CVS is...

CVS is EXHAUSTING:

I am a tired mommy. This has happened in the past, I think I've blogged about it in the past, the times when I just want to yell "ENOUGH" and feel what normal feels like again. But for as much as I want that, I know Ellie wants it even more.

Since her stay in the hospital, Ellie's body has NOT gotten back on track. She has headaches every other day, stomachaches and more pain than ever before. The pain is sad, but it is easier on her than the vomiting. She talks about her symptoms and her feelings regarding CVS more than ever before and one of the things she has told me lately is that she would take the sharp pains over the vomiting any day. I get that.

CVS is COMPLICATED:

Last Monday night I was heading out the door to a much anticipated meeting (a good one that I was excited to go to) and Ellie started complaining of stomach pain. Sigh. My 13-year-old cousin was coming to babysit and while I didn't want to leave my cousin with a puking child, I also really needed to be at this meeting. Both of them survived the night but I decided it was time for a clean out. Ellie had only had one bowel movement in about 11 or 12 days. Think about that for a second. It blows my mind. But, it's just another way we know that things are not ok in her little body. Ellie has struggled with chronic constipation since she was a toddler. It is also a really common ailment for CVS kids. I think Dr. Li said something like 40% of kids with CVS also have irritable bowel syndrome. So, it's just another part of her "stuff."

So last Tuesday was clean-out day. Ellie calls it doing a "flush." Staying home meant missing St. Patrick's Day at school, being bored at home, and pooping your guts out all day long. Considering all of that she was a pretty good sport. I'm so tired of having to make her do things that aren't fun and aren't fair. So, first thing in the morning we went to Starbuck's in our pajamas (and Walgreens) to be silly. Then we did pedicures and watched a movie together... then the pain started.

CVS is FRUSTRATING:

CVS affects the whole family. We spent at least 4 hours of that day in the bathroom. Ellie sitting on the porcelain throne and me holding the puke bucket next to her. Poor Eleanor was white as a ghost, sweating like she was in labor and begging me to please let her cousin-bff come over after school even if she threw up. Colin was bored as well and laying outside the bathroom door waiting for his turn to have my attention, "Please Mommy, will you please play a game with me now?!" I was home the whole day and nothing got done--no cleaning or cooking or folding. AND, I was exhausted come bedtime. Frustrating.

CVS is so SAD:

After a long day full of pain and pooping, Ellie was asleep for maybe 30 minutes at bedtime before she woke up crying.

"Ellie? What's wrong?" ... "My tummy hurts. I hate this!" (Geez, I'm tearing up just writing this). So in went the constipating zofran, then 20 minutes later good enough to get up to go to the bathroom (again) and there we sat.

CVS is BONDING:

Ellie and I are tighter than imaginable. Brian wants to help, and sometimes he has to help so that I don't lose my mind, but when she is sick or in pain all she wants is me. For the hour plus that we were in the bathroom that night Ellie talked to me about all sorts of things. We even laughed--"Hey Mom, have you ever tried having a staring contest with a Beenie-Boo? It's so hard!"  She tells me her secrets, tells me about friendships at school and talks about what she wants to do when she is all grown-up. Recently, and this is new, she also talks about her symptoms--what it feels like, what she dreads, and inevitably we talk about how I promise to always be there if she has an episode. This is a hard promise knowing that at some point the particulars of life will get in the way of me being able to be with her for an episode. But for now I think her 8-year-old self needs the confidence and comfort knowing she will not be alone in her pain.

CVS= The PAIN is REAL

This was a post from a mom who has CVS (and now her child has CVS) from a parent group that I'm a part of on Facebook:

Just want to say.....to love on those kiddos who have abdominal migraines. I am experiencing my first since being a child and it is excruciating....worse than labor. Nauseating deep back and stomach pains and cramps that travel nerves all the way to neck and back of shoulders. Always believe the pain....it is bringing back memories as a child for me. It is real!

We are now at 5 weeks of major discomfort, on and off nausea, headaches and stomach pain (some vomiting, some diarrhea and lots of constipation). 5 Weeks. CVS is relentless. The doctor increased her main medicine a good amount a few nights ago. It takes about a week for the medicine to build up in her system and we are still waiting, holding on to hope. This morning I sent her to school and just as she was about to walk out the door she asked for one of her zofran. Heartache. 

She is so tough. So much stronger than me. She is resilient and happy and always wondering "what's next?" in life, despite bouts of pain and nausea. On days like today, I'm strong because she is so strong. On days when she is angry and sad and hurting, I dig deeper. But right now we are both tired, and praying this new dosage works for her. 

(and the nurse just called... and here I go to pick her up from school.)#cvssucks

Longest Episode, Longest Post

What a month!

I hardly know where to start. So here is a timeline of events to begin, and as an update for our family and friends:

I would say about the first week of February Eleanor's poor sleeping began showing signs of something being "off." I began saying to Brian, "I think Ellie might be out-growing her medicine." Those first three weeks of February I'd say we had at least 5-6 mini episodes (feeling sick enough and in enough pain that she needed to lay down and take a zofran). Her sleep was not great, waking up early in the evening almost every evening and more and more asking for her zofran.

Two and half weeks into February I called our GI and left a message with his nurse asking if we could try upping Eleanor's daily med dosage. I didn't think he would agree. I mean, would a doctor really increase a rather serious medicine dosage just because of a mom's suspicion that her kid has outgrown it? I never heard back from the GI office so I thought my suspicion was correct, that he wasn't going to change meds because of a worried mom. As it turns out I was wrong. I found out later, during our hospital stay I think, which at this point is still days away, that he had agreed to my request. He had noted in our last visit, in January, that although E hadn't gained much weight, she had grown more than an inch and a half since September! And he thought my suspicions were right on. I knew I liked him. Problem: the nurse never called back. He just wanted an EKG before increasing the dose, which is a normal check before upping this medicine because it can mess with your heart. I can't help but wonder if all this would have been prevented had we increased her dose that week. Ugh.

The third weekend in February we went to Grammy and Papa's house in Wisconsin. We had lots of fun but on Sunday morning Ellie suddenly felt quite ill, sat in the bathroom while I got her medicine, we did deep breathing until the horrible part passed, then she climbed into bed (at 9:30 in the morning) and slept for about a half hour. Very odd. After we drove home that afternoon she was back in her bed, saying her stomach hurt again. Another zofran. More oddness.

The next morning she woke up feeling sick, asking to stay home. More zofran that day. During days like this, she plays, watches TV, reads, colors...doesn't eat much and feels "yucky" off and on. We lay low but it's not like she is laid up in bed. We always think, 'well maybe she is better' by the time we go to bed. But alas...

That night, technically Tuesday morning, about 1am she woke up and quickly vomited. We did a zofran but less than an hour later she vomited again and so it went for the whole night, lots of vomiting. I tried all our big gun tricks from the wizard of CVS, Dr. Li: migraine medicine, sedation meds, etc. My poor girl was miserable and by 5am was begging to go to the hospital. Unfortunately (or fortunately, depending on which doctor you talk to) she is completely aware that the IV makes a HUGE difference for her. This isn't uncommon for CVS kids. I mean, each story, each child is different, but some kids just respond super well to massive IV hydration (there is other good stuff in those IV's too that they give to CVS kids).  Ellie has a fear of putting the IV in, what kid doesn't, and so when she is begging for it, that's a good sign for me to call her GI doctor and ask about an ER visit.

Side story: my poor husband lost his job in January. He didn't do anything wrong, the company is dying. No severance pay, a very scary time for us. He got a new job in less than a month! An employment miracle. Sadly though insurance doesn't kick in for 60 days after his first day of employment, and sadly Ellie's episode was happening on his SECOND DAY of his new job. Clearly he can't call in sick his first week of work and we had just signed on to some crappy, temporary insurance program because COBRA is so crazy expensive. Another way of understanding my mentality at 4am on February 24th: OH SHIT! OH SHIT!

It's not possible to put into words how generous and loving my parents are. I texted my Mom, who lives 3.5 hours away, at 4am:
"Umm, I'm sorry, I hope this doesn't wake you, but whenever you do wake up, I was wondering if you would ever consider throwing some clothes in a bag and coming down here. This is it. We need the cavalry. Ellie is in a bad, bad way."

Her text back about 2 minutes later: "Of course I can! I'm on my way!" I could write a whole blog post entitled, "What the hell would I do without my Mom?!" By 6:30 I had called my dear friend who lives in our building. Colin was heading over to her condo and Ellie and I were getting in the car to head to the hospital.  This is the first moment of this story where I experience a wave of relief and thankfulness. This is also the time when I began inundating my Facebook page asking for prayers and good thoughts--I have world's best FB friends!

I don't know if it's because of the time of day that we usually arrive, or just because they feel bad for puking kids, but we have never had to wait more than 15 minutes in our ER when Ellie is sick. AMAZING. More relief, more thankfulness. Within about 30 minutes, maybe an hour, the IV is in, and Ellie has fallen asleep amidst a whole lot of ER noise.

After a few hours she is clearly tired, still looks a little woozy, but smiling and chatting up a storm with anyone who wants to listen (she LOVES the special attention from the nurses and doctors). So we talk about going home and they feel it's best to check in with her GI doctor before that. He says he wants her admitted, to be observed for 24 hours before release. I knew this was a possibility. We waited for what seemed like forever (note: I had been awake since about 12:30 am and I was so hungry and so tired) and then headed upstairs.

Ellie didn't sleep at all that day in the hospital. Her anxiety (even when shown primarily through the ability to stay awake) is remarkable. They began her sedation drugs around 4pm and at 8pm she was just beginning to fall asleep! This is the part of the story, one of the few moments, when I was pleasantly introduced to Ellie on Drugs. Oh my gosh, too funny!

Ellie slept through the night, they continued the zofran and sedation meds every 4 hours. She had a few bites of toast and melon for breakfast and around noon her GI came to check on her. Unfortunately, he made the mistake of saying in front of her, "It's a common mistake to send CVS kids home early and have them need to return, but I'd rather make that mistake and get you home instead of have you stay in 'jail.' You know?" I agreed. I was a little nervous but she made it through the night so that must mean she is ok. Eleanor on the other hand, well, she done did lost her little mind after he left that room. I have NEVER (since she was a baby of course) seen her cry so much in one day. Whoa. Maybe it was the exhaustion, maybe it was the crazy medication she was on, but she did NOT want to go home yet. Her tummy still hurt and she was scared to death to go home and have to go through this whole thing all over again. Here comes another blast of super thankfulness...

Her obsessive reading was super helpful for a hospital stay.

Thank goodness the pediatrician who was on duty that day, on the pediatric floor, felt that while she agreed Eleanor should/could go home, she believed that it would be good for Eleanor to have some control over the situation. She agreed that Eleanor knew her body the best and in the end she agreed that if Eleanor needed one more night to recover, well that was ok. THANK GOD THANK GOD for loving, kind, thoughtful doctors. Phew! I mean, how many doctors out there sit down and contemplate the emotional/physical connection and the well-being of their patient in quite that way. And, thank goodness because at about 1am that night, Ellie woke up vomiting and in pain again.  :-(

That is how the next two days went. She would look better and better as the day went on, we would contemplate going home and then at night it would begin again. Another wonderful moment:

When we went to the CVS conference last summer we got to have a one on one meeting with Dr. Boles. He is sort of a famous Cyclic Vomiting and Mitochondrial doctor. Anyway he told me about an article he wrote for a medical journal that had the information needed for doctors to check and see if the medication that Ellie was on was at the right levels. I looked for that article and in the fall showed it to our GI doctor here. We increased her dosage based on that article and Ellie had the best fall/winter that she had ever had. Well, in the hospital, on day 3 I think, I shyly pulled up that article on my phone and literally handed my phone to the head pediatrician at the hospital, nervously, not sure if this would upset or offend her. NOPE! She scanned on my phone for a while and then went back to her office to print and read the whole article! And after she read it she said, "Thank you, that was really quite a good article, and helpful." MORE THANKFULNESS. Based on that article they decided her blood levels needed to be checked and they also decided to call the Milwaukee clinic.

By Friday morning the doctors here had gotten in contact with the CVS specialists in Milwaukee and a new medicine was suggested to add to Eleanor's nighttime regime. Also by Friday the new plan was for us to go home Saturday morning and do the nighttime vomiting management on our own. The sad and scary reality is that there are plenty of CVS patients who go days and weeks enduring this sort of episode. At least Ellie's pain and vomiting was just at night and fairly manageable with IV and meds. Some people with CVS literally vomit for hours on end with no relief. Anyway, we stayed on Friday night and acted as we would when we were at home.

Acting "normal" on Friday night, with Daddy.

No IV and no IV medicine, when she began feeling sick I would give her the abort meds, just as I would be doing at home. Friday night at the hospital was just to be sure that we could abort the vomiting on our own, without the help of her IV. Friday night was also the night we started the new medicine suggested from Milwaukee, and Friday night--no vomiting. Slept through the night. Of course, we have no way of knowing if it was the new medicine that made the difference, the increase in her other nighttime medicines or simply that the episode was coming to an end. However...

Saturday we went home, relaxed, went to bed and she woke up feeling sick in the middle of the night. I gave her a big dose of zofran and she was back to sleep within an hour.

Sunday we went to a movie, relaxed, packed her backpack for school. Sunday night she woke up as usual but didn't feel sick.

Monday she asked to stay home. Bad pain in her belly. Played, colored, read... but wouldn't eat lunch. Vomiting by 3pm. By the way, daytime pain and vomiting are so much less traumatic than middle of the night, for us at least. After being sick I gave her medicine and she was acting totally fine again by bedtime.

She hasn't vomited since. She has been tired on and off throughout the week, but no more vomiting and yesterday she looked and acted more like herself, more than I've seen in a few weeks. After Monday, the remainder of the week was spent slowly getting Eleanor back to school. In the next few weeks we will have to have a few follow up tests and appointments. An EKG to check her heart, a blood test all the way up at the Milwaukee clinic because there are no labs around here that will check for one of her blood levels that we need to check, and a follow up with her GI.

I have other more interesting posts in me, reflections and thoughts about this latest and longest episode, but here is the timeline. Glad it's done. Glad to be home. Hoping our next episode is a long way off.

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... 

Staying Strong

I am a tired CVS mommy. I feel badly saying that because it's only October 27 but my kiddos are sick, again. Colin caught another cold (first year of preschool... germ-a-thon) and he is a snotty mess. Every time he talks Brian and I instinctively say, "aww, poor little guy." It's that kind of cold, total congestion and a low, low grade fever. Anyway he passed it to all of us. Brian and I are doing alright but Ellie's body is fighting, fighting, fighting. I sort of saw this latest bad CVS spell coming but we pushed forward anyway, and, well, I feel like we dropped the ball, sort of. It's hard figuring out when to go ahead with plans and allow Ellie to be "normal" and when we should cancel plans (and then cancel them again and again).

Back-up, The story:
For Brian's birthday, which was in September, he asked that we go to this really fun water park hotel that we sometimes stay at when we go up to Wisconsin to visit his Dad's side of the family. The kids go crazy for this hotel and if we were being totally honest, Brian and I love it too. They have all the typical family friendly amenities in the rooms plus a super fun water park right inside the hotel, a deli/concession "restaurant" in the water park area, there is a place to ride horses, a babysitting service, a fireplace in your room, etc., etc. Our kids are in heaven when we go there.

Now the last time we were at this hotel, we surprised Ellie. We didn't tell her we were going to it and when we pulled in the parking lot she went crazy (excited, happy, squealing) and then suddenly grabbed her stomach and complained of pain. This time was not a surprise but it was a perfect storm for CVS. She and Colin had their flu shots on Wednesday afternoon (before I realized Colin was coming down with a cold) and while the flu shot does not give anyone the flu, it does appear to be rough on Ellie's system. There have been years when we didn't do the flu shot, or we just didn't give her the flu shot, but last year she had bronchitis a handful of times and then with pneumonia a few weeks ago... well, we wanted to help her build up any immunity that might offer any amount of coverage for her.  Pneumonia is known to be a possible "complication of the flu" especially for people with compromised immune systems--so, it's worth it for us to give it a try.

Anyway, she woke in the middle of the night with a fever the night of their shots, so did Colin. I kept them both home from school to try and rest and prepare for our fun family weekend, which we had already canceled and rescheduled twice. I didn't realize this (because I have been lazy about changing and hanging our "poop chart" in the kid's bathroom) but Ellie didn't poop the entire week last week (five days come Friday). So basically the CVS storm consisted of tiredness, immune system fighting the flu shot, total constipation and then total excitement.

Friday afternoon we arrived at the hotel around 4, got ourselves settled, ate a little dinner and headed down for some play time. At about 7pm we decided to head back up, Ellie's tummy was hurting by this point so we were headed for bed. But we went too far, we missed our parental cues. We were so swept up in the excitement (simply on behalf of the kid's happiness) that the CVS bulls-eye struck Ellie straight on and she had an episode like I hadn't seen since last Christmas. It went from zero to 50 in a matter of minutes. It was so sudden (except that it wasn't had we been paying better attention)--she was watching a cartoon on tv while in pj's and having a few before bed crackers, then suddenly tons of agony, yelling for me (I was in the shower), screaming (a new element for Ellie's pain reaction), crying, begging to hurry with her medicine, white as a ghost, dripping in sweat, shaking, shaking, shaking. I sat with her, half showered in my towel on the bathroom floor. I calmed her down, we did slow, deep breathing, lots of soft caressing of hair, turned the lights down, talked quietly and waited for the meds to kick in. She had a decent bowel movement and then we quickly, gently, quietly got her into the bed. She groaned and groaned that her tummy hurt (that's the migraine part--it's a deep, intense sort of pain, not like just when she is constipated or has some cramps, this is deeper and clearly more painful). I was shaken, and felt bad that we had missed so many of the cues--or at least we had decided to risk it and go ahead with the plans because the hotel wasn't going to let us push our non-refundable room back for a third time.

The rest of the weekend was cautiously fun, sort of, mostly... It's hard to have a lot of fun when you are constantly on guard. Ellie woke up the next morning in a much better place but was also getting Colin's cold. She didn't eat much for breakfast and we decided to skip the pool in the morning and just go to the ridiculously expensive game room instead. Colin napped, but Ellie was too excited. We saw Brian's Dad for a few hours (special Grandpa time) and then we couldn't push it off any longer and we brought them back to the pool that night. She did fine--she tried to keep her body calm, didn't do any of the slides (her idea/choice), just played and splashed, and Brian and I were very conscience of the time and getting them to bed by 7:30.

But, as it goes with our beautiful, bright, loving, sensitive, silly, loud, extroverted, intelligent, sweet girl--that episode was the beginning of a really rough week. Horrible sleep, mini episodes (the more normal kind--not so dramatic and painful) and a few days home from school fighting yet another miserable cold. What that means for mommy--literally 24/7 duty. Zero breaks. No putting the kids down and having an hour or two of "me time" or "adult time" or any time (with or without useless quotation marks!!!). And it can really wear on a person in the middle of the rough week or two. During this last bad week there was a moment when I realized I had been with a kid or both kids for 24/7 without more than a ten minute break for five days straight--I think I took the dog on a walk once in those days for about 15 minutes, and of course I showered. Other moms might be better at those long, sustained time periods--I am NOT good at it. I am NOT a good mommy when this happens. I need breaks to sustain my healthy/happy mommyhood-ness. Even just two hours at night would do it.

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I never published this post. Things got better and I just forgot. Here is what I've come to realize: Ellie's health swings back and forth. She has a few good weeks (so good that I forget how trying the bad weeks can be) and then she encounters a virus or over-stimulation/exhaustion for some reason and has a bad week or two and then back to a good few weeks. In the winter is seems like this pattern is much tighter, meaning there are less good weeks and more bad weeks. I think it's just because of the flu/cold season and being around germy kids all day at school and less sleep and less sunshine etc., etc. In the summer we can go for almost two months without a bad week. So, I guess what Brian and I have to do is figure out ways to keep ourselves strong so we can remain sane during the bad weeks.

But, life is always moving, never simple, always full--for better and worse. Brian is in the middle of a bad week(s). I had semi-major stomach surgery and can hardly walk much less lift anything or put a kid to bed or much of anything else. My Mom is here helping thank God and she is working super hard, she basically is doing everything I would be doing. But poor Brian has taken a beating. He has put the kids to bed every night (he wants my Mom to have that mini break to sustain her) and often has had to get back on to his computer/phone calls for work after their bedtime. The last two weekends he has pretty much been in charge as well--because I am stuck in a recliner chair, healing, healing.... And now... it appears... Ellie is about to start a hard streak. She is sick (another cold) and has been sleeping AWFULLY the last few nights. This means, zero breaks for Brian. Family is stepping up. My brother and his GF babysat and we went out to a movie on Sunday (that meant 2.5 hours kid free/work free for him), but from experience I can tell you that when you go 24/7 for even 3 or 4 days straight, you start to lose your sunshine.

I don't even know why anyone would want to read about all this--as one of my brothers said, "it's just life." But, for us, it's CVS life and it can be tiring. The unpredictability is the hardest part I think. For me, writing it out is healing/freeing. I suppose a post such as this one is more of a complaining diary entry than a blog post, but I think I'll "publish" it anyway. Because there is just something about writing it down and sending it to the universe--wondering if anyone has felt this way, wondering if any other parent feels this pulled down now and again, wondering if this vent session might bring a feeling of solidarity to some other family with a child who has CVS or mito-disease. Here's to hoping...