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.

(INSERT FAKE PAGE BREAK HERE)
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...

Pneumonia and Doctors Who Don't Believe

If you recall from the last post, we started off the school year “swimming in hope.” A lot of people liked that image. I got a lot of comments about it. Well, I’m still feeling hopeful but it’s October and apparently it’s time to get out of the water.

The first month of school went very well for Ellie. She did pretty well with sleep, although that is with one of us sleeping in her room with her. We do this because we have not conquered her nighttime anxiety and if she wakes up and sees one of us sleeping there she will go right back to sleep. If we aren’t there it often causes middle of the night drama so this is the easiest solution right now. At least she is back in her own room. During September she was also eating well and it has seemed like the fancy vitamins have helped increase her overall energy throughout the day (which has been sort of miraculous to witness).

At the end of September Ellie had braces put on. Then a day later she went to bed with a fever, the beginning of a long illness. These two things don’t have anything to do with one another, the braces and the illness I mean, but I thought it was pretty funny when I found out that a few first grade friends thought that she ended up missing a week and a half of school because of her new braces. Don’t worry kids, braces will not cause that much trauma, I promise!

She only has to wear this face mask part at night.

The first three nights of her virus she woke up in the middle of the night with CVS troubles. At least this time I knew it was a virus of some sort triggering her CVS because of the non-stop round the clock fever. During a typical CVS episode she will spike a fever (usually 102) but it doesn't last. So if a fever lasts I know she is fighting something. I knew it was CVS, and not a stomach bug, because of the timing, the way it came on, how long it lasted, what she looked like, what she complained of, the intensity of it starting and the quick end after meds…and of course the desire for waffles the next morning.

On day 3 of a fever I decided to bring her to a weekend walk-in clinic. There had been 2 or 3 notices of strep throat in the first grade the previous week and Ellie said her throat was killing her. The tests came back negative. So, more waiting, more calling it a “bad bug,” more resting and more middle of the night CVS episodes. On day 5 (exhausted mommy, miserable Ellie) we went to our pediatrician’s office but (of course) our regular pediatrician wasn’t working and so we got the doctor who basically doesn’t believe in CVS. He took another strep swab, looked her over and told us, “it’s just a bad bug.” Poor Ellie was so miserable, and by this point she had basically stopped eating all together and would only drink when I sat there and yelled at her to do it (harsh but better than an IV in the hospital). Those are the parenting moments that really suck. I should have been yelling at the pediatrician, not poor Ellie. 

 

The next day Ellie developed a nasty sounding cough and so on day 7 of the high fevers we were back in the office and that same doctor was hurrying out of the room to get a blood-oxygen monitor and telling us that Ellie had pneumonia. Ugh! It’s so frustrating. I don’t think it’s anyone’s fault necessarily, I know doctors have to be careful with antibiotics but come on, this kid has abnormal health issues, couldn’t we have tried an antibiotic on day 5 of the high fevers? Unfortunately this is the doctor who doesn’t seem to have a high opinion of CVS or mito-disease. He isn’t a bad guy, I think he is just old school and probably hasn’t read up on it. He also doesn't seem to enjoy children. At all. I'll just let you fill in your own commentary on that part. In the end it's Ellie who suffers the consequences. She missed a week and a half of school (7 days I think). No hospital visits though. I feel proud of myself for being persistent. My guess is that had we waited a few more days we would have ended up in the hospital, if not for the pneumonia itself then perhaps because Ellie had stopped eating and was hardly drinking. Within 48 hours of the antibiotic she was a new woman, although we tried to take it easy for a while.

Colin caught the same virus and was sick about a week after Ellie first got sick. A perfect example of Ellie's poor immunity--he had a very high fever for about 24 hours, slept a ton, tummy hurt but no vomiting and a day later was back to totally fine. 

My main thoughts about this experience... how strange, confusing and frustrating it is to have a child who has a disorder that is not well known, and for doctors (who I generally highly respect) to talk to you like you are overreacting or something. After the third or fourth night of CVS episodes I told the doctor that I thought her episodes were subsiding. His response, "Good. That part of the virus has worked itself out then." GAH! So frustrating! I am unable to do this because I have two bouncy, loud, silly kids with me every time we are there, but one of these times I just want to say, "Can we just have an open, honest conversation about this? Because I've observed my kid 24/7 for the last 7 years and I think these other doctors are really onto something. They have been able to describe her symptoms before I have even told them about her. They have provided medicine that has provided enormous amounts of relief for her. Please explain why you are so resistant to this diagnosis." 

I am not ready to switch pediatrician offices quite yet. This office is very close to our house and their actual pediatrician has been great. She has called and had long, extensive conversations with me late at night and on weekends. She genuinely cares about Ellie and is totally on board with everything CVS. Any other readers out there ever experienced a doctor who just plain disagrees or is skeptical of CVS or Mito-disease?

Seeing the Wizard

We finally got to see the wizard! The wizard of CVS!

We went a week ago today and I think I've been putting off this update because I needed to let it all sink in first. Also because I don't know how to organize both the information we got as well as my thoughts about it.

Reader's Digest Version:
1. We met with the doctor who is the head of the clinic and the guy we affectionately call the "CVS Wizard" for almost two hours, then we met with a developmental psychologist who only works with CVS patients and their families for another hour and a half. All in the same room... let me just say, if my Dad hadn't driven down to be with Colin during all this I'm not sure what we would have done. Thank goodness for loving and dedicated grandparents!

2. Ellie has the following diagnoses: CVS, abdominal migraines, IBS (irritable bowl syndrome), a sleep disorder, general anxiety disorder and a mitochondrial disorder. Having him list all those things and say it all out loud like that was a little overwhelming but in reality, calling it by real medical names doesn't change anything we already knew, simply affirms that Brian and I aren't crazy, overly-obsessive parents who are just looking for something to be wrong with their kid. In fact, on more than one account he praised us for our intuitiveness regarding Ellie's health issues and needs (and during those moments I got teary). 

3.  The stats are something like:
80% of CVS kids also have abdominal migraines (truly a migraine but in your abdomen, pain) .
55% have sleep disorders
30% have generalized anxiety
(Wow! That made me again feel affirmed, not crazy, etc, etc)

4. The abdominal migraines and the mitochondrial disorder stuff was the most interesting and helpful for me to hear. Up until that point I thought that CVS and abdominal migraines were basically the same thing. But Dr. Li said that in fact they are different, and let me tell you, it totally explains our spring last year! More on that in the extended explanation below.

5. The mitochondrial disorder was total news to Brian and I. BUT, last year I had read about a child with CVS and "Mito Disease" and immediately thought that it that sounded like Ellie. Then when I read more about it (at the university of google) I put it out of my head because it all seemed so extreme compared to our Eleanor. But in fact, Dr. Li is 99% sure that she does have it. Remember, he has studied every medical test Ellie has ever had and had us fill out a thick packet, write a five page health biography, talked with her doctors, etc., etc. He said she meets all the marks for it. The only way to truly diagnose it medically would be to take Ellie to the hospital the next time she has an episode, while she is vomiting (give her no meds), to get her blood and urine tested. It has to be taken while the episode is happening... NO THANK YOU! We'll take his word for it!

6. What all of this means is twofold: Part One--More meds and some real fancy (read: expensive) vitamins. Part Two--continuing to adjust our day to day to find our new normal so that Ellie can stay well and be an active participant in all the normal childhood stuff (school, extracurricular activities, sports, etc).

Here is a great link (pdf) all about the Mitochondrial disease aspect in kids with CVS: click here!

That is the end of the reader's digest version. Read on if you are more curious and if you don't mind a little emotional mother stuff...

Here is my quick explanation of the article above:
Basically what this means is that Ellie's body can't always create the energy she needs. Mitochondria are the things inside our cells that produce energy and Ellie's don't function like they should, or as well as they should. What this means for Ellie (how we've observed it in Ellie): She gets tired more quickly than other kids (lately her tiredness shows itself in major mood swings and lots of laying on the ground or head down on the kitchen table during meals etc.,). She gets pale and lethargic as a child would who is getting the flu or something like that, but no virus or flu ever come. She has a lot of pain in her stomach, she is constantly fighting constipation, she very quickly overheats, last year she had a lot of general exhaustion and stomach pain in the mornings in particular. Because of all this she needs food at more regular intervals, she needs to maintain hydration more than other kids her age, she is a sitting duck for infections and virus', she needs to sit down and recover from physical exertion quicker than other kids and according to the doctor physical exertion doesn't feel good like it does for you and I, she needs a significantly greater amount of sleep than kids her age, and on and on.

"But what does this really look like? I mean Ellie seems ok to me, I don't understand?"
Here is a perfect example of what this actually looks like:

Her first day of school this year: She was obviously nervous and excited (triggers) and didn't sleep well because of that (trigger). It was at least 90 degrees that day (trigger) and I didn't know what parts of school were or were not air conditioned. I didn't know if her teacher would let them keep water with them, or what or when they might have snack. I felt nervous but I didn't want to be *that* parent--the overly nervous Mom. In the afternoon I succumbed to my nerves and called the school. There was an air conditioner in her classroom and they would have her sit out for gym that day. And thank goodness because when I picked her up from school she was a hot mess! She was pulling on me, whining, begging to go home, sitting on the grass, laying on the grass, dripping with sweat, flushed and eventually crying. Now here's the thing, that's not unique for a little kid at the end of a long, hot day at school. So as her Mom (and previous to our appointment with the wizard) I felt so conflicted. I was trying to talk with parents after school and she was interrupting, whining and even laying on the ground acting seemingly quite dramatic--I was annoyed. We walked around to the back of school with the other families, where the playground is, because Colin wanted to play for a few minutes and I wanted to chat. Most of the kids were running around playing despite the heat (so it was warm, but not debilitating for most kids). Ellie was being "rude" to her friends. Not responding to their calls to play, not giving anyone eye contact... she was shutting down. So we were the first to leave and only after a few minutes. When we got in the car she pretty much stopped answering my questions and looked like this:

When we got home she said she wanted to drink ice water and lay on the couch the rest of the day...and that is pretty much what she did. Now that we have a medical name for it, I feel so much better. I feel like a weight has lifted. After school that day I felt embarrassed and annoyed with Ellie and super confused about when (as her Mom) I need to tell her to suck it up and when I need to "give in." On that day and a LOT of days last school year, I felt like, 'what is up with her? Is this all from poor sleep?' It always felt (feels) like Ellie was on the verge of being what I like to call "overcooked." In various situations other kids seemed ok and she was totally dragging (physically, emotionally, or both). That is how I ended up reading a little about Mito Disease last year. It was in the spring and I was feeling like, 'there has got to be something more to this.' At least once a week she would wake up with bad stomach pain, asking for medicine. For a while in the spring she was missing school once a week and I had major trouble explaining exactly why. She wasn't necessarily throwing up but she was exhausted, in a lot of pain and often had totally unexplainable fevers. Our family would pass a cold around that would last about a week or so, Ellie's cold would hang-on for weeks and weeks and eventually she would need antibiotics and an inhaler.

I was certain Ellie's very sweet kindergarten teacher (along with a lot of other people) thought I was a crazy Mom, one of *those* moms. Luckily for my Ellie, and yet another lesson in all of this, I didn't care enough about what other people thought to NOT follow my gut instincts. And luckily for both Ellie and I, her kindergarten teacher was GREAT! She believed me, she listened and was supportive. We were late all the time for school, she missed something like 30+ days of school last year and I had no name for any of it except that she had "CVS." But you see, CVS would not explain all this other health stuff, it is only a description of her vomiting episodes... So, if she isn't actually having a vomiting episode, then why isn't she in school? or at the birthday party? or at dance class? I just figured it was Ellie and too bad, I am first and foremost in charge of keeping her well so I'm listening to her body, I'm not going to push it.

And now there is a name for it!!! I am thrilled. There isn't much we need to do differently now that we have this new information. We are working on the sleep stuff (patch adams of dentistry!), the constipation stuff is a constant vigilant thing, we have plenty of meds and we were already trying to be careful about scheduling for Ellie. The psychologist talked a lot about families with kid's with CVS creating a careful balance of mind and body--sleep, excitement, over-exertion, good nutrition, etc. Not much (or anything really) should be a surprise for Ellie. We should talk about things well in advance. Things in our life should be slow, steady and deliberate whenever possible (that is going to take some adjusting for me--I prefer spontaneous, crazy and last minute, so does Ellie actually. With coaching from Brian, I'm working on it). Ellie and the psychologist talked a lot about the "stress monster" and how to stay in control of her own body. We do deep breathing exercises every night and positive imagery stuff before bed. The end goal of all of this is that Ellie does NOT have to miss out on school or sleepovers or dance recitals or any other normal kid stuff. The more we practice careful, healthy, balanced living and the more we teach her to be aware of her triggers, the more healthy she will be.

We want more of this:

And this:

And LESS of this:

And let me tell you...WE ARE OFF TO A GREAT START!!! She had her birthday and birthday party in August with no episodes! She had a rough first day of school but the other days seem to be better and better and no episodes! She is happier and more full of energy than I have seen her in well over a year. As far as Ellie's health goes...I am swimming in hope! Dr. Li said that summers are usually the best time of year for CVS kids but now that there is a real reason, a real name to all of this...I feel ready for this year. Plus, Ellie is on some good medicine (lots) and lots of vitamins that will help with the energy component.

Thank goodness for the Wizard and his team! It was a great visit.

Summer Update

Is it possible for me to do a "quick" update? Hmm...

Beach Diva!

Ellie is doing great! She had one episode in the last few weeks but it was without any puking and was over super fast. It was also from being car sick and/or super hungry and/or super exhausted. Three things that CVS kids are hyper sensitive to. Well, all kids are probably sensitive to these three things but not all kids will end up puking their guts out over and over every few minutes for hours on end risking dehydration and possible hospitalization...therein lies the difference between a "sensitive tummy" and a CVS kid.

I feel less anxious about her general health than I have in a year! It's a great feeling for all of us. She worries less too. I think she knows now that medicine will help her (we are super lucky in this respect), and that we will always make sure to have her medicine nearby and that there are lots of other kids in the world who have this same strange issue so it's nothing to be ashamed of; all things that help a 6-year-old feel secure.

There are not many blogs where it seems appropriate to talk about poop, but alas...

 POOP
We now have a "Poop Chart" hanging in our bathroom. Nothing but class at our house! I am beginning to think that Ellie's constipation issues are a major trigger for stomach aches and CVS episodes. Battling constipation has been consistent since she started solid foods as a toddler. Right now we give her a cap-full of Miralax at least once a day, sometimes twice a day. When we slow down on the Miralax her pooping slows way down too. In fact, last night we were up a majority of the beginning of the night with stomach aches, I was naturally worried about an episode but I think it was constipation. Now that we have the poop chart it has been easier for me to keep track. If we suddenly go 3-4 days without a star on the chart, I know we need to step it up a bit (water, fruit, veggies, sleep, rest, and Miralax). Anyway....Her GI doc says it could easily take a year or two of regulating her pooping with Miralax before her stretched out colon is back down to a healthy size.

Side Track
Have I mentioned how important it is for her to rest? There is a big difference between rest and sleep and I think this is where we get some poor judgement from other friends and family. It's hard to explain, but if she does too much in a day or over a few days, her little system just shuts down--tummy aches, pale, lethargic, headaches. I have literally watched people roll their eyes at my concern or when I say we have to leave at 6pm to start getting ready for bed...thankfully this whole journey has toughened me up and it is pretty darn easy to put the judgement aside and do what needs to be done to keep her at her best. Anyway...

 SLEEP
I suppose summer sleep has been good for all of us too. We are not constantly trying to get our day completed by 7:30pm, feeling nervous that anything later could bring on an episode. During the school year it is a game of balance and timing. I always felt like we were racing to get everything squeezed in before 7 or 7:30 (Daddy doesn't even get home till 7) in hopes that E would be actually sleeping by 8 or 8:30 and then we spent a good portion of our own evening hoping it was "good" night for her (waking only once or twice constitutes a good night for her). Up until last week we have had Ellie in our bed at night and her sleep has been great. She is in bed for about 12 hours and while she still wakes up throughout the night all she has to do is turn over and look at us and she falls right back asleep. When she is in her own bed the nighttime waking makes her nervous and causes her to be VERY awake and have even worse sleep including often being awake for over an hour at a time, hence us letting her sleep with us for a while there. This past week we started making her start in her own bed at bedtime. If she stays in her bed until 1am she gets a prize the next morning. Next week she will have to stay in her own bed till 3am to get a prize. That hasn't happened yet so...

She has also started sleep walking. Brian and I don't know if this is a reaction to the medicine she takes at night (amitriptyline) or if it is just a part of Ellie's sleep journey. So far the sleep walking is no big deal. It is sort of creepy to witness but we just walk her right back to her bed and she doesn't remember it the next day. She also mumbles incoherently during it--so strange.

Ellie taking over our bed.

Ellie's sleep study came back exactly how we thought it would. A bit of apnea and also too much rapid limb movement for a 6-year-old. The apnea is why she is seeing the Patch Adams of dentistry and why she wears her retainers. The sleep wizard also wants to try her on some intense medicine for 3-6 months to see if it will reset her neurological patterns during sleep. The medicine comes with lots and lots of potential side affects. All of them are "rare" but all of them suck--mood swings, pain, even vomiting. We have had enough of that thank you very much. Our GI doctor is talking with a pediatric neurologist to see if there is a different route we might try first. Until then, we keep playing the sleep game in our house.

Lastly, I made another new CVS-mommy friend on facebook. Her poor little guy has had a really, really rough go of it. He is not quite 3-years-old and has terrible migraines and then the CVS symptoms kick in. He doesn't always have luck with the anti-nausea medicines. So even after they give him zofran his little body just keeps vomiting/dry-heaving bile over and over. While I write this generally happy blog update I am reminded of what an UGLY syndrome CVS is. I mean, he is not even 3-years-old and he has migraines a few times a week and the CVS episodes about once a week. AND, he is the youngest of 3 little ones in their family. My whole heart goes out to that warrior mommy. He started getting sick about a year ago, and (ah-hem, if I do say so myself) his mommy is a lot like me--not willing to "wait and see." They are working hard, also with a myriad of doctors, to get him the best treatment possible. But for now she is a full-time nurse, advocate and mommy. I'm sending her and her hubby all my good thoughts. She and I both agree, there is so much power behind just having another parent to talk with. Two years ago I had never even heard of CVS, now I am friends with (or virtual friends with) a handful of CVS-mommys. And thank god we found each other!

These last two pictures are a great example of what happens whenever we are at a doctor appointment for Ellie. This was at our last Patch Adams dentist appointment. Colin will immediately raise his arm to Ellie by way of introduction and tell the doctor, "This is my sister, Ellie Granstrom," and then b-line for the nearest chair and either sit under it or on it with his head down (usually begging for the ipad). He is such a funny little guy! Despite Ellie constantly trying to calm his nerves, he is deathly afraid of any sort of doctor and wants nothing to do with any of it.


Nope. It is not possible for me to do a quick update. Oh well.

Whirlwind Week!

Last week was a little over the top in our CVS world.

We started with an ultra sound. Why? Because it is one of the tests that Dr. Li would like before seeing us. All of these tests are simply checking to make sure that her vomiting, nausea and stomach pain during her episodes is not due to something besides Cyclic Vomiting Syndrome. So, for example, during the ultra sound they measured her kidneys, took pictures of her spleen and bladder etc. I thought (when will I learn??) that this would be a very easy test for Ellie. Naively, I also thought it would last about 15 minutes. It was not and it did not. For whatever reason Ellie was not a fan of this test. She had to fast the night before and was probably hungry, tired, and her silly mom told her it would only last 15 minutes when really they took pictures for well over an hour. Oops. Also the first technician who brought us back did some "practice swipes" for a while before the actual technician came in and she was pushing too hard and my inner mommy bear almost came out to roar.

What would our life be like without the ipad?

 Then the next day was Ellie's sleep study. This was Ellie's 3rd sleep study. She had one when she was 2-years-old. That is how we found out she had sleep apnea. Before her surgery, which was just after her 2nd birthday, she had never slept for longer than 4 hours, she didn't have more than 10 words that she sometimes used (had never said "mama") and host of smaller issues. She had surgery to remove her tonsils and adenoids. After her surgery B and I were so blown away with the difference that we thought all was well. I'll never forget the nurse on the phone telling me that after her surgery she should not be waking up *at all* at night and if she was still waking then they would like her to come in for another sleep study. I turned it down. I didn't want to put her through any more. Oops.

About a year ago after seeing an allergist, a child psychologist who specializes in sleep and an ENT (because very rarely your adenoids can grow back), our regular pediatrician sent us to get another sleep study done. That test showed too much limb movement for a child of her age and (I just learned this recently when the wizard of sleep reviewed this particular study) on a scale of 1-10, Ellie's apnea was about 1.5. In that scale the interpreter of the sleep test will write that she has no apnea because that is such a tiny amount relatively speaking. But, the wizard of sleep says that's not good enough for a 6-year-old. A child should have zero, not 1.5. Even a bit of apnea in a child is a hint at why there is poor sleep. Anyway, the wizard of sleep wanted her to have another sleep study for various reasons.

Here are pics from sleep study number 3. None of it hurts, but it is very uncomfortable as you might imagine. There are a bundle of wires on your head, chest, legs and stomach, a tube in your nose, etc. Then you are supposed to sleep. Right.

Unfortunately, Ellie was a tiny bit congested on the day of her sleep study. I called the nurse and they said to come in anyway. But by the time she woke up the morning after the sleep study it was clear she had a nasty cold. We are really hoping that didn't mess up the test too much.

Cute side story: We were woken up in the hospital at 5:30am after falling asleep late. Ellie usually wakes at 7 and she had a cold. BUT, she was begging to go to school that day because "Q" and "U" were getting married. In case you didn't know, Q and U are often found together in words like QUACK and QUIET. The kindergarten was having a wedding with a reception and everyone was supposed to come to school in formal attire. So cute! Ellie did not want to miss it. So I let her go to school (after going home to scrub the stuff off her head). Here she is on the ride to school. Colin said, "Mommy, Ellie is crashed out."

Then Saturday morning was the CVS walk that we have been looking forward to. My hope was that we would meet a few other families with little kids that had CVS. We did! It was a great walk. Not super big but I guess that's what happens when it's a "rare" condition.

The red t-shirts were for the "sufferers" and the rest of us wore blue. Some of the families and friends put team names on the back of their shirts. One team was "The Puking Pickles." My Dad and I had fun trying to think of our team name for next year. Who wants in?!?

Squinting E and her new CVS buddy.

Thank goodness, Ellie made a friend! We were so excited. At first I thought she was much younger than Ellie but in fact she is just small and Ellie is just tall. She and Ellie had a blast and they are both kindergarteners. Her family lives in Wisconsin but we might try for a day trip sometime later in the year. Next year we will be inviting as many people as we can, but this year I wanted to just experience it and try to meet as many other parents and kids as we could. My parents came down for the walk which was amazing and wonderful. They helped with the kids so we were more able to meet and really talk to other parents. Their generosity and willingness to do just about anything for their kids and grandkids is remarkable, beautiful, amazing...

By Sunday our little family was EXHAUSTED. What a week!

Because I am already so long-winded, I did not include the part of last week that included some major health issues with Bella the Beagle...EXHAUSTED. So, when I got a phone message on Monday saying that Ellie's ultra sound results were in and they wanted to talk with me at "my earliest convenience" I almost lost my mind. I had just told myself (and all of facebook) that it was going to be a better week, a calmer week, a more productive week...a glass half full sort of a week. Ugh! When I finally got a hold of the nurse she said that the images of the bladder suggested there could be an infection or something of that sort. Something looked off. So, I scooped up Ellie from school (as well as the girls I babysit for and of course Colin was along for the ride) and we all went off to the doctor's office so Ellie could pee in a cup.

**Trying hard to maintain my goal of--glass half full--**

The urine results were normal and they sent all of those results up to Dr. Li's office.

Monday night Ellie had a hellish sleep. I don't know what was up with her but neither she or I slept much that night. EXHAUSTED. Then on Tuesday I picked up Ellie early from school and we all trekked into the city to see Dr. B, the sweet and sunshiny sleep dentist, to pick-up Ellie's retainers. Again, because I am either stupid or eternally hopeful, I thought this would be an easy-ish appointment. Ellie was excited to have retainers, I didn't think it would take long at all, etc, etc. Wrong, wrong, wrong. Ellie was scared and it sort of hurt to get them put in and adjusted and all of that. EXHAUSTED.

E realizing this might not be so great after all.

Ellie has had a rough few days since then. She is getting used to the feel of the retainers which we are not supposed to take out at all. We can take them out once a day to clean them, that's it. As it turns out, this is not going to work for her. She is the pickiest, slowest eater I have ever known...and that is without retainers. Trying to eat with retainers has caused some serious stress for both she and I this week, so when she eats at home she will pop them out and set them on the table until she is done. I feel like we are totally breaking the rules, but I can only handle so much at one time. Ellie's weight continues to drop. She still isn't pooping with any sort of regularity (hasn't pooped for four days now) and so not eating just isn't a possibility right now. She also has a really hard time talking with them in, but that has improved quickly. Lotta drool!

This is the longest "update" yet. As usual it feels great to get it all out there--thanks for "listening" and loving us while we keep on keeping on!

GLASS HALF FULL--- Through all of the craziness of the last two weeks, Ellie hasn't had one episode. Now that is a full glass!

The Clean-Out

The office of the wizard of CVS finally called and would like to see us! This is the good news. We hadn't had an abdominal x-ray or ultra sound in about a year and the Wizard wanted those to happen before we went up to see him. So, we did. Here we are waiting for Ellie's "tummy x-ray" last week. She found this super cool app and we were having a lot of fun playing with it... (I think it's tocatailor.com)





On Monday I was feeling good. I was finally feeling like myself again (post flu and bronchitis) and both kids have been healthy and quite happy lately. I had this moment where I stopped and noticed how good things were. And mostly I thought...

It's been at least 3 weeks without stomach complaints or an episode. This is a big deal and I should pay attention. What is different? What is going well? She is sleeping pretty well, albeit in our bed. Flu and cold season is probably heading out, no encounters with virus'. Perhaps her anxiety about 1st grade is passing? Hmm, what else?

Colin snuggles w/S

Then I thought maybe I should blog about things being really good. I don't want this blog to be filled with negativity, perhaps a post such as-- Hey ya'll, things are great!-- was in order. But I didn't, because when things are good, when life feels generally sunshiny, there "isn't time" to blog. When things feel generally a-o-k and Ellie seems to feel good, then I am just busy being a mom, a sister, a daughter, a wife and a friend. In the last week or so, my brother (who has been living with us for a few months while he transitions here for work), his girlfriend who also moved here from far, far away, well for a variety of reasons she moved in with us too. We love her, this was good news for everyone. We also had Ellie's first-ever dance recital and it was a blast and she did great (and she had NO episode before or after--huge success!). And all the other little glorious moments, like Colin's first-ever shower (a big deal for a 3-year-old!). When things are generally sunshiny, I don't feel that pull to blog or journal or track (food, calories, episodes) or any of that. I feel a pull to just enjoy and keep up!

Giggly, happy dancer

 

"Mommy, I a BIG boy now!"

Anyway, on Monday, a few hours after my big ah-hah moment, I got a call from the nurse at Ellie's GI doctor's office. I am not a huge fan of this particular nurse and this phone call solidified my, mmmmm, well my desire that she not be a nurse in that office. She quickly said that the x-ray from last week showed that Ellie was filled to capacity with "stool." Her intestines were as full as they could be and a total clean-out was a must. Without giving me a second to digest this she said, "So if you can get a pen and paper I will give you the details of what the doctor would like you to do."

-buy 2 bottles of Miralax, one is for the clean-out, one is for maintenance afterward.
-buy a 64 ounce container of gatorade
-buy a package of Ex-lax, the chocolate chewable kind
-poor one whole bottle of miralax into the gatorade, let disolve, have her drink 8 ounces/30 minutes until 75% of it is gone.
-after that have her take 2 of the chocolate Ex-lax chewables

And then she said, "Basically we are going to give her the worst diarrhea of her life. Our goal is for her to have diarrhea until it comes out clear. It will probably take one or two days."

And just like that our conversation was over. And the kids were still playing in the park and the warm summery sun was out and I had to give my daughter "the worst diarrhea of her life."

No stomach complaints, no episodes, happy kids, happy me... GAH!!

Resistance came fast and hard. I called my Mom and a friend, "I can't make her drink that much, that quickly! She will puke. I could hardly drink that much that quickly for my colonoscopy last year and I am not a skinny 6-year-old! And she seems fine. She hasn't complained. Is this really necessary?"

The next day I called her general pediatrician. I have developed a deep sense of respect for this doctor and trust her opinion as a physician, and because she is a mother of three young kids. I do trust her GI doctor, but when thrown for a loop I've learned it's ok to look for additional opinions. She looked at the x-ray and agreed that it was pretty bad, worse than last year's and last year's was in the bad range. She said all GI doctors have different ways of doing the clean-out and that it was perfectly fine for me to go much more slowly than the instructions this nurse gave. We came up with a slightly altered, more gentle plan. She affirmed what I've thought for a long time, that Ellie's chronic constipation is probably a big trigger for her CVS and that just like tending to Ellie's sleep issues we should also tend to this chronic constipation.

UGH.

So, once again I had to talk to Ellie's teacher about her missing some school this week (again and again and again--all the hard aspects of missing school should be a post of its own), and this is how E spent her afternoon:

"ELLIE...TAKE ANOTHER DRINK!"
"Hey El, can you do 2 big drinks for me?"
"I know you're full, but how about 1 HUGE drink and then we'll take a break?!"
"I am so proud of you! Can you take another 3 big drinks?"
"HEY ELEANOR...ARE YOU DRINKING??"

We got through 32 ounces of lemonade/water and half of a bottle of miralax and one Ex-lax chewy thing. So far she only pooped once, so I fear it could be a long night...or maybe it won't kick in until tomorrow...or maybe she will be so stuffed up it will trigger an episode tonight... or...or....

Once again today I am reminded of what a trooper Ellie is. When she needs to be tough, she is really tough and amazingly positive. I am also reminded that I am in charge (ah-hem, sorry Brian) WE, we are in charge and if something feels uncomfortable (like trying to get my kid to drink 8 ounces every 30 minutes) I can speak up and use my resources to find a better plan. I am reminded of how hard CVS is on the school aspect of a kid's life and why it is hard to explain that even though she hasn't actually vomited for a few months, she has still missed a bunch of school. I am reminded of how great my friends and family are (supportive, listening, considering, affirming, asking if we need anything) and I am also reminded of how hard it has been to cultivate relationships this year--so much of my time is spent worrying about Ellie, calling about appointments, going to appointments, catching up on lost sleep. None of it has been really horrible, but it's hard to maintain friendships during this sort of "busy." And in the same vein, I am reminded that I am a graduate student who hasn't opened her books in about a month.

One day at a time, one day at a time.

Dance Recital Rehearsal

Ellie takes a dance class and tonight was her official dance rehearsal...full costumes, big theater, loud music, spot lights. This is her first recital. Afterward she said, "I thought I was going to puke the whole time! Seriously Mom! I really thought I was going to throw-up!" Brian: "Why did you feel like you were going to puke?" Ellie: "Because it was so exciting! I really thought I was going to throw-up, really!" Me: "But you didn't, you did it and you didn't puke!" And then we literally gave high fives all around. A good CVS day.

Mommy Guilt Update

At dinner table, just Ellie and I.

Me: Ellie, do you remember last week when we were at the beach and you wouldn't eat your peanut butter and jelly sandwich because your tummy hurt?
Ellie: Yes.
Me: Remember how I was crabby at you because I wanted you to eat?
Ellie: Yes.
Me: Well, I'm sorry baby. I thought you were just worried about your CVS tummy but really you had the flu. I'm sorry I got crabby with you about eating that day, I didn't realize you were really, really sick.

(Long pause, Ellie brain processing)

Ellie: Mommy, if I was still mad at you for that I wouldn't even be your daughter! Don't worry Mom!

Me: (long pause, Mommy brain processing)...BIG HUG..."Thanks honey. I love you past outer space!"

Mommy Guilt

Moms know the truth (I'm sure Dad's do too, but I am more familiar with the Mommy side of things):
We do the best we can everyday and everyday we go to sleep so thankful for all the great moments of that day but we also feel guilty for the moments when we snapped at them. Typcially our snapping is because of exhaustion, or trying to balance 12 things at one time, or trying to give everyone good attention at the same time, or whatever.

"What? We are just playing."

But whatever the reason, we snap. And it doesn't feel good. And we make a pact to try harder the next day, we say a prayer for patience and good energy and we move on.

I have had a terrible guilty knot in my stomach for a few days now. Two weeks ago Ellie had what I thought was a HORRIFIC episode. Twice in the middle of the night I thought I should just drive her to the ER because she was clearly in so much pain (stomach pain) and just crying, moaning. It was awful, neither of us slept and I felt terrible for her. The strange thing was that she also had a very high fever the whole night (103.5 degrees). Ellie's episodes often go hand-in-hand with her body fighting some sort of bug (usually a cold), so I just figured she was fighting another cold and having a terrible CVS episode at the same time. This was on a Friday night. The epsidode was so bad it was taking her days and days to recover--also unusual, it usually just takes an afternoon or a day to recover. The following Wednesday B and I talked and both of us agreed we should take her to the regular doctor because she would NOT eat anything, was so lathargic that she almost fell asleep at dinner (on her plate), etc, etc. I was worried this was a sign that there was more going on with her than CVS. Maybe her anxiety around eating was so bad it was bringing her energy down, maybe she really does have mito disease and, well, that's scary... etc, etc. It never occured to me that she just had a terrible flu.

We went to the doctor and her doctor thought it could be rotovirus (really bad stomach flu known for high fevers and terrible stomach pain). She took a swab and it came back negative. I was bummed. I had hoped it was rotovirus. But the doctor said it might still have been rotovirus not CVS and the swab was just taken too late. I felt like she was trying to make me feel better, trying to convince me that this was not what our CVS lifestyle might look like. I felt deflated for all of us, for the pain Ellie had to endure, for the exhaustion and anxiety it was causing all of us.

Until the next Friday night.

Colin woke up with 103 fever, began puking, and well, fill in the blanks. Today is Wednesday and he is still not better. Acting just like Ellie was a week ago. Functional but exhausted, not wanting to eat anything, and still some diarrhea.

Mommy Guilt.

Ellie has this thing where she is really afraid to eat after episodes. She also is extremely sensitive to anything anyone says about what food is "healthy" or not healthy (which is confusing for her since so many of the adults in her life all have various opinions about what is healthy or not and why, for example for most people bananas and bread are good and healthy--but for Ellie this causes her constipation to be worse which in turn causes stomach pain--confusing, too much for a 6-year-old to understand). She soaks it all in wanting to stay healthy, wanting to stay away from an episode.

BUT.

But her weight hasn't changed for at least 9 months now. Her regular pediatrician said last week that it is ok right now, but that at her age and with her height increase she really should be gaining a little, she has not gained for a while. So, I've been trying to convince her that after an episode it really is ok to eat. That at school she must eat. That at home she has to finish dinner. Etc, etc.

BUT.

But overeating at a meal is a trigger for lots of people with CVS and it has been for Ellie in the past. Too much of a good thing leaves her in bed with a stomach ache. Also, too much chocolate is a trigger (just like for migraines). Some day too much wine will be too.  :-)

So, last week, just two days after her terrible flu that I thought was just CVS, I snapped at her about eating. She refused to eat. I got crabby. Then the next day she still wouldn't eat, didn't want juice, complained of her stomach hurting. I told her she needed to eat. Her body was hurting because she wasn't eating anything (almost literally). More tears from her, more frustration from me. And then it became clear it had been a terrible flu. And now Colin won't eat anything, almost literally.

GUILT!

I know, I know I was doing my best, but damn do I feel terrible for being cranky with her about eating. It breaks my heart. Knowing that she was truly still in pain. That she too thought it was CVS (because she was following my lead) and she was trying to tough it out--go to school, go to dance class--all the while with this terrible flu bug and feeling awful. Ugh! It kills me. She is so amazing, and so positive, and so, so tough. Why can't I just grow a little more patience?!

Mommy guilt sucks. Luckily she is only 6. Luckily she is more resilient than I am. Luckily I have been able to hug and kiss her a thousand times since then. Luckily I have a husband who lets me sneak back in our bedroom with Ellie to have a "girl power hour" where we snuggle and read a chapter book and talk about school. Luckily I'm getting over it.

Some days I am really positive, other days I want to tell CVS to suck it. Today is one of those days.

Ignorance

Soon after Ellie was diagnosed with CVS I read (or heard) a statement about how people with CVS really need a team of physicians to care for them. The statement included a list: nursing, general physician, GI specialist, psychologist, etc, etc. I will always remember rolling my eyes and saying outloud to the computer, "Ha! That seems a little extreme."

Ellie now sees a general pediatrician, a GI pediatrician, an allergist, an Ears/Eyes/Nose/Throat specialist, a regular dentist for cleaning, a special sleep dentist, a pediatric sleep specialist and new this week...a child psychologist.

A Dentist for Sleep Disorders?

Yes, it's true. We are seeing a dentist whose primary role will be to help Ellie with her sleep issues (although straightening her teeth will be included as well). A strong trigger for kids with CVS is poor sleep and we've known...well, we've known since the day she was born..that Ellie has had sleep issues. After a surgery that removed her adenoid and tonsils after her 2nd birthday her sleep improved so dramatically that Brian and I figured that was all said and done. In fact, we never went for a follow-up sleep study (I would recommend doing a follow-up even if your child seems so much better). Over the last few years it has been more and more obvious that Ellie still has serious issues with sleep. It's interesting what a second child will teach you when your first kid has some issues, like sleep for example. When we put C to bed he is done for the night. It is truly RARE for him to wake up or get out of bed for any reason until 6:30am. When we put Ellie to bed we are ready for her first visit to us somewhere around 11 or midnight. These are long nights and while we do have weeks or even a month that is better than the rest, it is clear that her little body will not let her just sleep. We've been to psychologists, allergy specialists and even had a sleep study done about a year ago to make sure she wasn't having apnea again. So, this time our doctor recommended getting into the wizard of sleep--Dr. Sheldon--to get to the bottom of her sleep issues.

Heal her sleep issues = reduce her CVS issues.

A few weeks ago we saw Dr. Sheldon, a highly recommended pediatrician who specializes in sleep disorders. He works at Children's Hospital. He is basically the creme of the crop as far as pediatric sleep specialists go and once again we are lucky to live here so that we can be one of his patients. Dr. Sheldon said he feels pretty confident that Ellie's breathing is still not 100% when she is sleeping. There are many reasons he had for believing this but to simplify this update I'll skip through most of that (he had reviewed her xrays, past sleep studies, etc). Essentially he believes that when Ellie lays down her breathing is compromised. He said it would be like snorkeling with a straw instead of a snorkel mask--it's possible, but after a while your body knows to come up for a good breath of air. In Ellie's case, her body wakes her up. The best way to improve her airway has to do with the way her jaw sits on that big, beautiful head of hers. Since her tongue is connected to her jaw, when she lays down and her tiny jaw falls back that means her tongue falls back too and blocks her airway. Also, Ellie has an extremely high palate on top of her mouth. The top of your mouth is the bottom of your nasal passage, so her nasal passage is being squished by the top of her mouth. Basically it's a double whammy for Ellie. So, the first thing Dr. Sheldon recommends is opening up her breathing space and the best way to do that is through special orthodontic work. Basically we will retrain Ellie's jaw to sit in the appropriate place, widen the bottom and top space which will lower her palate (hopefully) and all of this will open her airway. Dr. Sheldon works closely with a dentist. Together they are "breaking new ground" and having a whole lot of success.

 I tried to find a few pics that demonstrate Ellie's face-O, crane-O structure issue. It didn't go well, but the pics are too cute not to share anyway!




Dr. B

Last week was our first appointment with Dr. B and to be honest, I was feeling a bit apprehensive when we arrived at our appointment. The dental office is located in a house in a neighborhood in the city. We were told to park in the back and that the main entrance was also through the back.What this actually meant was that we were parking in an alley where there were only 2 parking spots and walking through a gate in a tall wooden fence. There was a wooden bridge that took us from the alley to the porch on the back of the home, which was not a home but a pediatric dental office. You can see how I started to feel a little apprehensive. The sleep wizard's office met all my modern, conformist expectations...located in a high rise downtown, no windows, plenty of glass doors, stuffy, white walls, doctors with white coats, hand sanitizer at every turn. This dental office broke all the rules of modern conformity. On the back door of the house, which is actually the entrance, there is a big colorful sign, "Kid's Dentistry" or something like that. Laying right on the deck in the wide open doorway was "Blue," a large golden retriever who welcomed us gently before he went back to his sunbathing. Don't get me wrong, there was the normal front desk area and once we got into the regular office area it looked like a normal dentist office but you can see where my skepticism came from. I am also still in this mother bear mentality after our poor experiences with our first pediatric GI. I want the best for Ellie, no need to waste time or our money at this point. So, this Dr. B was going to have to impress me...

He did.

Fun, colorful mouth/teeth pictures

Two images came to mind after we left that day (2 hours later!). One was of Patch Adams. Of course this guy is not crazy, but he has about that much sunshiny energy and was clearly incredibly passionate about his work and probably top of his class. The other image was of my Uncle Terry. If Uncle Terry had chosen to be a dentist, this would have been him. He even wore "KEEN" sandals with socks on. Before we left he had Ellie sit down with another patient who was a 4th grader to hear what it is like to have retainers. The three of them (Ellie, this other girl and Dr. Boyd) had a little pow-wow about wearing retainers, sleeping better and straight teeth. Patch Adams of dentistry.

Dr. B also spent a lot of time showing me xrays and explaining all things cranial structure. He had a lot to tell me and not very much of it was retained that afternoon but he won me over and we will pick up Ellie's retainers in a few weeks.

So, my 6-year-old is going to wear two retainers for basically 24 hours a day and without losing them...pretty sure that will be another post! For now, sleep well and brush often!

Interesting website regarding "Oral Myofunctional Therapy":  Click Here!
BUT, I like this one better, "Orthotropics":  Click Here!

Update Number 6: Wizards!

April 4, 2013

Ellie Update: I just got off the phone with the woman who schedules appt's at Milwaukee's CVS clinic. She received our (huge!) packet and all Ellie's medical records (over 20 pages, geesh). Now we wait as Dr. Li reviews it all and then passes it back to her to do the scheduling piece. Dr. Li is currently out of the country. I sent the packet in 2 weeks ago and hadn't heard anything. I must admit I started second guessing myself. Like maybe Ellie isn't "bad enough" to go see the Wizard of CVS. But, that's just my insecurity and/or anxiety creeping up. It will be so so wonderful to talk to professionals who know about CVS.

This week we went down to Children's Hospital here and met with another wizard, but he is the Wizard of Sleep. Our regular pediatrician suggested waiting the 4-5 months for an appointment with this guy because he is a BIG wig as far as pediatric sleep specialists go. She figured he would know more about CVS and it's association to poor sleep. Nope. He knew of CVS but not much else, at all. That part was disappointing but he did have some really interesting thoughts about Ellie's sleep issues (she still wakes at least once a night, often more and often with stomach pain). So, we will do another sleep study at his clinic at the end of May. We also are going to go see another orthodontist who works with the Wizard of Sleep. Ellie has an "abnormal" cranial structure (in our house we just call that the Granstrom head) and he said a lot can be helped with airway issues through orthodontic work. There are more details but I think it's boring...

Something that Ellie and I are both pretty excited about is a CVS 5k run/walk the first weekend of June. Ellie keeps asking when it is. I think she is curious to meet another kid with CVS. Here is a link to the event: CVS Run/Walk This is the blessing of living so close to Milwaukee! It's a fundraiser of course, but I think it should also allow us to meet other kids/families with CVS. So far I only know of two other families. I have not met her but have talked to one other mom on the phone a few times and she is WONDERFUL! She has a teenage daughter who has grown out of CVS (and into migraines, but only occasional). I cried and cried when we talked because it was like hearing Ellie's own story--and there is just something powerful in knowing others have been through exactly this. I also cried and cried because this woman is so kind and supportive. The other is an old college acquaintance, but she lives far away and her daughter has numerous health issues that are much more serious than only the CVS. My point is, I'm kind of hoping we make a friend or two at this walk (Dear God: a 6-year-old girl friend would be perfect, Thanks). But if we don't that's ok too.

Ellie is currently on a fairly strong medicine that does seem to be helping. But neither B or I would like her to be on this medicine for a very long period of time if possible, hence heading to the Wizard of Sleep at Children's. He also would not like Ellie to be on this strong medicine. Ultimately the medicine knocks her out, makes her woozy in order to help her sleep more, in order to help her have less episodes. It is working, but the Wizard of Sleep and Brian and I would all like to figure out if there is a more foundational issue that needs addressing with Ellie's sleep. Right now Dr. S (sleep genius) thinks that there is still a breathing issue for E when she lays down. Anyway...for now I'm glad for the respite. We are having mini episodes (no vomit, just nausea and pain) about once a week and it's easily solved with zofran, snuggling and distraction. Our recent long road trip caused numerous mini episodes but that's just to be expected--excitement, poor sleep, lots of driving.

I hope this wasn't too long.
Thanks again for all the love and support!