Having a sick child is terrifying, even when you know that everything that can be done is being done, even when you trust that the people making medical decisions about your baby are fighting for her almost as fiercely as you are.
Imagine, then, that your two-year-old has a rare immune disease that causes her tremendous pain and keeps her from any semblance of a normal life. Now imagine that the treatment that offers the best hope, the treatment recommended by your pediatrician, is denied.
I know. You are too angry to read any further right now. I’ll give you a moment to take a few deep breaths, and when you have calmed down, please click over to read Ivy’s story. Then sign this petition.
Simone ended up in the ER today for some chokey wheezing and returned with a prescription for albuterol. Coming on the heels of a pulmonology appointment at which she was declared to be doing better than 80% of babies they her age with her level of chronic lung disease, our jaunt to the emergency department was disappointing, to say the least. Of course she didn’t wheeze once while we were at the hospital, and has been fine since, so it may be nothing. It was an alarming sound, however, and I hope she refrains from making it in the future. Not that she minded the visit herself:during the chest x-ray, her legs and arms STRAPPED INTO RESTRAINTS, she was quiet and smiling, occasionally giving the lamp above her a flirtatious coo. We had actually been at the hospital earlier in the afternoon, to visit one of her primary nurses from the NICU. If I’d known we would end up back there I’d have stuck around to save on parking.
Her primaries feel like family, and Simone was in the unit so long and met so many people that when she comes back for a visit it is a happy cluster of friends fawning over her progress, and it feels…victorious. Of course, after I had gone ON and ON about how talkative and giggly she has become, Simone didn’t so much as crack a smile the whole time we were there. She did manage to douse one of the nurses with spit-up, however. That’s my girl!
I hope she is better behaved tomorrow, when the team from Early Intervention arrives to evaluate her and begin therapy. I want to make a good impression, so we’ve been practicing various tricks she can use to impress the evaluators. Like this one, where she reads Heidegger:
I’ll be back tomorrow to let you know how it goes.
{ 33 comments… read them below or add one }
Alexa, have I told you how amazing you are? Thankyou.
I think Simone probably did better than I would have done was I strapped into leg and arm restraints for any purpose.
Thank you for posting about Ivy’s petition. I hope the EI team can see how brilliant your little one is.
Looks like mission accomplished with the petition! well done, all.
(Hrm, yes, I have to agree with Simone – there’s no substitute for the original text – no feeble summaries for her!).
Accchh! ER! Poor wheezey Simone!
A bumbo is just the thing for contemplation of a spot of philosophy. I expect she has Nietzsche programmed in for after lunch.
My son, although a cheery chap at home when he chooses, has a very solemn public demeanour. One lady in a HFF much-frequented shop has repeatedly tried to jolly a smile out of him, without success. He merely stares, impassively. Eventually she enquired: did he mean to become a policeman when he was older?
Oh, I hope she feels better soon and love the fact that you have her reading at a third grade level already! (The pictures are classic!)
Poor Simone! I’m glad she’s doing better. What a day!
Go you for linking to Ivy’s story. Sleepless Nights updated that the petition had helped and she will be getting the treatment! Yay!
Also, per EI, I think they could only be more impressed if Simone were reading Heidegger in the original German. But give her a few months . . .
Looks fine to me. I’d obviously through some Foucault on the stack because you never know about those Early Intervention people . . .
(that should be THROW not THROUGH. Clearly if you gave her a cup of coffee and Elements of Style she’d probably do fine, too.)
Ugh. Heidegger. I mean ugh, trip to the ER. I am so sorry that you had to do that. Glad that she is okay.
Since my baby got mobile and we have all manner of chokeable and swallowable items around due to her older brother I was just wondering, in case she ingests something without my knowing it, how they take an x-ray of a squiggly baby. Now I know! Wish I didn’t for your sakes.
She is such an adorable and smart little thing! Reading already! ;)
Nothing to stir the pensive baby like a little Plato. Some reflection is good Simone, but your brain will need a bit of rest.
We stock albuterol like it’s a necessity to stave off zombie attack. We invested in a nebulizer for home, and after getting the green light from our ped to use it any time we hear wheezing – no need to call, cold and flu season has been much easier.
Good luck with EI. My experience with them is that they are really good people who do great work. Hopefully your experience will be similar.
I love pics! Thanks. I’m heading over now to sign the petition.
Just courious. WHat kind of theopy is Simone going to be going through?
Ah, the chest x-ray. Simone is a master of decorum…my kid screamed his way through that whole procedure a few weeks ago. I’m kinda scared of albuterol, given its effects on my son’s sleep. They later prescribed xoponex, a purified form of the albuterol molecule, and it’s worked MUCH better. Just assvice in case the albuterol keeps Simone up at night.
Hope the meeting with EI goes well and that Simone is feeling much better.
EI is awesome! Really, they are cut from the same cloth as the really good NICU nurses, except they get to do more playing with kids and less poking them with sharp objects. Hope you enjoy their visit1
I see that Ivy’s treatment has been approved! Isn’t the Internets wonderful? Well, not always, but sometimes.
And Simone is amazing. As are you.
I’m sorry to hear about Simone’s adventures in the XRay machine. There is a nasty respiratory virus going around gangbusters, at least in my part of the Midwest; chances are good it’s made it up to yours as well. As my pediatrician put it after our FIFTH visit in ten days, “even the big soldiers are falling, so what chance does a little guy have?”
So really, your Simone is just following the trend. How fashionable of her.
Inquire about the aerochamber ASAP. According to our pediatric pulmonologist(one of the original developers of the steroid shot they give prenatally with threatened premature birth)it’s more efficient(gets more steroids into the lungs). Is MUCH nicer for household morale(no 15 minutes of holding a smoking mask on an upset baby)– only takes 6 breaths.
Perhaps Simone has been choking on the last remnants of the GOP convention?
Also, my daughter(24 wks) is the same with medical procedures— they really don’t phase her. I’ve held plates against her wee chest for chest x-rays, I’ve watched her baby and toddler selves sit stoically as blood is being taken– she’s never once cried.
It hurts my heart, because I know the price for such a freakishly high pain tolerance.
she’s got a mag in betwixt those Heidegger pages.
I meant to write something witty about the Heidegger or Foucault (but someone beat me to it!) or maybe that Eagleton’s Literary Theory might be a bit more accessible for the under-one crowd…but I am thinking lots about EI evaluation, and what a stressful, but wonderful opportunity it was. I spent the whole night before flip-flopping between wanting them to say Graham was perfect, no need for services, and then the next second, wanting them to say look, here is how we can help you and your son. I’ll be thinking about you and Simone tomorrow!
Sick kids shouldn’t be allowed. Good luck with your appointment, I am sure they will be impressed!
the picture of her putting down plato made me laugh so hard i spit out my toast. I guess she couldn’t deal with all the analogy and symbolism either.
OMG! The petition already worked!!! Ivy has been approved for the IVIG treatment!!!! Hooray!!!!
I’m sorry about your trip with Simone to the ER. And to think that she’s so naughty as to not even show a single symptom while there (haha). She is such a beautiful little girl sitting there ready her big words!
Because I am such an awesome mom, my preemie girl got RSV within three weeks of entering day care, and I thought it meant asthma etc. for sure, because of the numbers of risk factors she had. We went back to the ped ER one year later for wheezing, got albuterol with an aerochamber spacer, and one of the steroid inhalers too, but we just don’t need much of either so we did all that worrying for nothing.
Moral of the story: try not to worry too much because the wheezing may not last.
Once I tell you about how my second child has a metabolic disorder from the newborn screening heel stick panel, and that I worry myself sick, you can tell me to shut up, since I don’t know the first thing about not worrying.
The Heidigger could cause wheezing, and nausea.
I just smile when I see those baby pictures….. gosh darn it when you think she cant get any cuter….she does! Aren’t those bumbo seats great! I swore I would never waste my money on one but after having a child with reflux, seemed like anything to get her sitting up sooner was a good idea.
hehe the pic with the book is adorable :) I’m so glad to see Ivy has been approved for the treatment
I found your blog and think it is wonderful and so well written. The pictures are adorable. Hope all goes well with the Early Intervention team.
No picture books for Simone, it’s straight onto the good stuff!
Simone’s behaviour in the ER is totally normal. That’s what babies do best – undermine their Mothers’ confidence by any means available.
Good luck with the EI people.
She looks quite studious (first pic) and contemplative (second). She is so wise to use this preverbal time to get her thoughts straight. When she does speak, she’ll spew things like “counterhegemonic” from the first.
Awesome photos. =0)
Hey Ginger, mind if I ask which metabolic disorder? My daughter, age 10, has MCAD, diagnosed through random newborn screening, therfore actually helping to make expanded NBS mandatory in the state in which she was born. She’s been asymptomatic her whole life so far, thankfully!
Ooh, anyone want to play Count The Commas In Pai’s Post?
Those pictures of Simone are great! LOL
I can’t believe that the treatment was denied – completely unconscionable. Gah!
I’ll head over sign ASAP!
I notice Simone’s lack of foreign policy experience. Perhaps if she started wearing lipstick, she would be eligible to run for vice-president.