Tuesday, December 30, 2008

Year end.

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 starts pre-k, quickly makes friends with lots of great kids. Dermot gets admitted to begin the Ketogenic Diet. It's not as smooth as we'd hoped, but by the end of the month he's found a groove...

October: Trick or Treat! Owen speeds thru the neighborhood as a NASCAR driver, cleans up with a full pumpkin of candy, which I make him share with me!

November: I hosted Thanksgiving, with a little help from everyone. That was my favorite holiday!

December: Christmas has come and gone, plans changed at the last minute and most everyone celebrated with us in Minneapolis. What a blessing that turned out to be! Cousins were here to play with my boys, sledding and ice skating, it was a great time.

I'm having a hard time believing 2008 is over. Weird.

I have to say, I'm especially grateful for the outpouring of help and concern from our friends and family. It's touched me in ways I won't ever be able to tell you personally. I have made some connections with some fantastic ladies this year, from my Wednesday Group, my parent support group and my parenting class. I'm glad to know all of you!

As we approach 2009, there are a lot of unanswered questions regarding Dermot's condition. We are waiting for more test results from Mayo late this month. We are due for a round of appointments this month. The neurologist and the phyisatrist. Dermot also starts a transition class at Edina special ed one day a week. Plus for the next eight weeks he'll be getting hyperbaric oxygen treatments everyday for and hour each time.

I'll update these as they occur. Until then, thank you for being in our lives and have a happy and healthy new year!

Saturday, December 20, 2008

Someone I love

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 has needs that mean I am not able to meet basic needs of my own. Someone I love has needs that have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be able to describe. Someone I love has taught me about love and about the really important things in life...

© Copyright 2000 Lori Hickman. Originally published as the dedication to Living in My Skin, The Insider's View of Life With a Special Needs Child by Lori Hickman. Reprinted with permission of the author, all rights reserved.

Wednesday, December 3, 2008

Dermot's story...




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 called the doctor's office and told them what Dermot was doing, she told me a nurse would call me back...in the meantime, I asked my brother to come look at him, we brought him upstairs to his room, I undressed him and noticed his back muscles on the left side were very tense. I was really worried now, 10 minutes had gone by, I called the doctor's office and told them I was bringing him in.

I got him in immediately. Dr. Cantor looked at him for a second and asked if his staff had told me to bring him here. I said I was waiting for a phone call back. He told me that Dermot was having a seizure and that an ambulance was on it's way to take him to Children's Hospital. They scrambled to find oxygen and some Diastat (rectal Valium) to stop the seizure. They were out of the Diastat. All the while I managed to stay pretty calm. It hadn't sunk in yet.

The EMT's arrived, they literally grabbed Dermot and ran him out to the ambulance, half dressed on Hennepin Avenue on a cold November day. I followed behind and buckled myself in beside him in the ambulance. The lights and sirens were blaring. It was starting to sink in.

We arrived at the emergency room, they wheeled him away to a trauma room and started to work on him. They stripped his clothes off, administered Atavan and another mediation to try a stop the seizure then they intabated him. It was like an episode of ER. I was told to stand back, as I listened to some of the ER nurses joke about the "fish lips" they gave him with the tape that held the tube in his mouth. I remember reminding them that he was my child and that I could hear them. They stopped laughing.

There were about 15 different medical professionals working on Dermot, I was sitting in the corner, alone, holding Dermot's onesie. It sunk in. I needed someone. Joe was out of cell phone range, all his friends were in South Dakota already, except one. I called and got a hold of Alan. He said he'd try his best to find him. In the meantime, I called my dad to be with me, to hold me up.

The seizure lasted for over 2-1/2 hours.

They'd managed to stop the seizure with medication, but they had to intibate him because the meds didn't allow to breathe on his own. After an MRI and a CAT Scan he was sent to PICU. I remember passing my friend Shannon, who works as a nurse in the PICU, I was comforted by her face. They did a spinal tap and then left him to be monitored.

Joe finally got word about what had happened and was racing back to Minneapolis. He was four hours away.

Dermot was in the PICU for 24 hours and the regular ward for another two days, he had an EEG and it was inconclusive. The doctor decided is was a febrile seizure because he was getting over a cold (although he wasn't running a temperature).

We went home three days later. As far as we new, Dermot was okay. He was put of Dilantin as a precautionary measure. All was good for about a month...

Right before Christmas time I had started to notice a little facial tick in Dermot. I called the doctor, he told me to up the dose of Dilantin and call me after the weekend. No change, the doctor still hasn't called be back...

We were referred to another neurologist, as the facial tick was getting more noticeable. He scheduled us for a 24 hour video EEG. It was in early January 2006. We waited and the day came to bring Dermot to the pediatric epilepsy ward at St. Paul Children's. I remember feeling terrified by what I saw. At least five or six kids with helmets on and wired up to monitors all sitting in the main area. I was not prepared for any of this. I wanted out. My baby wasn't like these poor kids.

They applied 20+ probes to Dermot's head (all the while, he's screaming). They use this really smelly glue and have this loud dryer to make sure the probes don't fall off. Then we wait, they record his brain activity for 24 hours.

The next morning Dr. Ritter arrives in the ward and we wait to see him. We waited a good four hours...he asked us to come into his office with his assistant. The nurses will hold Dermot for us. He told us the Dermot's brain activity was abnormal. (It hadn't sunk in yet...) We asked questions, I don't remember what they were. I remember Joe asking what the worst case scenario would be for Dermot, he said Dermot would be wheel-chair bound for the rest of his life. Joe lost it, I felt something come over me to hold my composure. I asked a few more questions, I don't remember what they were...our 7-month old son, wasn't going to be like everyone else. (It still hadn't sunk in) I didn't cry, I was numb...it would be months before I could feel the grief.

Since that day, the day my life changed forever, we've had countless tests and seen countless specialists. We went to the Mayo Clinic. We have yet to receive a diagnosis for Dermot. He has epilepsy, but all that means is that he's had more than one seizure in his life and he has global developmental delays.

We are returning to the Mayo Clinic this coming Wednesday for a follow-up visit. The doctor will decide if he qualifies for any additional tests because his symptoms have changed since she last saw him 18 months ago.

To be continued...

Friday, November 28, 2008

Control

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 year I was very conscious of every one's need for a taste of control, I was okay with it. The saying "too many cooks in the kitchen", I'm not so sure. I made the turkey and stuffing, others brought a dish or two of their liking and poof!, a beautiful feast was created by everyone in attendance. I am thankful for my ability to give up control of everything.

I've been letting go of my desperate need to control my life. I realize that it's a symptom of a greater need, to feel safe and sane. Fear does funny things to a person's character, but that's an entirely different topic.

Dermot has been waking up in the wee hours of the morning crying like crazy. It's the same time every night. We pick him up, bring him downstairs, wrap him in his favorite soft blanket and hold him for as long as it takes for him to fall asleep again. We don't know why he does this, all I know if that if I hold him tight he'll stop crying. He's changing again, it scares me. My challenge is to not have my fear turn me into a control freak again.

I have a prayer that a good friend shared with me.
I read it everyday at least once:

GOOD MORNING,
THIS IS GOD.
I WILL BE HANDLING ALL
YOUR PROBLEMS TODAY.
I WILL NOT NEED
YOUR HELP SO
HAVE A GOOD DAY.

Tuesday, November 25, 2008

Keto diet

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
1/4 c. of peaches

Lunch:

1/3 c. of whipped cream
two tsp. chicken breast
two tsp. green beans
two Tbsp. of butter
1/6 c. of applesauce

Dinner:

1/3 c. of whipped cream
one Tbsp. ground beef
1/4 c. peas
two Tbsp. of butter

Sound good?

Monday, November 17, 2008

Milestones



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!

Tuesday, November 11, 2008

Invisible?


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 babies have, and I can understand most of them. He shakes his head no when he's all done with something, he calls out for attention when he wants to play, and he whines when he's sleepy or sick. Dermot thrives off of human interaction. He loves being talked to. We're not sure what he can see because of his vision impairment, but the moment you come down to his level and say hello, he knows you're there. He doesn't have sensory issues, so grab his hand when you say hello. He loves when our house is at it's most chaotic. He loves listening to the dogs wrestling and barking, he giggles when Ryan is crying close by and loves when big brother Owen screeches and howls for him.

He's not mobile, he can't sit up on his own or crawl. He hangs out in "big Blue" a Tumble Form chair or on the floor or in his stander (3 x's a day). Or the "stroller" when we're out and about. He can't walk up to you and get your attention, he needs you to come to him, he needs you to say hello. I need you to say hello. He's my son and I love him with all that I am, he's your grandson, your cousin, your nephew, he's not invisible.

Tuesday, October 28, 2008

Is there anything I can do?


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 Dixie for helping us stock the new freezer this summer...

3. Offer to have Owen over for a playdate sometime-With three kids it's hard to get around for activites without help, but with Dermot it's even harder. His special stroller is 50 lbs. and he's 31 lbs. so it tend to be too much heavy lifting for a trip to the library or a museum...I feel bad that Owen just hangs out around the house most afternoons, he'd love a change of pace. I'd call you but it's bad manners to invite my son over to your house, right?

4. Ask questions-We get the "How's Dermot?" question daily, we have a standard answer of "He's doing okay, I guess". Sometimes it's better to get specific. What's your life like now? How are you handling all the stress? How about them Twins?

5. Remember who we were before all of this and remind us-Sometimes I get so wrapped up in the sorrow and pain the comes with a special needs child, that I don't want to go out, I don't want to try new things or meet new people, it's like a black hole...

6. Read the blog-it's so nice to talk to you and find out you've read this, then I don't have to explain what's going on over and over again.

To be Continued...

Monday, October 27, 2008

The Gingerbread men

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 stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.

I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.

"He really loves to go high," the mother at the swings says. "He's not afraid at all."

"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."

"Well, he must have other ways of knowing," she says. "Because he definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open." I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.

I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.

The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?

She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.

~

It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.

It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.

Sunday, October 19, 2008

I know nothing about special needs


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 that a new mother of a child with Down syndrome knows more about special needs than any other American is an insult to the hundreds of thousands of people who every day face the barriers of an able-bodied world. Or who despite cognitive differences go on to earn a Phd. Or who play ice hockey without full sight or compose music they can’t hear. Or…

…the list goes on.


And what about the writers, speakers, advocates, and organizers who fought for the Individuals with Disabilities Education Act or the American with Disabilities Act?

I think they know a little more about special needs than a governor whose only disability related act was to cut funds to programs that support people with needs. Who sat across the table from me and a roomful of people with autism, Down syndrome, cerebral palsy, vision loss, and other disabilities, as well as the people who love them and work for them, and smiled as she listened to our stories but failed to grant the Key Campaign the funds we requested to increase community services and research.

And now she has her baby Trig.

You’ve probably seen him on the national news. He’s cute huh? I cried when they showed his sister Piper licking her fingers and smoothing his soft baby hair. I’d like to see more children with disabilities on TV.

But not as political pawns used to pull heartstrings.

We’d see more children with Down syndrome, if 9 out of 10 women didn’t choose to abort their babies after receiving the invitro diagnosis.

That’s 90 percent. 90 percent.

If McCain and Palin override Rowe vs. Wade, while simultaneously enacting a spending freeze, how would these all these Ds babies receive services?

And believe me I want Trig to have more peers, but they won’t all be born into families with the means to hire caregivers and privately pay for therapy, medical appointments, and brain-building sensory toys.

And what about the autism epidemic that McCain claims Palin also knows all about?

Sure she has a nephew with Autism and cousins on the spectrum but, again. this does not make her an expert. I have a cousin whose gay but I can’t claim to speak fro the GLBTQ community.

I know a little bit about cerebral palsy, visual impairment, and cognitive delay from my son. Enough to fill a story or too but I couldn’t come close to finishing a book, let alone claim to know enough about any of these diagnosis to know what is best for other children who experience their own unique versions of symptoms, impairments, and skills.

Just because I can play soccer and ice hockey does not mean I can play basketball or golf. And don’t even think about getting me to do the long jump.

I got no jump.

And I guess this is what also struck me about McCain’s comments, as if he could sweep whole populations of people into the idyllic face of baby Trig.

As if Sarah Palin has even had time over the past six months to immerse herself in the world of special needs, while also campaigning for the Vice Presidency. She may be smart, motivated, and gutsy but she’s undergoing a crash course in foreign policy, media relations, debate training, and Washington politics, not Medicaid, therapy, disability law, and advocacy.

And she hasn’t even gotten to IEPs.

Or stood next to her comprehending son as she wrestled with how to answer a curious neighborhood kid’s question, “What’s wrong with him?’

Trig is still a baby and everybody loves babies-- especially when they don’t come attached to an oxygen tank or a feeding tube or startle the cooer with an obvious deformity on their hands or face.


I do not mean to underestimate the profound affect of having a child born with a diagnosis, but right now he is not a whole lot different than other babies. Sure his features may reveal his chromosomal differences but what he needs right now is sleep, milk, snuggles and fresh diapers.

Like most babies.

Even after 94 days in the NICU, multiple surgeries, and medical data that practically guaranteed Elias would have special needs I didn’t really understand what that meant when Elias was still spending the bulk of his time nursing and sleeping.

Sure we had a lot more professionals involved in our life than most new families and we had a portable oxygen tank in our living room, and a variety of unpronounceable medications to dole out, but I still didn’t really get it.

I still don’t.

Even now, with multiple diagnoses, I still hold onto a vision of Elias being “normal” one day.

I can still separate myself from my son and walk unencumbered away from the world of special needs.

I won’t.

But I can.

And that’s what separates me from Elias, and every individual who lives with special needs, and it’s why those of us with full capabilities cannot claim to be experts.

Its why we need to listen to those who truly understand because they live it, and can’t be fooled by political rhetoric to believe that substance follows their fashionable claims.

Thursday, October 9, 2008

Whew!



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'm up way too late trying to finish the new arrangement. I can never sleep when something half finished.

Good Night!

Tuesday, October 7, 2008

A thought

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

Sunday, October 5, 2008

Eat!

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 feeling a little blue tonight, when that happens I always think about when life was easier, normal. Tomorrow's a new day.

I appreciate everyone's interest and support, I'm blessed with good friends and family.

One day at a time.

Sunday, September 28, 2008

Powerless

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 drugs you try. So the theme for this message is: powerless. I have to wait and see. Your thoughts and prayers are needed, I need your strength.

more later...

Monday, September 22, 2008

First day of fall.

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 working with us Mondays, Wednesdays and Fridays. She'll start next week. She's a student at the U of M and has a lot of previous nanny experience. She did admit that she doesn't have any experience with special needs children, but told us she's ready and eager to learn. And teach her we shall. She'll be here for Dermot's OT and PT appointments. I'm so relieved we found someone we like. It will make our lives a ton less stressful.

Owen is doing great at his new class, he talks about all of the new friends he's meeting there, him and two of his friends even got in trouble for writing all over his face with a marker last week. Funny.

Thursday, September 18, 2008

Equipment

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. What do parents do that can't afford $300 for a bath chair? Or even the $250 co-pay we paid for the stroller that usually costs $3000?
I am a fan of the TV show Extreme Home Makeover. They are always giving new homes to less advantaged people. Most of the families have kids with disabilites and they set them up with thousands of dollars worth of equipment to make their lives with their children just a little bit easier. Stay tuned, I'm going to find a way to help these families too.

I have a nickname "stroller queen" because I have bought and tried so many different brands of strollers I could run a store. I had a reason for my purchases. I was always searching for the perfect stroller for Dermot to be comfortable in and to make my life easier. I wanted to be able to stay mobile with all the kids, I wanted to still look like a "normal" mom with my kids. Well, I have given up my stroller ways, because I discovered that Dermot is happiest riding in his "Equipment", my only regret is that they don't make a double so I can roll Ryan around too. So for the near future, you'll see me walking with Dermot in his stroller and Ryan in the Bjorn. Ryan better learn to walk soon, because he's getting really heavy in his carrier.

Big guy!


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.

The new diet

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/

Sunday, September 14, 2008

Saturday, September 13, 2008

Rice, rice baby!


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.

Maybe tomorrow

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 reduced dramatically so far. We're keeping our fingers crossed.

Thursday, September 11, 2008

Almost done?

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 their rooms. They have a play room, a television, a computer and the most popular item is the Wii. The kids range in ages from 4 months to 19 years, girls and boys. They are from Wisconsin, Iowa, North Dakota, and Central America. Some are trying new drugs, some are gearing up for brain surgery and some are being monitored to record seizure activity. All the parents are searching for answers, just like us.

I'll keep you posted...

Tuesday, September 9, 2008

Progress

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 switching over to the diet because it's such a shock to his system. Bummer. Then the physical therapist showed up and started working with Dermot, but Dermot said NO WAY and wanted some big hugs from mom and dad to settle him down. I was so encouraged by his first day I thought the rest would be smooth sailing, not so. I just have to remember what a shock this is to his body.

Next up, continue monitoring his blood sugar and ketone levels and continue the meals. By Wednesday night he should be able to eat a full size portion for dinner.

Thanks for everyone's well wishes, I REALLY appreciate it!

One day at a time...

Sunday, September 7, 2008

The hospital

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 part of this process okay. The book tells me that after we're released it may take a few weeks to fine tune the diet for optimum seizure control. I'm just worried that he won't eat the food because it's so different from what he's eating now.

Let go and Let God.

I'll keep you posted.

Saturday, September 6, 2008

Thursday, September 4, 2008

First day of school


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.

Wednesday, September 3, 2008

appointments...



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 more on the Keto Diet

It's going to be a lot of work, but it may mean getting Dermot off some of his seizure meds and be rid of the side effects that come along with them.

More info will come later...

Sunday, August 31, 2008

Labor Day Weekend

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...

Wednesday, August 27, 2008

Vision


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!

Tuesday, August 26, 2008

The Fair



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

Perfect weather!

Monday, August 25, 2008

#3


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.

Dermot


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 healthcare because I fear something is happening to Dermot. He's not quite what he used to be. He's lost some skills and abilities. It's breaking my heart. We are determined to try new treatments, alternative treatments to make Dermot better. I'm not looking for a miracle cure, but I'd like him to have less seizures. He has around 30 a day.

I feel blessed that wehave a family with such love. We celebrated Dermot's second birthday in July and he was surrounded by many people who love him dearly.

My three sons


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.