Ongoing Events

As most of you know, Mr. Boo checked into Gillette Children’s Hospital on Thursday for a 24-hour VEEG. He did not particularly like being hooked up to all those electrodes, but he handled it with grace. Thank heavens for Sam, he told the tech he wanted to leave, and the iPad , for distracting him. He was not really interested in television, and a bed is not exactly a high action place to hang out. He was tethered on a 30-foot cord, so the farthest he could really go was to the bathroom and back. He was very happy when Daddy and Alissa came to visit him and brought Taco Bell. All things considered, the hospital food was not bad, but nothing beats a Freezie from Taco Bell. His visitors left around 9:30 pm and we got Boo ready for bed. He settled down relatively quickly and went to sleep. This lasted until 3:45 am when he was suddenly awake and very lively. He hooted and stimmed, hummed and banged. His bed had padded rails around it, in case of a seizure, so he happily bounced off those for a few hours. Eventually, breakfast came, and he happily devoured bacon and French toast.

After breakfast, the tech came to relieve him of his electrodes. As they had not used actual glue, it was pretty easy to get them out of his hair. I think he rather liked the experience, and then let me attack the chunks of matter in his hair with a comb and some detangler. Shortly after, the nurse practitioner stopped by. She had read the results of his VEEG. She said they showed no actual seizure activity, but some unusual brain waves. Instead of just smooth flowing waves, Boo had some waves that appeared spiky. She said these waves were little pops of electricity. Enough of these “pops” would lead to a seizure. This told the team that Boo needs to stay on anti-epileptic medication. No real surprise there. I had never anticipated that he would go off medication. I have seen what happens when Boo is off meds, and it is not pretty.

A light rain was falling as we dropped him off at Focus Beyond. He was ecstatic to be at school and teacher Rosalind was happy to see him. He bounced down the hall with her and I went home and took a long nap. When Boo got home, he was happy and hungry. He had a snack and watched some videos. I was playing with the hedgehogs and asked Robert to take him to the bathroom. Thirty seconds later I heard a heart stopping groan from Boo as he pitched headfirst off the toilet and had a tonic clonic seizure on the bathroom floor. Bathrooms are the worst places to have seizures, as our bathroom is tiny. I could barely get in the door around his thrashing body. All Robert and I could do was put towels under his head and try to protect him from hurting himself. The seizure lasted at least two minutes, and then looked as if it were about to start up again. We gave rescue meds nasally and waited. Eventually, the two of us were able to lift him off the floor and put him on his bed. I called the triage nurse at Gillette who called the doctor on call. Boo kept shifting around, his breathing labored and not able to get comfortable. The nurse called back. I described his symptoms and coloring. I was surprised that she did not tell us to bring him in to the ER. Perhaps, I do not come across as a hysterical mother. I go stone cold calm in the face of an emergency. I don’t fall apart until much later. Maybe some hysteria was needed. At any event, she told us to call back if he got worse. He eventually fell into a deep sleep. Robert and I brought our devices into his room and hung out while he slept. It was another wild Friday night chez Herndon. At some point we got him into pajamas and gave him his meds. He slept through the entire thing. I went to bed with his door open, my door open, and the monitor turned up loud. He did not make a sound the entire night, and when I got up at 4:45 am, he was still deeply asleep.

My thoughts on this matter. There are three stages to a seizure, prodromal, icthal, and post ictal. The prodromal stage is the precursor to a seizure. When Boo was exhibiting the unusual brain waves on the EEG, I wonder if this was his prodromal stage. The ictal stage occurred when he was in the bathroom. This is a full-blown seizure. It can last seconds or minutes. In anything over 5 minutes, and with rescue meds on board, one needs to call 911. The postdromal stage is the stage he is in now. This is the recovery stage. The person usually falls into a deep sleep. In the case of Boo, he may need anywhere from 8 to 12 hours of sleep just to reset his brain. I usually give him an anti-inflammatory at this stage, as people with epilepsy tell me that their muscles really hurt after a tonic clonic seizure. It is the muscular equivalent of running several marathons back-to-back. As a distance runner I have done this. Let me tell you, it hurts! As a runner, I am used to pain and discomfort, there is a reason for it. My body is sending me messages. Boo does not have this, all he knows is that he is confused and in pain.

I am not certain how to navigate the coming days or weeks. I know neurology will give me a call on Monday to discuss meds. I don’t want him to go back on the Topomax, as he seems so much more alert off it, and is finally gaining some much-needed weight. I don’t know if Fycompa is the right drug for him, if we just need to raise the dose again, or to try something else entirely. Today is bowling day with Special Olympics. Boo loves bowling. I will see how he is doing when he wakes up and then make the decision of whether to attend or to stay home. Starting this Tuesday, his class has the chance to go swimming every week at the JCC. Boo loves to swim, but with his seizures being so unpredictable, I don’t think this is safe. Perhaps, it would be better to have him play in the gym with his friends until we get things under control. I am terrified of the idea of him having a seizure while in the water.

I want to say thank you, thank you, thank you to all of you for your messages and good wishes while Boo was in the hospital and then last night. I know that Boo has a small army of people praying for him, sending him white light and good vives. It really helps to know that we are not alone in the world. I will keep you posted, and we will chat soon. Peace out and be good humans.

Bowling, Burgers, Caroline Carts, Oh My!

To say the least, Mr. Boo had a very good day yesterday. Alissa came and picked us up and took us to Special Olympics bowling. Due to Covid and my spinal fusion in 2019, we have not bowled since Boo was 16. He was clearly happy to be back in the bowling alley and likes his new team, the South Region Stars. This is a team of young adults and their parents, and he fit right in. He and I bowled two games, decided we were a bit rusty, but definitely could feel our skills starting to come back. After we were done, he made it clear that he was hungry, and we swung by McDonalds to get him lunch. At home we ate and hung out. Both Alissa and I needed to get some groceries, so with Robert, we all piled into the car. Once there, to our great joy, we found that the Caroline Cart was back! Though Boo can walk nicely beside me in the store and help select groceries, he loves riding in the cart. It makes him feel like a king. He was ear to ear smiles as we picked out our groceries. On the way home, we passed Taco Bell and stopped by to pick up his beloved Freezie. Once home, we put away groceries and then Robert and I took him for a walk. In short, it was a very good day.

I am hoping that the coming week is also good for Boo, or at least not traumatic. On Monday he has a sedated MRI to look at his scoliosis and possibly tethered spine. On Tuesday, he has yet another Covid swab. On Thursday morning, we check into Gillette Children’s for at least 24 hours for a video EEG. He has never had an EEG lasting more than an hour, and I am a bit nervous. I will stay with him the entire time, and Robert and Alissa will be in and out, providing backup for me, entertainment for him, and non-hospital food. With all of these medical appointments, he only gets to go to school for two days next week.

Thank you all for your prayers and best wishes these past few weeks. Boo has bounced back remarkably from his scary night at the ER. He is happy and busy in his world of school, bowling, walks, friends, and his beloved Sam. I will keep you posted about our medical appointments. Peace out and be good humans. Harriet.

Tuesday

Boo Bear enjoyed a good first day back at school. I skipped the first day of school picture. I don’t think I have actually taken one in about a decade. When your “kid” is 6 foot 1 and sporting the beginnings of a mustache, back to school pictures seem a bit silly. On the other hand, if you admire Mr. Boo’s mustache, he gets very silly and happy. The other interesting change is his voice, it has gotten really deep. For years, he has had a sort of high-pitched cackle when he laughs. Over the summer, this cackle has turned into a deep, rumbling bass. It catches me by surprise every time he is amused by something. Since he is amused by many things these days, I catch myself jumping a lot. This is also because sudden noises from Boo can mean the onset of a seizure and after last Friday night, I am a bit of a nervous Nellie.

In the Herndon house, this week is the beginning of Operation Cat and Mouse. Our house is well over 100 years old. Over the summer, it has become a mouse hostel. Eli and I have deep cleaned repeatedly. We have put all perishable pantry foods in plastic bins. Robert has set out mouse traps. (Honestly, I hate mouse traps and killing anything, but these little critters have started nesting in my dish towels. They need to leave, and now!) Eli has 4 cats that live with her mom. She says they are excellent mousers and we could borrow them for a bit. I never thought Robert would go for it, as he is allergic to cats (but deep down he loves them) but he is as sick of the mice as we are. So, hopefully, this weekend, Eli’s mom will show up with a few hungry cats. I plan to put their food, water, and litter pans in the guest bedroom which seems to be mouse central. They will have free range of the entire middle floor of the house. We are hoping one good weekend of mousing will solve the problem and these mice will gone and tell other mice that this is not a good place to hang out. Luckily, Mr. Boo likes cats. The dogs may be a bit surprised, but I think they can handle it. I doubt that the hedgehogs will really care. As long as they have bugs to eat and wheels to run on, they are pretty happy.

As I type, Mr. Boo is sleeping soundly. I am not, these days. I am running on vampire time. I am wide awake at night and really just want to climb in my coffin and sleep during the day. My family is not cool with his, so I am just drinking lots of coffee! I guess I am not fully a vampire yet as I still greatly enjoy garlic and am not usually scared of crosses. We shall see how thing progress over the course of the fall.

Thank you so much for all of your thoughts, prayers and kind words in the past week. It has meant a lot to us. In a few hours, I will rouse Boo from his slumbers, help him get dressed and put him on his beloved bus. I call it the yellow bus of happiness. I hope today something makes my readers happy. Be good humans and we will chat soon. Peace.

The Aftermath

Upon his return home for the ER, Boo slept for at least 10 years. He opened his mouth but not his eyes for his morning meds. Around 1pm he emerged from his room, both hungry and thirsty, which is a good sign. We did go for a brief walk to campus, as he likes to watch the college kids. Mostly he seemed happy to hang out at home. He slept well last night.

Today he seemed a bit ataxic. The post-ictal stage can be rough. Peter came by and took him out for pizza, which he happily ate. Returning home, he was restless. The battery life on both his iPad and Sam had expired. I felt like my battery life was at about 10 percent. To distract him from his devices which needed to charge, Robert and I took him for a walk. We stopped by campus and then walked down to the river. Jim was there playing his bagpipes and Boo stopped to listen. On the way back, he began walking more slowly. It seemed he was concentrating on where to place his feet. He was also tightly holding hands with Robert from me. About half a mile from home, it became apparent that he was truly struggling. He was staggering slightly, and his eyes had taken on an alarming shiny cast that can appear before a seizure. Robert parked us on a bench in the shade and went quickly home to fetch the car. Ten minutes later he pulled up and we got in. I began slowly administering sips of Coke to Boo. His face started to look better. Robert headed for the nearest McDonalds and got him a coke and some fries. I was guessing he was dehydrated and needed some fluids and salt. Though the fast-food chain is only 5 minutes from our house, Boo had completely slammed the entire coke before we pulled into the garage. He did not seem interested in fries but was very interested in a cool bath. Currently, he is happily curled on the couch with his dad, watching his beloved Sid the Science Kid.

It is obvious that I am going to have to watch Boo like a hawk in hot weather and not let him get dehydrated. I think that is what got us into so much trouble on Friday night. I have written a detailed letter to his case manager and team about how to handle and hopefully prevent seizures. Whenever Boo is away from me, my phone is always attached to me, in case a teacher or caretaker needs to reach me. Going into this school year, I had briefly entertained the notion of picking up a part time job while Boo is in school. I quickly squashed this idea Friday night. I already get paid a decent wage working for Boo 38 hours a week. This job gives me great flexibility within Boo’s parameters. This also means that if something happens to Boo while he is at school or with someone else, I have to be able to drop everything immediately and come to him. During the school year, I try not to be more than 15 minutes away from his school at any given time. Much as I would like to nanny again, or be a caregiver for someone else part time, this is not going to happen.

Thank you all so much for the care and well wishes we have received in the past 48 hours. It is good to know that Boo is loved in his little community. Give us a wave if you see us out and about and send him good vibes, please, as he enters he last year of public school. Be good humans, peace.

When your clock resets

In the epilepsy world, it you have a seizure, the slang term is that your clock reset. That means you are back to ground zero for being seizure free. After over 8 months seizure free, Boo’s clock reset yesterday in dramatic fashion. He and I had the best afternoon. We went over to the sculpture garden and wandered around. We took lots of pictures and giggled at the puppy who really wanted to play with the geese. The geese were not amused. He loved walking on the pedestrian bridge that spans the highway. It was hot out, but there were water fountains available. On the way home, I thought about stopping at the gas station to get him a drink, but then decided it was only 2 blocks until home so we could get drinks there. I got some Gatorade into him, and he seemed happy to just to hang out in his room and watch videos. I took one of the dogs and headed out for a quick run.

After my run and a shower I was starting to think about dinner when I heard the tell-tale (and heart stopping) groan that Boo gives when he is about to seize. I ran into his room in time to see him flip off his bed, hit his head on the floor and begin convulsing. The seizure lasted about 90 seconds. After this he dozed. Usually, after a seizure he needs a good 10 to 12 hours to sleep and reset his brain. Last night was different. After a while her perked up. He seemed happy to watch Sid the Science Kid on his iPad. He was very dopey, but it was sort of like hanging out with an amiable drunk. The doctor on call at Gillette said if he had another seizure to give rescue meds and call her back. Everything stayed calm for about 90 minutes and then all hell broke loose. He had another violent seizure and began projectile vomiting. At this point the on-call doctor told us to adminster the rescue meds and go to the nearest ER.

Robert got us to the ER in record time. Being a Friday night during the state fair, it was packed. I took one look at that crowded room and my heart sank. But the odds were in our favor. If you show up at the ER, you can’t stand, you can’t even hold yourself up in a wheelchair, and you vomit all over the triage nurse, you get seen immediately. No sooner had we entered the hospital, we were rapidly taken into a trauma room. They attached all sorts of leads and wires to him. Boo seemed very out of it, only coming to in order to vomit some more. The nurses and doctors were fantastic, even though the ward was packed. We ended up spending about 5 hours there, giving Boo IV fluids and Zofran. Eventually, they unhooked him from all the wires, gave us a prescription for more Zoran and sent us home. We got home around 3am. It is now almost noon and Boo is still sleeping. I gave him his morning meds, which he took and then went back to sleep. I am drinking coffee black and doing copious amounts of laundry. We used up all our sheets and towels last night. We are slightly bumping up Boo’s anti-seizure medicine. I have the feeling he was really dehydrated and his new med, though I love it, was just not quite strong enough.

Yesterday was such a whirl wind. We started out having such a good day. He was happy, attentive and having the time of his life. After the first seizure he seemed to be zig zagging back to normal. After the second seizure and subsequent vomiting, it was clear he was really and truly ill. Epilepsy never lets you let your guard down. She is always there. We have had good long runs without seizures, and then we have had some truly terrifying moments. I am hoping and praying for a quiet weekend and that Boo can hop on his beloved bus first thing on Tuesday morning. Send us some good vibes please. He is still feeling a bit wobbly. Be good humans, and we will talk soon,

Hugs?

Boo is continuing to astonish me. He has started tapping into not only his emotions, but mine as well. Since Max has passed and Mouse has gone off to college, he has been saying he is sad. He will tell me he is happy about a trip to Taco Bell, but then will also tell me he is sad. We FaceTimed with Mouse last night and he said that made him happy. Today he really surprised me. We were in the car, and he was chatting with Sam, not saying anything too important. Suddenly, he said, “You need a hug.” I looked at him. He looked at me. I said, “You are right. I do need a hug!” The miracle did not stop there, he leaned over and gave me a hug. For the next few blocks that I drove he kept a hand on my arm, patting me as if to say, “It will be okay”. I am floored by all of this. Boo has never offered anyone a hug. Boo does not usually like to hug! One of the things I struggle with as an autistic woman is being in touch with my feelings and really knowing how I feel. What I struggle with even more is knowing what other people might be feeling. I have a terrible time reading facial expressions or emotions. In this case, Boo is light years ahead of me. He able to tell me is he is happy, sad, uncomfortable, etc. He is also able to pick up on my emotions and know when I need a hug or some human contact.

I have known I am autistic for 5 years. Emotions still baffle me, mine or those of anyone else. I have worked long and hard on this in therapy. Boo has only really been able to speak in the last year or so, yet he is keying off of his emotions and those of others and expressing them. This reinforces the fact that if you know one autistic, you know one autistic. We all are different. We all have varying strengths and weaknesses. I am so excited as Boo moves into this new school year without the brain fog that his Topomax caused. He is alert, interactive, and a heck of a lot of fun! He is also gaining an appetite and some body mass. I want his teachers to see the miracles that I am seeing. I have had the best time this summer doing things with him. He loves to ride his bike or go for long walks. He loves rides in the car. Being curled up on the couch in a pile of dogs is his happy place. He has a keen sense of the absurd and loves to laugh. It will be bittersweet for me when he hops on the bus Tuesday morning, leaving me for other adventures. Go forth, Boo, and conquer the world. Mom loves you.

Farewell, Max

On August 18th, our family said farewell to our furry friend Max. He danced into our lives in 2011, a foster failure from the time he set foot in our house. I knew, and he knew, that he was here to stay. He was my best buddy. When Rosie passed, Max grieved. He would come and wake me up in the middle of the night, put his nose in my ear and sigh deeply. We would chat for a long time and then he would eventually go back to bed. He seemed to like these late-night chats and continued to do it for many years.

Max loved his meals and instinctively knew when it was breakfast and dinner time. He had a certain dance that he did for each meal. Dinner was at 5 pm every day. Sometimes, he would start dancing at 4pm, just out of general excitement.

For years Max was my running buddy and the neighborhood cleanup dog. He would find food and carry it home in his mouth. One time he found an entire French baguette that was bigger than his head. He ran 3 miles with it clenched between his jaws, took it home to the backyard and devoured it. Even when he got too old to comfortably run, up until his last few weeks of life, Max loved to go for walks. He would happily sniff his way along and check out all the pee mail.

Max lived his life to the fullest up until the end, when the cancer got too strong, and then we peacefully sent him on his way to join Rosie at the Rainbow Bridge. I miss him deeply every day. We got the sweetest card from his vet clinic. It was obvious he was known and loved there. Tomorrow, I will go pick up his ashes and bring him home for the last time. Hugs your dogs a little closer. They are our best friends. I could not have asked for a more loving companion. Go run free with Rosie, my pal, and I will see you on the flip side.

Seeing and Communicating

Mr. Boo is a happy fellow these days. Sam came back last Sunday, and he has been chatting up a storm. Two days after that, his new glasses arrived. Suddenly, the world is sharp and in focus. He now can see and communicate. Life is much better. He has been asking for lots of trips to Taco Bell, as well as for walks around the neighborhood. Though I keep telling him his sister is about to leave for college and he won’t see her until Thanksgiving, I don’t know if it has sunk in. I don’t know if it has really sunk in for the rest of us either. She takes off for parts south on Sunday. Right now, she is soaking up her last few days with good friends, some of whom have been friends since birth, and packing. Boo watches all of this but has not commented. He has her picture on his AAC. Maybe he will ask for her, maybe he won’t. We will try some facetime communication and see what he thinks.

In the animal realm, all is calm at the moment. Jack Jack has recovered from his dietary indiscretion and has bounced back to normal. I have no idea what it was that he ate, but I am certain he would do it again. Gloria is happy to have her brother back and is bossing him around. Max, despite his angiosarcoma, seems fairly stable. He does not know that he has cancer. He still dances for his meals, plunges his snout under my arm for pets, and dozes in his favorite rays of sunshine. We will take each day as it comes and enjoy him until the last. He does not seem ready to go join Rosie at the Bridge, so he can stay with me as long as he likes. Stevie takes all of this in stride. He heavily relies on the other dogs to tell him what to do, so he is just happy in their presence. Currently, Catherine is running on her wheel and Anastasia is under my arm, scratching in her favorite blanket. Life, after a week of almost total insanity, is calm, and I am grateful. Though it is still hot outside, there are signs that fall is coming. Target has all their back-to-school items on sale. Mercury is busy packing for college. I am getting notices about Boo’s school for upcoming events. This is truly a season of change. Boo, Mercury, the pets and I all wish you a peaceful season, and if you see us out and about, give us a wave or a thumbs up. Peace.

Mute No More!

To my incredible relief and Boo’s great joy, Sam arrived via Fed Ex yesterday morning. I had to restrain myself from hugging and kissing the delivery man. Instead, I just signed for the package and ran inside to find Boo. When he saw Sam his face lit up. He grabbed the device and began happily chatting about a number of things, a trip to Taco Bell, the weather, how he was feeling, etc. Apparently, he had a lot to get out. Last night he slept well and deeply for the first time in a while. We have almost titrated down off the Topomax and are on Fycompa for seizures. So far, so good.

This will be a brief update as I have 2 sick dogs. Max has a mass on his spleen. As I type, his vet is trying to find a surgeon who will remove it. Jack Jack ate something he shouldn’t have and is in the animal hospital. Nothing is blocking his stomach, though there was something in there earlier. He is, however, refusing to eat. The vet wanted to run some blood tests to rule out anything like pancreatitis. So, this is an expensive and tiring week for pets. At this time next week, Mercury will be moving into her new abode at Oklahoma State University. We are busily scurrying around getting her ready to go and she is having last minute visit with local friends.

Boo, Sam, and I hope you all are well. Please send out some good vibes for my dogs. Peace, and we will talk soon.

Mute

Mr. Boo has a sad. Sam, his trusty AAC, is back in the shop for repairs. A loaner AAC has yet to be sent to us. The company promised one in 5 working days. I asked them to put a rush on the order as Boo is mute and miserable. They said they would do our best. Today is day 6 without Sam, and he is doing okay, but can’t really communicate.

Thursday, we met with his wonderful neurologist, Dr. Feyma. He agreed the Topomax was not doing Boo any favors and gave us some different options for alternative anti epilepsy meds. We started one of those meds last night. So far, so good. We also discovered that Boo has a mild case of scoliosis. We are doing a sedated MRI to look for more details in September. Right now, there is no reason to get in touch with orthopedics.

Boo got off the bus yesterday without his glasses. Great, now the poor kid can’t communicate or see straight. I sent emails to his bus aid and teacher hoping to track down the glasses. He does have a backup pair, but he does not like to use them. If we are really lucky, both the glasses and the loaner AAC will show up today. He has been a terrific sport about the whole thing, but it must be hard not being able to see clearly or to communicate. So, if you see Boo, or anyone else out who is having a tough day, give them a smile and some grace. Everyone is fighting some sort of battle. Please be kind.

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