What's New?

I have not posted in ages. It feels strange to sit here and stare at the cursor blinking on the blank page.  I just have to post this today, because we've got the best news. I have been crying tears of joy for at least an hour now. 

This morning I attended  an IEP meeting at the school. It's an annual meeting concerning her status in both PT and OT. I am happy to announce that she has not only met, but exceeded many of the therapy goals that they have laid out for her this year. Due to such improvement, her team has decided to greatly reduce the time spent each week in these programs. It will also be on a consult basis, meaning that she can pick it up again at any time should any problems arise. 

I am beside myself. This time last year, we had no idea what was going to happen. We didn't think we'd ever leave that hospital. I've never been that scared in my whole life, and I'm literally afraid of everything. My heart is pounding and its hard to put my emotions into words.

Last month we took the girls to Disney World and had a total blast! Cady had been stressing out about the plane ride since they've never been on one. Since we told them on Christmas that we'd be going in March she had plenty of time to freak out about it. I told her if she wanted to go she's getting on a plane.  A few minutes after takeoff, she asked her sister to open the visor on the window so she could see too! Of course, Addy was practically hanging out the window the whole time. Considering the plane felt like it was made out of Legos, it was a surprisingly easy flight. They did great.

The first day was rough and her legs got tired really fast. We didn't schedule anything that day on purpose because we knew traveling would be enough of an emotional rollercoaster, so we didn't need to be on a real one. We studied up on stroller and wheelchair rentals and were fully prepared to use them, but we didn't need them at all. She limped and swung her leg out a lot the day we did Magic Kingdom and it cleared up after she had a good nights sleep. She kept going like a boss. 

We purposely left a day open to chill by the pool and do nothing. The last few days were better weather. It was overcast or showery earlier in the week, which was nice because nobody got heat stroke. 

Haunted Mansion was NOT a happy ride for my two scaredy cats! Scared the daylights out of both of them. Oops. My bad. I still love it. Patrick went on Space Mountain and loved it. Maybe next time they can too. I was proud of both of them for being brave and well behaved. Nobody complained about anything. Nobody had a meltdown. We had FastPasses for most of the big rides so we didn't just stand around. We rested and didn't try to cram everything in to the schedule to the brink of disaster. An amazing time was had by all! 

I can't stress enough how pleased I am with the school for all the assistance. The level of compassion these people have shown us is top notch. Everyone has been so supportive it's beautiful. Friends and family have been there every step of the way. I couldn't be more pleased with life right now. 

Gotta go! Thanks for reading.

Calm and cool

We are knocking on wood. Things are going really well right now. They are getting back into a rhythm with school and after school projects and homework. I attended a PTO training today at the school and brought the kids along. I want to be more available to help out not only on field trips, but also in the classroom as volunteers are needed. 

I want to be that mom that is always on top of things when it comes to stuff like that. As parents, my husband and I are very much advocating for both of our daughters. That being said, I am not Super-mom all the time. Laundry is clean, but not folded right away. Dishes pile up in the sink. There is always shouting. We are very noisy in our house. Noisy and messy and fun!

We are never afraid of our emotions here. A common saying here is "hey, just because something pops in your brain doesn't mean it needs to come out of your mouth. Can we please find a nicer way of saying that?" It's amazing to me how much I just try to reiterate these simple little sayings to them. As simple as Mister Rogers Neighborhood (or the newer version Daniel Tiger's Neighborhood.) Common courtesy is still important. Please and thank you. No, thank you. I'm sorry. All simple and valid and necessary.

If all I teach my kids is how to be thoughtful and nice, then I have achieved. We are human. Our feelings are valid. Life is short, so let's all do some good. 

Spaghetti!

We  had such an amazing turnout to the supper! I was absolutely blown away by the whole event. Great music, friends, family, good food and a real feeling of love and support. There were all kinds of raffle prizes won, and lots of familiar faces. The girls went with my brother and his girlfriend for the night so we could unwind.

I have learned a lot about myself lately. I have learned that this right now is all I need to worry about. I used to be afraid of everything. I had to sort of let go of the rest so I could focus on the kids. What good would it do to be afraid and freeze up when something bad happens and they need me the most? When people ask me how I can laugh, I tell them it's because I have to. As long as I stay kind and weird, things will be fine. I can handle it. It's when anxiety and depression kills my attitude that days feel longer, people seem cruel, things go wrong. 

Don't get me wrong, sometimes it hurts to  get out of bed. Especially when it's only the second day of school vacation and it's snowing and everyone's screaming at each other. We've already done the Kiwi crate the in-laws sent. We made new crayons out of old ones. We cleaned every room. We even tore all the old clothes we had out of the basement to donate to a local consignment shop owned by Cady's classmate's mother. About fifteen bags and five totes of clothes and shoes and other odds and ends.

I think we've just been in shock for the past month. Trying to get back into a routine and get things back to normal again. The new meds seem to be working as far as we can tell. It's hard to not be paranoid and think that something is wrong all the time. Every little sound or new fixation sets me scratching my head and then I'm up all night surfing the net for my own research.

We are headed down to MGH soon so both Cady and I can get genetic blood work done. We were hoping to go today but got hit with this pouring freezing rain. We'll try to make a day of it and go to the museum or a concert or something. 

She has been re-evaluated by the school board and has been approved for full PT/OT services through the school and even over the summer to prevent regression. An IEP has been put into motion to protect both the school and ourselves legally. This is awesome and awful news to us. She definitely needs it, but it's terrifying to think that she could potentially lose fine and gross motor skills. Whether gradually or quickly, we don't know for sure. 

We just make the best of it. Hopefully that's enough.

Everything is cool.

So there is a spaghetti supper benefit this coming Saturday that some amazing people have put together for Cady. There are tons of door prizes that have been donated by dozens of local businesses to be raffled off. There will be live Blues music, open-mic so anyone can join. It really is an amazing little community here. 

A couple friends have organized an online Pampered Chef party that will be donating a portion of the proceeds to us as well.  

I feel like lately everyone has been asking about how things are going, even people I don't know. Every day I am amazed at how many people really do care.

Cady's birthday was today. She is 7 years old. We can't believe how fast she has grown. I haven't posted much because things have been going pretty well. One thing that raises a major concern is some numbness she is experiencing in both hands. I am not sure about this as she has her own way of describing things. She usually uses words like "fizzy" or, more recently, "crumbled" as descriptive words. She can move them, but she can't feel them. Her teacher has noticed a significant decline in her motor skills since the last incident. So have we. Time to call the neurologist again.

It's hard to stay optimistic. She has good days, and this was one of them. They were so tired and happy when they went to bed it made my heart hurt. I'm glad to be able to share these as well as the bad ones with my family. It reminds me of how fleeting and fragile it is to be human. Blink and it's over. "DON'T BLINK" as fellow Whovians(Wholigans?)would say.

Anyway tomorrow I have to work, and tomorrow night is the spaghetti supper benefit. Should be fun. The amount of people might trigger a panic attack, but I should be fine. The girls will be just fine too. Everything is cool. Good night.

reflections

Today is my 37th birthday. I spent the day running errands alone with time to reflect on the past year. I was overjoyed all day to receive birthday wishes on social media.I went into work to buy stuff for my birthday dinner. Everyone greeted me with even more birthday wishes. This morning I brought my older dog to the vet to treat an ear infection. An uneventful day is always a bonus. I am never quite "at ease" but as an introvert I always feel clearer minded after some solitude.

When I got home I got on Facebook and found a link to a very thought-provoking podcast about "PTSD in mothers(and fathers)of children who have a serious or life-threatening illness." It got me thinking about how I have felt off and on since Cady was born.

I can feel fine and then suddenly hear a noise or something that triggers a panic attack. I wake up from nightmares about both kids that set me off. I won't get into those now. I always wanted to be a horror fantasy writer, but I never imagined that this would be stranger than fiction.

In one of Cady's drug-induced moments in the hospital, I had placed her rigid body on the toilet. She kept leaning over and trying to swipe the blue-and-white tiles like it was part of a game on my phone. Later, I was taking a shower at the hospital and had a moment where I started to wobble and I felt like I was in a big, numb, white bubble. I looked at the tiles and they started to shift. I had to close my eyes to steady myself. Those tiles have always remind me of hospitals.

Everyone is going through something right now that you know nothing about.

"Life would be funny if it weren't so tragic."--Stephen Hawking

I am surrounded by some of the strongest people I have ever known. I know that no matter how messed up life gets that all anyone can do is keep going. Sometimes it's the biggest challenge life has to offer.

confusion

The last several days have felt surreal. The kids are energetic and positive. Cady's back to school and doing well. I honestly don't know how to feel. Along with friends and family and the whole community pooling together and rooting for us.  We've got several local groups hosting benefits. People have gone above and beyond with their donations on the gofundme page. I am in awe of the love and support that has come our way in the past few weeks. It's overwhelming, really. Thank you to everyone for listening and making us feel so loved. It means the world to us.

I suppose I should be happy that things are going so well. The truth is; I'm afraid. It never leaves my mind how dire the situation is. I have nightmares about it. I have panic attacks. Now we have all these other things to deal with through the school like 504 plans and IEP's. We had her evaluated earlier in the year so see if she qualified to receive physical or occupational therapy. She didn't qualify then, but she's being reevaluated now. 

If we're denied again, we will obviously seek those services outside of the school system. I need to prepare some kind of document for the school in the event of an emergency so they have her information on hand. We've discussed PTO training so I can be of some help in the classroom. I don't know what I can help with, but I'm more than happy to.

The school has been so helpful and understanding. All the staff is just wonderful. They have taken her into their hearts along with the rest of the family. From her first grade teacher, to the school nurse, to the bus driver. Everyone.

My husband's work and my own have been incredibly understanding as well. He went back to work yesterday, but I took this week off to monitor Cady and be here if anything should occur at school. We live minutes away so I can be there quickly. She has a checkup on Thursday and I need the pediatrician to fax some stuff to the school. 

That's all I have for today. 

From Patrick

So, I've finally had a chance to settle down and reflect on the past two weeks and here's what I've come to realize...

(1) I have restored faith in humanity. The outpouring of support from friends, family and complete and utter strangers has been very overwhelming. I can't even begin to express the gratitude we feel. To those that have brought us food or supplied gift cards to nearby restaurants and coffee houses, we thank you from the bottom of our hearts. There are too many to list, but know that we know who you are and our hearts are yours.

(2) A village is needed to raise a child. To our community of Lisbon and all the wonderful people that have reached out to offer a hand, thank you. We are truly at a loss for words. The benefits and banquets in the works by multiple establishments is beyond belief. I keep slapping myself wondering if this is all a dream. Nope. These are real, compassionate people that care for the wellbeing of a child in their town. Wow.

(3) Family > everything. This goes out to my older brother Paul Kelleherfor his daily talks on the phone, to my brother in law Dan Bowie and Heather Hesseltine Gamage for being there every step of the way, to my brother in law Jay Bowie for caring for our dogs and always showing up when we need him the most, to my father and mother in law Paul and Linda Bowie for taking care of Addy without question or hesitation, to my father and Debra McKeen Kelleher for always bringing a smile to our daughters faces, to Julia Durgee and Dan Carmody for being a great escape when I was down and out, to Diane Dennison for being the best extension of my childhood I could ever ask for, to Justine Fucci and Frank Fucci and Amy E Biggs for their compassion and daily support, and to Ed Blackman for being an amazing neighbor and life long friend. My eyes are wide open.

(4) Good is alive and well in this world. I hesitated to launch a gofundme page. I did. It tore me to think I needed to ask for help. I've always been the one to reach out -- supported myself and lent a hand when needed. Worked since I was 15 to support not just me but my single mother. Need to pay your car payment? Sure, just pay me back when you can. Short on cash to buy your family food this week? Just take $100 and I don't want it back. But I had to throw aside my pride and do what I could to help my child. I am absolutely floored with the generosity of family, friends, co-workers and strangers who believe in this little girl. I can't begin to explain what you have enabled us to do for Cady with your giving. In the days ahead, I will detail our steps that will hopefully lead to progress towards better treatment of her disorder. Know this...whatever we do with your money, know it will be met with the utmost respect for where it came from.

(5) I've been changed for ever. Have you ever come to a point in your life when certain events are either so traumatic or euphoric that they forever change your soul? The way you carry yourself. What you deem important. What you motivate yourself by every morning. Your outlook on life. I'm sure you have. Well, I'm 100% positive that has happened to me. I feel more human than ever. Mortal. Part of something greater than myself. To find a sliver lining in something so devastating is a challenge, but over the past few days since we've been home I've allowed those feelings to emerge and I'm better for it. 

Thank you for listening.

Daddy's accounts of our recent hospital stay...

March 9th, 2018:

Quick update on cady as i know a lot of folks are asking, which means a ton to us. 

Unfortunately, after three days she is worse than when she came in. She is on her 11th different drug to help her relieve pain and release her very extreme and constant muscle spasm, myokomia and ataxia. She is responsive but her pulse remains tachecardic due to the spasms. Her bladder is spasming which is causing some concern with her CK levels over 4000 -- normal is 500. Runners can spike with the flu at 200,000 so it really is about age and conditioning. We continue to take urine samples to ensure no kidney damage. Her white cells are elevated meaning likelihood that an undetected virus is the trigger, but no treatment for that except fluids and rest. Her ankles are turned in, legs stiff as a board, hands are locked up with her right hand clinched over her thumb and her left bent fully downward perpendicular to her wrist. Try doing that yourself as hard as you can and hold for 5 minutes. Now imagine that for 72 hours. Poor thing.

We continue to wait and be hopeful. I think breaking the virus will cure a lot and get her home, but shows the potential dangers of getting strep throat (which her sister is recovering from), or the flu or chicken pox or lyme disease.

We have a call out to Edward Cooper at Baylor, the foremost researcher of KCNQ2 and expect a direct call in the coming days. We hope.

March 10th, 2018:

She is finally getting past her acute episodes with much needed release of her myokomia and rigidity. Her muscles are like jelly and will need many days or weeks of rehabilitation to get back to normal, if she can get back to normal. Her hands and feet are swollen from the extreme physical impacts of her prolonged 72 hour spasms. She cant walk nor use her hands but i suspect that will change in the days ahead.

We continue to treat her with valium for pain and rigidity and are working with some field experts to balance her meds. She needs to eat, but having a hard time doing so. Since september, she has lost 20 percent of her body weight and now at 7, weighs what she did when she was 4. We undoubtably are concerned about this and are working through options to reverse this trend, but the reality remains that her spasms likely exert so much energy that she couldn't possibly eat enough to counter the calorie loss.

We dont know when we will go home. Addy is noticeably shaken and misses her family, cady most of all. And we miss her terribly. I cant wait for us to be together again -- laughing, playing and just being us.

We know there will be a next time. Our hearts ache knowing this. Cadys pain, addys pain, our pain, our extended family's pain. We will not cease in scraping the ends of this earth to find answers and better treatments. No child should ever be put through what cady just went through.

Good night all. My lack of sleep is catching of to me.

March 12th, 2018:

Today was a good day. Cady woke up feeling rather spry and in good spirits. She still wasn't that hungry but I convinced her to eat some fruit loops with milk. The cocktail of medicines have done a number on her taste buds making most foods pretty tasteless and unappetizing -- but she did what anyone 6 year old should do and listened to her father.

Most impressive was the progression throughout the day of not being able to stand to walking without assistance about 20 feet. Gingerly moving along with wobbly knees, but the leaps she is making encourages both Erin and I that we will be home soon.

We did have a concerning night prior due to her low blood pressure -- dystolic (what comes out of your heart and to your body) was around 42. This hypotension can be rather dangerous for the heart so the doctors were monitoring closely. Thankfully, through improvements in stamina and appetite, she is back to normal. One more night of steady pressure and we've checked another concern off the list.

Cady has been in and out of rather distressing emotional displays, but we try to support her by saying those are real feelings and she has every right to express them. To us, to visitors and to doctors. She broke down earlier for about 30 minutes just repeating "I just want to go home" in a sobbing voice. I think that's justified. We do too.

On a more upbeat note, I found the chance to run home and see the dogs, see Addy at school, talk with school staff and have a quick beer with some friends before trekking back to the hospital. Addy was noticeably sad, but she is such a trooper that understands deeply the severity of Cady's condition and the need for her parents to be at the hospital to support her. We try to ensure that Addy knows this isn't by choice and we want nothing more than to bring our family back together.

I picked up some very thoughtful and rather cute / witty cards that Cady's classmates made. When I brought them back to the room, she read each one with a smile and handed them to Erin who hung them on the wall. Such a sweet group of kids who really care for one another. To boot, both the school nurse (Kym) and Cady's teacher (Beth) came to the hospital this afternoon to see Cady, toting a build-a-bear (named Cassie) that they made minutes before at the mall. A wonderful gesture for sure. I cannot speak more highly of those two. They give me hope for the future of education in Lisbon. I think we are starting to change our tune about wanting to move.

So here we sit, another night in the hospital, waiting for further improvement. The Nor'easter could stymie our chances of going home tomorrow, but if I have my way, we'll make the journey. The road is long with this one, many decisions to make, along with the certainty that Cady will we back. The lingering uncertainty is just how bad it will be the next time? This one was bad, real bad. She's lucky to be recovering.

Thank you to all our friends, family, colleagues, and even distant connections that have reached out to show their support for Cady in a variety of ways. You never really get a sense of the network you carry until you go through something that requires you to lean on it. We appreciate all you have done from the bottom of our hearts.

Good night.

March 13th, 2018:

After a good day yesterday, we are not having a good day today. Cady woke up in high spirits, but she has since relapsed into a full on acute episode of rigidity and dystonia. She is in massive pain and hard to watch. 

Here we go again.

home is good

We got home on Wednesday afternoon. We are all in shock at the severity of the latest episode. It shook us to the core. There was one day when everything seemed hunky-dunky and we thought we were on our way home. She had eaten and even walked that day. The next morning she woke up and was in pain and locked up again. 

She's come out of it, and we are home and all together. We hadn't seen Addy in a whole week and being apart hurt us all. 

The rigidity has taken it's toll on her body. Most noticeably, her hands aren't as nimble as they usually are. She had a very immature grasp for a few days, and still can't feel the tips of her pointer fingers at all. We aren't sure if this is just temporary or if she has experienced some muscle death in that area. While still in the hospital, she had some smooth muscle issues. Her bladder seemed to be affected as she felt the urge to urinate at an alarming frequency. This scared  us, because it could have been affecting her diaphragm. They monitored her heart rate for two days due to tachycardia. Scary stuff. 

Since we have been home, there has been an outpouring of support from friends and family. Patrick started a gofundme page and immediately people started offering their donations. My brothers have paid to fill our oil tank even though we told them not to, but since when do they listen?

My faith in humanity has been restored. It feels very odd to both of us, who don't often reach out for help. It is alarming and heart-warming to know that so many people are thinking of our family. Thank you all so much for everything.

still waiting...

We spoke with the docs. She is being taken off the Acetazolemide and they are instead pursuing the Trihexyphenidyl. Her limbs have released and her levels are closer to baseline than they have been since Wednesday night. We think she has been on 12 different meds over the past few days. We have been concerned with the elevated levels affecting her muscles and organs. She is doing well, but we're definitely not out of the woods yet. 

Her sister is feeling much better. She is no longer contagious and her fever has gone. We have arranged for her to visit later this afternoon. They might both feel a little better after seeing each other for a bit. The best medicine might be some sister time. 

My niece and my brother's girlfriend are cleaning our house from top to bottom while we are away.  I am always amazed at how compassionate people can be and it boosts my faith in humanity. Those who are truly there for you in your time of need are so important.  

Do us a small favor. Mean every word you say, or don't say it. Do what you say you will do. Do not perpetuate false hopes. If you have no intention of helping, do not offer your assistance. If you want to know, ask. I am an open book right now.

I open my mouth and positivity comes out, but inside my head I am every emotion in existence. I am triggered by every beeping monitor, down to the blue-and-white tiles in this stupid room. My child is lying here in need and all I can do is sit here and listen to the sound of my heart breaking for all eternity.

I can't wait until this fucking nightmare is over and we can all go home. 
(Written on 3-10-2018)

It took me until now to decide whether or not to post the section above. I figure, what the hell, it's raw emotion and if it's too much for someone out there to read then maybe they shouldn't read it. The weekend was a time for resting and visits from a few friends and family. She is doing a lot better now, she is moving and her sense of humor is back. She hasn't eaten much over the past week so she is sore and tired. 

I am writing this while we are waiting for rounds. She is incredibly unsteady and at this time is unable to walk without assistance. She wants to walk to the toy room, and I keep telling her she needs to eat before she goes anywhere. So she ate a bowl of Fruit Loops with milk. The most shes eaten since Wednesday is a couple of lousy fruit cups and about eight pickles.  Progress is slow, but it's still a baby step forward. The hospital has Ipads, so she is playing something silly while she gets movement back into her hands. She couldn't make a fist or complete a motor dexterity test as recently as yesterday (ie. touch thumb to each finger).  Little victories.

Addy is at school today. I can't imagine how she is feeling. During her visits this weekend, she seemed energetic and cheerful. In contrast with Cady's aloof, borderline hostile mood, it was a welcome distraction. Cady misses her sister, but doesn't want to show her how frightened she is. 

We are all terrified. This could potentially become fatal one of these days. Sure, we'll make it out of this one, but what about the next one? Or the one after that? The thing that I wish people would understand is the simple truth that she could DIE. There is no way of knowing when, or even how, but it could very well happen. Let that sink in. Adjust your fucking priorities and let that sizzle in your brain box for a minute. Then we'll talk.

interesting

Cady released a bit early this morning, but has since regressed to a dystonic state. She is alert and aware. While she is in pain, she is able to communicate very clearly.

Twenty minutes ago she was given the Phosphenytoin and Diazepam in the hopes that it will release her muscles again and stay that way. In the event that it does not, they would like to try Trihexyphenidyl (Artane). It is an antispasmodic used to treat stiffness, tremors, and spasms. It is used to treat Parkinson's disease.

I don't know if any of these pharmaceuticals are helping. I hope that they can find the right combination soon so we can all just fucking go home. She is asleep now,though.

Addy is doing a little better, so that's some good news.  She's been taking her Amoxcillin and Tylenol like a champ so she can get better faster. It's also helpful to have friends and family to help us with things like letting our dogs out, shoveling, etc. If any of you helpers are out there reading this: thank you from the bottom of our hearts. It means more than you will ever know.

More later.

back again

We are back at Barbara Bush again. She has been presenting signs of rigidity all this week. We had been giving her Diazepam. She'd  come out of it, but the next day, we'd be right back where we started. Unfortunately,  last night , it got worse. Of course, sure enough,  I get another call saying Cady's hands are acting up again. She almost made it a whole day this time. Our youngest, Addy, came home from school with Strep throat so i picked  her up. 

I drove home from work afraid, angry, and sobbing my heart out. I could feel way deep down that something terrible would happen.  We sat around the ER waiting for a room upstairs for 4 hours (not like the previous 12 hours from two weeks ago). She has tested negative for Strep throat and the flu. While this is great news, it doesn't  point us to a glaringly obvious diagnosis.

She is heavily medicated and miserable. The ususal cocktail isn't working, which is incredibly  frustrating. The docs are trying Phosphenytoin to see if that works. If it does, it is similar to Trileptal, and she needs to be put back on that. Maybe it was working after all. My suspicions about the Acetozolemide still stand. She hasn't been herself lately and that may be the culprit. Or one of many. 

Her sister is with my parents right now. She is very sick with a very high fever, but she's on Amoxcillin and sleeping it off. We miss her terribly, Cady most of all. They hate to be apart. Addy hates to see Cady go through this painful stuff all the time. I love them both so much it kills me.

The Phosphenytoin has her sleeping now.

I have no idea what is going to happen. Every time it does, I imagine the worst possible outcome.  She had a chest x-ray, urinalysis, bloodwork for CPK levels. Everything.  There is no sign of a bacterial infection. It could be an undetected virus. I don't know, and I'm getting damn tired of it.

Every time we wind up in the hospital, I wonder if this is the "BIG ONE". I wondered if these events are just leading to a much larger problem. I wonder if every time she says "I love you" it might be the last time. Keep your loved ones close and be thankful that you have what you have. 

Yet again we are in the middle of a snowstorm. I hope my bad feeling is just a feeling and not reality. Thanks very much for all the love and support.  As always, we'll keep you posted. 

Yay, anxiety!

An appointment with our neurologist here in Maine has resulted in a conversation about weaning her off the Trileptal over a six week period. We are all for taking the risk that she may react in a negative manner if that happens. This sucks for many reasons, but could reveal something incredibly important. Our concern lies in both directions.

I was hoping I would come home waxing poetic about hope and the power of positive thinking, but I sat here staring at a blank screen. I am frightened. I want something to happen, but I lie awake every night wondering if I will wake up and have her be gone from us. We don't know if this is progressive. We don't know whether or not we'll wake and have her be unresponsive. Something has to change, but I worry that it won't be for the better. There is so little known that it is impossible to prepare yourself for the next step.

The weaning has started today. Tensions are high.  I am having a harder time writing about it than I thought.  Between the last paragraph and this one there has been two days. I had to work today,  but Patrick stayed home with them and said they were well-behaved.  Cady has more energy than last week. Perhaps the combination of the two meds was making her irritable and overtired. Her helpful, silly nature has returned and I hope it stays. We have all had some seriously emotional conversations about how we all need to work hard to communicate over the next several weeks. She is a very self-aware child and we encourage her to advocate for herself. We ask that if she feels strange or has pain, she speaks up and isn't afraid to admit she needs help. She told me that she can sometimes feel an episode coming on and other times it just hits her out of nowhere. 

The neurologist has asked us to keep a sort of journal "on the last 6 months and what they have been like in terms of frequency and severity. This is how we will figure out if there is a difference being on or off the Trileptal." I didn't mention the blog, but I will someday soon. 

Its hard to document something that is so close to my heart. I want it to be articulate and poignant, but I have honestly had some serious mental blocks just to cope with this.  We need warmer weather and most of all to be outdoors. Not only does it boost our moods, but there is something about bare feet in the grass and sun in your face that just makes everything seem better.

I need to go to bed, so unfortunately I must cut this entry short for today. Thanks for tuning in!

I just...

Okay. This is ridiculous. 

We sent the kids off to their grandparents "up North" this weekend. They had a blast! They got rides on the four wheeler, played in the snow, baked cookies, and got to see some extended family. After a bad week, they needed something normal for a while. 

On the car ride home, Cady seemed off. She kept wringing her hands and getting wiggly. I asked if she was alright and she said she was fine. After a few hours home, we were just watching TV and she says, "Mommy? I feel like maybe the Thing is happening in my hands a little bit." My heart drops and all the anxiety is bubbling to the top again. We call it a SadMad. I stay calm and we all crack jokes. We gave her some Diazepam and let her watch some Youtube videos. We gave her the rest of the cocktail too. Tylenol, Oxcarbazepine, Acetazolemide (that's the new one) and the Amoxcillin. She told me that the Amoxcillin tastes like barf. We know. It always has, and it always will. I know it's only been a week or so, but the Acetazolemide makes her... bitchy. Theres no other word for it. It's a mean thing to say about a six year old, but it makes her whiny and mean. I can't get her to do anything without arguing about it. 

We have a doc appointment Tuesday to speak with the neurologist here at Maine Med. We don't know what to do. Luckily, they have been on February vacation all week to try and re-adjust to "normal". Whatever the hell that is. We'll see if she feels well enough to go to school tomorrow. She's always so worried that it will happen at school. It consumes her. All we can do is validate her feelings and try to move past it.

She's becoming more and more aware that she is very different from other kids. I try to remind her that other than her KCNQ2, she IS just like other kids. Her sister takes care of her too. She puts on a show and tries to make Cady laugh with weird voices, funny songs, and outrageous dancing. 

We're a good team. We try anyway. Our lives are full of love and laughs right alongside the pain and fear. 

I can't say anymore. See you soon.

This is us

I realized that I have jumped right into the story without first introducing the rest of us properly. I'm hoping that some of you readers are "from away" as we Mainers say. I just joined Facebook for the first time in 4 or 5 years in the hopes of promoting this blog to spread awareness about KCNQ2 and other types of epilepsy. For those of you who don't know us personally, heres a brief introduction. For those of you who do know us personally, this is why you haven't heard from me in a long time. 

This is my husband Patrick.  He's a keeper. He loves the outdoors, sports, and music.  He's very outgoing and well-rounded. Despite the serious face in this photo, he's got a great sense of humor. He's a fantastic dad, a great husband, and an all-around awesome guy. I'm lucky to have a husband that lets me be me and makes me laugh. He works hard for our family and we love him to pieces. I honestly can't say enough good things about him. He keeps me from falling apart most of the time. In a time where so many people are busy tearing each other down, we hold each other up. I am proud to be called his wife.

These are our daughters, Cadence and Addison. They are not only sisters, they are best friends. They are good for each other. They love books, art, music, movies, making messes, and driving me crazy.  They love hiking, fishing, camping and school. We just got back from a trip to the library for February vacation. They love the library, but we don't get there much during the school year. The picture below is of a trip to Hedgehog Mountain in Freeport Maine. They love all animals, even gross wiggly, prickly ones like the grasshopper in Cady's hand in the picture. They love everyone and everything. Especially each other.

These are our pets. Shady Lane is the twelve year old Husky/Shepard mix. Tela is a  two year old Samoyed. The cat is Zelda. All girls. My poor husband is the only male in the household. They all play and coexist with out much shenanigans. 

 This is me, Erin. I love hiking, fishing and camping. I like music, reading, writing, cooking, and movies. I like quiet things. I keep to myself.  My humor is dark and witty. The kids take up most of my time, and I am happy with that.

That's us! We are happy despite the obstacles life throws at us. Thank you so much for staying tuned. The good and bad news is that we'll probably always have quite a lot of stories to share with you all. Our hope is that after you read it, you share it and it reaches others and touches their hearts as well. Share it with friends and family on social media and by word of mouth. See you next time!

Here we go again...

Just last week we were back at Barbara Bush.  We spent 12 hours (again) in the ER waiting for a room to open up upstairs. Cady had an episode triggered by a fever of °103 that came on suddenly and hit her hard. Her emergency dose of Diazepam didn't work and we wound up there for three nights while they tried to find the cause of her fever. It wasn't until the morning of the last day that the docs found signs of an ear infection. She had tubes put in both ears about a year ago due to a ridiculously high amount of ear infections the year before. They put her on Amoxcillin. 

9/4/2017

This and the previous episode last September that landed her in the hospital have taken their toll on us all. Most of all, Cady. She is not only worn out physically after the rigidity, but emotionally. In addition to the Trileptal, she has also been given Acetozolamide. The game plan is to wean her off the Trileptal and see how it goes.

2/13/2018

 "See how it goes." I don't think I could roll my eyes any harder and not have them just fall out of my head. Frustrated isn't even in our vocabulary right now. It's the best we can do, though. We are safe at home and together, and that's the only thing that matters right now. Cady and Addy are together again and all is well in the world. 

Cady slept most of last week. She missed her 100 days of school celebration, and the class Valentines Day party. She was so bummed out. She has expressed feelings of sadness, and helplessness. She asked us not long ago why she was born like this, and why her sister was not. This led to the declaration that she wished she wasn't born at all. She is six years old. My heart stopped. I immediately reassured her that there are tons of people who are glad that she is here and that we all love her very much. Our hearts broke again for her. Whether that was the meds talking, I don't know. I realized then and there that there has to be something I can do to reach out and spread the word.

For the first time in probably five years I rejoined Facebook. You can also find me on Instagram. Please. Don't hesitate to pop in and say hello.

Fun Fact: In our eleventh hour at the ER, Rob Gronkowski of the Patriots was upstairs at Barbara Bush signing autographs. We completely missed him by 45 minutes. My poor husband was beside himself. So close...

It's funny how we got here...

There were many times that we were sure it would never happen.  Four years and two miscarriages were more than we ever thought we could handle.  I'll spare you that part, because there are so many of us out there with the same story. Losing a child at 8 weeks in the womb is hell, I won't lie. I thought I'd never recover.  I feel like it only made me stronger.  That prepared me for the bizarre journey ahead.

Fast Forward...

On April 6, 2011 we had our first child. Cadence Theresa Kelleher. Even on her first day in the world, she displayed that signature defiance we all love her for today. 14 hours of labor only to have a c-section. Exhausted and elated like any new parent, we revelled in our new joy. The next couple of days changed our world forever.  My husband went to work and to class like any other day, ever diligent in his pursuit to finish college so he could just focus on his new family.  I was trying to nurse, but she just wouldn't latch on. When suddenly, she rapidly changed color. I tried to find the buzzer for the nurse, but in my panic, I could not. I got up and laid Cady down in the bassinet and shuffled to the door in pain to call for help.

They whisked her away and told me that it appeared she had suffered a seizure.  Something that had been on my mind for years. When I was a child I had suffered from benign Neo-natal seizures that I ended up "growing out of." I never really understood that expression.  Like, whose to say I won't hit 40 and die in a car crash because I had a seizure? If theres a problem with your wiring, couldn't it kick you in the ass one last time? The brain has ways of repairing itself, though, and I suppose the world moves on as it should. I apologize for the distraction, but the backstory is of some importance as well, and cheerfully morbid is sort of my character description.

They sent the three of us to Barbara Bush hospital in Portland, Maine. We spent three months there while they struggled to find a medication to keep the seizures at bay.  We spent every awful night away from her at the wonderful Ronald McDonald house. Mere blocks away from my poor child in the NICU felt like millions of miles. My poor husband was still desperately working toward graduation. It tore him up, but he kept it together as best as he could and we are all the better for it.  She was given Keppra and in one 24 hour period, she had 24 seizures. I think that was the day I told the nursing consultant to get the fuck out of my hospital room. In my defense she told me to "milk myself like a cow." The head nurse was understandably worried about me, I told her that I am always this anxious and that the milking lady got on my last nerve. She laughed when I called Cady a jerk for having her first projectile shart on me. Margot, wherever you are, we love you.

Eventually, Cady stabilized with a combination of Phenytoin and Phenobarbital. We were sent home with a diagnosis we had never heard of before, KCNQ2. This series of letters and a number infuriated us more than anything, because no one, absolutely no one knew anything about it at the time. All we could find out was that it was a genetic mutation involving a hyberexcitability of the nerves. We gave her the meds and she was pretty good. We weaned her off of the Phenobarbital but continued with the Phenytoin. Time went by. Counting ourselves lucky,  we just enjoyed it. Photos, videos, sleepless nights with a beautiful baby girl. I had a hard time sleeping and would wake up at all hours to just look at the little pink, smooth, screaming thing that we had made. I still do.

When she was two we consulted the docs and ended up taking her off the Phenytoin too. One year of not going to the hospital to be stuck with needles and have what I can only imagine feels like goddamn alien invasion to a teeny baby. Poked and stabbed and sedated like an animal. Studied like a textbook. It felt like such a victory to us. Maybe we could write it off as benign like my seizures. Maybe it's just that simple.

Fast Forward...

When she had been completely stable for an entire year. Not a single sign, no meds, no doc visits, no hospital stays. Nothing. Out of the blue, at the age of 3. She woke in the night and started screaming incoherently. She was convulsing in 30 second episodes. We were just holding her and crying when when we called the ambulance. By the time the EMT's got there, she was fully cognizant and not showing any symptoms except a high fever.

Then not long after that she started experiencing bouts of rigidity that wouldn't loosen up on their own. Her hands and feet would freeze up and display in a way very similar to Dystonia. It was a sort of episodic ataxia. Several times she was sent to the hospital where they would give her a cocktail of just about everything they've got. Diazepam, Fentanyl, Morphine, Ativan...the list goes on.

We contacted Boston Children's hospital. Just like the first hospital, they are an amazing institution that has done phenomenal work. Two fantastic hospitals in their own right. Unfortunately, neither institution knew much about the disorder. There are so few cases of KCNQ2 and the symptoms are so diverse. It's hard to study something that has no information backlogged for them to compare it to.

They put her on Baclofen which seemed to help. They suggested bloodwork and meeting with movement specialists. We ended up moving on to where we are now at Massachusetts General hospital. Dr. Chu has suggested genetic testing. She also prescribed the Trileptal. There are still episodes, but we are able to fix a lot of them at home with the emergency dose of Diazepam.

She is 6 now.
She has a 5 year old sister and they are the best friends ever.

June 19 2012, her little sister Addison Elizabeth Kelleher was born C-section. We joked that she started talking and running as soon as she was born and she hasn't stopped since. They do everything together. They love hiking, mud, reading, art, music, cooking. They are just regular kids. Addy does not show any signs of the disorder. 

Ninety percent of the time she is running and playing and laughing. Then there are days she can't walk. She is in unfathomable amounts of pain. She is fully conscious during all of these bouts of rigidity. She is very self-aware and can tell you exactly what is happening. Keeping her calm is all we have to do. Hell, its all we CAN do. We have to appear calm when on the inside our hearts are breaking.

She recently had her very first episode at school. Luckily, her bus driver, school nurse, and most of the office personnel witnessed it. As you can imagine, they were freaked right out. The good news from that is now they know what it looks like. Before this, everyone had been just speculating about her condition. If it looks A, we do this; if it looks B, we do this. 

We started this blog in the hopes that we can reach out to others affected by this. Please feel free to comment below and share your stories. We want to hear from you!