It’s 2015!

It’s a new year, time is flying, and these kids are growing fast! Perhaps we’ll post more in 2015. In that spirit this post is a short post to give some glimpses of everyday life around here:

As you probably know, Ruben loves music. He often has a favorite song or two that he focuses on – sometimes for weeks at a time. Last summer was all about Neil Young. Here he is, in Sept I think – singing his favorite verse of his favorite Neil Young song:

Ruben’s Old Man

and, nothing is funnier to Ruben than silly words:
funny Grandpa Jonathan

Anya – meanwhile, is a squishy, giggly, crawling 7 month old. She’s not very interested in eating solids yet – but she loves to chew on books.

IMG_0386

 

more soon! including health updates

xo

we’re still here, are you?

hi all!

It’s us. We’re here.

Today Ruben is 3 years old!!!! Happy Birthday, Ruben! Unfortunately, he has a fever today and isn’t feeling so great. We had to cancel his family birthday party – but hopefully we can reschedule. Halloween was fun though! Look at these polar bears.

tip of the iceberg

Anya is 3 4 months old (!), fall is in full swing, and life is busy and full and great. Here she is at 3 months old (as in – this post has been a draft for a long time): hi!

Look at those cheeks! Or, should I say jowls. She is delicious and very squishy and she weighs almost as much as Ruben when he was 1 year old. We can’t help but marvel at her growth rate – Ruben was such a pipsqueak in comparison. She is rolling and scooting already … and (we fear) it seems mobility is near.

Anya and Ruben are very sweet together (that is after we made it through11 weeks of Ruben hitting Anya any chance he got …) – we all cover her in kisses any chance we get.


anya and her dad

She’s struggled with various digestion issues – we could even say a little colic. But, I  cut out dairy and wheat and soy (!) – and she is much happier. We’ll see. Hopefully she’ll grow out of all food sensitivities and her reflux soon. We could use more sleep. I could use some yoghurt and a piece of bread :-). Otherwise she’s very sweet and smiley. She laughs and thinks Ruben is especially hilarious and nothing is better than that.

Ruben is doing well. He had an echo in late July and his heart seemed to be holding steady. And, he had another echo last Tuesday, and we think his heart remains stable, although we’re still waiting to hear results. Our heart news mainly has to do with geography – after much agita with insurance, and a heart-felt check-in with Ruben’s old surgeon Dr. Chen (now at Seattle Children’s Hospital), we’ve decided to return Ruben’s care to New York. We will be working with Dr. Alejandro Torres – he is the interventionist who did Ruben’s last catheterization a year and half ago and he couldn’t come more highly recommended. Most likely the care/consultations/tests/interventions will take place at Columbia as opposed to Cornell (in case you were wondering).

The other news in our lives that we’ve been wanting to update you all on is that Ruben is not so neurotypical. Those of you who know Ruben know this – he’s wonderful, and silly, and so joyful, and loves to learn, and soaks up words and sounds and songs, and he is full of quirks … which all together, add up to autism.

We got an official autism diagnosis in June (the same week Anya was born) and secured services for Ruben through Early Intervention as soon as we could. The evaluation process itself was the worst part – the process is quite demoralizing as it is a deficit-based approach … the worse a child does on the evaluations, the more services and support they will be awarded. No fun. Though, ultimately, we were relieved to get the diagnosis as he was immediately awarded oodles of services.

Upon the advice of many, we moved forward with an approach called Applied Behavior Analysis (ABA). It’s intensive in terms of time and structure – In the beginning of July Ruben started 20 hours/week of ABA with 30 min of Speech Therapy every day and Physical Therapy and Occupational Therapy one or two times/week. Along with his morning school hours – he is in programming most days from 8am – 3:30 or 5:30. He is a very busy guy! And – he loves it. He is thriving from this approach. We could not be bigger fans of Early Intervention.

It just so happens that the two teachers at the little school he attends in the morning are eminently qualified and a perfect fit for Ruben. Susan – his teacher – is a certified ABA therapist, and Reva is a speech therapist. We are very lucky that they were both able to take Ruben on as their case. So, Susan and Reva work with Ruben/us every day – they have basically joined our family 🙂 They are experienced and artful at what they do, the best of the best – we really struck gold. Susan also helps train us as parents in how to communicate, be clear, consistent, and see the world through Ruben’s eyes.

At this point we’ve “grieved whatever fantasy we had of a neurotypical child” (Barrup, 2014), and we’re fully on board with Ruben just as he is. The challenge will be finding environments (school) that will allow him to be and thrive. This will be an ongoing process for the foreseeable future. If anyone has an amazing preschool and/or school to recommend – let us know!

Sam is the parenting champion of the year – picture him coaxing Ruben to eat some lunch, with Anya on his hip, and on hold with some agency/school/insurance company/health care provider. He is very busy. Parenting a heart baby and kid on the spectrum take a ton of time and work! The UFT/DOE Childcare Leave is saving our butts.

Our next few posts will be about regular life around here – some snippets of whats good in our lives. For now, just wanted to provide these updates.

love,

us.

ruben and rio

 

anya jo

Introducing Anya Josephine Coleman Fox!

Born on Monday, June 16th at 3:22am just a few blocks from home at Methodist Hospital. She was 7lbs 6oz at birth and 19 inches long – and healthy as a peach!

We are thrilled beyond at the event of her arrival.

And, we are also thrilled at the uneventfulness of this whole experience – I walked to the hospital while in labor with the help of Sam and Jo and Jonathan and three (intense) hours later Anya was born. She was plopped on my chest right after birth and basically stayed with me/us from then on. We were all home before we knew it and we’ve been able to pass her around to be cuddled by her grandparents, Aunt Sonia, and friends who have stopped by. It is indescribable how delicious it is to have a healthy baby.

Ruben is getting used to her and the seismic shift of our family growing from 3 to 4. He’s given her some sweet kisses – and … um, other kinds of attention too. She’s going to be one tough cookie, our little AJ.

Hope you’re all well!

Love from us.

dancing in the park to make labor happen with Lucía, Ari and Ben on Saturday

Saturday – dancing in the park to encourage labor … with Lucía, Ari and Ben

sunday afternoon, while contractions slowly rolled in, grandpa kept R laughing

sunday afternoon, while contractions slowly rolled in, grandpa kept R laughing

the moon as we walked to the hospital around midnight

the moon as we walked to the hospital around midnight

born with her eyes wide open

born with her eyes wide open

rest

sweet cuddles

sweet cuddles

Aunt Sonia

Aunt Sonia

look at all that hair!

look at all that hair!

Nana helping Ruben meet Anya

Nana helping Ruben meet Anya

the new scene around here

the new scene around here

too cute, 3 days old

too cute, 3 days old

2014!

We’re feeling good about 2014 so far …

I am very very excited to share that I’ve accepted a position as Assistant Professor of Children and Youth Studies at Brooklyn College, City University of New York. This job is as dreamy as it gets, and is the ideal fit for me – I am thrilled.  I start in late August.

And, since I”ll be starting this job when our new little baby is only a couple of months old (gulp), Sam is applying for Childcare Leave so that he can be home with the kids next year. This is basically Sam’s dream come true – although, to be honest, neither of us really believed we’d get the chance to do it.

What else.

Oh! My dissertation defense is set for April 23rd at 10am! (room 6304.02 at The Graduate Center – come along if you wish)

But, before all that – our big move! We’re moving upstairs and Danny & Sharon are moving downstairs this weekend! We are a little overwhelmed with the logistics of the move, but we are more overwhelmed with appreciation for Danny & Sharon. They are amazing – and we feel very lucky.

Meanwhile, Ruben has started a new school 3 mornings/week run by a special ed teacher and a speech therapist and it’s still soon to tell but we feel like this is exactly what will help him thrive and love school.

Otherwise – we’re all reveling in the incrementally warmer days, accommodating my ever-expanding body, and singing lots of Eensy Weensy Spider.

some silly pics of me and Ruben:

rocking chair see my cavities?

february 14th

This is Ruben’s first Valentine’s week not in the hospital. Valentine’s week is Congenital Heart Defect awareness week in the U.S., and I have to admit that since Ruben’s been born, this day of celebrating hearts has taken on new meaning for me. We’re so grateful that we’re not in a hospital this week. We’re also feeling extra proud of Ruben and especially connected to all the other families and children with wonky hearts.

I’m in a couple of Heart Parent groups (on facebook, etc.) and many parents of heart children do a great deal of advocacy during this week of the year towards raising awareness of Congenital Heart Defects (CHD). About 1 in 110 babies are born with CHDs each year – early detection impacts outcome significantly. One of the aims of advocacy efforts is to change state laws to mandate that all newborns have their oxygen saturation levels tested before they go home. This is a simple, painless, totally non-invasive way to check for otherwise undetected heart defects …. sounds like a good plan to me! New York State implemented this law in January of this year.

And, in relation to CHD awareness week – I can stand behind the idea of claiming scars and survival proudly – for the those with CHD’s and their families too.

I’d like to think about this week, for our family at least, as a time to celebrate Ruben’s special-ness and strength. And also a time to remember that “normal” means very little in relation to human kind. I’m meditating this week on the temporality and imperfections of the human body – for all of us. And I’m celebrating inclusion in education, and disability justice, and I’m reflecting on health.

Maybe at some point I’ll get (re-)involved in organizing efforts to ensure that access to the best health care is not a class privilege.

In the meantime –

Happy Valentine’s Day from us to you!

happy v day 2014

so far, so good

Ruben did great!

We were able to do his tests without sedation on Tuesday and meet with the doctor Tues evening. Even though Ruben ran like bonkers around the hallways and waiting rooms for most of the day, when he needed to be still, he came through (thanks to amazing, magical Elizabeth Mitchell music videos – but more on that another time).

The results were the best they could be – they saw no significant change for the worse in terms of narrowing, obstructions, pressures, and heart function. And, since he seems to be coping so well (full of energy, not sweating, not out of breath, etc.) Dr. Lang decided to put off any kind of intervention for now!

Ruben will be monitored here in Brooklyn, but the plan is to check back in with Dr. Lang in Boston next winter.  We are completely thrilled that Ruben gets to run free for possibly another year! 

… more soon … ❤

 

what a week

We learned today that the little baby cooking in my belly is heart (and otherwise) healthy!

Yes, btw, we’re having another one 😉 in June. We sort of held off announcing this news until now – perhaps due to superstition, perhaps busy-ness, or perhaps because we no longer turn automatically to this blog. Anyway, we are so very relieved and deeply grateful for the good results we heard this morning at the 20-week ultrasound.

We hope this good luck keeps us company all week – because it’s kind of like a triathlon around here.

Tomorrow we head to Boston Children’s Hospital for an echocardiogram and a lung perfusion scan for Ruben. They are going to try to do both tests without sedation. If Ruben isn’t having that – if he doesn’t want to stay calm and relatively still through the tests – then he’ll have sedated tests on Wednesday. These tests will give the doctors a glimpse into what’s going on in Ruben’s heart right now, and by the end of Tues we hope to have a game plan for the next few months. We’ll see what they say!

We’re really hoping the tests go smoothly on Tuesday – mostly for Ruben’s sake so that he doesn’t have to do very unfun things 2 days in a row, and so that he doesn’t have to be sedated. But, also so that we can be back in Brooklyn Tues night because on Thursday I (Maddy) have a high stakes, high energy job interview.

The stars must be aligned in some kind of way because it’s all happening this week! We will know so much more by Friday afternoon than we did when we woke up this morning.

Wishing health to everyone and good luck all around.

Love from the polar vortex,

polar vortex

 

 

cuddling with baby johnny, in preparation …
baby cuddle

updates!

sorry about the long pause – life swept us up.

we have updates!

maybe we’ll just share them list-like …

  • Ruben is 2!! He had a very sweet and low-key birthday celebration with a carrot cake, chocolate chip cookies, and family love. Also, his friends at school made him this awesome card.birthday card
  • School. Just so that you’re up-to-date – the first school Ruben tried out this year didn’t work out, so he’s now in a playgroup that meets 2 mornings a week. He’s finally getting the hang of saying goodbye to me and we love that he gets to be around 5 other very cute little 2 year olds.
  • Health. On Nov 5th Ruben had an echocardiogram at Dr. Chhabra’s office here in Brooklyn. The great part was that he did a fantastic job being still and calm and so did not need to be sedated!! We were very proud of our little wiggly one for being so relaxed for the 45 + min it took to get a good look at his heart. Unsedated echoes … he’s really growing up 🙂
    We were not surprised to learn that his pulmonary arteries are very narrow and need attention sometime in the next couple of months (most likely). We’ve consulted with Dr. Peter Lang at Boston Children’s Hospital and assuming insurance doesn’t object, we’ll be taking next steps in Boston beginning with another echo and lung perfusion scan in early January. We’re not looking forward to more hospital time, but we’re very glad that Ruben’s narrow arteries will get some love and attention.
    unsedated echo
  • We hope you’re staying warm this winter …. or cool, if it’s summer.
    sam chair

busy body

as promised, medical news:
first – Ruben might be meds-free!! Friday – Sept 13th – was Ruben’s first full day on zero medications since he was born.

He’s been on propranolol (beta blockers) for high blood pressure since last summer and his cardiologist is having us try 2 weeks off to see how he does. If all goes well – no more meds! Even if he goes back on – we plan on enjoying this break from oral syringes full of sticky sweet meds every 8 hours. To be honest though, the meds used to feel like much more of a thing. Nowadays Ruben can practically take them himself and it’s become so woven into our everyday that I’m even feeling a tiny bit lost without them. Still, what a joy for his body to get a chance to metabolize only toddler food, water, and sunshine. We’ll see what happens when we check in with the cardiologist at the end of this week!

Meanwhile, Ruben recently was approved for Occupational Therapy from Early Intervention for sensory processing issues. We learned about Ruben’s sensory processing issues in June and it’s been a slow summer of reading books, talking to folks, getting evaluations, working our way through the Early Intervention system, and bit by bit learning what this might mean for Ruben.  We’re still not totally sure – and will just have to see how he grows and develops (he’s not yet 2!) but for now we know that sensory processing seems to explain some of the more Ruben-y parts of Ruben.

like – that he never stands still and can’t resist running for blocks and blocks, or that he can swing forevvvvvver, or spin and spin and spin, or that he listens to music so deeply and carefully that everything else disappears, or that he still is waking several times through the night, etc. ….

sensory processing has to do with how our nervous system processes incoming information/stimulation. it turns out that children who have had significant hospitalizations as newborns/babies are at high-risk for being a little wonky about how their senses interact with the world. We are already seeing how some of this can be a gift (like in ruben’s case – he is very attuned to music). and, we are beginning to understand how important it is to support him to be able to stand still if he wants to (for instance long enough to develop fine motor skills or sit through circle time at playgroup), or sleep through the night, etc. We’ve started working with an occupational therapist (Alyssa Fagan) who comes 2x/week to work with Ruben in ways that he LOVES and that make him (and us) feel grounded and triumphant. We are being trained to see Ruben’s world through a sensory lens.

Meanwhile, it’s been a little more challenging for us to adjust as parents. Even though we know he is So Very Lucky and just right however/whoever he is ….. and, we’ve known all along that his early experiences in the hospital/on bypass/w crazy meds will have some kind of impact in a long-term way …. still. Sometimes it’s hard.

I was going to write about all of this much earlier in the summer, but Sam and I are wary of labeling our little one so soon and too easily. So – i’m writing this now to share with you what we’re grappling with in the moment, but – who knows!? Early Intervention might do the trick! (EI is a government funded program in the US designed to ….  intervene early …. when warranted in order to hopefully prevent developmental delays, etc.) And, from what we’ve read and heard so far about sensory processing issues there are lots of ways kids learn to regulate themselves and/or they can be no big deal.

In heart news, Ruben will continue to be monitored this Fall (via echocardiogram, a lung perfusion scan, and a possible MRI) with the general plan that he’ll have another catheterization in February. The doctors remain concerned about the right side of his heart, but they need him to grow before they can intervene. In the meantime, it all seems to be holding and he appears to be doing fine :). Knock on wood.

Special love from us to those of you in the midst of your own medical and/or parenting adventures – we’re thinking of you.

ruben having fun in occupational therapy

ruben having fun in occupational therapy in his “suit”

and so it begins

Ruben started school today!

He’s now the tiniest student at a playschool conveniently located less than half a block away 🙂 He’ll be going 3 days/week for a 5-hour day, which seems just right for him. And he’s definitely ready –
He marched right over that threshold like a pro and only cried for a moment (the teachers told me) when I left.

no looking back

no looking back

Not that our world revolves around his heart or anything, but dropping him off for school was about a million times better than dropping him off for surgery. It was a joy all around.

speaking of …. next post (whenever that might be) will be a medical update

abrazos