby recently who couldn't take their eyes off Sadie. I imagined them to be saying a few prayers for her, making a mental note to add "the little girl in the wheelchair" to their prayer list. I admit, sometimes even I stare at another special needs child...try to guess their diagnosis, or to check out their wheelchair or equipment.

My point is... you never know why people are staring. I found at least one other person who agrees with me. But for every article like this, there are at least ten others written by special needs parents about how rude it is when people stare. And, I can't say that I blame them. After all, when you are "in the club," you become accustomed to fighting - with doctors, school systems, insurance companies...you name it. So the defenses are naturally up. It's simply not the way I like to respond.

SO, next time I'm in Target - unshowered and lacking makeup - and I see someone staring, I'll just assume the stare is one of admiration. Or, at least, that's what I'll tell myself.

The Next Fire

Sadie smiling in her chair

Life with Sadie is a series of putting out fires. We're always waiting for the next one to pop up.
Luckily, the biggest fire of this Fall was extinguished. We heard back from the docs that the CT scan showed her brain looked stable. No fluid was building up, and the cyst fenestration surgery appeared to be doing it's job - allowing the fluid to naturally circulate again. We all exhaled.

However, soon after hearing this good news, another set of fires popped up. This Fall began with the first "fire," Sadie's mild pneumonia. She spent a few days on oxygen and recovered quickly. Shortly after finishing her antibiotics for pneumonia, she was diagnosed with a Urinary Tract Infection (UTI). Sadie used to get UTIs frequently when she was younger, but since starting a maintenance course of Bactrim, she has been UTI-free. Well, this one must have been a bit too much for the antibiotic to handle. So...she started another 10-day course.

In the middle of treatment for her UTI, the third "fire" erupted. Sadie awoke last Saturday morning very lethargic and with a "barky" cough. The pediatrician diagnosed croup. Her oxygen continued to drop throughout the day, until our home oxygen tanks just couldn't keep up anymore. Down to Lurie Children's Hospital we went...

She was diagnosed with a respiratory virus (rhinovirus) which led to the croup. When adults develop rhinovirus, it manifests itself as the common cold. When Sadie develops rhinovirus, it turns into an ER visit and a two-day hospital stay. By Monday morning she was completely off oxygen and back to herself.

You see, the problem with these fires is that the embers from one fire can ignite another. Along with an xray of her lungs, the docs xrayed Sadie's belly to get a better look at the GI issues she's been experiencing (as mentioned in the last blog). While the lung xray looked fine, the docs were concerned enough about her belly scan that they called in the surgery team to look for an obstruction.

Luckily, no obstruction was found, but the belly was full of poo and gas - even though she had a series of bowel movements in previous days. She is scheduled to see a motility specialist to see why her bowels aren't moving like they should be. The docs mentioned that the full belly could have contributed to the breathing troubles as well.

Staring at the Jellyfish at the Jellies exhibit!

And there are some fires just refuse to go out no matter how much water you throw at them (case in point, the seizures). Sadie's seizures have been pretty awful lately. She's still having her typical infantile spasm clusters a few times daily, but has also started to have lip-smacking seizures. Her face gets red and she'll smack her lips and move her mouth around strangely. These seizures have been occurring about 20 times a day. On Thursday, she was back at Lurie for an overnight EEG. In the short time she was hooked up, I pressed the seizure button twenty-two times. Yes, twenty-two times.

We had been trying to wean her off her heavy medicine load for some time, but it looks like the medicine we were trying to wean (Vigabatrin), may have been doing some good.  So, now we are titrating the dose back up. Ugh...it's a horrible game of trial and error.

On a lighter note, in between these illnesses, we were able to get Sadie out to the Shedd Aquarium to look at the fishies! She just loved the jellyfish! I think it was a combination of the dark room and the lit-up aquarium. You can tell just by looking at her face how much she enjoys it. (And, no...sorry folks...we will not be getting jellyfish at home.)

So...in the meantime, we'll keep working on these fires until we find a way to extinguish them once and for all.

An Eventful Few Weeks

A lot has happened in Sadie-Land in the past month. A few weeks back, Sadie had a series of sleepy days. As you know, sleepy days are few and far between for Miss Sadie. She is lucky if she gets a 30 minute nap each day. So, on a Sunday when she had slept 5-6 hours and barely woken up when roused, we were naturally concerned.

The following day, I mentioned this sleepy behavior to her Epileptologist during our routine visit. She shot me a concerned look and immediately sent Sadie to medical imaging to check if the fluid in her brain had started to build up again. At this point, we were only 2 1/2 weeks out from her cyst fenestration surgery.

Thankfully, the results came back fine. At this early stage, the fluid didn't look like it had started to accumulate again, but we wouldn't know for sure until Sadie's 6-week post-op CT scan. However, the doctor did express some concern about the tumor on the left side of her brain.

Chillin' in her stroller during a walk.

You see, Sadie has a tumor in her left hemisphere called a choroid plexus papilloma. We've known for some time that it was close to the third ventricle in her brain and had the potential to cause hydrocephalus (fluid buildup) should it shift or grow. Prior to her recent brain surgeries, she had been undergoing MRIs every 6 months to check for tumor growth and to ensure it doesn't block the ventricle. The doctor mentioned that THIS imaging showed the tumor to be partially obstructing the third ventricle.

So, now it seems we have two things to be concerned about - first, that the scar tissues doesn't re-form and cause blockage, and second, that the tumor doesn't get in the way and cause blockage. If either of these occur, then it appears that the only way to fix the problem is by placement of a shunt. We will know for sure if either of these things is occurring after her CT scan scheduled for this Thursday.

In other news, Mommy and Daddy were able to get away for vacation for a few days. But, despite a long talk with Sadie about NOT getting sick, she decided to do the opposite - just like a toddler! 

On Saturday night, her oxygen dropped and she developed a fever. When her temperature increased a few hours later, Grandma and Aunt Megan decided to take Sadie to the ER for assessment. Turns out, she had a mild pneumonia which was likely caused by aspiration from vomiting a few days earlier.


Sadie looking lovingly at Aunt Megan (Goo).

Another issue Sadie has been dealing with lately is slow motility. Or, in layman's terms - she can't poop. In the four weeks since her brain surgery, she has not been able to have a bowel movement without assistance of a suppository. We visited the GI doc this week who gave us some tips on how to get her to go...yes, it's a glamorous life we lead.

We did receive a bit of good news last week. After a visit with a doctor at the Chicago Lighthouse for the Blind and Visually Impaired we received confirmation that Sadie has normal vision in her left eye. Yay! We had heard this from her regular opthomologist, but I've become a bit of a sceptic when it comes to doctors, so it is always a relief to get confirmation from another source!

Please keep Sadie in your thoughts and prayers as we hope for good news out of Thursday's CT scan.