Midwest Special Services

Boo Bear and I had the best morning. We visited Midwest Special Services, a day program for adults with disabilities. From the start, we both loved it. The vibe, as soon as you walk into the door, is the same vibe we always have gotten from his schools, Bridge View and Focus Beyond. The building is large and airy. There is an art studio, a boxing gym, a place for karate, and lots of breakout rooms for music, work, socializing, etc. All the clients we met were eager to meet Boo and wanted to chat with him. Most of them have been attending MSS for years, if not decades. His tuition would be covered by the CADI waiver. Transportation would be covered by Metro Mobility. Boo used Sam to greet people and to say that he liked it there. He also appropriately said goodbye and that he was ready for lunch.

I am waiting to hear what the wait list is for a place like this. Fortunately, we applied 8 months in advance of when we would like Boo to attend there. Best case scenario, Boo would graduate from Focus Beyond in June, have a couple of weeks off to relax, and then begin at MSS in July, when his new CADI waiver kicks in. Some of the places I have visited were really depressing, they seem more like warehouses for adults with disabilities than a place where they are really cared for and challenged to be the best that they can be. I would never put Boo into such a program. I would keep him home and figure out a program of my own.

Currently, both Boo and Robert are a bit under the weather. Neither one has covid. Robert has a yucky cold and Boo just seems really tired and does not want to eat. Since he is not eating, he is very low energy. So, right now I am just trying to keep him hydrated. He seems happy enough, very smiley, just rather floppy. The dogs are thrilled that they can camp out of his bed. Not a bad choice for a cold November day. If he perks up by tonight, we have an adaptive music class sponsored by parks and recreation. If he does not perk up, we will stay home and relax. November is Epilepsy Awareness Month. Boo celebrated this by being a month seizure free. What a good way to celebrate!

I hope you all had a wonderful Thanksgiving. I hope you all stay healthy and warm. Be good humans. Peace.

Sam Speaks

Boo has had a good few days, though is a bit tired from all the festivities. He did enjoy Thanksgiving a lot. He bopped in and out of his room to sample all the food, make his presence known, and then would retreat to the sanctuary of his little den. The day before break, I got the sweetest note from teacher Rosalind. She wrote, “If Boo is not hungry when he gets home today it is because he had a great big lunch! He was still hungry after his first chicken leg and he went to the cafeteria staff and used his Sam to say ‘I AM HUNGRY’. They gave him two more chicken legs. Then we had a late afternoon feast, and he previewed the best of Thanksgiving. He loved the Children’s Theater performance today. Happy Thanksgiving. Wishing you a wonderful weekend. May you all be well and have a wonderful time together.” I am so happy Rosalind is his teacher and that she shares with us what is going on in his day-to-day life when he is away from me. Rosalind, and all the wonderful teachers at Bridge View School and Focus Beyond are why we need to pay teachers and paraprofessionals a better wage.

Today he was out with Peter and got pizza at Carbone’s. He is now happily tucked up in his room, chatting with Sam and watching Sid the Science Kid on his iPad. Tomorrow, we go to visit Midwest Special Services, to see if this would be a good fit for him next year. In the evening, we are going to a parks and recreation music class and sing along. We are looking forward to both.

Yesterday, he had a Special Olympics pizza party to celebrate the end of the season. When he woke up his eyes were not tracking well and he seemed very, very tired. He enjoyed the pizza party and the bowling after but was not at all interested in food. He was acting like he does after he has a seizure, but neither Robert nor I saw or heard him go into one. Usually, he lets out a loud moan before a seizure begins. Though I have a baby monitor in his room, I did not hear any sounds from him all that night. I suppose it is possible that he had a small seizure in his sleep, and I just did not hear anything. To my relief, he seems perky and back to normal today.

I hope you all had a wonderful Thanksgiving. Wishing you a blessed and contemplative Advent. Be good humans. Peace.

Thankful

Hello, friends. This fall Boo Bear joined the South Region Stars Special Olympics bowling team. Unlike the team he was on in the past, this is a team of all adults, much of them much older than Boo. From the start, he has loved it. The team is inclusive, welcoming, and enthusiastic. They practiced every Saturday morning this fall. Boo has come to love these Saturday events. We pick up his best buddy Alissa, drive to the bowling alley and spend 90 minutes rolling balls. Boo is even more happy that his daddy has joined us in these adventures and turns out to be one mean bowler. Boo uses a ramp as an assist, but has become very adept at picking up his own ball, setting it on the ramp and sending it down the chute. Over the course of three months, he has gained both strength and confidence. Bowling also comes with French Fries, other yummy snacks and lots of encouragement from fellow bowlers and their parents and house mates. After we have bowled two games, we always stop by McDonalds for more yummy treats and friendship.

Last Saturday was the state bowling meet at the local casino. This as an entirely new venue with lots of new sounds, smells, people, a new lane, a new ball, and different bowling shoes. Mr. Boo rose to the challenge. He and I bowled two games, and he earned a third-place medal. At first it did not sink in what he had done. We were standing on the podium with the two other winners and Boo was looking all around. There were lots of light and noise, people trying to get our attention and a million distractions. He was looking everywhere except at the camera or the official presenting the medals. The official hung a bronze medal around his neck and mine and shook our hands. Boo looked down at his medal and I could see a new expression cross his face. Suddenly, he understood that he was standing on this podium and receiving this medal because he had done something really hard and that was worthy of praise. A huge smile crept across his face. I have two pictures from this day that I treasure. The first picture is of Boo realizing the importance of what he had done. The second is both of us beaming at each other. If you want to take a peek at these incredible pictures, check us out on Facebook or Twitter, which many of you have. In short, it was a wonderful day. A day we will never forget.

I think that all the excitement and stimulation wore Mr. Boo out. I know that I was certainly out of spoons. It was a wonderful experience, but a lot to take in all at once. Boo was happy to go to school today, but when he got home this afternoon he crawled into bed and took a three-hour nap. I texted his teacher to see how his day had been. She said he had a good day but was very tired at the end of it. Eventually, he crawled out of bed, had some supper, and then crawled back in and resumed sleeping. I gave him his evening meds and left him to sleep it off. We have a houseful of guests coming for Thanksgiving dinner, his sister is home from college, and he needs all his energy for the upcoming days.

Unlike other seasons, the state tournament does not mark the end of bowling. For these athletes, bowling is a social occasion that they are not willing to give up, so we will continue bowling until Christmas. In the winter, athletes can ski or play floor hockey. I cannot see that Mr. Boo would really enjoy either of these sports, though he would probably like to watch. We are going to try our hands, or our feet, at snowshoeing. Later on in the new year, comes basketball and track. Boo loves to watch basketball and loves to participate in track and field. This will be a great opportunity to gain some more skills and make some more friends.

Happily, it has been over a month since Boo has had a seizure. The Fycompa seems to be doing its job. It is not without side effects, but the side effects are definitely not as harsh as some of the other drugs he has been on. I am quietly hopeful.

Thank you all for your support and following the adventures of Mr. Boo. He has had a great fall season. We hope you have a wonderful Thanksgiving with your friends, families, and loved ones. We will be in touch, and until we do, be good humans. Peace.

Sunshine and Shadows

Welcome back to the house of hedgehogs, dogs, a cat, seizures, and autism. Mr. Boo had an extra-long MEA weekend as he had a series of seizures Tuesday and night and very early Wednesday morning. The first seizure only lasted about a minute, but the one that occurred at 3 am needed rescue meds. It took him a long time to settle down after the seizure(s) at 3am. I am thankful for the wonderful on call nurses at Gillette Children’s Hospital, who can answer my questions at all hours of the day and night.

By Saturday, Boo seemed back to normal. He went to Special Olympics bowling and was totally chuffed to bowl a 96 and beat his daddy. Robert had never bowled using a ramp before, so Boo had the upper hand. Later that afternoon, we went for a walk, and then swung by Davanni’s for a drink and treats. I am thrilled that Boo can now easily walk 3 miles without needing to stop or sit down. The Topomax was good for keeping the seizures at bay, but it kept him from eating and being able to exercise. I am not certain that we have him on the right dose of Fycompa, yet, but the side effects are much less severe. We give it to him in the evening and it seems to make him a little sleepy and dizzy. He is a bit out of it when he wakes up in the morning, but this quickly passes when he sees the bus coming down the street.

He is on three different wait lists for day programs starting July of next year. So far, I have the best vibe from MSS, Midwest Special Services. They have answered all my questions and invite us to tour the facility in early November. Later in November, they have invited Boo’s entire class to come and visit, to see what life is like after graduation. Boo loves the arts, music, and dance and MSS offers this in abundance. They also do lots of trips out into the community and have opportunities for volunteer work. We are excited to go visit them in person.

I have said many times that Autism does not ruffle my feathers, but epilepsy scares the heck out of me. I can prepare for the ins and outs of Autism, but I can rarely tell when a seizure is about to strike. Interestingly, I think Mr. Boo can tell when a seizure is coming. Last Tuesday night I was out for a run. Boo was sitting on the couch with Robert. Suddenly, he got up and brought Robert his backpack. This is where we keep his emergency meds. Then, he sat back down on the couch and seemed to be waiting. About 2 minutes later he had a seizure. I think he knew he was about to seize and made sure he had his meds nearby and was close to his daddy, who could help him. The second seizure happened in his sleep, so there was no preparing for that one. I wonder if he sees an aura, like I do before I have a migraine. Several adult epileptics I have talked to say that they have an aura or a premonition before a seizure hits. I have the feeling this is the case for Mr. Boo.

Enjoy this last day of warmth. The wind has picked up and I can feel a cold front moving in. I have heard that changes in barometric pressure can cause seizure activity. It would not surprise me, but I am really hoping that Boo can have a peaceful week at school with no pesky seizures. Be good humans, and we will be in touch.

The Last Hurrah

Last Thursday was Boo’s final IEP meeting. Bug and I have been attending his IEP meetings for the past18 years. This one was very sweet. I brought in coffee and donuts to say thank you for meeting so early in the morning. Teacher Rosalind had set up a little power point presentation about Boo, his likes, his dislikes and his strengths. While she showed the slides, Boo narrated on his AAC. He was able to tell us his name, how old he was, where he went to school, and much more. He told us he loved his family and wanted to continue living with them. I was very proud of him; this was a lot of work for the big guy. Dismissed from his part of the meeting, he happily dove into the donuts.

The focus of the meeting was two part, what we wanted to work on with Boo in the coming year, and what we hoped to happen next year. His main focus of concern is using his AAC to his best ability and working on life skills. For next year, I have applied at two different adult day training programs. I have a phone interview with one of them, Phoenix Alternative, on Monday afternoon. The other option is Northeast Metro Connection. Both sound really good on paper, but it is hard to suss a place out until you actually see it. Rosalind has agreed to take us all on field trips to visit these places. She is prepping Boo to be able to ask questions and advocate for what he wants at these places.

For a long time, the idea of aging out of the system scared me. Boo has been in public school for over 18 years. He loves it, always has. But I think that good things are coming. I am exciting to see some of the programs out there. Jon Bentley, his case manager, has applied for a 30% increase in his budget to cover the cost of a program. I am hopeful that Boo can attend the program of his choice, and there is still money in the budget for me to be his paid parent PCA. The programs run about 6 hours a day, not enough time for me to get an outside job, so I want to stay committed to Boo. Also, the last few weeks have showed me again and again that I cannot work outside the home. I may be away from Boo 7 hours a day, but I am always on call, if he gets sick, has a seizure, needs me in any way. When this happens, I drop everything I am doing and go pick him up. There are always numerous doctor and therapy appointments we attend, that would make working outside the home completely unreasonable. Someone asked me recently if my working conditions make me feel trapped. The answer is simple, no, not at all. I love Boo like life itself and helping his live his best life is all I want to do.

Right now, I am happy. I have coffee and sunshine. I am in my favorite chair. The dogs are sprawled at my feet. The cat is eating. Boo woke up at 3 am, wanted a drink, and then returned to bed and has yet to make a peep. Thank you to all my readers who have checked in over the past couple of weeks. It has been a wild ride, and it is good to know that we are not alone. Please continue to follow Boo in his last year of public school and the adventure that continue beyond. Peace out and be good humans.

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,

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