Thankful and Update

        It’s been a while since my last post. That’s not helpful for those of you who read this blog but the reason is good—Ellie’s episodes have been fairly controlled and mild. Let me say first and foremost, and during this season of THANKFULNESS that we know how extremely lucky we are. I read other family’s stories about their experiences with CVS and I am blown away at their suffering and their resilience. The children who go through this are completely remarkable. Something I have learned from being in touch with so many other families is that CVS often goes along with a host of other health issues. So if you are not a CVS family and you meet one—you should shake their hands and congratulate them for “keepin on, keepin on!”

Comparing is not usually helpful, but I think in our case it brings a healthy dose of perspective. I met a really great adult woman at the CVS conference last summer that has to live with a port in her chest and and a g-tube in her stomach for fluids and feedings. I met another warrior mama at that same conference whose son was just days away from heart surgery and having major CVS issues as well. That little guy is still in the hospital and has experienced the kind of physical suffering that I pray most of us will never know in our lifetime (I’m not exaggerating, it’s terribly sad, google Team Declan if you want to know more). We also met a girl who was a freshman (sophomore?) in high school and had missed 40 days in a row that year because of how out of control her CVS was. Dr. Li told us there are kids with CVS who go to school Monday, Tuesday, Wednesday and then stay home to sleep and rest on Thursday and Friday. There a LOT of families who have children with CVS who are also autistic and non-verbal. I’ve even learned of a family who lost their son because of CVS. He was also non-verbal and for lots of reasons his body just couldn’t fight the cyclic vomiting. Despite spending a good portion of his life in the hospital he still passed away as his teenage years began. 

We are terribly lucky and sometimes I feel guilty updating you all on Ellie’s health knowing the range of horrible that other kids/families/adults live through with this same disease. But, as I would tell any friend, everyone has something and it’s ok to vent, to feel stressed and afraid. Even if your struggles aren’t as bad as someone else’s, they are still struggles.

So here is my update on my sweet, growing girl…

We saw Dr. Li (the wizard of CVS) in Milwaukee in October.  My CVS mom friends said to prepare for a 2-hour appointment, but I couldn’t imagine what we would talk about for 2 hours. It was a 2-hour appointment. It was mostly checking in, telling him about our year (particularly the hard spring we had last year) and making medicine and supplement adjustments. He updated me on research that has changed and other new learning, etc., etc. But this appointment also brought a few new considerations and insights that are worth sharing:

1.     Swimming: as we talked he asked Ellie questions about school and activities she enjoyed. Naturally, if you know Ellie, she told him about her love of swimming. He then told me that he has a LOT of patients who live in and love the water the same way our Ellie does. It’s a reaction to the mitochondrial piece of the disorder. Ellie’s temperature on a good day is 99.6/99.9. If that is her reading we know that all is well. When her reading is more like 100.3 or 100.5 we know that she needs to slow down, get more sleep, etc. We also can use that as an indication for a possible looming episode. Kids with mito disease often struggle with core body issues (heart rate, energy, temperature, balance—all sorts of ways). SO, when Ellie plays outside, particularly in the spring or summer, she melts away fairly quickly. She also hates running. Remember how we bought her the cooling vest last spring in hopes of helping her feel comfortable for a few more hours outside? But in the water, that child could play for HOURS. She loves swimming and because she is so long and lean, she is naturally pretty good at it. This was just a huge affirmation. Dr. Li talks a lot about how it is still important for mito kids to get good exercise even though it doesn’t feel good. I am so happy that we found Ellie’s “thing.” She loves swimming, she’s good at it, and we will happily support keeping her core body temperature down via this awesome form of exercise! Score! (BTW, She can do all the strokes except for the butterfly—once she conquers that one she is close to being able to try out for the junior swim team!)

2.     Less thrilling: this time around Dr. Li did some in-office checks with Ellie regarding connective tissue disorder. Medically speaking there are 9 in-office markers that doctors go by when deciding whether or not to refer a patient to a connective tissue specialist. Ellie has at least 5 of those markers. So, we are going back to Milwaukee in…ready for it… APRIL to meet with that specialist. Ugh! This is what happens when working with doctors who specialize in rare diseases in children. We are on the waiting list and I’m hoping they call sometime in January or February to move up our appointment. As Dr. Li was trying to tell me about what connective tissue disorder is that day in the office I was confused and had a hard time understanding (I think I was also experiencing some brain fog trying so hard to keep up with the medical jargon). It has to do with, well, body tissue and it can effect anything from skin, joints and muscles to internal organs. Ellie’s heart rate, her inability to maintain a normal body temperature, her ridiculous flexibility and her low energy—these are all elements of potential connective tissue issues. There are about a thousand different variations of connective tissue disorders, hence the next step--going to see a specialist. As Dr. Li was telling me all this, I couldn’t help but wonder, “Well, who cares? Eleanor being hot and flexible seems like the least of our problems. Do we really need to look into this? Do I really need to add a new doctor appointment into our rotation of appointments in life right now?” But as it turns out, I do. He danced around it a bit and tried to emphasize the unlikeliness of this, but kids who have connective tissue disease are at a greater risk for aortic aneurisms than the rest of the population. Damn it. Also, if Ellie does have some sort of connective tissue disorder, each different type will mean different meds, exercises or food modifications, and apparently some vigilance around all things heart related I assume. Her mitochondria don’t work well and therefore can cause all these strange health issues. Dr. Li played it down a good deal. He said that there is just as much a chance of her NOT having it as her having it. So, I’m just letting this one ride for now. There’s nothing more to do about it. I allowed myself one night of Googling “connective tissue disorders” but it’s so broad that the spectrum of possible issues is too huge to even consider. My last comment about this new development: Last week, a day before her latest episode, Ellie was complaining that she couldn’t feel her finger tips. Then the next morning she woke me up at 5:30am saying the bottom of her leg was asleep and burning (she was sleep-crying, I massaged it, eventually it went away). These are classic symptoms for connective tissue issues (poor circulation). Sigh… we’ll see.

3.     I am running out of time. Is it physically possible for me to finish this up quickly? I am so long-winded, I’m sorry! But the last new development is that we have decided to do genetic testing for Ellie and then later we will do it for me as well. Sometimes the company we are working with will offer to test parents for free (especially mothers) to get a better understanding/picture. So we are just testing Ellie first. I worked through about a million health forms, we sent in one payment and sent her spit to the fancy East coast company via FedEx. The company will work directly with our insurance so that we don’t have to pay an arm and a leg. There are so many pro’s and con’s for genetic testing. That might be a separate post, but for now—Dr. Li said that based on the genetic testing he has done with his patients he has tweaked medicine and/or supplements for about 65% of them. For Brian and I, that’s a pretty big percentage.  

Dear Meghan...

Sometime at the beginning of June I received this comment on one of my blog posts. It changed something deep in me. I am so grateful she took the time...

"I stumbled across this blog through another CVS blog (cvsdad.tumblr.com). When I read this Mother's Day post, I couldn't help the tears that poured down my face. I was diagnosed with CVS around age 6 and I am now 21. It breaks my heart that your Ellie has to go through what I went through. And that you have to experience what my mom went through as well. But if its any consultation, I rarely (if ever) have episodes anymore. So there is hope that Ellie will grow out of it too, or it could at least improve. CVS is such a tough illness to deal with, but your daughter is tougher. I hope that you let her live freely (within minimal limitations) as she'll remember all of the fun things you afforded her to do and she'll mostly forget the episodes shes had. But you've definitely got one thing right... CVS changes and strengthens the relationship with your daughter. My mom and I have the closest relationship out of any other mother-daughter relationship I've seen. Your Ellie will look back and appreciate all those times you rubbed her back and held her hair during episodes. It truly is the only thing that makes CVS less terrifying. But as she gets older she will definitely learn to read her own body, and you will have to learn to trust that she knows her own limitations.. That was a struggle I know my mom faced. But in the end, it gets better. I'm on the other side of this illness and I can tell you, it really does get better. It's an awful illness that I wish had a cure, but from where I stand it seems like you're doing everything right. If you ever have any questions for me or my mom, feel free to email me. I am wishing you and your family the best."

Here is my response:

Dear Meghan,

            It’s been a while since my last post. It’s summertime now and my Ellie has been doing great. Besides for a few minor headaches and tummy aches, we have been mostly episode free.

            Dear, sweet, thoughtful, kind Meghan. I’ve thought of you often though we’ve never met. In fact your comment is all I know of you and still I feel like I owe you a world of thanks. Your words have followed me this summer. Two years ago when Ellie began getting sick a red flag was raised in my life. My protective instincts took off and my anxiety crept higher and higher. We are two years into this sickness and sometimes I feel like I am always on high alert. Only a sufferer (and her mother) can truly understand, that’s why your words are such a gift. When you watch your child go through so much pain, so much discomfort…when she cries and begs to go to the hospital, when the pain is causing her to sweat buckets and shake…well it’s no wonder us mothers (and dads too) do whatever we can to protect our child from having to go through it again (and again, and again).  Our spring was rough, though not as rough as a whole lot of other CVS kids and families go through, nonetheless by the end of May I felt like Ellie and I both had Post Traumatic Stress Disorder.

When will the next episode start?

Is it because she’s not sleeping enough?

Is it time to go gluten free? Maybe that’s causing it?

Is she constipated?

Is she exhausted from school?

Is she worried about something?

Should we skip swimming?

Should we skip that birthday party?

Does she need to nap today?

Should we cancel her summer camp plans?

Should we cancel our summer vacation plans?

Are there better medicines? Which doctor should I call to find out?

Does she need a 504 plan? Will her next teacher be as kind and understanding?

Does she need a therapist?

Will I have to miss another book club? Will I have to miss another faith group? Will they understand?

Her eyes are bloodshot… her temperature is 100.2… but she is begging to go outside and play. What should I do?

It is all consuming, never-ending, trying to find the balance. And just when things begin to feel normal and you catch yourself taking a deep breath, a fever happens or a mini-episode with tears and pain and I want to scream (and so does Ellie).

You’ve changed some of that Meghan. And I’m quite sure that there isn’t anyone else who could have said anything else that would have made any difference. It took a stranger, a wise young woman who grew up with CVS, who knows just what we are going through to help me hear what I needed to hear: “I get it. It’s so hard. It’s terrifying even. You are doing a great job. My mom and I have that gift of closeness too. LET HER LIVE LIFE, THAT’S WHAT SHE WILL REMEMBER AND CARRY FORTH, NOT THE EPISODES.”

So with your words as my brave shield of armor:

We go to the beach even though some days it is terribly warm.

Ellie went to sleep at Grandma and Grandpa’s for a week even though her sleep is not very good away from home.

I let her try a sleepover at a friend’s house even though the doctors at the conference advised against sleepovers all together. It didn’t work, I picked her up at 9:30—she lived.

She had two playdates in one day, no episodes.

I let her skip veggies and mucinex for a day or two, no episodes.

We drove home from a trip to visit with cousins and got in at 9pm, very crabby the next day but episode free.

I found a therapist for her, to help me help her, thankfully.

I took a part-time teaching job (a big risk, a big step, a fabulous new adventure for me!)

We are currently driving (18 hours in a car) to Colorado to climb the mountains, a dream my sweet 7-year-old has. She might have an episode while we are there, but we’re doing it anyway. We brought the meds, there are hospitals there. 

 

You helped these things happen. You helped me be brave and learn to let go a bit. You reminded me, you taught me, that we are bigger, stronger, braver and tougher than CVS and life deserves to be lived despite the pain and agony of the episodes.

I am still cautious of course. It would be irresponsible not to be. She has a cooling vest, a medical bracelet to wear on outings with other families or school. She takes her daily medicines and supplements, has a strict bedtime and she takes lots of breaks throughout the day. I have to bug her constantly about drinking enough water and if I see bloodshot eyes, dark circles under her eyes or her hands on her stomach I know we need to slow down. But, we are doing it. We are putting fun adventures and time with family and friends before CVS as much as we can. I’m sure the next time she hits a hard streak it will be difficult not to be too overly sensitive or nervous, but Meghan your words will stick with me forever. As one of my brother’s often says, you have been a “game changer.”

Thank you!

Mother's Day Post

Ellie’s health has been mediocre the last few weeks since the stomach flu/ER week. She has had a host of what I call “mini-episodes” where she gets very pale, very quiet, often has a low-grade fever and eventually gets teary and asks for her medicine, has to lay down with one of us, and all of us pray it passes. But more significant than the mini-episodes, she has had two more major episodes in the last month. A mini-episode is over in a few hours but a major episode takes us down for 2-3 days, sometimes more depending on what the trigger is, like a virus for example. It also screws up our schedules and does a number on our sleep. So to experience a major episode every other week is a lot. My mommy definition of “more major” equates to total heartbreak with a side of puke and a LOT of stomach pain.  Here are a few reflections on that:

1.     The hard part about your child having a chronic illness is that it is chronic. I can’t take it all away from her, when it’s done it’s not over. When we finish an episode we can’t be comforted by thinking it won’t happen again for a long, long time.  Ellie recently shared with me (and her cute first grade class) that the worst part of living with CVS for her is always being worried that an episode might start: “Everyday I’m worried about it actually. I can’t stop worrying about it.”  

So I remind her of how much we love her. I remind her again and again that she is so brave and so strong and that Daddy and I are so proud of her. I remind her that we will always stay with her. I remind her when we are chatting on a good day and I remind her when she is in the middle of it: “I’m here honey, mommy’s here. I’m so sorry. I know baby, I know. I’m right here.”

Waiting till she is ready to move back to bed.

And we brainstorm. I remind her that her teacher knows all about CVS and she can call me in an instant and that I will constantly check my phone in case her school calls.  I write to her gym teachers to let them know she is having a hard time in gym lately. I ask them (beg, hope, pray) if they wouldn’t mind reassuring her that it’s ok for her to sit down, to get water, take a break. When going to playdates or birthday parties I write down some info and my phone number and we tuck it in her pocket, just in case.  Each morning I tell her to have a great day and then remind her that I’ll be here if she needs anything. What more can we do? Recently I ordered a medical alert bracelet. It will be engraved with her health info and my phone number, I hope it brings her comfort. 

2.     Humans are naturally selfish, including me. When I write this blog, when I update friends and family, when I talk to the school nurse, I am always talking from my perspective. I say “it’s hard” and “I’m exhausted” but in reality, I’m not in a massive amount of physical pain. I’m not the 7-year-old telling her class that she can’t stop worrying about “it.” I’m not walking around nauseous and tired with off and on stomach pain each day. How does she do it? If I puke once a year that is more than enough for me! Why am I complaining?

So I remind myself: I need to vent. For my whole life the very best way for me to move forward, to recharge and to stay strong has been for me to talk it out or write it out. This is how I remain strong so I can be strong when she needs me. I remind myself that it’s ok that I am tired and it’s ok that this is hard. I try to tell myself whatever it is that I would tell a friend who was going through the same thing: just because I am admitting that this is hard for me doesn’t mean that I don’t realize how much harder it is for her.

3.     Just like Ellie, lately I feel like I have PTSD (post traumatic stress disorder). Ellie’s episodes are trigger related, not over the same amount of days like some kids (in the CVS world, Ellie is a trigger-kid, not a calendar-kid), so I can’t stop thinking about her triggers. It’s always been on my mind to some degree since she was diagnosed, but the last few weeks, the chronic-ness of it all, my mind is a whirlwind. I can’t stop wondering when another episode will start. I wonder how she is doing at school, I wonder if we should or shouldn’t do anything after school because of her poor energy lately, I wonder if it will be a bad night of sleep or a good one, I wonder if she is drinking enough, I wonder if she is being brave enough to ask to sit down during gym or dance class. I wonder if I should be calling the Milwaukee clinic to ask this question or that. When she looks tired, hot or thirsty I immediately wonder if this is normal kid stuff or CVS related and whether or not it will turn into anything.

Sooooo… I remind myself that she is strong. I remind myself that she is getting better and better at reading her own signals. I remind myself that we are doing our very best and that the most important thing is that she experience life to the fullest. CVS parents sometimes say that this disease can rob kids of their childhood. So we will control those triggers the best we can and then let her go ahead and run and play all the while crossing our fingers that things don’t break bad in the middle of the night. I also remind myself that I need extra breaks, I need to laugh with my friends and think about other things. 

Recovery day after late night episode.

While I can’t take all this away from Ellie, I’m going to do everything in my power to make it better. I don’t think this makes me unique. What loving parent doesn’t want to make it better? But I do think I have been introduced to an intensity of that fix-it feeling that I would have been ok with skipping as far as parenting goes. I have this strong desire to think of new ways of making her more comfortable: different medicines, medical bracelets, cooling vests, e-mailing teachers, role playing with her how she might tell a teacher that she needs to sit down, etc, etc.

This year our family has also been working to raise money for the annual CVS run/walk. I made fliers to hand out to all the first-grade families at her school and she labeled envelopes to attach to the fliers. Then she and I gave a little presentation to her class about CVS. This had positive repercussions that I hadn’t considered. For example, I was explaining to Ellie about a “cooling vest” (a little vest to wear on hot days or during hot activities. Cooling packs slide into pockets on the vest and it helps keep her body temperature down) and she said, “Well since everyone knows about my CVS now I think that is a really great idea. Now they know it’s just what I have, right Mom?!” I was surprised; it hadn’t occurred to me that she would be relieved that everyone knew about her CVS. I had been worried that she wasn’t going to like the extra attention drawn to it. My Eleanor is strong, smart and brave.

Motivated and excited.

Lastly, there is a sort of beauty to our interconnectedness, Ellie and I. On this Mother’s Day weekend I would even say there is something transcendent, spiritual or otherworldly about it. I guess maybe it’s cliché, but the longer I am a mom the more I understand that the love and connection between a mother and child cannot be compared to any other. No one can read Eleanor the way I can (Brian is a close second of course). I am the first to recognize when she is a little “off” and I have recognized episodes that were hours away from starting. She has 10,000 facial expressions and I can probably interpret 9,500 of them. I can usually recognize the difference between a normal sequence of sleeping grunts and groans and a painful sequence of sleeping grunts and groans. And when I hold her hair back while she vomits, speak softly to her and sit by her bed for hours when she is moaning and crying through the night—there is a fire that lights between us. We are connected in a way that is hard to put into words. 

I would pay all sorts of money, go through all sorts of hard labor, move away from all my family and friends, I would do pretty much anything to take this away from Ellie. That sounds dramatic but in the middle of a horrible episode it’s the truth; however, I am grateful that this disease has forced me to recognize the fire-y connection between my children and myself.  They are my everything, an extension of my heart.

More Support...

I joined a group on Facebook for parents of children with CVS and found a new blog written by another passionate CVS-Mommy.... check it out! It's great!

CLICK HERE!!!

Glass Half Full, Glass Half Empty

Sometimes I struggle with how to express my frustration and sadness with this disease. In some ways it's no big deal. It's like having asthma, something to be aware of at all times but it doesn't have to control your life. But other times, particularly when E is quite sick, I want to scream and cry.

Glass Half Empty:
CVS sucks so bad! No parent wants their kid to throw-up. It's sad, it's hard to watch and you never know when it's going to happen again (an hour? a day? not for another year?). Puking is THE WORST. Last Monday night Ellie had only been asleep about an hour when she came out to the living room in tears, holding her stomach. She made it to the bathroom in just enough time. It was A LOT of vomit. Our immediate reaction was that this was not a typical CVS episode and probably the flu. Normally her episodes happen much later in the night or in the morning. Normally her episodes that involve vomit--well, the vomit is usually a lot of bile and water, not everything she had eaten that day. Anyway we cleaned her up, changed clothes and gave her a zofran (anti-vomiting medicine). About an hour later she threw-up again. About 45 minutes later, again. Now, if you are a parent of a little one you know that vomiting 3 times in one night is hard, much less 3 times in less than three hours. But also, I was stumped. Why didn't the zofran work? The zofran has ALWAYS worked for our Eleanor. Could I give her another one? At this point she was also totally miserable. Asking me if this was going to happen all night? Begging me to make it stop. So at midnight I called her pediatric gastro doctor. He said he wasn't sure why it didn't work, maybe it was the flu...fever? nope. diarrhea? nope. been around sick people? not that we know of. Well, he said, "Well hopefully it will pass soon. As long as she is not dehydrated I'd rather she not go to the ER."

Between that midnight phone call and 2:45am Ellie vomited approximately 8-10 more times. It's like labor, the vomiting gets closer and closer together. Other things eventually happen too. Ellie goes from crying and wanting hugs to unable to even sit up to puke. I had to hold her up to vomit. She doesn't want to talk, doesn't open her eyes. And you can barely call it vomiting by the end. Her body is convulsing and some bile, a little water comes out. It goes from so sad to a little scary. 2:45 I call the doctor back. He says, "Yes. Yes, go get her fluids." So, I wake Brian, we lay Ellie in the back seat and off she and I go to the ER.

Not surprisingly the ER people have to ask me 2 or 3 times what she has. "It's called what? And is this an official diagnosis?" The head doctor comes in and is obviously open to the diagnosis and asks me what is ER protocol for Ellie, but I have no idea because since her diagnosis we haven't had to come to the ER, so I (in my stupid and exhausted state) respond, "I think just to get her to stop vomiting?"

The nurse might have been new, he certainly was NOT talkative or a kid-person. He had a lot of trouble getting the IV in, which, once again, was absolutely so sad to watch. Poor Ellie who had barely been talking or opening her eyes was suddenly crying and telling him to stop. Another nurse came in just as this nurse got the IV in. Ugh.

Fluids went in, another dose of zofran in her IV and soon enough Ellie was sitting up and asking to go home. The thing was, she still didn't look good. She looked sort of yellow. She said her stomach was "3/4 good and 1/4 not good." But it had been well over an hour, maybe two, since she had last vomited, I could barely keep my eyes open (I was at almost 24 hours of awake) and I knew that if she didn't sleep--deep, restorative sleep--she wasn't going to feel better. The chances of her sleeping there were slim. It was loud, really loud. In fact, I'm pretty sure an elderly man had a terrible heart event in the little area right next to us. So, we went home. Getting out of the car she asked to be carried (not like her) then when we got into the foyer of our building she began crying and started vomiting all the water and 2 saltines she had at the ER.

Because she is a total sweetheart, she immediately began apologizing in-between her hurling: "I'm so sorry Mommy! I swear I thought I was all better at the hospital!" MORE MOMMY HEARTBREAK!

And here is where I had my first full blown, 100% anxiety attack since the last time I flew on a plane... my skin started getting tingly and hot, I felt light-headed, I felt I could faint, or maybe I wanted to faint... it just hit me like a ton of bricks...

Her medicine didn't work. Her medicine didn't work. The ER fluids didn't work. Oh my God, what if she is going to be one of the poor souls I've read about online, who can't stop throwing up for days at a time?

Brian was awake now helping us. I told him I was having a panic attack and I needed to sleep for a few hours. Ellie asked me to stay by her. I told her I just needed 2 hours and then I'd be back. She agreed. I went into our room and cried and cried and cried.

CVS Sucks.

It passed. Ellie slept for about an hour and 45 minutes and that helped. She slept a little bit here and there throughout the day but no more puking.

Then that night she was up a LOT of the night with terrible pain in her lower stomach. She would sleep/snooze for 10-20 minutes and then cry out and call for me, "Mommy? It hurts! It hurts so bad!" And then sleep and then cry out again. That went on for about 3 hours. I began wondering about her appendix or a UTI or a blockage in her intestines. Who has that much pain without something else going on?

The next day (day three) the pains slowed down and by 3pm we went for a walk. Then the doctor called and said she should go to hospital for urine testing and x-ray to make sure the pain is nothing more than CVS. At 5pm we dropped Colin off at our loving, generous, wonderful, sweet, kind, helpful cousin's house and went to do those tests. At 7pm we picked up one very happy little Colin and went home for bed for everyone. At 11pm Brian woke me up (I was in Ellie's room) and said both he and Colin had thrown up.

Our Walk.

I liked the bench they chose.

I spent that night with a sick and groaning Colin. I gave Colin one of Ellie's zofran pills after he vomited and he did not vomit again. He was awake a lot but no more puking. He recovered fast and was asking for food all day the following day. Brian did not take a zofran and puked once more and had some other, mmm, stomach issues.

At first I felt relieved. 'Ahh! So it was the flu!' But eventually was back to wondering why didn't the medicine work for her? Why did it get so awful that we had to go to the ER? FOUR doses of meds that night for her and they did nothing, the ER fluids probably helped her from becoming more dehydrated but didn't fix it. Colin takes one pill and he doesn't puke again. When I finally came down with it early Friday morning, I took one pill and no puking. My poor baby girl has 4 doses that don't stop it. Scary, sad and confusing. I don't want the ER to be our new norm. In fact, if I never have to see her that miserable again I'd be fine with that!  Poor Ellie.

Glass Half Full
But, as far as we know we are not one of the poor families who are in and out of the ER and/or hospitalized on a regular basis. Going through last week gives me so much more appreciation for the families who haven't found medicine to stop the vomiting.

I. CAN. NOT. IMAGINE.

I really can't. Personally, I can't stand throwing up once or twice. I literally dread puking. So I honestly can't imagine what it would be like to puke so much that you end up in the ER... and then to know that you will likely have to do it all over again in a month or two or three. I have spent a good amount of my time and energy in the last few days thinking, wondering and praying that this awful episode was just a fluke, spawned by the horrible stomach flu and that her body just couldn't handle it. I feel selfish saying that since now I am friends, or at least phone call/facebook/e-mail friends with a few families who have hospital visits as a regular occurrence for their cvs kids. But, it's a selfish desire that I think we all share. Of course, of course we all want it to end and never happen again. That's why we are in this fight together. That's why it has been so helpful and encouraging to make other CVS friends online. We ask questions, give suggestions, feel bad for each other, and know just how it feels to watch your kiddo so miserable and know that you can't make it stop.

I have also thought a lot about kids with other horrible diseases this week, life-threatening diseases that land them in the hospital all the time. Little kids who have to do chemo and I bet feel the way Ellie feels during an episode but on quite a regular basis. I think getting a little peek into that world has made me even more sad for those families. Brian has a good friend from high school who has a little boy with brain cancer. I think of them so often and this past week I thought of them a LOT.

So in many ways we are so lucky. This is not a life-threatening illness and it can generally be managed. In-between these hard spells Ellie has a totally average, normal day-to-day existence.  Normally Ellie's medicine works wonders and I'm praying that hasn't changed, but if it has, we are connected to great doctors and specialists who will try hard to figure out how to make it better. We are so lucky that Ellie, while generally a silly, squealing, whining, girly 7-year-old can also be wicked, wicked brave and tough. She is easily the most positive person I know and bounces back into normal life with lots of smiles and hugs and a "what's next?" attitude.  And, we are so lucky to have so many family and friends who don't mind my scared text messages even at 3am and don't mind my LONG LONG rambling updates like this one! We are lucky to have my Mom who has a strong bond with Ellie and wants to know every detail and would drive down in a heartbeat if we really needed help. And we are lucky to have family (cousins) just around the corner who love us so well that they check on us each day during our hard times and don't hate us when we pass the flu on to their family (So, so sorry!!).

We have so much more good in our lives than struggles...but let me tell you, at 5am in the ER with your little one in such total misery-- it's easy to forget that "this too shall pass."

At the hospital doing tests. Ellie said, "It's nice to get out of the house, even if it is to go potty in a cup."

Mid-February to Mid-March: No Sleep.

I meant to write a part-two from the last blog post but things happened and none of those things included blogging.

I had been wondering about the amitriptyline, as I said in my last post. Eleanor the Great had been so well for so long (3 months) that it occurred to me that we might never know if/when we should take her off the medicine. But then... Starting somewhere in the middle of February her sleep began to take a dive. It started by just a bit of sleep disruption here or there and continued to get worse and worse. By the third week the child was NOT sleeping. I was up with her for 2-4 hours each night. At first she was able to get to school regardless of her bad nights, but by the third week she had a bad cold and wasn't sleeping and missed a whole week of school. Somewhere in the middle of zero-sleep-newborn-nights hell, it hit me that maybe because she was growing her medicine was not enough anymore. Quite the opposite than I had been thinking. Dr. Li, affectionately known as The Wizard of CVS on this blog, he mentioned last August that Ellie could be on a much higher dose of amitriptyline but we didn't change it at that time because it seemed to be doing it's job.

Sure enough, 4-5 nights after we doubled her dosage she began sleeping through the nights again. Ugh. Those were a long 3 weeks! But nothing like the week we just had...

CVS in the news!

Here is a video clip that a news station in Milwaukee did about CVS. The doctor in the video is the specialist that Ellie saw last year and will see again in October (he is also, in so many ways, a lifesaver!)


Click Here!

What We Have Learned

It has been a while since my last post. Why? Because I guess when things are going well I don't prioritize this blog. I don't know if that's right or not...I suppose it's not going to give me many loyal followers. The thing is, when Ellie is well my energy seems to flow away from worry and concern and on to more "normal" kid stuff. Anyway...

It's been a while. Ellie was healthy, well, "normal," without any major episodes from October all the way through mid-February. IT. WAS. AMAZING.

A moment I will probably never forget: Brian and I are cooking/cleaning in the kitchen (this was in January) talking about needing to refill Ellie's meds. I say to Brian, "You know, I don't think Ellie has stayed this well for this long in years." And we both stop what we are doing and Brian says, "Actually, I don't think she has EVER been this well for this long." I agree and we both feel a rush of gratitude.

That moment should have inspired a post. In my mind it did, a post about what or why I think she is doing so well just in case any other CVS parents are reading this blog. You know, maybe it would help at least one other family. But of course life got busy and "write blog post" kept getting pushed down on the todo list. Here is a version of what I would have wrote about:

1. Knowledge is key. Now that we better understand CVS and her Mito disorder everything has changed, but not really anything major. Her system is just super, super sensitive. Too much excitement, too much anxiety, not enough sleep, and encountering a virus--these are the big triggers. Kids with CVS should get AMPLE amounts of sleep. There shouldn't be big surprises (that is sort of sad, but not a huge deal if it saves us from an episode). Big anxiety, such as the beginning of the school year, being in a performance of some sort, and for Ellie we can include thunderstorms, sleeping alone, someone being hurt, etc, this sort of "stress" can kick off an episode. Another thing we learned this year is that becoming overheated is really hard on E. Also this year we are figuring out she needs to be reminded to drink enough water and have something to eat every few hours. 

How does this look in real life? Luckily Brian and I seem to have adapted pretty well in the last year and a half. Yes, that's a little pat on the back for ourselves but it hasn't been easy adjusting so I'm ok with giving us both a gold star! It has become second nature for us to steer clear of triggers. To the chagrin of many, we change and shift plans on a daily basis depending on how she seems to be doing that day or week. Normally we start the bedtime process by 7 in hopes of her being asleep by 7:30 or 7:45. We literally never know what kind of a night she will have so it's important that she is asleep before 8pm and actually that is probably too late. We almost always have to wake her at 7am. Other things: I carry water and snacks everywhere we go, as well as her meds. I send notes to her teacher asking her to remind Ellie to take snack/water breaks, I also give her teacher a heads up if she is in a bad spell so she can lay her head on her desk for a little break mid-day if needed. We have learned to make Christmas a very LOW key event, as low key as we can anyway--a very hard task when you have little kids at home. Traveling is super hard on Ellie so we are really careful (and nervous) whenever we go places. She eats poorly when traveling (oh yes, and eating--she has to eat really healthy, balanced meals all the time because she is so prone to constipation and inevitably constipation leads to an episode)... back to traveling--eating poorly, sleeping badly, extra excitement--it almost always throws her body for a loop. 

But the good news is that Brian and I agree that living with constant attentiveness to the balance that Ellie needs, well this is just how life needs to be. We both know how and when we have to adjust schedules, events, change things up last minute and we just do. Our close family and friends are super supportive and accommodating. For example, we had to have Brian's Mom's birthday dinner at 4:30pm last weekend because we were out in the suburbs and in order to get back in time for her to get to bed by 7:30, well, we basically had to have a late lunch or early dinner. There are no "just this once" moments for us because there could be special "just this one time" events almost every weekend, even more in the summer, so bedtime has no room for flexibility. I can absolutely promise you that this hardcore or strict approach for structure in our day--this does NOT come naturally to me, at all. See, so it's ok for me to give myself a gold star. :-)  When people don't truly understand the importance or reason for being so careful about keeping Ellie's life in total balance... it's then that I have gotten a few eye rolls or confused looks or "is an hour really that big of a deal?" But, such is life, right? She and Colin are my biggest and best job and certainly I'm going to move mountains to keep her well, so yep, for now an hour is a big deal.

I know that as she gets older and can make good choices about her time and energy, when she can read her body signals better, then we will be able to loosen up a bit, but for now... if you have a little one who has CVS, one of the best things you can do for them is provide super structure, tons of sleep time, good healthy meals and a relatively calm space to call home. Don't overdo it on vacations or after school activities and pay attention to their cues--dark circles under their eyes, hands on foreheads (headaches), laying their head down at mealtime, low-grade fevers, mood swings, low energy, pink cheeks, glassy eyes, holding their stomachs, not wanting to play or talk much, etc, etc.

2. Her medicine has made a huge difference!
I can't say enough about the difference her medicine has made for her. Ellie takes a lot of stuff, but it's all worth it. She started amitriptyline soon after she was diagnosed and this year she began Co-Q-10 and L-Carnatine. She also takes allergy meds and melatonin and daily vitamins and iron. I saw the most obvious change in her soon after we started on the Co-Q-10 and L-carnatine. It helps her energy, stamina significantly and it was a visible transformation over about a 2 week time span. If you have a little one with CVS or mito-disease, I highly recommend trying these two supplements for a month and see if it helps at all.

Ironically I had been feeling a little unsure of her amitriptyline. It's technically an anti-depressant but it's used as sleep medicine and body relaxants for all sorts of disorders. Actually my Dad took it for a while after a bad accident he had a number of years ago to help him relax and sleep. But you know, it's never fun to think of your little kid on a medicine for an extended period of time and in the last few months I was starting to feel like I had no idea if the amitriptyline was really necessary or not. This was also a result of her being so well for so many months in a row. I started thinking, 'How will we ever know if she doesn't need it anymore? What if she outgrows the CVS part of this disorder and how will we know to take her off the medicine?'    Then mid-February happened...