Hollis's Big Adventure

One year

2009-07-11T21:11:00.006-04:00

It was a year ago today that Hollis had her hemispherectomy. That was easily the most frightening day of my life, and the following week wasn't so terrific either. I just remember everything was about waiting: waiting for the surgery to be over, waiting for her to wake up, waiting for her fever to go down, waiting for her to stop feeling nauseous, waiting for her to eat, waiting for her to smile and laugh. And, amazingly, all of those happened within one week of having the two halves of her brain disconnected.

We want to thank all our family and friends for supporting us throughout this very challenging year, and for always being our rocks. Thanks to her doctors, teachers, therapists and caregivers for all that you do and have done for Hollis.

On a lighter note, I can't think of a more appropriate conclusion to this blog than to show Hollis and her best: as the mischievous little imp she always has been. She emptied an entire bottle of powder in her room while she was playing this morning, and Mom and Dad were only four feet away, in the other bedroom, thinking how nice it was she was playing so well by herself. She is always teaching us lessons about how creative she can be while she has some "alone time".

Thank you all for reading, and I hope that it has been both informative and a bit entertaining as well.

Almost a year!

2009-07-04T21:44:00.006-04:00

What a remarkable year it has been. One week from today, Hollis will be 1 year post-hemispherectomy. She has only had 8 seizures (that we have seen) since that time! That was as many as she would have in a day, with meds, a vagus nerve stimulator and other therapies. We have been so fortunate that this surgery has been such a success.

After July 11, 2009, I have decided that I will not update the blog any longer, because it was meant to follow my little girl's journey through the surgery and recovery process. At a full year, the neurologists say that the healing process is complete, and so my journey of documenting all of the anticipation, fear, relief and joy will be complete as well. Thank you for reading it, and I hope that it helps others who are going through similar challenging experiences.

A swing!

2009-07-03T21:00:00.005-04:00

Hollis received a swing from the human services organization Fidelity House, to help with some of her sensory needs and to be used as a calming tool. She loves it! Fidelity House is an organization that helps developmentally disabled people better participate in their families and the community by providing consultation, education, and other support. This swing is just one of the many items they can provide: we've been to a behavioral crisis intervention training class, they have had an entire movie theater showing "Up" made available for DD folks and their families (movie theaters are not an easy thing for a kid like Hollis to act appropriate in), and they have other events and classes throughout the year.

We got the swing partially as a result of a sensory integration evaluation that the Department of Mental Retardation conducted a few months ago. Many kids with developmental delays and autism spectrum disorders have behavioral issues that can be related to how they process sensory information. Hollis has always had some sensory integration issues, in which she presents as sensitive to light touch, but prefers stronger "input", and she can be overwhelmed by busy environments with a lot of visual and auditory stimuli. If she gets too much of this stimulation, she can go off on a behavioral bender, sometimes becoming very aggressive, or withdrawn, or conversely, supercharged! Sometimes she seeks out a lot of stimuli, hurling herself against a couch, repetitively, banging her head, or sticking her fingers in her eyes. After the sensory integration assessment, the swing was recommended as one therapeutic method to give her appropriate sensory feedback, and to soothe her before she gets to the point of a behavioral breakdown.

At the butterfly garden

2009-06-06T21:49:00.008-04:00

Daddy post: As Jessica has mentioned, we have been struggling with Hollis' behavior over the last several months. Most days I come home and would get a punch or kick from my daughter. I felt like I didn't know who my daughter was anymore. But recently, we have started to see some improvements in her behaviors with today being the best yet. We went to the Butterfly Place in Westford and Hollis loved it. She was smiling and laughing, walking around without hitting me or other people and even giving kisses. Her behaviors are still inconsistent from day to day and I don't know what's exactly changed to make her start acting better. One piece of the credit has to go out to her school, the Northshore Consortium which implemented a new behavior plan about a month ago which seems to be getting results. I never know if this will last or what the next challenge will be, but today it was just nice having my daughter back.

No new tale to tell

2009-05-22T22:38:00.003-04:00

Things have been rolling along a similar path since my last post. Still struggling with behavior issues, taking a step forward then one back. We're working hard with school to figure out strategies to help avoid the aggressive behavior, and how to deal with it when it happens. Hollis always manages to be a step ahead of us just when we think we have a plan in place! Other than that, health has been good, growing like a weed, and just getting to be a very big girl!

Back to the drawing board with behavior

2009-05-05T21:20:00.004-04:00

We had a fun Friday (insert sarcastic tone here). Hollis was a behavioral nightmare all last week and it came to a big frothy head on Friday. She wouldn't eat. She wouldn't drink. She would hit, scratch and bang her own head. We don't like any of these choices. She also ended up with a low grade fever, so we determined the best course of action was to see if this behavior was related to an illness.

Brought her to the pediatrician, and Hollis beat the living daylights out of me the entire time we waited (a grand total of about 10 minutes). Continued the beatings while I explained to the doctor what was going on. As I was trying to corral the fists of fury, Hollis made her way over to the doc and belted her! Lovely child. The doctor then said she wasn't going to be able to do an examination on her in this state, and sent us to the emergency room where they could sedate her if necessary to get the examination. Oh goody!

Off to the ER we went, fully prepped for an awful time. Daddy joined us shortly after Hollis and I arrived. For entertainment, I ordered up a blood pressure cuff, coincidentally from an old childhood friend who works at the hospital, since I've discovered that Hollis thinks these things are hilarious. The ER doc was fully prepared for a wild child, courtesy of a phoned in warning from the pediatrician, but of course, Hollis decided she was going to be sweetness personified. After her examination determining that Hollis had no fever, no sign of strep throat or ear infection, we came to the conclusion that it was side effects from her seizure meds and the lack of behavior meds that were making her so aggressive, irritable, self-injurious, and generally miserable. A personal consult from her neurologist who came to see what the hullabaloo was all about confirmed our suspicions.

So, the bottom line is, if it ain't broke, don't fix it. We went off her original behavior med, Risperdal, which was very effective, but we were searching for something with fewer side effects. What we ended up with was trying a new med, Abilify, which turned her into Godzilla. We all agreed after this failed venture that Risperdal was just dandy, and we'll just stick to what we know.

Off behavior meds for a couple days = happy?

2009-04-25T19:44:00.005-04:00

We decided to give Hollis a break from her behavior med rollercoaster for a few more days to see if we can manage her without them. She's still very aggressive, but is listening more than she was on the last round of drugs, and is 1000% more alert and happier. That last one just was WRONG!

Today it was about 90 degrees, so we spent some time outside doing "summertime" things. We went to the park, which includes an enclosed area for skateboarders, and Hollis was just thrilled to see all the boys there. She could have stayed there all evening drooling over the skater boys.

Not this one either...

2009-04-23T20:29:00.002-04:00

The latest behavior med Hollis went on made things worse. She has done nothing but beat the living daylights out of her poor PCA and us all week long. Our behavior management tactics have failed miserably: when she hits, she is supposed to go into her "time out" room. Well, Hollis has decided that she likes it in there, and will put herself in the room willingly. Not much of a threat anymore. The best part of this miserable comedy is that her PCA realized the time out room wasn't working, so she made her sit in a corner, just like we did in the old days. Hollis didn't like that much, but when she was done with the corner and told she could get up, she walked over to the time out room and closed the door behind her and stayed in there for awhile. She is such a smart little devil, and knows how to press all of our buttons! Thank goodness school vacation is over and she'll go back on Monday. We'll be on a different behavior med by then, and hopefully she won't be ready to go ten rounds with her teachers.

Groucherella

2009-04-15T17:33:00.002-04:00

Hollis has her grouch on, big time. She went off one behavior med, and we started her on another. We waited to see what her "baseline" was off behavior meds entirely: it was scratchy, bitey, hitty and generally nasty. Not too nice to live with that, for one and all. Today we started on a different behavior med, and so far, she is whiney, grouchy, antsy and still scratchy, bitey and hitty. Never a dull moment over here!

Tweaking the meds

2009-04-07T14:39:00.002-04:00

We're trying to get the right mix of anti epileptic meds to get seizure control and minimize side effects, which is quite a tricky balance. Hollis has been very tired lately and also has some tremors, both of which can be side effects of some of her meds. She's had a few blood draws over the last few days to check her levels to see what's going on in the whole system. We're fortunate enough to have a great neurologist who goes into great detail about all the interactions, how the drugs break down, flow through the blood, get stored and released in fat, make their way up to the brain etc. I always feel like a med student coming out of one those appointments. Hollis has 3 or 4 doctors who are like this, that give us a full picture of what we're dealing with in their particular area of expertise. I am always grateful that these men and women will take the time to do this, because we have certainly run across others who are anxious to get us out the door. The more we know, the better we can care for her overall needs.

Another one today

2009-04-02T22:19:00.002-04:00

Hollis had another seizure today. She seems to be getting a cold, so that could be the cause of it. Going to see her pediatrician tomorrow to see if there's something beyond a cold brewing. She's been pretty out of it all week since the seizure on Monday. I'll be happy to get this week behind me.

A big one

2009-03-30T17:40:00.002-04:00

Hollis had a really "big" seizure today, same pattern as the other three, at naptime, around 4PM. What we don't know is if she's having equally awful seizures during the night, because they are pretty quiet. She goes very stiff, eyes roll up and to the left, she turns red, and has very labored breathing. Even with her video monitor that would be pretty tough to catch. It's only because we are right on top of her when she naps (she sleeps in the guest room on the main floor at naptime) that we have witnessed the prior three.

Tears

2009-03-29T21:08:00.004-04:00

Saturday Hollis had her first EEG since her surgery. EEG's are akin to torture for her: she has always had sensory issues with her head, and having all those leads attached just makes life hell. Even the marks that the tech writes on her scalp to know where to attach the leads is horrifying for her. This kid could have her blood drawn every hour and be much more content than having to go through EEGs.

It was during the application of the leads that Hollis cried for the first time in months. It made me think how often she used to cry before the surgery. She would have seizures that would result in injury, or would last a very long time, or come in clusters that wouldn't break for over an hour, and many of those times she would cry. She would also cry a lot more in fear, anticipation of something she didn't like, or just because she couldn't express herself any other way. What a gift for her not to have to cry as often anymore!

Riding in style

2009-03-22T22:48:00.003-04:00

We went to celebrate Hollis's birthday with Damien's folks this weekend, and for a treat, Damien took Hollis for a quick ride around their neighborhood in Grandma's convertible. It was cold outside, but Hollis loved being in the front seat and even tried to help Daddy shift the car (yikes!). She had such a ball, that when I went to get her out of the car, she signed "more" desperately, and tried to latch her seat belt back on when I took it off. She looked dejected when we put her back in our regular car, a minivan. Is there such a thing as a convertible minivan: if so, I think we might be looking for one!

Happy Birthday!

2009-03-17T20:38:00.003-04:00

Hollis turned 9 this week! I can't believe what a big girl she is...sigh. Time just goes by too fast!

Enjoying the nice weather

2009-03-08T19:46:00.004-04:00

It's been a tough winter here, but we finally had a day of mild temperatures to break up the monotony. I believe just about everyone in the state was outside, just to remember what it's like not to have to wear a parka, hat and gloves.

We went to the beach to walk around, and we wore Hollis out, poor girl! She had fun slopping through the mud and stepping in puddles. We had to take a couple of breaks to let her rest. On one break, she sat next to beautiful Keeshond, Nico, and he was very friendly with her, but Hollis could have cared less about him!

Bowling at home

2009-03-01T18:12:00.004-05:00

The family gift for Hollis's birthday was a Wii. (It's a little early, but who's counting?) She loves the bowling and tennis games. We also got the Wii Music game, which is a little harder for her to understand, but when she hears it play "Twinkle, Twinkle" she sings along.

Shhhhhhh!

2009-02-22T21:10:00.004-05:00

We went to the Mary Baker Eddie Christian Science Library Mapparium today. It is a remarkable place, with stunning acoustics that allow you to hear whispers from end to end, and to hear yourself in surround sound if you stand in the center of the globe. Hollis was a little scared at first because she's a bit claustrophobic, and the sounds were everywhere (even the sound of paper crinkling), but once they started the demonstration which includes turning the lights down and lighting up parts of the globe, she settled down. She was especially excited when a part of the recording of Dr. Martin Luther King's "I Have a Dream" speech was played: she did a little dance while he spoke. He was always one of my heroes growing up, so I was very proud.

6 month follow up

2009-02-19T20:24:00.004-05:00

We had our 6 month post surgery follow up (OK, a little bit later than 6 months) with Hollis's neurologist in Children's Hospital. He was pleased with the fact she only had 3 seizures in the time since the surgery, and we are too, we just wanted to know if we had to be concerned about having any more surgery: thankfully, he said we're done. We are making some adjustments to her meds, because she's gained about 30 pounds since September - that's largely due to another one of her meds, notorious for weight gain.

This week we also had her Rehab Physician (a.k.a. Physiatrist) appointment, to assess her neuro-muscular situation. Her gait is definitely worse than what it was prior to the brain surgery, but not by a lot. She's getting a new adaptive "girdle" to help give her right leg some support and a bit of a twist, because right now, it points outward about 90 degrees. Should be interesting to see how that works!

Another one...

2009-02-05T16:30:00.003-05:00

Another tonic-clonic seizure today. Same scenario: in her sleep, wakes her up, makes her very cranky and she's whipped for the rest of the day. We're seeing the neuro in about a week and a half, so we'll see where we go from here. That's 2 in about a one month stretch. I'm not particularly happy about them getting closer together. One of her neurologists always said that seizures have a way of training the brain to have more seizures: like they find a path to make the bad connection, and they keep going there, and creating more ways to get there. That's what I'm nervous about. This coming appointment should be very interesting.

Special Olympics Passion Plunge

2009-01-31T13:23:00.004-05:00

My husband was one of a couple hundred nuts who jumped into the Atlantic at Revere Beach today, to support the Special Olympics. His team, the "r'EMARC'ables", (Eastern Middlesex ARC), raised over $12,000. There were kids from Revere High School, Tufts Women's Rugby, Worcester Polytechnic Institute and many other groups. It was 25 degrees today, with a water temp of 38 degrees. Damien's response after he came out of the water was, "It was fine until my head went under; I think I drank a gallon of Revere Beach water", from the shock. There was enough snow and ice on the beach that they actually had to truck sand onto the beach so folks wouldn't slip. It's been a tough winter!

Growing out phase

2009-01-24T12:44:00.006-05:00

We're working with the hair growing out phase. Hollis only had one side of her head shaved for her surgery, so it has been growing in unevenly, but we've been cutting the unshaved side to make for some kind of style since the summer. I've decided it's easier to have her hair longer, one, because she hates having her hair cut, and two, she has cowlicks that are impossible to tame. She used to be fine wearing ponytails and barrettes when her hair was long, but now she's decided she can't stand them. Witness the attempt of a putting a headband on her, and the subsequent goofiness that followed.

Second seizure since surgery

2009-01-07T15:53:00.003-05:00

I guess it isn't too bad to have only had 2 seizures since the surgery on July 11th, but I was really hoping that first one back in September was just a little "rewiring" in the healing process. Hollis had a tonic-clonic in her sleep today, during a nap, and of course, it really upset her, and made her even more tired. She is probably getting a cold, since I've had a pretty bad one for a week, and she also (how do I say this delicately?) has a "backup in her plumbing". I guess it's "reasonable" to have a seizure once every 3-4 months, considering we were at 10-12 a day before the surgery, but still, any seizures really stink.

Caramel Apple Yum

2009-01-04T17:00:00.002-05:00

Just a quick post of Hollis enjoying a treat of Caramel Apple Spiced cider from Starbucks. She's looking so grown up these days!

Joining in the toast

2008-12-27T22:29:00.005-05:00

Hollis really enjoyed Christmas this year, and was even able to sit at the table to eat Christmas dinner. She toasted the holiday with us, using her own champagne flute. This, of course, was hilarious. We went to celebrate with Grandma and Grandpa, and had a lot of fun, and she loved opening gifts (a new thing). It really was a remarkable Christmas in many ways, and we have certainly been given the biggest gift we could ever hope for!

Santa's Little Helper

2008-12-20T22:02:00.004-05:00

Hollis helped Santa pick out her gifts today, once we were able to escape the house after our little snowstorm (a foot isn't so bad, is it?). We let her play with the ones she picked herself, and Santa has a couple more waiting under the tree for her for Christmas Day. Funny enough, most of the things she chose were toys we had already had at some point, and were dead from years of love. The kid knows what she likes.

O Christmas Tree

2008-12-15T19:03:00.004-05:00

Despite my initial reservations between kid and cat damage, we put up a Christmas tree. I tried to be "smart" about it, so it only has unbreakable lights, garland and ornaments. So, when it goes down, and it almost surely will, nothing will shatter! Hollis is really pleased with it: she can't wait to go and sit by it and play with her toys, and to sneak a pull on the lights when we're not looking.

Here's Hollis looking at the tree with awe, and a video of her playing with one of her old favorite toys, with some assistance from our cat Jasper.

Not a snow bunny

2008-12-08T18:00:00.002-05:00

Hollis is a California girl in her heart. She was born there, and only lived there nine months before we moved back to Massachusetts, but I'm convinced she remembers how pleasant the climate was compared to here. The kid didn't even wear socks until we moved, nevermind hats, coats, mittens, etc.

We were outside yesterday, walking from a parking garage to our destination, and it was lightly snowing: very lightly. Hollis had a couple flakes fly in her face and she was ready to turn around and go back to the car. Needless to say, I don't expect to take her sledding anytime soon.

Christmas shopping

2008-12-02T19:17:00.004-05:00

Every time we come around to this time of year, I'm filled with a little heartache. Christmas shopping for a child with developmental and physical disabilities is very challenging in a "normal" store. I have shopped for Hollis in the infant toy section for eight years. I have seen the same toys, over and over, changing little from year to year, and wondering if there's anything new I can find that she might enjoy. She has a very limited amount of things she likes, so we continue to repeat the mantra of gift choices - books, magazines, musical toys. We've tried adaptive toys as well, but surprisingly, they are very much like the infant toys available anyway.

Christmas itself has to be pretty low key too. We have put up a tree about 3 times since she was born because she has pulled them down onto herself or broken ornaments by chucking them. She gets overwhelmed when there's a lot of new "stuff" around, hates wrapping paper, and doesn't want to sit and go through the whole presents hoopla anyway. So, we typically spread things out over the course of a few days: give a gift here and there, to gradually introduce her to the new things. We have learned from various meltdowns that this is what works best for her, and everyone is a lot happier at the end of it all.

Squishing Grandparents is fun!

2008-11-29T19:01:00.005-05:00

Whether it's squishing Gram with her body weight, or squeezing Dziadzi's nose until it bruises, Hollis thinks grandparent abuse is fun!

Christmas songs

2008-11-23T20:42:00.005-05:00

For the traditionalists...Andy Williams, "It's the most wonderful time of the year".

For the non-traditionalists...Bob Rivers, "I am Santa Claus".

I can reach ANYTHING

2008-11-19T16:08:00.003-05:00

Mohawks in the mist

2008-11-16T12:31:00.004-05:00

There's something so irrestible about making a mohawk in the tub, isn't there? Her hair is coming in really well now, and we'll probably be getting a new haircut to make her little pixie-fauxhawk again. We went to Revere Beach yesterday and walked around in the mist: there was a cold front coming through, so the water was very choppy and whacking the sea wall as we drove down through Lynn. Doesn't matter what the weather is: we're beach people and we'll go anytime!

Halloween

2008-11-01T09:44:00.004-04:00

For the first time, Hollis actually enjoyed Halloween. She was interested in going around the neighborhood (3 houses) and being able to pick out a treat and put it in a bag. And, of course, the whole walking outside at night is pretty cool. These pictures are from her school party and one of their class therapy dog Isaac, who clearly is up for anything.

Good day for a hike

2008-10-26T17:50:00.006-04:00

We all went for a little hike at the Ispwich River Audubon reservation today. Hollis managed to get about a 1/4 mile in before she tired out, so we took it slow on the way back up the hill. In the end, it involved a bit of carrying her, no easy feat at 70 pounds!

Way too much fun!

2008-10-16T14:53:00.004-04:00

Hollis went to Newburyport this weekend and played on the jungle gym in town, shopped in a toy store, and strolled along the docks, looking at all the boats lolling around. She made a dash for the Harbormaster's gangway, because clearly, she is master of the harbor, but we managed to wrestle her away before she caused too much mischief. We had a very difficult time getting her away from the water (no surprise), and had to strap her into her stroller and run full speed back to the car so she couldn't make a break for it. Once she sets her mind to something, it is hard to change it.

A medley for your enjoyment

2008-10-11T20:08:00.004-04:00

Hollis has a great memory for songs, and can even sing along with songs she's not really familiar with - she just has that musical ear. This always amazes me, because she only has a vocabulary of about six words, but she has a musical dictionary in the hundreds! Of course, she's no Ella Fitzgerald, but she carries a tune and can "scat" just like her!

Whirly girl

2008-10-05T22:03:00.004-04:00

We went to the Topsfield Fair today, as we do every October, and this was the first time Hollis really could enjoy almost everything there! For some reason, she really likes chickens, so we visited the poultry shed, where she made friends with a Bantam chicken and a sort of Lilliputian duck called a "Gray Call". After this, she had fried dough and a corn dog, and loved both. In past years, she had been either on the ketogenic or low glycemic index diet for her seizures, or was not eating due to her meds, so this was her opportunity to try the treats served up at carnivals all over the U.S.

Even after eating these deliciously starch-laden greasy things, she was up for a good twist on the Tilt-a-whirl. Dad and Hollis went on first, and she screamed with delight the whole time, until the ride ended and she signed "more" desperately. Mom took the next trip, and it seemed like I ended up with the whirliest of the cars: I walked off very dizzy and feeling car sick. Hollis, ever the adventurer, still wanted more, but we thought we'd better cool it on the "pukey" rides for one go, and Dad took her on a kiddie roller coaster. She loved that one too, and screamed as it went down its dinky little hill and around its tiny curves. When she got off, we thought we might have her take it easy for a minute, but alas, the Tilt-a-whirl was in sight, so she took off for that. Dad took her again (thank you!), and they spun madly around and around. She could have kept it up all day, but parents' tolerance for the dizzy rides is a bit more limited than an eight year old's.

Role Reversal

2008-10-02T16:49:00.004-04:00

Hollis was pushing Katie around today, literally. She didn't want to ride her trike, so she thought it might be fun to make Katie ride it. Then she put Katie in her stroller and pushed her around in that for awhile too, laughing hysterically the whole time. Hollis is about 4 inches shy of Katie's height, and when she gets there, we're going to be in trouble! At the rate she's going, she'll be pushing around Mom and Dad (at 5'10"and 6'3") in just a couple years!

The Doggy

2008-10-01T09:19:00.007-04:00

It's been a little longer than I'd like between my posts, but my hard drive died and I was waiting for the replacement part. I fixed it and we're back in business! A couple of weeks ago Katie brought over her new boxer puppy, Romy, to play with Hollis. Hollis loves her school's therapy dog, Isaac, an old yellow lab, and we have 2 cats that she loves to chase around. I should also add that around this time last year, I tried to get a puppy for Hollis and she was a bit overwhelmed by the whole thing. I thought she might have changed her opinion since the surgery, since she has seemed a bit more tolerant of stimuli, but apparently, she reserves the same opinion regarding puppies as she always had: a little too much when close, but OK when far away. See picture below for reference:

Hollis has been "helping" with this post. She is sitting on my lap while I'm typing, adding some of her own thoughts including "abnm" and "3nmee;". She also stole my coffee, and chugged some down. A picture of the evidence follows. A glimpse of the rare Mom bird, with wet hair even - stunning! ; )

Out to lunch

2008-09-22T15:08:00.003-04:00

We took a trip up to Maine this weekend to get some of that good "Fall" air that comes earlier to the good folks up North. Hollis enjoyed the ride up, but was really excited to get out and walk around too. We did something with her we haven't done a many years: we went into a restaurant to sit down and eat. Granted, it was a glorified pizza joint, but we did actually have to sit and wait for our food and eat it at the table. We haven't attempted this for a long time because she would always scream, throw things and be a general menace to society: and that was just in the first 5 minutes!

She actually was able to sit still for about 10 minutes before she had to get up and walk around a bit, but she didn't make a big fuss about it. When the food finally was ready, we took it outside on their deck to eat it. She enjoyed the salad, the french fries and cheesesteak sub, and the whole scene only fell apart toward the end when took Daddy's hat and threw it into some rosebushes. Then the goofball came out: she started letting the food fall out of her mouth and she thought this was hilarious. We left soon after this little matinee performance.

Riding a trike!

2008-09-17T20:33:00.003-04:00

Sorry for the long delay in posts: it's been a busy week! Hollis has been doing better at keeping her behavior in check at school, and by the time she gets home, she's back to her Tasmanian Devil routine. We will be adding a does of Risperdal in the AM next week, so we'll see if that helps with the home behavior. Otherwise, we're just settling into her little school year routine, which she is very happy with. They keep her so busy during the school day that being home with Mom and Dad could never compete. Here's a video of her riding an adaptive tricycle that her PCA Katie's brother used to use when he was younger. She was enjoying it until Mom and Dad came home from having a dinner date (shock, horror!), and saw the car - then she insisted that she needed to go for a "real ride".

Autumn in the air

2008-09-11T21:15:00.007-04:00

Yesterday and today felt like Fall! It's hard to believe 2 weeks ago we were going to the beach and playing in our wading pool. I dumped out the pool yesterday and the water was frigid! My neighbors are closing their in-ground pool this weekend, so I guess we're battening down the hatches and getting ready for the long winter. I'm trying to figure out what I'm going to do with this kid and her energy when it's 30 degrees outside (she isn't fond of the cold like her Mom)!

These are some snapshots of Hollis's last trip to the beach. Her PCA, Katie, and her boyfriend Brendan took her and Hollis was in heaven!

Trouble with a capital "T"

2008-09-09T16:44:00.005-04:00

Last week I received the equivalent of a phone call from the principal's office regarding Hollis. She has always behavior problems at school with screaming, tantrums, non-compliance and hitting, so we've had her on a "behavior plan" for a few years now. Her wild woman routine on Friday totally broke the mold, so I got a call from the director of the school asking that we have a team meeting ASAP to try to develop a strategy for dealing with her outbursts, energy, and aggression. A summary of her activities from Friday was that she got up on a therapy table, pulled something hanging from the ceiling and jumped off the table, all before anyone could get to her to stop it. She also had been poking kids in the eyes, and pushing them around, laughing hysterically the whole time. Not nice.

We decided we needed to get her on the behavior med (Risperdal) her Psychiatrist prescribed immediately after this, so we started it up on Sunday night. On Monday at school, she almost fainted (a common side effect of this drug). The doc told us to cut the dose in half and try again. Today she was better, though still sleepier than she has been, but her behavior at school was more manageable. We're hoping that over the next few weeks her body gets adjusted to the med, and we get the positive benefits without the side effects, which apparently is the unthinkable dream.

Having fun in the bathtub

2008-09-06T19:55:00.004-04:00

First, let me get the important stuff out of the way: Hollis hasn't had any more seizures since my last post (yay!). The docs say that it does happen, but they aren't concerned that they didn't make the full disconnection with the hemispherectomy. Her stroke was so large that there are probably damaged areas even on the "healthy" side of her brain, so it's plausible that there could be some electrical misfiring coming from there. Her neuro upped her Topamax dosage, and we'll just wait and see what happens. We're just happy that it was one: typically when she'd have tonic-clonics she would go into a cluster of them that could last all day.

We're down visiting Grandma and Grandpa, and Hollis had a great time taking her bath in their jacuzzi tub. Here's a picture (with a rare Mom sighting, because I'm usually the one behind the camera). We're trying to keep her from destroying their house too: she broke a light in half at our house on Thursday, so her behavior hasn't improved much. More on that in my next post.

!@#$%^&*!@#$!@#

2008-09-04T21:36:00.002-04:00

Hollis had her first seizure since the surgery today. It was a tonic-clonic (grand mal) and about 2 minutes long. She was was very irritable, confused and tired afterward. We're all pretty deflated right now. I'll be calling the doc tomorrow to see what we do next.

The latent cheerleader

2008-09-04T13:56:00.000-04:00

When we went for a walk in the park yesterday, there was a cheerleading practice/tryout with about 30 girls from ages 9 - 12. They were shouting, "Go. Fight. Win!", and Hollis absolutely loved it! She clapped and said "yay" when they finished, but also wanted more, so she signed "more", as you can see in this video. She also did her own version of the cheer: "Ack. Ack. Ack!" She really wanted to get involved, but I held her back since it appeared to be a tryout, and I didn't want to disrupt the girls. After they were done, they congregated in a gaggle around their Moms and the instructor, and Hollis went over to check them out. I told them how much she liked their cheering, and they were all really sweet to her and said "thank you". I wonder if there's a "special needs" cheerleading team? ; )

Psych

2008-09-03T17:31:00.004-04:00

We went to Hollis's psychiatrist today to get the lowdown on her behavior issues (being wildly hysterical nonstop, inability to settle herself down, appetite for destruction, sleep disruption, angry outbursts with aggression, etc.) The behavior has changed so much from the time of the surgery, we weren't sure that it was something that was always there, and was tempered by the seizures, or whether the combination of her meds might be doing something new, now that there are no seizures to contend with.

Dr. W. felt it was probably a combination of her mental status changing after the surgery and now having the wrong psych med for her behavior. Prior to the surgery she was on an anti-anxiety med, as we had guessed that a lot of her outbursts were related to being afraid of various situations she was in (claustrophobic rooms, new environments, doc's offices, etc.). If that anxiety is not as much an issue anymore, then perhaps the medicine is what is causing all this new bizarre behavior. So, we're going to wean her off the anti-anxiety med, and see how she does. If things don't improve, or we still are having the off the wall hysteria and aggression, we'll try another med to see if we can better manage her behavior, because she isn't responding to punishment, avoidance, or praise techniques.

Back to school

2008-09-02T20:25:00.003-04:00

Hollis goes back to school tomorrow! Hooray! I'm hoping that the routine of school will help her regulate her behavior better. In talking with the neurologist today, he says he sometimes sees behavior problems get worse immediately after surgery, as the child learns her new abilities without seizures. Usually, the behavior issues get better with time. Please, please, please!

Follow up with neuro

2008-09-02T09:17:00.003-04:00

Going to the Neurologist today. Hopefully he will have some advice regarding the behavior issues we're dealing with, and whether they are related to the surgery. We're also going to ask whether Hollis can do without her helmet in school (she hates wearing it).

Fun

2008-08-29T21:46:00.011-04:00

Some great pictures of her time with Katie and Alan at the park, obviously having a blast!

Sock hop

2008-08-28T14:27:00.007-04:00

Daddy dressed Hollis up yesterday as if she were going to a 1950s sock hop - or at least the 2008 version of such a thing. All that was missing was the poodle on her skirt and a bow in her hair. She's still keeping us busy, and we continue to look for new things to occupy her energy! The day before we worked out on the elliptical machine, which is very amusing to her because of all the buttons and noises it makes.

Play date

2008-08-26T20:22:00.004-04:00

Hollis had a play date at the park with our PCA's big brother. He is 24 and has autism. He is an absolute doll, laughs a lot, and loves Hollis (in small doses). Hollis had fun playing peek-a-boo and sharing his toys.

Looking forward to school

2008-08-25T22:12:00.003-04:00

I am officially running out of ideas to keep Hollis entertained and out of trouble. School can't come soon enough. My apologies in advance to her teachers, paras, and therapists! She will come back with a ton of energy and ready to rumble.

Got her culture in

2008-08-23T19:58:00.006-04:00

We went to the Peabody Essex Museum today, where Hollis typically takes off running around the atrium and through the children's area. Today, for some reason, she wanted to stay in her stroller, and see the exhibits. This is a rarity - normally when we try this we are manhandling her away from touching the installations! I always leave seeing something I hadn't before, primarily because we don't get a chance to walk around without Hollis. She was content to go through most of the three floors (speedily) before she signalled she was ready to go. We stopped into the Polish market across the way, as is my habit when I am there. I tried to get her to eat pierogi, but she wasn't at all interested - what kind of Polish kid doesn't like a good potato dumpling?! I've got to work on the Polish traditions with her - Mom, Grandmom and Dziadzi sing Polish songs to her, but we haven't worked on the food much. Guess I've got to break out a golumpki recipe.

Destruction Junction

2008-08-21T21:43:00.002-04:00

In the last 48 hours...

Things tossed, thrown, hucked or knocked over: shredded carrot, jellybeans, Sprite, potato chips, pepperoni, piggy bank, stuffed bear, singing frog, telephone, pillow, clock radio, books, photo album (into receptionist's lap in doc's office), computer monitor (again, doc's office), coat rack (doc's office once more).

Inedible objects attempted to be eaten, bitten, and/or mouthed: cotton ball, pen, magazine insert, telephone, light switch, diaper wipes box, lipstick from Mom's purse, hand cream tube, book, old potato chip, sneaker, sock, chain link fence, headphones, venetian blinds, chair, wood chips, flowers, grass, sand, Mom's arm, Mom's shirt, own shirt, pillowcase.

Yes, she had eyes on her the whole time, but she is also complete menace much faster than her parents. Hollis has been spending a lot of time in the time out room lately.

Trying to tire her out

2008-08-19T20:15:00.002-04:00

One of the unanticipated side effects of the surgery is the surge in Hollis's energy level. While this is certainly a good thing, in my humble opinion she really didn't need any more! The energy is more like her being "slap happy": she gets absolutely crazy silly and starts destroying things and causing mischief. She goes through this cycle twice a day, once about 2 hours after she wakes up, and again about 2 hours before bed. We're trying to find better outlets for the energy because if she's in the house, she knocks over lamps, stomps on cats, turns on microwaves, stoves and coffeemakers, and clears countertops, all while laughing hysterically. And let me further clarify by saying that we cannot control the behavior, despite putting in her the timeout room, yelling, and trying various ways of settling her down by reducing high stimulation things like bright light or noise. So, we try to exhaust her.

Yesterday, we went to the YMCA pool and swam for about an hour straight, and left only because there was a class coming - she could have gone on and on. Today we went to the park and let her do "laps" around the perimeter. This was the first time we've ever let her walk by herself without a parent with a hand on her. She just did circle after circle, laughing the whole time, like she was getting away with something. The only time we intervened is when she would try to run into the football practice in the field next door: there were boys there, and she is absolutely boy crazy! Here's Hollis running down to the park (sorry for the low quality, I only had my phone on me.)

A question of perception

2008-08-18T14:56:00.001-04:00

Something happened the other day while we had Hollis at the park, and I've known it's been coming for many years. We were walking up the ramp to go to the slide and a little girl, about 6 years old said to her playmate, "Run away from the scary boy!" Hollis didn't understand this, which was fortunate, but I did, and, of course, it hurt me to hear it. There was a second when I told myself to ignore it, because kids this age don't really understand what her issues are, just that she's very different, and having one side of her head shaved with a big scar certainly isn't normal either. I decided I couldn't let it go, and approached the kids gently as possible, explaining that she isn't a boy, despite the short haircut, that she has more challenges in getting around than they do, that she can't talk like they do, and that she definitely isn't scary. The kids had lots of questions after this, so I answered them in the best way I could, trying help them understand why she is the way she is, and that she's OK that way.

We've often had questions from kids, and many puzzled looks, and some who even hide, but this was the first time I've overheard a mean comment. As I said, we've been expecting this as long as we've known about her disabilities, and I promised myself that I wouldn't come down hard on those who say hurtful things. I realize that from a child's perspective, Hollis can be frightening, because she is so big, but essentially has the abilities of a toddler. This is terribly confusing! I have found that most kids are very curious once you explain a little bit about what's going on. Instead of chastising kids for making a such a comment, I'm hoping that by helping them understand one child's disabilities we will encourage them to be more tolerant and eager to learn about others'.

Busy weekend

2008-08-17T21:08:00.003-04:00

Mom's going back to work on Monday, so we tried so jam as much fun into this weekend as we could. Saturday we went to the Children's Museum in Boston, and Hollis had enough stamina to run non-stop for 2 hours. On Sunday, we went to Rockport to go the the beach. She squealed when she saw the beach and ran right into the water. We swam around a bit, and ended up meeting one of Dad's high school buddies we hadn't seen in years. Hollis loved his little girl: she thinks babies are funny.

We've passed the 5 week mark for no seizures! We are beyond thrilled! It's hard for us to imagine life without seizures, so we still find ourselves with our hands constantly holding onto her, just in case she goes down fast. She is frustrated by all this overprotective parenting, and keeps on pushing us off. It is hard to break the habit: it's going to take a lot longer for us to feel like this is real.

Ready for school!

2008-08-16T09:51:00.003-04:00

We went to school to drop off Hollis's release to go back in September. She visited with her class and she didn't want to leave! She played with all her favorite toys, sat in her chair, and picked up her friend's Debora's picture from the board. She went over and poked her friend Amanda "hello", which made Amanda smile. I tried to get her to leave, and she kept on turning back and going into the classroom. Her teacher, PT and I finally had to almost drag her out. I think she's ready to be back with her friends!

Having fun with family

2008-08-14T21:16:00.003-04:00

We had a family get together today with some of our family from Oregon. Hollis had a great time seeing her Aunt, Uncle and her cousins. Grandma and Grampa and her Great Aunt and Great Uncle were here too. She was thrilled to see everyone, but was especially happy to see the guys! Here she is showing off her "bye-bye" to her Uncle and Great Uncle.

Gloucester in the rain

2008-08-13T20:35:00.005-04:00

On Tuesday, Hollis and I went to Gloucester to walk around a bit. Of course, on our way there it started to rain, as it has been doing quite often these days. It was a still a nice outing, despite being a little soggy. Hollis has been asserting her independence while walking lately. I think she now has the confidence that she isn't having seizures, so she feels she can run freely with no parent supervision. That's fine in many circumstances, but she doesn't really understand the concept of not darting into traffic or jumping off a seawall to get to the ocean. I tried to restrain her, and she kept on pushing me away. She is definitely becoming quite a containment issue. Here she is at the Gloucester Fishermen's Wives' Memorial and walking around the seawall. It is a beautiful area, and a very poignant reminder of how dangerous the fishing industry is.

Consumerism blues

2008-08-12T10:35:00.004-04:00

Hollis and I went to the supermarket yesterday to pick up a few things. I took her in her wheelchair stroller, and she was happy enough through one aisle, but she then decided to get out and walk behind and push it herself - very cute. Then things went a bit pear-shaped: she took off full speed, headed toward the toy aisle. I should mention my kid has never been the type to whine and complain about getting toys or goodies in any store, she just kind of relied on us to bring stuff into the house that she seemed to like.

I have counted myself lucky among the poor parents I would see in the stores with their kids throwing tantrums over Barbie, Bratz and Webkins: I thought we would somehow escape this natural part of growing up American. Alas, Hollis has finally realized she has consumer power, and she flexed that muscle at Stop and Shop. She went into the aisle and immediately spotted Dora and Elmo, her two favorite characters. Hollis then frantically waved her arms in a gesture suggesting she wanted everything in the displays while making her "I want" sound. She then picked up about 5 sets of Elmo plates and handed them to me, and went quickly over to a Dora telephone toy and tried to hand that to me too. I told her we weren't going to buy them, because we had plenty of stuff at home, and she took off again. She ran to the refrigerator case, and sat down in it as her protest. I finally was able to stuff her into her stroller again, but ended up leaving with far fewer things than I needed to get, but successfully managed not to cave into the tantrum - this time.

Physical Therapy

2008-08-11T15:28:00.008-04:00

Hollis had PT again today, and she actually had a pretty good time. The key is to have Mom out of the room: this was an old trick we used to use back when she was seeing her Physical Therapist, Mary, regularly. We had to stop when Medicaid decided that Hollis didn't need private PT anymore since she had it through school. (That's a story for another time...grrrrrrr!)

Mary has been working with Hollis since she was about 2 years old, and she has helped Hollis achieve so much! Back when she was a toddler, we were told by a few different parties that it would be unlikely that Hollis would walk without assistance (assistance = walker, crutches, etc.). So, we just worked with what she was able to do, and tried to increase her strength and her flexibility as much as possible. Well, despite how much she really didn't like to do the hard work of PT, this kid ended up walking on her own at the age of four! (See picture of her first steps below). Her pediatrician has said how much of a miracle it is that she can walk by herself, considering how her stroke damaged so much of the motor strip for her right side. Hollis is such a determined (perhaps stubborn is a better choice) kid, and Mary has been a key player in helping us pull out Hollis's full potential.

Out and about

2008-08-10T17:44:00.003-04:00

On Saturday, we went to a beautiful garden in Wellesley kept by the Mass Horticultural Society. They had test gardens, a rhododendron garden, herb and medicinal garden and a garden just for kids to play in. Hollis walked all over the place, showing some of her old stamina. She waved to a bunch of people as they walked by, and she especially loved the guy making the kettle corn. She went into a little tree house and watched as several kids went up and down the ladder. After all that excitement, she came home and crashed for 2 hours.

Setting her own program

2008-08-09T14:37:00.002-04:00

Hollis has decided that our elliptical machine is her personal jungle gym. She gets on and goes for a ride on the pedals and plays with all the buttons to make the incline go up and down. I've tried to get her to alternate her feet, just to get a nice stretch of her legs, but she always finds a way to avoid it. She is tighter in both legs and her right arm than she was before the surgery, so the stretching is more important than ever, but more difficult too.

One of her greatest nemeses

2008-08-08T22:17:00.002-04:00

Hollis isn't crazy about any doctor's appointments, but she has some specific medical professionals she really doesn't like, and she isn't shy about sharing her feelings about them. Today, it was her orthotist. He is such a wonderful guy, and Mom and Dad love chatting with him, but he is the man who makes her braces, and for Hollis, that means torture. He has to take a cast of her foot, which is just like getting a regular cast and then having it cut off to make the mold for her AFO (ankle-foot orthotic). It is not painful at all, but Hollis hates being restrained and having to be still for any reason. So, she squirms, screams, cries, scratches, headbutts and kicks: Dad was the designated "holder" today, and he's feeling a bit sore from the wrestling match, and her orthotist narrowly missed getting his head kicked in, but Mom's quick grab saved the day. I always feel awful about the performance Hollis puts on for this poor man, but he is always gracious about her outbursts and always very sweet to her.

Rockport

2008-08-07T14:14:00.004-04:00

Despite the weather being a little dreary, Hollis and I went up to Rockport, MA for a walk on the beach. It was about 67 degrees up there, and the water was mighty cold, but she took off in a gallop for the waves anyway. She stuck her tootsies in and we waded for a little while before she got too chilly. There were a fair amount of folks in the water, mostly kids. There's something about being a New Englander that makes you "enjoy" frigid water. I remember going in the ocean until my skin was blue and the water actually felt like needles. I don't indulge in that much pain anymore, but I still take a quick dip now and then - I guess I've gone soft. Hollis definitely has that New England toughness, and would go in the ocean in the middle of January if given an opportunity!

The trouble with meds

2008-08-06T23:24:00.004-04:00

If things continue to go as well as they are with Hollis's seizures, I am really hoping that we can reduce the number of medications she takes within a year's time. Giving her meds is a nightmare for her and for us. We just stayed in the habit of giving her the sprinkle (capsule contents) or tablet form of the medications, because when she was on the ketogenic diet we couldn't use the liquid form: the carbohydrate content is too high in the syrup bases of most drugs. It also proved easier (initially) to give her the meds on a teaspoon of baby food than what I can recall of giving liquid meds like Tylenol, which she just coughed right back at us. Well, now she puts up such a fight for taking this tiny amount of baby food with the meds, that all of us end up sweating, screaming, crying and usually covered in bananas and Depakote and Topamax sprinkles. She even knows the sound of the pill bottles and tries to hide when she knows they are coming. I have yet to figure out a better method of giving the meds, and we have tried a bunch: sticking it in food (she finds a way to avoid that piece of food), putting it in a syringe with water (sticks to side), using something with sticky texture like peanut butter (makes her gag), etc. My creativity has run out.

At the park

2008-08-05T22:05:00.005-04:00

We went to visit Wood End Playground tonight, for some climbing, sliding, swinging fun. The park was built by volunteers (including my hubby), and is largely handicapped accessible. It even has a picture communication board for non-verbal kids! It is a fantastic resource for the community, because it serves both the typical kids and kids with special needs. Here's Hollis loving riding in the swing set and going a little bit goofy!

Article in NYT - Epilepsy Surgery

2008-08-05T15:47:00.003-04:00

Here's an article in the New York Times with an interview of Hollis's neurosurgeon, Dr. Joseph Madsen. I love that even in the interview, you get a sense of how much of a "teacher" he is: he spent a good deal of time with us, explaining the structure of the brain, what each area does, and the details of how the surgery is performed. We are so fortunate to have people like him on Hollis's medical team.

3 weeks!

2008-08-04T16:03:00.003-04:00

We're hesitant to say things like this, because we're a little superstitious, but Hollis hasn't had any seizures for over 3 weeks, since her hemispherectomy! This is as long as she's ever gone without a seizure in her entire life! She is still on her meds, and still has the Vagus Nerve Stimulator running high, so it could be the combination of everything, but we're thrilled with the outcome, any way we get it.

In Frog Pond, Boston Common

2008-08-03T14:08:00.003-04:00

Hollis had a ball at Frog Pond on Boston Common. There were lots of tourists today, in addition to the regular local visitors. It is fun to live near a city where so many different people from all over the world flock to, because you can forget living here that it really is a tourist destination.

Cards from school

2008-08-03T10:23:00.003-04:00

Hollis received some beautiful, hand-made cards from her classmates at the Northshore Education Consortium. They have pretty butterflies and flowers, just like our yard! She just lit up when she saw them.

Hollis has been going to school at the Consortium since she was 3 years old. The school specializes in intensive services for children with multiple special needs. I give all the folks at the Consortium a lot of credit for what Hollis is able to do today. They work hard with kids that have the most difficult challenges, and they do it with sensitivity, dedication and love.

A new trick, not so nice

2008-08-02T14:14:00.009-04:00

Hollis came up with a new trick today, and wasn't too cute. She likes to rub her forehead on our cats, Emma (a very furry Persian) and The Boy (grey and white tuxedo cat). She's especially fond of The Boy because he doesn't take off when she's around. Emma is wiser than he is, and hides whenever Hollis is present, because she realizes Hollis will chase her around the house.

So, Hollis was being nice, rubbing her forehead on his fur, and then I hear the most bizarre "meow" out of this cat I've ever heard before: I turned to find my daughter BITING the cat's tail. She quickly acknowledged that this was not pleasant for either party, she with the mouthful of fur, and Mom yelling that it's not nice to bite anyone! The Boy isn't the sharpest tool in the shed, so he hung around for some more abuse, because at that point, Hollis was mad about being told what to do, so she started pushing him around. He finally got the point and ran off in a huff. My poor cats.

So tired...

2008-07-31T21:31:00.005-04:00

Hollis still gets very tired after a little bit of activity, though her stamina is getting better. She generally gets about 14 hours of sleep a night now, and takes a 2 hour nap during the day. Poor kid! Here's a video of her tucking in for a nap: she's singing the "Bye-bye" song she does every time she tries to communicate she's ready for bed.

Coincidence?

2008-07-30T21:40:00.001-04:00

As I've mentioned in some previous posts, Hollis has been eating extremely well since the week after the surgery. Eating has been a huge problem for her since about this time last year. She suddenly decided to stop eating altogether for about 2 weeks in July 2007, and when we finally were able to get her to resume, she would only eat a few items: pepperoni and sour cream and onion potato chips were her staples. Because she ate so little and because it had almost no nutritional value, she lost about 10 pounds in a month's time, which was equivalent to 20% of her starting weight - and, she was not a chubby kid to start with. She also lost about half her hair.

We always assumed it was related to one of her seizure meds, Topamax, which has a known side effect of decreased appetite. Unfortunately, this happens to be the most effective medicine she uses, as we found out when we took her off the Topamax for the surgery evaluation/seizure monitoring, and she promptly had 55 seizures in one day. So we were kind of stuck.

What I never really considered was the constant seizure activity she was having could have been making her nauseous. There are many different symptoms that people can suffer related to their seizures, (a list is available here), but because Hollis is nonverbal, the only symptoms we were positive she had was the exhaustion and post-seizure behavior of anger and frustration. Perhaps now, without all the excess electrical activity going on, Hollis's tummy is feeling better.

Back to her old tricks

2008-07-29T22:33:00.004-04:00

Today was much better than yesterday. Phew! Mom and Hollis went to visit work and it was a much welcomed mental health relief for me, but Hollis just wanted to keep moving in her stroller. So, I didn't get to talk with my friends as much as I'd like, but it sure cheered me up to see them all!

When we came home, Hollis took a nap because all that socializing is very tiring. After her rest , she was back to her mischievous ways, jumping on the bed and horsing around with Katie. She was having such a ball! I am definitely not the type of Mom who doesn't allow jumping on the bed: my theory is, Hollis has enough "can'ts" and "don'ts" in her life, and the fact that she's able to jump on the bed is great in itself, so why stop her?

Venting a bit

2008-07-28T22:45:00.004-04:00

Today was just not a whole lot of fun. First, we woke up to no electricity (and lasted for about 12 hours), which meant no warm breakfast for Hollis, and let's just say she isn't much of a cereal and milk sort of kid. That just got us off on the wrong foot.

Then, we had our first intensive physical therapy session. I should mention that Hollis hates any sort of physical therapy, and usually tries to wriggle her way out of it by any means necessary. Today, she pulled out the big guns: scratching, slapping, screaming, throwing things, walking out of the room, or just falling in a heap when asked to do something.Granted, she is very, very tight in her right extremities, much more so than before the surgery, and she is probably feeling defensive because it hurts to stretch, but Mom and the PT really didn't need the beatings we got.

Hollis had a pretty nice chip on her shoulder for the afternoon, but brightened up again later in the day. When we put her to bed tonight though, we ticked her off again: we had to put her wrist brace on, which she hates, and she tries to rip it off with her mouth, cries and generally has a really bad night's rest (as do we). The reason for the brace was to help straighten out her wrist which is in a very bad posture because of the tightness in her arm, but also to keep her from putting her fingers in her mouth and nose: she gave herself a bloody nose worthy of a prizefighter. Don't have any idea why she's doing it, but we're not having any luck keeping the fingers out of there.

As my friend Sue says for days like this, "Good times, good times...". Tomorrow will be a better day.

Outing to Salem

2008-07-27T16:17:00.006-04:00

We decided to take a break from pools/beaches today, and went up to Salem, MA, with the intention of going to the Peabody Essex Museum, one of Hollis's favorite spots to walk. When we got to Salem, we found some sort of festival on the common, so we decided to check it out. It was "Culture Day", and it appeared to be a combination of whatever didn't fit into other categories, plus a little, "there must be something on the common on a weekend - what should we do?". Upon our arrival, there was a dance troupe called "Sisters in Dance", and they were belly-dancing, which Hollis thought she should be doing too.

Hollis loves to dance, and will do so at any opportunity, and doesn't understand the concept of "upstaging" or "stealing thunder". For instance, last summer, when Hollis was a flower girl in my friend Trina's wedding, we had a hard time keeping her off the dance floor, even during the bride's first dance: we had to physically restrain her. When I told Hollis she'd have to wait her turn for her dance today, she responded with her angry Marge Simpson imitation, which she developed herself, by the way, not through seeing it on television. She finally got her opportunity, and walked around rather than dancing, which I would definitely call a sulk. ; )

Back at the pool

2008-07-25T13:31:00.005-04:00

We took advantage of the nice weather today and went to the wading pool again. I believe that the entire population of the North Shore also had the same idea, if they weren't going to the beach instead! It was a bit crowded, but Hollis loved it anyway, especially dodging all the little kids who were swimming around her feet like fish. This girl is a total water baby, much like her Mom, and would probably spend every day in a pool or at the beach (even in the winter)! She is still easy to tire, and we only spent about 20 minutes before she was worn out and told us she needed to go.

Dancing with Daddy

2008-07-24T20:06:00.005-04:00

Hollis is starting to get some of her copious energy back. She only took one two hour nap today, and her headaches seem to be further apart. We were able to switch from Tylenol with Codeine to plain Tylenol, and that probably helped with the sleepiness too. This switch also made her less itchy, one of the common side effects of many of the opiate meds like Codeine. She was goofing around with Daddy a lot today, with lots of giggling, and at the end of the day, we restarted our nighttime tradition of dancing before bedtime.

Eating like a horse!

2008-07-23T20:57:00.003-04:00

Hollis is making up for lost time in her eating, which is a very good thing, because she is too skinny to start with. She inhaled 2 donuts this morning, followed by pepperoni, and then for lunch, she ate half of Dad's cheesesteak sub. The best, though, was the garlic and olive oil spaghetti, which she fed herself. Here's a video of her chowing down.

A bit of history

2008-07-23T17:49:00.007-04:00

Many of you coming to the blog already may be familiar with Hollis's history, and why we had to go through this radical surgery, but for the folks just swinging through, I thought I'd give a little backstory to my brave girl.

Hollis was born with her seizures, due to a stroke she suffered while I was pregnant with her. We did not know she had the stroke at the time, but found out after she stopped hitting her milestones at about 4 months. The pediatrician we had at that time told us to wait and see what happened until 6 months. She became progressively more limited on her right side, and her arm tightened into a bicep curl and fist: we knew something wasn't right.

At seven months, she had her first MRI, and was diagnosed with a stroke, which started from a clot from her middle cerebral artery. The stroke more or less destroyed left side of her brain, leaving it scarred, and much smaller than the right side. This brain damage is what caused her seizures, left her very limited on her right side, with global developmental delays.

Hollis's seizures started off as "drop attacks", or atonic seizures, where the body quickly loses all tone, much like what would happen if a robot was switched off. If standing, she would fall, and crash into anything in her way. These drop attacks are very short, but extremely forceful. She has had more than her share of black eyes and bumps on the head in her 8 years. The seizures then progressed to tonic (stiffening), lasting about 30 seconds, and then tonic-clonic (the grand mal seizure most folks are familiar with) lasting up to 90 seconds. What started off with bumps on the head progressed into ambulance rides and multiple emergency room visits for clusters of seizures drugs couldn't break up.

We have gone through many different treatments including 7 anti-epileptic drugs, the ketogenic diet, and the vagus nerve stimulator. These made a dent in the number of seizures, which were at about 40-50 a day, but she was still having 6 - 12 a day. We eventually got to the point where surgery was the final option, and of course, we had been trying to avoid it because it is terrifying to think of putting a child through such an operation. At our consults for whether she'd be a candidate for epilepsy surgery, her neurologists and neurosurgeon said despite the radicality of the surgery, we'd be asking ourselves afterward why we didn't consider it sooner. I don't know that we would have changed our timeline, but we are definitely happy with the results we've seen so far!

Included are some of our favorite pictures of our girl, at 18 months, four years and seven years. The last photo summarizes Hollis's personality to a "T": "sassy"!

Here are two great links to find out more about epilepsy and types of seizures and syndromes. Below that is a link about childhood stroke.

www.epilepsyfoundation.org

www.epilepsy.com

www.chasa.org

Out and about

2008-07-22T23:53:00.004-04:00

On Monday, Hollis went to Bradley Palmer State Park's wading pool. We weren't sure she would be ready for a splash in the pool, but she just lit up as soon as she saw it. She spent about 15 minutes walking around the pool, and giggling at the other kids until she was exhausted. That took about 3 hours to sleep off.

On Tuesday, we went to visit her school, the Northshore Education Consortium, in it's new location in Beverly. When we got her out of the car, she was very happy, and squealed and laughed. We got into the building and met up with her teacher, Sandra. Hollis gave her a little bit of the "hairy eyeball", and I think she might have been wondering if we were bringing her back to school for real. We went into her classroom and met up with friends, old and new, and by the time we were there 10 minutes, Hollis had enough: she was motioning for us to get going. As she was leaving, she said "Bye", and Mom and her speech therapist, Lauren, started welling up with tears, because so far, Hollis has retained everything she went into the surgery with, and has only left the seizures behind.

It was a very big day for the little lady, and she had to come home to take a nap from that one too. As quickly as she is recovering from such an enormous surgery, we always have to take a step back and realize how much her little body is still going through: she is still taking 2 hour naps twice a day, and is also sleeping about 12 hours at night. She is still having headaches, but seems to have come out of the nausea phase of the recovery. Everyday is an improvement on the last.

It takes a village...

2008-07-21T13:44:00.006-04:00

You've probably heard of the expression of "It takes a village to raise a child", and in Hollis's case, we REALLY need a village! Both sets of grandparents have been up to help with the recovery, both in the hospital and back at home. Her, PCA (personal care attendant), Katie, and her boyfriend Brendan, and their friend, Alan came to the hospital to visit, and have been helping us at home too. We couldn't do it without all of them, and we love them all so much! I've included some pictures of our "village".

Hollis being Hollis

2008-07-19T16:53:00.004-04:00

Hollis is really starting to act more like herself today. She's singing, throwing things, giggling, smiling, imitating sneezes and giving kisses. She has also stayed awake for three consecutive hours, as long as she has been able to since the surgery. Hollis was very pleased to knock Mom on the head with her ball, so I thought I'd share the joy of that in this video.

Chuckles

2008-07-18T20:41:00.001-04:00

Hollis is now laughing! She was chuckling at Daddy and throwing stuff at him (very typical Hollis behavior). Everyday, a little more progress!

Grins!

2008-07-17T20:33:00.005-04:00

Hollis smiled for the first time today since the surgery! She smiled in the car, and a couple more times when Daddy started tickling her. We managed to catch it on the camera phone. She also ate a bit more muffin, and stayed awake a bit longer: a total of about 4-5 hours, but not consecutive. Healing is hard work! She also gave a little shake of her leg while laying on the floor to "dance" to Peter and the Wolf. Lots of hard work today, and lifted spirits!

How Dunkin Donuts saved our family

2008-07-16T20:24:00.007-04:00

Today, despite being the homecoming, was a "down" day for Mom and Dad. Hollis was not eating, under any circumstances, and wasn't interested in drinking either. She slept through most of the day, and when awake, was very angry with everyone. We got to about 6:30, and decided to take her for a stroller ride, which again, was not particularly well-received, but she caught sight of the car, and pointed, indicating that she wanted a ride (a pre-surgery favorite activity).

We took a short ride, and stopped at Dunkin Donuts to get Mom a coffee (another pre-surgery favorite), and we also got Hollis a blueberry muffin, in hopes it might entice her. She grabbed the bag from Daddy, and started digging in, and then pointed to the coffee (yes, my 8 year old loves coffee, and I'm not ashamed to admit it). It was such a huge thing to get her to eat, and a relief for us!

She was exhausted by the time we got home, so we put her to bed. At 8:00 she was due for more meds, so I gave them to her and said how happy I was to have her home, and asked if she was happy to be home: she responded with "Yay", and I just broke down into tears. It is such a relief to see even the small parts of Hollis's presurgery personality emerging bit by bit. The stress of seeing her so weak and unlike herself has been excruciating. Her recovery is coming along slowly, but it is definitely moving in the right direction.

Here is a video of Hollis with the music therapist as referenced in previous posts. The pictures are one of the windows that Grandma decorated for the 2 rooms that Hollis stayed in. I think Children's hospital wanted to hire her! The other picture is Mom and Hollis dancing to "Holly Holy" by Neil Diamond at the jukebox last night.

HOME!

2008-07-16T13:21:00.002-04:00

We're home! Hollis is still feeling very tired and nauseous, but we're all happy to be home to continue her recovery. Before we left the hospital, we had to prove to the physical therapist that she didn't lose any functionality, so we had to walk up some stairs. She didn't want to, but she did it: if I was feeling as bad as she is, I wouldn't either. We're still getting settled in, so this is short, but I'll try to update a little later. Yee-haw!

Getting outside

2008-07-15T20:51:00.004-04:00

Children's Hospital in Boston has a very nice garden area within its grounds. We took Hollis for a walk in the afternoon and she wanted to go out of her carriage to sit in the grass. She seemed to enjoy being outside.

She makes good progress physically. Hollis walked a little bit more this afternoon, drank a little and ate 3 potato chips. Our goal tomorrow is to try to get her to eat and drink more. If she does, we might be getting out of the hospital soon. She's been running a low grade fever but that has been managed with Tylenol. The nausea was better today, although Hollis was given more medicine to control it. We will give her less nausea medicine tomorrow and see how that goes.

We haven't really seen her personality come through yet. She hasn't said any of her words and no smiles or singing yet. From what we understand though, it can take some time before that comes back. I can't wait to get a kiss again from my daughter.

One last thing and I hesitate to post it because it feels like a jinx but I thought it would be good for everyone to know that so far we have not seen any seizures. It's still early and the doctors tell us seizures can persist after the surgery 6-8 weeks, but we have not seen any. Let's hope that continues!

Walked

2008-07-15T12:55:00.000-04:00

Hollis stood and walked with assistance today. She took about 5 steps to the door, and she's sleeping it off now. Still feeling yucky, but we're trying to manage it with meds. We also had a music therapist come by and she sang her to sleep. Dad may put pix on later today.

Ups and Downs

2008-07-14T21:25:00.005-04:00

Today was Hollis's first outing from her bed since the surgery. Though I think she enjoyed the change of scenery, I believe she was a bit motion sick because she ended up throwing up the Sprite she had drunk earlier. She was very happy to see Katie and Alan visit again today. She also loved her trying out the blanket her Auntie Kim made (on her lap).

On the final report from Daddy tonight, Mom sprung into instant tears: she was watching her Elmo video, and signed "more" when it was done, and sang a few notes of Elmo's song. Off to bed for now...thank you all for your prayers and good wishes!

Tube out, getting PT

2008-07-14T11:11:00.004-04:00

Hollis had her EVD drain removed this morning, which means she no longer has any drains in her head. The EVD went directly into the brain ventricles to remove excess fluid caused by the irritation of the surgery. So, now, she can move around a bit more freely in bed and the PT was going to come and work with her this morning. More updates later tonight when Mom is home again.

Transfer out of ICU

2008-07-13T21:39:00.003-04:00

So Hollis was transferred out of ICU today. She was more alert more of the day and waved bye-bye to a cute male IV nurse. Her function of her arms and legs appears to be about the same but she hasn't gotten out of bed yet and there will still be some time before we try to stand. The biggest issue we are dealing with is keeping the fluid/pressure in her brain at an appropriate level. As we learned today, she has to be very careful if she sits up or else she will start feeling icky.

Hugs!

2008-07-13T11:50:00.000-04:00

Hollis more alert today, looking around her room and seeing who's there. She found Mom, and reached up for a big hug and wouldn't let go. That's OK - I didn't want to let go either.

Happy to see Katie

2008-07-12T18:58:00.000-04:00

Hollis got to see her PCA, Katie, and she was so happy, she lifted her head up by herself! Lots of tears of joy!

One more night in ICU

2008-07-12T13:36:00.000-04:00

We'll be in ICU one more night, just for the nursing coverage. Still doing well, but tired and uncomfortable.

A bit queasy and sore

2008-07-12T10:11:00.003-04:00

Hollis is waking up more, despite being heavily medicated with Morphine and sedatives. She's definitely feeling some discomfort, but is more annoyed by all the IV lines and drains in her. She was feeling a little nauseous and had some dry heaves, but they gave her some meds for that, and she settled back down. Surgery was very clean and looks good and is draining less and less fluid. A little fever overnight, but it was controlled with Tylenol. Overall, she is doing pretty well, and is resting pretty comfortably.