Author: jojothestrong

A few weeks ago I had an epiphany of sorts. It was a Saturday morning and I was out on a run, a delicious and rare hour I had all to myself. Jojo’s theme song came on and I got choked up. When I’m running, feelings are somehow more accessible, so I followed that sadness in my mind to understand the root of it. I came upon Sheryl Sandberg. Not literally on the path where I was running, I mean the path I was following in my mind.  Where did she come from? Well first, she is the woman and possibly the human I most admire in the world.

My admiration began when I read “Lean In”. I started following her in the news because of her activism around feminism and because we are in similar lines of work. I was so inspired by how she built her career, marriage, and family. And her approach to managing and nurturing talent on the teams she manages. When she lost her husband, the partner and champion that enabled her to live the life she wanted, she handled it and continues to handle it with such grace and strength. I recently watched her in an interview with Oprah where she spoke about her grief. It touched a nerve.

So on this run, on this particular day, when thinking of Jojo, Sheryl Sandberg and her wisdom about grief forced its way into my conscious thinking. Because I have grief. I feel loss. The loss of the girl that Jojo cannot be today. Does this loss compare to the death of a life partner? Of course not. But this isn’t about comparison.

This is about something unlocking in my mind and heart that I’ve been hiding away from myself. Over the last two and a half years with Jojo, it has been easier to ignore the grief, or push it away. Saying things like she will be fine, she will catch up, it could be worse. That may all be true, it may not be. Either way, there is grief. I daydream about Jojo running up to me to give me a hug, chasing her brother when he runs around, simply walking over to the thing she wants, saying what she wants instead of screaming. How I want her to do all these things. That Jojo and the real Jojo live side by side in my mind. It makes the loss clear, tangible. I am very hopeful for her future. Right now though, she can’t do any of those things. And it is so hard. So I grieve.

In the early days of jojothestrong, I mentioned that the costs of Jojo’s care is a whole other subject. While I usually find it off putting to talk about money in most forums, it feels like the right time to get into that subject now. With what is happening in our country right now: changes that are being proposed to health care, education, and federal funding for welfare and special needs programs, saying I’m concerned for the future of Jojo’s care is a massive understatement.

But wait, why would this affect us? I have a solid career, hubs and I are both well educated, we have access to good healthcare. The truth is there is no way we can afford all of the care Jojo needs. We need help, and we get it from a welfare program. That is right. WELFARE. We aren’t gaming the system, we aren’t lazy people living off the backs of hard working people. We work hard to create a comfortable life for our family. And we need help. Thankfully we have it. For now. Ok, so let’s break it down.

The first important thing to know is that as residents of San Francisco California, all of the services Jojo is getting now are funded by a government agency called the GGRC (Golden Gate Regional Center). They have an early intervention program for infants and children who have developmental delays. They take care of kids up to age 3, at which point care shifts from GGRC to the San Francisco Unified School district. Well, that is a real shitter, because under the current President and his administration, a lot is at risk when it comes to education, including special education services. We’ll cross that bridge when we come to it in 7 months.

The next important thing to know is that medical expenses associated with Jojo’s situation are astronomical. I mean, how-is-it-even-fucking-possible for things to cost this much? Here it is:

Jojo is closely followed by a neurologist. This means regular visits every 3 months, and follow up visits every time she has a test to discuss results and next steps. Her neurologist is the most amazing person on this planet by the way, so I want to be clear that I am eternally grateful to have her on Jojo’s team. And. The cost is very high. One visit is $700. So every 3 months – that is 4 visits a year, plus a few extra for discussing test results. Let’s call it 7 visits a year.

$700 x 7 = $4900

Next, let’s talk about the tests themselves. Tests are in the thousands. The most recent metabolic test was at the low end, $1000. Her MRI was $24,000. Echocardiograms are $5000. She’s had two. For 2016 – 2017 year to date her tests total $40,000. 2017 isn’t over, but I don’t think we’ll do more testing this year, so I’ll take the average.

$40,000/2 years = $20,000

Then there is the speech therapy and physical therapy, both are at two sessions a week (so 4 sessions per week total) and cost about $120 per session.

$120 x 4 x 52 weeks a year = $25,792

Next we have equipment and the like. She has custom orthopedic braces that were $5000, and a gait trainer which also is around $5000. I expect we’ll have these or similar for the next couple years and will have to upgrade size as she grows.

$5000 x 2 = $10,000

Last but certainly not least, there is the integrated preschool with early intervention programs Jojo goes to. She goes 2.5 days per month. The cost for this is about $2500 / month.

$2500 x 12 months = $30,000

Grand total = $90,000

That is just under double the average median household income in this country. Who has that kind of money laying around? Certainly not us or anyone we know. What about insurance? It covers everything except therapy and school. We have a high deductible plan, as I’m sure most people do, with a deductible and co-insurance that has an annual out of pocket cap at $11,000. We reach it every year. In fact, we’ve already reached it for 2017 and we’re just half way through the year. That is about $2000 per month in medical expenses. GGRC picks up the bill for therapy and preschool. So we are making it work for now. I am terrified for what will be available next spring when she turns 3 and the GGRC funding ends. What will still be place through the public school system?

We are very fortunate that we do have the healthcare we have, even if the out of pocket costs are high (I didn’t even mention monthly premium!). And lucky for Jojo that I never take no for an answer the first time. I fight denied claims, which happens all the time by the way. I question policies that impede Jojo’s opportunities for development. I ask more of service providers when the quality of care is falling short. I really have to manage Jojo’s care closely and proactively.

Early intervention is proven to be the most effective and most critical time to address developmental delays and get these children a fair shake in life. The integrated school Jojo goes to serves mostly low income and at-risk families. I’ve met some beautiful kiddos and lovely moms and dads. Most are predominately Spanish speaking, and don’t have the means, time if they’re working 2 or 3 jobs, or vocabulary frankly to stalk to the level that is required. We must as a community support these wonderful children and their families. I don’t want to sully the beauty of jojothestrong with politics. But I don’t think having affordable health care for all is political. I don’t think having special needs programs and services for all children who need them is political. Particularly when a woman’s right to choose whether to carry on with a pregnancy is under attack. These aren’t political issues, they are human issues. It matters and it is important.

The results are in from Jojo’s metabolic testing. She does not have any form of  Mucopolysaccharidosis. Hooray! So what do those perivascular spaces in the corpus callosum mean? If you’ve been following along with us the whole way you know. How about a multiple choice:

1. They mean nothing
2. They could mean something, or they could not, we don’t know

The correct answer is number 2. So where do we go from here? Well, there are no immediate tests to do. In fact, I think we’ve pretty much covered the spectrum of tests for possible underlying causes.  We have a follow up with Jojo’s neurologist in September. And they will want to repeat the MRI in 6 to 12 months, depending on Jojo’s progress between now and then. So her diagnosis of benign hypotonia stands. For now and maybe forever.

I’ve been reflecting on how I feel about this since her doctor called yesterday and shared the results. Normally I’m relieved immediately and then disappointed to still not have an answer, and anxious to find one. That is not how I’m feeling. This time, I knew the results were going to turn out this way. Not in the normal way of assuming things, or feeling pretty sure. I just knew it like I know the earth will keep spinning on its axis and going around the sun. I feel satisfied, like what I knew to be true is confirmed. I know we’ll never find an underlying cause because there isn’t one. How can I be so certain? Does this make me in denial? Irrational? A little crazy? I don’t know, this beautiful little creature is literally part of me. She grew and lived inside me for the first 9 months of her life. We have a mysterious and cosmic bond, same as every other mother and child.

I talked a while ago about the fits and starts with developmental delays. Jojo will make a big leap, and then we will go for a while with seemingly no progress. We’re living in a leap right now and it is so fun. And it is thanks to this fantastic little contraption. Jojo has mastered this scooter and now is getting around on her own. This has been a game changer. Her curiosity to explore the word is unfolding at a rapid pace.

There is a cause and effect dynamic that while hard to articulate, is easy to observe. The more she can move and explore on her own, the more her intellect shines through, and the more she tries to communicate. She talks all the time, most of which is unintelligible, or what we call babble. Words are surfacing clearly more and more (fork up!) which supports my hypothesis that she has been speaking English for the last year, and the low tone in the muscles that support speech obfuscate what she’s saying.

When Jojo’s brother was first crawling, we had to baby proof like crazy. He got into everything. Seriously, everything. We left all the baby proofing in place, thinking Jojo wasn’t far behind. We had to get this huge obtrusive gate for our stairs, as we have stairs going up and down from the main floor. I’ve been thinking of taking the gate down recently. Then bam! We need it! Jojo is scooting right up to it. She’s opening kitchen drawers, getting out all the toys and not cleaning up. I left a basket of folded laundry on the floor by the stairs and she pulled it all out and threw it around. I’ve never been so pleased and amused to refold a load of laundry.

When our first kiddo got into things “he wasn’t supposed to” I was irritated. I would never have let him tear apart a basket of folded laundry. Which now in hindsight seems absurd. If you have to choose between a neat, orderly home and a kid that wants and is able to explore, well that is a very easy choice to make. Because life is messy, and who cares if your little munchkin adds a little more mess. So to Jojo I say: explore your world, make a mess, figure things out, go, do, pull, push, try, fail, try again, laugh, try something else, scream in frustration, try again, clap and smile, and just keep going. It is all right here waiting for you. I will refold one thousand loads of laundry for you.

We got the results from Jojo’s MRI and there is good news and not surprising news. Thankfully there is no bad news. First the good: there is no structural damage to her brain or spine. Translation, Jojo does not have brain damage and has never had a stroke.

The not surprising news: there was a non-specific finding. What does that mean? It is a fancy way of saying there is something abnormal and nobody knows what it means. Sounds familiar, right? Like the variances of unknown significance in the genetic testing. So Jojo continues to befuddle the medical community.

The non-specific finding: there are perivascular spaces in the corpus callosum. Translation time again. Perivascular spaces are little pockets of fluid that normally occur around the blood vessels in the brain. They are normally in the basal ganglia, cortex, and mid-brain. They are not normally in the corpus collosum, which is just below the cortex and connects the right and left sides of the brain.

There is a group of metabolic disorders this finding is to which this finding has been associated. Mucopolysaccharidosis. Don’t research this on the internet, it is terrifying. It is weird because it doesn’t fit for Jojo. This wasn’t on her doctor’s radar at all. Most of the problems associated with these disorders have been ruled out for Jojo. And it didn’t show up in the genetic test. So most likely, this will turn out to be nothing, or nothing that anyone can make a diagnosis from. Or maybe some mild, rare variant of Mucopolysaccharidosis. The next step is to do another blood draw for full metabolic testing, which we are doing tomorrow. Her neurologist is thinking of this not as an answer, but just another sign post indicating where to go next.

Meanwhile Jojo continues to get stronger and stronger, which is a much better indication of her prognosis than a non-specific finding on a scan. Go Jojo go!

A decent part of Jojo’s life is spent dealing with testing. There isn’t a high count, but when they do happen they stretch out from start to end to form significant periods of time, becoming the tent poles of her life. Gearing up for the tests can be difficult. The anticipation and worry, the preparation, the logistics of taking time off work and shuffling Jojo’s brother’s schedule. Then there is the test itself, which usually puts Jojo through the ringer – needles and blood draws, huge MRI machines. Then of course the results that bring relief in the short term and  anxiety in the long term as we continue to search for answers.

The easiest part of the testing cycle for me is the period of time when the test is behind us and the results are in front of us. I call this content limbo. There are no tests scheduled on the horizon, nothing to get ready for. The results aren’t in yet, so there is nothing to react to, ask a million questions about, worry about what is next. There is just a relaxed period of time while we wait. I find that I don’t fret while waiting. I think because it is totally out of my control. My own actions have no bearing on the outcome of the test. I can’t do anything to make the results come out one way or another. I am not responsible. It is up to the doctors, science, the universe, God, whatever or whoever makes things as they are and decides to reveal the truth to us.

Today I’m in content limbo. Jojo had the MRI early this morning. She was a total champ. It was a cold foggy day here today and we lounged, cuddled, played, napped. The whole family had dinner together. The kids had a bath. Jojo is in bed. I’ve poured a glass of red to get me through some work I need to catch up on tonight. I am perfectly content. We’ll get the MRI results in two to three days and until then, the weight of this thing is not on my shoulders.

Something very exciting happened in the speech milestone realm this past week. During dinner, Jojo held up her fork and said “fork up”. Two words together! It sounded like “for ah” but I knew exactly what she meant. When she’s in therapy, a common activity is to play with a ball or block or whatever and hold it up saying “up” and then take it down and say “down”. This is a game she mastered months ago. She started by imitating. She eventually started initiating herself, and now “up” and “down” (“ah” and “da”) are solid parts of her vocab and a favorite game.

This is a 12 – 18 month milestone so it is hugely encouraging. So, forks up, glasses raised, cheers to Jojo!

Remember a while back when I talked about the genetic testing, all of those letters? Lama1 and TTN. And hubs and I were going to get tested as well to see if we had those same VUSs (variances of unknown significance)? We got the results back and it turns out that I do indeed have the same variances. And I’ve never had gross motor or speech problems. Well, except for the lisp I had until fourth grade. Thanks mom and dad for waiting to start the speech therapy. I’ve been told it was cute.

So what does this mean for Jojo? It means we can say with certainty she does not have a genetic disorder. When I heard this I felt immediate relief. Later that night, long after we’d left the doctor’s office, I started feeling anxious. I’d gotten on an evening flight to LA for meetings I had the following day. I called hubs when I landed, realizing I felt an overwhelming need to be home with him and our sweet little cherubs. We didn’t really discuss the appointment and results much because they were so positive and we didn’t have time. By evening my mind led me to: if not a genetic order, than what? And if the answer is truly nothing, there is no root cause, it is just benign hypotonia, what if all this therapy doesn’t get her to walking and talking? Ever? For the first time, I imagined Jojo as an adult who couldn’t live independently.

Back to the doctor appointment for a minute. After discussing the genetic results, I asked Jojo’s neurologist a question that has been rolling around in my head for a while but had never been able to articulate. Is Jojo’s low muscle tone a problem in the muscles themselves, or in her brain talking to her muscles. Her neurologist nodded her head and said yes, that is the million dollar question. Guess what though. No answer. So that led us to our next step. Jojo should have an MRI to have her brain and spine looked at. There are no concerns or indications that Jojo has brain or spine damage. It is a low probability scenario that we’ll rule out.

She is going in on Tuesday. The MRI and anesthesia are perfectly safe and our hospital is amazing. It will be a hard day as Jojo has to fast starting at midnight the night before. I can just imagine in the morning when we don’t give her milk or breakfast. She’s going to be pissed. And then when we roll into the hospital? It will be bad. I’m taking the entire day off work so I can snuggle with her all day long.

So why did my mind go there? Imagining Jojo at 20 years old, living with us in a wheelchair? That has probably been lurking under the surface of my consciousness all along and has been too painful for me to handle until now. The brain is such an amazing thing, it protects us. So maybe now I’m strong enough to handle that possible future. And it is freeing to consider all possible futures with our little Jojo no matter what they may be. Because the truth is, they will all be perfect with that angel.

I have two important pieces of information to share: #1 If you haven’t seen the movie Sing yet, you must watch immediately. It is so great. And it really holds up. I’ve watched six times now. And #2 Jojo has a theme song, thanks to my obsession with #1. It’s the song that the Porcupine Ash performs. Which is Scarjo in real life. Anyway. It got stuck so firmly in my mind that I started listening to it on Spotify. Then I added it to my running playlist and man, does that song get me fired up. While running and listening I suddenly thought of Jojo and how it what I want to say (and what I want her to say when she can) to her low tone and resulting delays. Also I just love watching Gunter the pig rock out to this performance in the movie. The fully lyrics are here but I’ll hit the highlights that make it Jojo’s perfect song:

When we go for long stretches of time without a major developmental milestone happening, it can feel scary. I start to worry that Jojo is not going to catch up. What does catch up mean? To me, it means she will overcome her delays quickly enough to eventually be in the normal range of capability for her age. Because ultimately that is what we are working toward. All of the therapy and services, all of the work we do with her at home is to get her caught up. Normal. Unfettered from anything that would hold her back from what she wants to do in life. So when weeks or months go by and she isn’t doing anything new, doubt creeps in.

When one of these long stretches comes to an end, it is so joyous. And last Friday was a joyous day. Jojo stood on her own two feet. No leaning on the couch or other piece of furniture. Just the light touch of her PT’s hands to make sure she didn’t fall. Words on this page cannot do justice to how I felt when I saw her standing. I was filled with pride and happiness. And to best honest, relief. Because as much as I try to stay positive and always believe she will get there, I need a bit of proof every now and then.

Yesterday she had PT again and she didn’t stand. And that is ok. Last Friday will keep me going for a while.