My life with the Sullivan boys

What a year it's been, each month giving us new challenges, new joys and new heartaches. January: 5 months pregnant, I jetted off to visit my brother in LA for the weekend, only to return and rushing to the hospital to be with Dermot as he suffered an awlful bout of RSV and pneumonia. Six nights later he came home, I swear he's different. No longer able to suck his thumb and drink efficiently out of a bottle, Dermot left something at Children's Hospital that I wish we could have back. April: Owen turns four! Just days before I'm to deliver #3, we had a glorious time at his party. All his friends and classmates joined him at Pump it Up! Yipee! May: Ryan Joseph Sullivan joins our family after a day and a half of labor, one push is all it took! What a blessing! So begins the battle for sleep. August: Countless visits to and from family! Ryan had his first airplane ride at three months, thanks to uncle Bill! Ryan sleeps thru the night for the first time! September: Owen sta...

Someone I Love By Lori Hickman Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have. Someone I love will need unconditional love and support after I am gone - this frightens me to the core. Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others. Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world. Someone I love has needs that require more time and energy than I have to give. Someone I love ...

How did we get here? It was November 17th, 2006. Joe had left earlier that day for his annual hunting trip out to South Dakota. My brother had just arrived to drive up to my mom's place in McGregor, MN with me. I wanted a little help since I'd be with Owen who was 2-1/2 and Dermot who was almost four months. The car was packed, I was trying to calm Dermot down. He was trying to recover from a cold and was crying hard, something he did quite a bit in his first few months of life due to a case of reflux and pyloric stenosis(google it). I was struggling to get him to stop crying, and then, he stopped instantly. Whew, I thought. I set him down in the bouncy chair and finished putting everything in the car. I came back and looked over at Dermot and he was still in the exact position he was in before, I thought that was a bit odd so I went over to him. His eyes were fixed to the left side and he was pulsing his left hand and foot ever so slightly. I thought that was strange so I call...

Merriam-Webster's definition of control is as follows: 2 a: to exercise restraining or directing influence over : regulate b: to have power over : rule c: to reduce the incidence or severity of especially to innocuous levels It's funny how obsessed the world is with the illusion of control. It's funny how the quest for control can make a person insane. It's also funny how out of control we really are. I can plan for things to happen. I can make sure I have the right supplies for any situation, I can tell everyone in my life what to do, when to do it and why to do it, but inevitably they will do it the way they want to do it. Tell a four-year old how to brush his teeth and he will insist on using a different toothbrush, putting the toothpaste on himself and most likely he will go to a different bathroom to get away from me. It's maddening! Prepare yourself for the daily occurrences in life and unexpected things will always happen. As I hosted Thanksgiving dinner this...

How's the diet going? It's going pretty smoothly in the last few weeks. Dermot's partial onset seizures are gone , now we are just fighting with the Tonic seizures. He still has around twenty of those a day. If you didn't know what to look for you wouldn't notice his seizures. His left arm goes straight up, his eyes look up and his body tenses for a few seconds, then he just resumes what he's doing. The brain is an big fat mystery! Dermot's neurologist wants to try just the diet for another month, then he might want to try a different drug for the tonic seizures. I'm not for that. Apparently the most common side effect for the new medication is sleeplessness. No thank you! We've had enough of that in the last 2-1/2 years. We discovered what meals Dermot will eat and have decided to sick to them. Here's a sample of what Dermot eats each day: Breakfast: 1/3 c. of whipped cream two tsp. ground beef 1/3 slice of american cheese two Tbsp. of butter 1/...

Ryan's sitting up all by himself, I'm so proud! I was going to go into some long essay about how important milestones are and how easily they come to most babies, but I won't. I'm just happy with my little Ryan today!

So, here's something I've noticed and it's a big fear of mine. I fear that Dermot's becoming invisible. Not really, but to the outside world, to the "nice" people we meet or already know. To friends and even some family members, it seems as though he's not there. The polite look and then quick look away, the attention that gets showered to Owen and Ryan is not the same for Dermot. Why is that, I wonder. I don't really wonder. I've been there myself. I was the one who shyed away from anyone different. Not on purpose, just out of fear. Not knowing how to treat a child or what to say, do I touch him? Can they hear me? Can they see me? I'll just pretend they're invisible. We've gone to several outings, the country club, Target, the Children's Museum and so on. I've started to notice. So, I want to tell you about Dermot. Dermot is a beautiful boy. He smiles, he laughs, he screams with delight. He has more grunts and moans than most b...

A lot of people in our lives have been gracious enough to ask "Is there anything I can do for you?" Almost always my response has been: No we're fine, thanks. But that's not completely true. Growing up the way I did I learned a an early age to take care of myself, by doing everything by myself . Well in our situation with three young kids, one with special needs, I can't do everything myself. This seems a bit shameless, but what the heck. I've decided to create a list of things friends and family can do to help my family. 1. Call or e-mail us-even if we don't have time for a long conversation, a message telling us you're thinking of us really feels good. My friends Pat, Lisa and Debby have called just to let me know they're thinking of us, it's nice to have a cheering secton. 2. Bring us dinner anytime -what a huge favor, we now have a freezer in the basement that houses ready to heat meals. It saves me so much time. Thank you to Susan and Dixi...

I'm mourning the loss of some of my friends who turned into The Gingerbread Men... I've shared this reading before with friends. It still touches me and I read it often. The Mother at the Swings by Vicki Forman It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?" Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of sti...

This is a fantastic writing from a mom of a child with special needs. I warn you, it's a bit political... I know nothing about special needs. Posted 10/17/2008 3:02 AM CDT Let me repeat that, I know nothing about special needs. Yes, my son Elias has multiple disabilities that affect his balance, movement, vision, communication, and breathe, and yes I’ve immersed myself in the disability world by reading books, blogs, articles, laws, and enough bureaucratic paperwork to fill a truck, but I am merely a tourist in this world, hoping to learn the culture so I can advocate for my son. I can’t claim to be an expert. I’m not even an insider. I’m just a mom who loves her child. For McCain to say that Sarah Palin “understands special needs better than almost any American I know” just shows how out of touch he is with the disability community. Does he know anyone with special needs? Because surely they would know more about living with disabilities than the people who love them. To claim t...

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Well Dermot is eating again, hooray. He had three square meals today. He seems to be in better spirits too. In case you're wondering, this is a picture of Dermot when he was 5 months old having his first taste of rice cereal. I just thought it was cute. We also found out today that Dermot does not have any of the scary terminal genetic or mitochondrial diseases that he was tested for last month. I didn't make this news public so if I've been on edge for the last few weeks you now know why. I can stop thinking all of the morbid thoughts I was thinking and move on, for now. I also fired the nanny this week, bummer. She had a different style than I'm used to and didn't think it would work with our family. No worries, I have an interview lined up on Monday for someone new and more resumes coming in... I learned a lot from the process and must always remember that I'm a grown-up and am entitled to have things the way I want them. We redecorated the house today and I...

What a different world this would be if people would magnify their blessings the way they do their troubles.

So the new issue for us is to get Dermot to eat all of his food. I can't tell you how stressful it is to feed Dermot these days. He's sick of the whipped cream, and is only eating about half of his meals some days. I don't really know what to do. I'm calling the doctor tomorrow. He's out of the office because of a family emergency. What about my family emergency!?! I want to give up this diet. It weighs on our thoughts all the time. Although Dermot's well-being weighs on us all the time anyway. It's a constant dark cloud walking around with us... I sometimes get physically sick from the pain I feel. I run to release my worries, to relax and to forget for a little while. It works. Plus I'm back to my pre-pregnancy weight, so I've got that going for me. We'll keep plugging along, we have to. It's our 6th wedding aniversary this Sunday, I remember our wedding like it was yesterday. Wow, what a carefree life we lived. As you can tell I'm feel...

So I've been waiting to write because I want to have good news, I want to be excited and tell all of you that the diet is working and all of that crap at the hospital was worth it. It's not working. Dermot's seizures are getting more frequent everyday. I can't stand it. I want to get inside his little brain and rewire it some how. I'm not ready to give up the diet yet, There might be some fine tuning to do, we'll see. It was a bad weekend for Dermot. That equals a sad and frustrated mom. I just want the Dermot from last year back. I can't have him. I'm heartbroken. Stay tuned, I'm calling the doctor's office tomorrow to get some answers and ideas of what to do next. The scary part if the diet doesn't work is the alternative. Another new drug. I hate trying them because I get my hopes up and he changes, depending on the side effects (lethargy, irritability, sleepiness, etc.) The odds that new drugs will work decrease dramatically the more drug...

When you don't know what to talk about, try the weather. Gorgeous day today, a strong breeze and sunshine. Our family took our usual after dinner stroll thru the neighborhood, nice. Joe and I actually went out last Saturday night, I wore make-up and everything! Here's the proof: We were home by 10:30 though. We attended a benefit concert for a respite center for parents of terminally ill children and parents that have lost a child. See link: Faith's Lodge It's a sad and scary topic, but we were glad to contribute to it, Soul Asylum played. TOO LOUD! How's Dermot doing? His seizures have come back a bit. Not as much as before. The doctor warned us that there may be a "honeymoon" period when the seizures disappear, then they return. We're going to work with the dietitian to change the ratio of fat vs. carb/protein to see if that will help. Cross your fingers for us! We also just hired a part-time nanny today! Hooray! Her name in Rachel and she'll be ...

I remember the first "equipment" that Dermot's physical therapist brought into our house. It was a clunky purple chair with lots of belts and a harness. It was so Dermot could sit upright "by himself" and play. I cried when it came in. Dermot's condition was real now. He wasn't sitting in the bouncy chair made for babies 10 pounds lighter anymore. Now, I welcome the "equipment" into our house. Most of it's on loan from the school district. He has a stander to help with his hip development and a tumble form chair ( big blue, as my husband calls it ) to allow him to sit up comfortably by himself, ( he grew out of the purple chair over a year ago ) and his new "stroller" that offers him great support while being out in the world. The latest piece I just ordered is a bath chair. It's made out of PVC pipe and a blue mesh fabric. This is the first one we've had to pay for out-of-pocket. $315 for a bath chair. It got me thinking....

Holy cow, Ryan is 4-1/2 months old and weighs 19.65 lbs. That's bigger than both his brothers at the same age. I think my muscles are in trouble. Ryan's check-up went great. "He's perfect" said the doctor. Whew.

This seems to give a good explanation of Dermot’s new diet. So far so good, Dermot’s seizures are few and far between now. He has about 3-4 a day instead of 30. Keep praying for him, it’s working! We still can change the ratio of fat/carbs & protein to fine tune the diet… Link to keto diet http://brainblogger.com/2008/09/05/when-alternative-isnt-anymore/

Dermot's home! We brought him home this afternoon, he's doing great!

Little boy Ryan tried rice cereal for the first time tonight. He gobbled it right up. He opened his mouth for every spoonful and ate the whole serving. My mom swears that it will help him sleep thru the night. I'll keep you posted on that.

Well, today was much better. Dermot slept thru the night and woke up looking much better. He was talking a lot today, I got a mat and stretched him out and did some sit-ups. Then the therapy dog Buddy came to visit. He's a little Welsh Corgi. What a nice surprise to have a dog at the hospital, the kids seemed to really enjoy him. Dermot also played for a while. The ward has a chair just like the blue one we have at home, so Dermot could sit and play. We read some books that our friend Lisa dropped by and we sang for a while too. The doctor wanted to see how his system responds to the Bicitra medication before letting him come home. I'll feel better when I know it's working. So we will most likely bring Dermot home early Sunday afternoon. I just returned from the grocery store with all the new foods on Dermot's menus: mayonaise, heavy whipping cream, butter, cheese, etc...Weird huh? We've seen some promising results as far as seizure activity goes, they've been r...

Yesterday: yuk. Dermot was suffering from acidosis-too ketotic. He was lacking in CO2 in his blood which made him lethargic, irritable and worst of all, not hungry or thirsty. The doctor said push the fluids and gave him a medication to correct the imbalance. He had a full night's sleep and looked a little better this morning. After good lab results this morning Dermot had a decent breakfast of applesauce and eggs with cheese, cream and a lot of butter, ummm. He ate all of his lunch too. I think he's getting better, it hasn't helped that he brought Owen's cold with him. The doctor said he may be able to come home tomorrow or Saturday at the very latest. I thank my many visitors for their company and food, it makes me feel stronger when I have good friends around to support us. It's an interesting place, the pediatric epilepsy ward, most kids have helmets on and are hooked up to EEG machines. The kids are connected to long cords so they can move around outside of the...

Okay, second day of the Ketogenic diet and Dermot's hospital stay: the first day went good, he fasted for only 20 hours and they determined he was ready to begin eating his new food. His first meal: about a tablespoon of pureed chicken, a pat of butter, 2 oz. of whipping cream and a 1/3 of a banana. Not much. Of course he ate it all, but was upset when that's all we could give him. The first three meals are about a third of what his regular portions will be, his next three meals will be 2/3 of is full portions, then after that he'll be able to eat his full carolic intake of 1050 calories a day. Today was harder than yesterday. Dermot woke this morning to a needle in his arm to get blood to check his labs. They discovered that he was becoming dehydrated so they wanted to put in an I.V., I strongly objected, but after a few tears and some heated discussions with the nurse and the dietian I agreed to the I.V. They said it's common for kids to become dehydrated while switch...

Tomorrow's the big day. 5-9 days in the hospital (Children's St. Paul) to start the Ketogenic Diet. Joe and I will take turns spending the night, yipee. I just hope we don't have a loud roommate or any roommate. The first two days Dermot will fast, yuk. While he's busy doing that, Joe and I will get educated by the dietian on how to prepare and feed Dermot his new food. Today I got a head start and gave him whipped cream and scrambled eggs with butter for breakfast. I think I might end up gaining some weight from tasting the whipped cream for every meal. We'll sweeten it with Stevia, a natural sweetener, it works great. If you're looking for something to do, please feel free to call us on our cell phones, offer to bring us lunch or dinner, or just stop by and visit..it will make the time go by a lot quicker. I have the latest issues of People and Us waiting to be read, plus a few books I haven't been able to finish. I hope Dermot gets through the first pa...

He bounces, first time in the Johnny jump up! What a cutie...

Owen had his first day of Pre-K today. He'll go Monday thru Thursday mornings. He was a bit shy when I dropped him off, which is a bit strange for him. But when I picked him up he was all smiles and made a few new friends.

Today Dermot had his MRI and his blood drawn for some genetic tests. He did great, 90 minutes later he woke up shivering from the anesthesia, hungry and happy. Later that same day, Dermot's new "stroller" arrived. We've been looking forward to and dreading the arrival of Dermot's new "mobility device". It will allow him to be MUCH more supported while sitting, thus more engaged with his environment. It's a little scary because I'm sure we'll get "the stare" a little more than we do now, but I'm learning to get used to it. Today was also the last day for Aunt Mary and Aunt Susan to stay with us. Everyone appreciated their visit. They made a few dinners for us and watched the boys more than once. What a helpful and enjoyable visit! Next week is Dermot will start the ketogenic diet. We'll be admitted to the epilepsy ward at Children's St. Paul on Monday and have been told we'll be there 5-9 days. Here's a link to mo...

Busy Weekend...Owen, Joe, Sue, Katy and Aunt Susan went to the fair again on Saturday, lots of people, wow! Sunday: Went to the pool and celebrated Aunt Katy's 30th birthday! No pictures! I forgot my camera at home...

Dermot went to the eye doctor today. She discovered that Dermot has mild cortical vision impairment. See link for more info: http://www.ohiolionseyeresearch.com/cortical_visual_impairment.htm He got these really cool glasses, Owen was really jealous!

Took the whole family to the State Fair today. Aunt Katy joined us too! Perfect weather!

What a joy. Ryan Sullivan is a spitfire. at three and a half months he sleeps thru the night, has rolled over and wants to be a part of everything! God bless him.

My beautiful Dermot. This summer has been tough for him. His seizure disorder continues and so does our journey with doctors, therapies and drugs. At one time this summer Dermot was on 4 different medications all at once, not surprisingly he turned into a lethargic blob. We said enough, he's now on two medications and is being slowly weaned off one of them, Klonopin. In case you've never heard of it, it's in the barbituate family of drugs, we didn't realize 18 months ago what exactly it was when we agreed to give it to him. Our hope is that he'll continue to be less drowsy, drooly and floopy as we wean him from it. Dermot has been very busy with appointments this summer. Along with the two weekly physical therapies and occupational therapy, I have taken him to see a chiroprator, an herbalist and a physiatrist. In the coming weeks he will go to the opthamologist, have an MRI and a few blood tests to check for genetic disorders. I started to get more active in his hea...

So I haven't written in over a year. I've had another beautiful boy. Ryan is his name. He was born May 2, 2008. We are just coming up for air, now that everyone finally sleeps thru the night. I think that I will use this site as a way to update friends and family on our life's pleasures and struggles... Please visit when you can and ask many questions if I'm not explaining things enough.