One year

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!

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!

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

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

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

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?

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...

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

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

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

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

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

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

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!

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

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

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!

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

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...

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

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

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

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

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