No Solid Ground

Ellie between surgeries. 

It's been an unexpected roller coaster of a 2023 so far. In November of 2022, 9 days after Ellie's 20th birthday, her shunt failed. She'd had it for literally 20 years with no revisions.  I'm writing this from Children's Hospital Boston after her 6th revision since that first one in November. She's had a rough ride through meningitis/ventriculitis when that first revision got infected to External Ventricular Drains (EVDs) to revision after revision. The bacterial and protein debris left over from the infection has been wreaking havoc on the internal catheters and the programmable valve. 

It's been rough. I am hoping this is the last revision needed. They replaced the blocked valve. The cerebral spinal fluid was really clear and she bounced back really fast. Here's to hoping. For now, Ellie is holding steady. She's still just as amazing as ever and the starlight never left her eyes in this latest surgery. It did in November. At that point I realized my assumption that she'd outlive us is entirely baseless. That changed me in a deep, deep way. The call to be present and be with her here and now is clear.

Between struggling to find stable carers for Ellie and trying to get to a solid working shunt it feels like the ground beneath us is always moving. It's like trying to get sea legs. 

This whole experience is such a call to really consider our lives. I learned that it can't only be about Ellie. Dave and I have to create a life that we can live too. We are getting older. It made me want to move to a warmer more arid climate - possibly back to California/Los Angeles. Right after that thought the atmospheric rivers hit the state....Dave's take was that we'd know which parts not to go back to.  

I also feel like we have been living on borrowed time. We've been so lucky to have had 20 years of no revisions. Hindsight is everything of course. 

We are supposed to go home today. Ellie's got mixed feelings about it. She has been so very tired and a bit irritable as a result of unstable intracranial pressure. The image of water moving, rivers flowing and getting blocked comes to mind.  Various areas of the country are awash as well. It's all fractals.

If there is no solid ground what do you do?  I don't really know. 

I can tell you the things that have shown to be lasting and real are my relationships with Dave and Ellie and my business partner, friends, and my clients. All people in motion, on their own rivers. 

Seems obvious it's all about human connection beyond any routines or expectations of what the next day will bring. I still plan things. I just signed Ellie up for camp in June and it felt like unbridled optimism to do so.  I'll be prepared and responsible and on top of things I have planned. But I don't quite trust in my plans.  

It's been very humbling. I can only trust my inner knowing, be sensitive to, curious about, and responsive to the conditions that present themselves. I do feel a grinding down my ego and any arrogance I may have about control. That's probably a good thing.

The contemplative practices I learned as a teenager are put to the test too. Mindfulness meditation practices actually do work  - they reset the brain and body to reduce inflammation, etc. 

Discipline within the flux of a storm. Can't get into a regular routine so be opportunistic in the moments of quiet to fit things in. Like right now, writing this. 

How do you deal with living on ever shifting waters? I'd love to learn from you. 

Love,

Kathryn

Transitions and Systemic Challenges

 The population has outgrown the infrastructure in the United States. What do I mean by that?  Quite simply, doctors predicted that the population of disabled children would not make it to adulthood. Accordingly, systemic supports  (food, housing, carers) for disabled adults stayed small. However, due to medical advances, those children have made it to adulthood and there are few options as they transition from the age of entitlement (under 22 years old) to the age of eligibility.  Entitlement means the state must provide services because it's the law. Eligibility means the person would be considered for services if they were offered and if they existed.  BIG DIFFERENCE. 

The effects of this population / infrastructure imbalance in the United States are many. Here's a short list of some of the negative impacts - some. 

1. The burden of care falls on aging parents. We know many stories of parents caring for their disabled adult child until they themselves become ill or die.  I am searching for studies on the overall health of parents who survive and live with a child who has had severe disability and is total care. The stories of this are very sad in that all parties involved are isolated and involved in a stop gap solution. 

2. Group homes are understaffed especially since the pandemic where what little infrastructure there was, was gutted. We have spoken to social workers and directors of not only group homes but day facilities who have all admitted that the standard of care is to keep the residents alive (fed and clothed) and not much else. We've visited group homes that reeked and where the vulnerable resident's health was not tracked or ever reported.

3.  Abuse is rampant. Due to understaffing and poor systemic infrastructure the vetting system of staff hired to work in group homes and day facilities is poor as is their supervision. Abuse is under reported. The most vulnerable among us are at huge risk and being abused. 

4. Those that work with disabled populations as a calling are highly skilled. Often they have degrees in the field. For all that care, education, and knowledge they are paid minimum wage. They are essential and paid horribly. This leads to a lot of turnover in these jobs as they age and may need to earn more money if they want to support a family for example. 

5. Graft. There are cases where money is put aside to solve some of these problems or at least help but the money doesn't get to where it is intended at the local level. 

In the US you can call your local elected representative or senator and ask them for help. Remind them you are paying taxes.  En masse I'd hope that may create some change. En masse this serious issue may get some air time. 

It's daunting, disheartening, upsetting, and scary. Ellie will out live us both. She's doing great. And she is total care, nonverbal, and intelligent, curious, loving, and very, very vulnerable. It terrifies me what will happen to her when we pass away.  The day before she turns 22, school will end. It's a big cliff we are about to go over in November of 2024. We are researching, visiting, searching for options which is how I discovered what I wrote about here. 

If you are a parent/ guardian in the same boat, what is your experience? I'd love to hear from you. 

Picture description: 19 year old Ellie working hard sitting independently at physical therapy this August. 

Happy Holidays and New Year!

 Hi everyone,

Ellie's new glasses

As I write I can't help but wish health, safety, and happiness to all. It's been a hard time for many as the pandemic continues on and climate change wreaks global havoc. And yet we go on. We have been so lucky and privileged to have remained COVID free. Ellie continues to thrive. She has her own radio show now. She has named herself, "DJ Llama Donkey".  No idea where she got that, but there you go.  You can find her at the links below.   The extraordinary thing about her doing this show is that she'll focus for a couple of hours working with Dave to pick the songs, decide the order and shout outs and then create her own songs.  2 hours.  Is it the lion's mane we have been giving her or just more evidence of the brain's plasticity?  Either way, I'll take it. She's really proud of her work too. They are seeing the same thing at her school where she gets to be on Perkins Radio from time to time.  Parents are only has happy as their most unhappy child. In our case, Ellie's pretty happy.  Below are some pictures of her to share a bit of our year. Much love to all, Kathryn 

At the beach this summer in her hippocamp 

Ellie's 19th birthday party

Beautiful Warrior Princess

At her school, rocking the vocational program!

Twitter @djllamadonkey

https://twitter.com/djllamadonkey

Radio Station Link

https://djllamadonkey.airtime.pro/#

2021 Check In/ Be In

 Hi Everyone,

We are still here and all vaccinated with Moderna. Because of Ellie our whole household and her carers were all able to get vaccinated. Dave and I are classified as "in home unpaid essential healthcare workers". Ain't that the truth! ;-)

I'm still worried about variants but not so freaked out about being within 3 feet of people while masked at the grocery store and not so freaked out when people walk by Ellie really close (we are obviously still masking while in public).  It is incredibly to read the news and see how many people are not really distancing in stores and to see the spring break events that might be super spreaders. Everyone is really fatigued by it all. Now that it's spring and the weather is a little warmer I do feel a life of energy. There's still not much to do, it's still very repetitive, but I'm trying to pull out of that fatigue.  Ellie's feeling it too. She's quick to cry and was just sick with some mystery virus - 102 fevers for 4 days with advil. She was tested and it wasn't covid but still hard. She's been tired. We worry about her iron levels and her diet.  I just found this great book: Dropping Acid by two doctors who researched reflux and the pepsin issues.  I have reflux too as it turns out - the lump in my throat that has been a constant for years and the hoarseness of my voice. My voice was so tired at the turn of the year my vocal cords would seize up. Not good as my job is teaching, coaching, consulting and all over zoom. Turns out the combo of 'silent' reflux, too much singing to Ellie in the months we  had no help, and all the zoom meetings contributed to vocal cord fatigue.  So I need to change my own diet AND I really needed to change Ellie's too.  Turns out the number one reflux food is chocolate and I had been giving her chocolate (avocado) based pudding every day. No wonder I have not been able to get her off the reflux meds! ughhhhhh.  The good news is avocado is a great food for refluxers. 

What I love about this book is that it's about controlling reflux with diet.  Have been revamping all her recipes and need to expand her diet anyway. It's an ongoing dance. 

This spring some of her favorites are:

Ellie's favorite hairdo - the big bun!

Obla di Obla da (especially the Gabriella Bee version)

Footloose by Kenny Loggins. We tried to watch the remake but it starts with a car crash - do not recommend. She liked the 1980's version better anyway - go 1980's - it's way less violent.

Ellie says that after the pandemic she wants to have a family reunion and go to Africa - specifically - Egypt! I'm so there...some day.  She also wants to go to her local coffee house again and do iPad club there. She misses the bustle of the place. 

She's still into dance parties and jam sessions. 

We are nearly done with all the Harry Potter books. 

She was doing virtual school for so long one of her favorite things to do was go visit her school at the weekend and look in the windows. She definitely struggles with the constraints of school (e.g., the schedule) but she certainly loves it just the same. 

Ellie at her school.

We started bullet journalling including 1 for Ellie for us to track her diet and care daily and she has a journal where she can recorde favorite questions, put photos in there of selfies with carers, and record her monthly top hits. A carer gave her this to track her hair styles too and Ellie really likes it. It's a way to give her choices too. We got her a little instant photo printer that she can use with her iphone. Oh - yes we got her an iPhone so she can keep in touch with her friends and family.  She likes doing selfies. 

That's the latest.  It's a hard time globally for everyone. Waayy harder for some than others. Everyone is under so much pressure. There's tension between those with privilege and those without and COVID deaths report that better than anything else. I am hopeful that coming out of this there will be social and environmental innovations that make the world a better place. 

Hope matters. Everyone is in their shadow - so compassion matters too.  

If there is anyone reading this - I am wishing you and your loved ones grace. Wish that for me too. I need all the help I can get. ;-)

2020 Post, COVID-19 Edition

Hi Everyone,

Checking in. We are ok - COVID-free so far. We are pretty much trying to shelter in place as it'd be bad if Ellie got the virus. She eats by mouth but a teaspoon at a time. A 1/2 cup of puree can take her 30-40 minutes to eat pending her appetite. When she is sick that time period can triple making it hard to keep her energy levels up. Her drinking is about a tablespoon per "drink". For Ellie drinking means we pour a small bit of water into her mouth and she then carefully works to swallow it.  She has low lung capacity from having had borderline chronic lung disease as a preemie and no capacity to do aerobic exercise. I don't know, due to her low muscle tone/hypotonic Cerebral Palsy, if she'd be able to cough it out if it went in her lungs. It could get into her brain or heart per the sequelae that has been reported.

Ellie in her stander.

So best not play a deadly game of dice with her. We are playing it safe, keeping her home, keeping ourselves very distant from others.  This thing is so contagious if it entered our home we'd be hard pressed to keep it from her as she is total care. We are blessed that we can shelter at home in terms of still keeping our jobs (so far) and having found ways to get food delivered.

Ellie's transition to "home school" was hard on her. We found about about 3 weeks in that she thought she was the only one who had been sent home. She started talking about "old school". She was really weepy breaking out into tears at random. Grief visits us all this way, a friend who stops by unexpectedly at the oddest moments. I think she thought she was being punished.

Once we found out we started reaching out to teachers and students to show they were at home too. That helped.

Her other upset was to realize that being home was not equated with the famous "no school" and that home school was an actual thing. That was quite a disappointment in her young life indeed.

Her teacher was also very slow for the most part to go virtual. They were uncomfortable with tech but also had already had trouble connecting with Ellie.  She is a bit adrift of connection and the poor handling of zoom  webinars means she is talked over, the pace is too fast and she is left behind with sensory overload. It's disappointing and an organizational psychologist I get what a huge sea change this is for the teachers. So patience is king here as we all pivot and shift and deal with the struggle to manage everyday things that were once easy that are now hard.

AND I get it that this comes from a hugely privileged place. My "problems" are good problems to have versus real problems including poverty and skin color discrimination and flat out danger because I am white. Life, is and has been for hundreds of years, exponentially harder for brown and black skinned fellow homosapiens here.  I am reading Ibram Kendi's How to Be an Anti-Racist and just finished D'Angelo's White Fragility. If I want there to be more tolerance in the world for difference I need to start with myself and unravelling my own racist indoctrination. I have been working on that for years but am riding the wave of momentum to take more direct action, as a leader in my organization, to accelerate the dismantling of systemic racism where I have influence. What's that saying, never doubt how small acts can help change the world..etc.

The world is reordering itself. Some battles will have to be fought again - like equal access for those with disability to attend school. A new class of people has formed - those vulnerable (and those caring for them in their homes) to the virus versus those that are not. It's a difficult time right now for billions of people. Things are unstable in the US in a way that is unprecedented in my own life time.

For the record - the US did not vote Trump into office. Hillary Clinton won the majority vote. But due to our antiquated electoral system, Trump was able to steal the election just like George Bush Jr. was able to steal it from the environmentalist, Al Gore. Can you imagine how much better the environment would be if Gore had won (he also won the popular vote)? I hope all of this wakes up all the people who don't vote, who don't participate in the active process of being a democracy...which we barely still are.  Could be that we are not and I am just in denial. It is a horrifying thing to understand how deeply flawed our democracy is.

Anyway, I am thinking about all the parents of special needs and typical kids, fellow bloggers and blog readers I have met in writing this blog over the years and feeling protective and worried for us all.

Ellie's Healing Powers

It's been roughly over a 2 months since we were in the ER on New Year's Eve wondering what the future would bring...wondering if she would still be here...still be whole...still be her sparkling, musical, snarky, happy, sweetie, intelligent self.  (scroll down for this back story)

When the ventricles held their own they tested her for other things and found she was anemic.  The symptoms of anemia are very similar to symptoms of pressure on the brain: fatigue, out of sorts, pain, etc.

We treated the anemia and she is back to baseline and along the way they took several more scans...and still no change in her ventricles.

The doctor's proffered up some scary options...over my dead body types of options...no you may not drill into her skull to insert a pressure gage to sit on her brain "just to be sure there is no pressure"...look to the child for crying out loud and the child was only minimally symptomatic.

There was that whispered hope though that maybe, possibly, her body had figured it out...we'd have to wait and see which felt like playing Russian Roulette with her life. As every parent of a child with any chronic medical issues knows, it's alway navigating toward the lesser evil when it comes to medical interventions. Wait and hope she doesn't get more brain damage or do someting that could give her more brain damage... shitty choices indeed.

We waited and scanned.

Our last visit to the neurosurgeon - who has taken a team approach and discussed Ellie with her pediatrician - I like her because of that - said that she had studied all Ellie's scans and that she suspects Ellie's shunt hasn't been working for a long time. The only clear scan of it is really years ago.

That and the fact that there has been no change.

The plan is this: scan her again in three months. If that is ok, then scan again in 6 months. And if that is clear go to yearly. She suspects Ellie is shunt independent.

This means that our child who left the NICU deaf now has perfect hearing.
Our child whose vision was so very minimal is now at 20/200.
Our child who had ventricles that could not drain the brain's cerebral spinal fluid because they were filled with scar tissue from the bleed, can now do that on her own without extra plumbing...

The messages I have been giving Ellie are that her body has amazing healing powers. That she is so very strong. All of the doctor's visits and the conversations have of course scared her as much as us.
The message is, your body is an amazing healing machine!

She gets a little smile when I say that too her...she's pretty patient with me...

Inter-Ventricular Shunt Discontinuity and Other Nightmares

Ellie in the ED 12/31/18

Hi Everyone,

I thought 2018 was a rough year. 2019 came in before the ball even dropped and decided it was going to get real.  We spent the better part of December 31st, 2018 in the Emergency Department with Ellie getting a whole bunch of tests to make sure her ventricles were the same size. It started bright and early when we took her to her orthopedic doc to get a spine x-ray to inform those making her new body jacket. Ellie has a bad curve that we are keeping at bay through a number of things including: a back brace/body jacket/ TLSO, daily tummy time and back strengthening, and weekly network chiropractic. Network chiropractic is very gentle and has helped both me and Ellie a lot!

The doctor came in after the x-ray to meet with us and told us that Ellie's curve is stable. But then he showed us the report from the radiologist that said her shunt tubing was disconnected at c4 and c5.  When he told us that my brain when into slow motion to explain it to the rest of me. My thought was, ok... so the tube that comes down from the valve connected to the shunt that goes into.. her brain.. to drain her cerebral spinal fluid (CSF).. that gets stuck in her ventricles because of the scar tissue that formed after her inter-ventricular hemorrhage as a baby... is disconnected....WHAT?!!!!

He calmly advised us to go down to the Emergency Department right away and that they had called ahead and the team there was expecting us.

So that happened.

We got out of there by dinner time - which is really unusual. We only left after all the tests turned up no infection, etc. Her ventricles, thank god, were the same size and still really small.

You might ask, why didn't they just operate to fix the tubing and be done with it?

Good question. The thing is, since her ventricles were the same size, there are two possibilities for what is happening. The first, and most likely, is that the shunt tube formed what they call a "calcified track".  I wish it was actually calcium as it'd make a more stable track. But what they mean when they say that is, the body treats foreign bits in it as something to be contained. To contain the shunt tube it formed scar tissue around it. When the shunt tube broke the "calcified track" began acting as the tube. The problem is that the body will now treat the ends of the tube - the broken ends - as foreign matter to be contained and will calcify around them too. It may only be a matter of time until the track closes. When that happens there will be nowhere for Ellie's CSF to go and will blow up the ventricles like balloons, squishing her brain. This could lead to a number of horrible things including death.

But there is this other possibility which is rare but not unheard of. Some times kids who have shunts do become shunt independent. Meaning - their bodies just figure it out and the shunt may break but there is no change in ventricle size. No one knows why and it's rare.  I wish for this to be the case for Ellie.

AND this is one of the reasons they are wary of going in and just replacing the old tube with a new one. If they do that, and Ellie was actually not depending on her shunt to drain her CSF, then that could hurt her too by over draining the fluid creating more problems.  Additionally, since this will be Ellie's first shunt revision since 2003, the revisions don't usually work correctly right away leading to a "flurry of operations" or so the neurosurgeon said. I am sure it feels like a flurry to them....but you get the idea. There is huge risk of complications from anesthesia as well as infection with each surgery and a huge emotional and physical toll on Ellie. 

Oh yes, and the brilliant neurosurgeon who initially revised Ellie's shunt when we got to Boston 15 years ago because none of the docs in LA could get it right - she's on sabbatical and unreachable. We are scrambling to get a new team together and will meet with them on the 23rd or earlier if Ellie becomes symptomatic.

I feel like I am living in a bit of a twilight zone to be sure. Ellie had been sleeping an hour extra a night and we were saying, "Yay! She's finally sleeping in a  bit like a teenager does!"  But no, of course not. She's a morning bird. So at first we thought this was a neuro symptom, though it wasn't this time.

This last weekend we were back in the ED because she spiked a fever (which could mean an infection). When we got there we also found out she was tachychardic (heart beating in the 143 BPM range) which was really concerning. Again, a ton of tests. Again her ventricles were the same size. Luckily they have this new quick Magnetic Resonance Imaging scanner that is amazing and they don't need to put her out for it. Technology has come a long way in 7 years.

However, they found her hemoglobin was at 7 when it's supposed to be a lot more. Her poor heart was pumping twice as hard to deal with her shrunken red blood cells.

Now I feel like we are in a race against her ability to form scar tissue around the tube ends - meaning we have to correct for her anemia as she's not strong enough to have a surgery if she needed one. After 48 hours they let us go home with an iron supplement and follow up appointments to get her blood tested in two weeks.

Suffice to say, we are on it. I make her this great mushroom soup that's vegan because when she was little I tried to give her meat but she would vomit it up. It is clearly time for a new trial. Dave cooked a filet mignon and we put it in the vitamix with the mushroom soup and it tasted amazing. You couldn't really tell it was in there. It just made the soup a bit richer and Ellie ate it down. She is her father's daughter and he always says he needs meat for his blood when he is feeling depleted. I used to think that was funny. Not anymore.

She is also on a prescription iron supplement and I am redoing all her meals to be iron rich.  It's probably also a testament to her whole foods diet that she didn't appear more symptomatic with this until it was advanced.

It takes about three to four weeks to build up the blood again. I feel terrible this happened at all. Whenever both Dave and I get busy things fall through the cracks and clearly we don't have that sort of luxury in our lives. Nor will we ever. It's also made me rethink what I wrote about in my last post.

Yes, it's important to prepare for the future.  However, I was so focused on that and taking on extra work to prepare for that, that I was less focused on the present. Sitting in the ED on New Year's Eve when we didn't know what would happen I had a reckoning. I kept having these flashes of her empty room and what my life would be like without her. I honestly don't know how I'd ever handle that. I realized I needed to make the most of my time with her each day because there is no guarantee.  I hold that equally with the fact that I fully plan for her to outlive me. But, these episodes have shown me how precarious an assertion that is.

On New Year's day we were all happy to be at home versus at a hospital. I asked Ellie what her New Year's wish was for 2019. She signed mom and then used her voice to say "time".  And I asked her - do you want more time with mom? She signed yes.

I do think she reads my mind half the time.

She is feeling better today as the nutritional interventions help "build her blood".  Ellie is amazing as she ever was.  She's still the most joyous person I know. You could tell almost immediately how much better she was feeling as she would just giggle out of nowhere. Or maybe she was just laughing because the iPad restrictions we put on her were not in use when she was in the hospital. ;-)

She loves a challenge.

Because her life depends upon it...

Hi Everyone,

Ellie Prom 2018

Ellie turned 16 two weeks ago and I can hardly believe it. Because she is 16 we are thinking a lot about what they call in this country - transition.  For special needs parents it's really Transition - with a capital T.  It's when Ellie will go from "entitlement", meaning being entitled to services like school, to eligibility to programs - meaning no guarantees that she gets in. It also means minimal oversight or regulation in terms of quality.  Special needs adults are on their own. 

School for Ellie ends the day before her 22nd birthday.  Ellie's school and other agencies hold "Transition Fairs" to get you thinking about all of this. Right now, under entitlement, Ellie goes to school and during the day the school provides not only learning but physical, communication and occupational therapies. There are also after school programs that Ellie gets to attend. It's in a word: awesome - meaning truly awe inspiring in terms of what she receives from her school. She is really happy.  When she turns 22 - unless we figure something out - all of that stops. We are starting now. My goal is to create an enriched day program where Ellie and other 22 somethings with CP can keep learning from wherever they are at and keep having a supportive community around them.

I wrote about this last February and since then we started exploring other day programs too to understand what is out there even though the main plan is to create our own enriched day care. So far that exploration has been pretty dreary and the stories we have heard about other kids in terms of the later half of their life have also been pretty depressing. An example is our neighbor's daughter who lives in a group  home nearby. The parents took care of her at home until they were in their 70s and the mom got sick. She used to be able to get out of her wheelchair to go to the bathroom and she used to be very communicative in many ways. Since she moved in 5 years ago she has gained 40 pounds because of all the pasta and cheap food they feed her. She no longer can get out of her chair herself and there is a list of other things she no longer does.  This is my nightmare scenario for Ellie.  And you know what, it could be even worse. In 2009 a state facility in Florida got shut down because the staff were hurting patients and killed one by putting bleach in the guy's g-tube.  Abuse happens to the vulnerable. It's horrible but it does.  My question is, how do I protect her from things like that after I am gone?  It's a big scary overwhelming question I live with every day.  It's also a galvanizing source of motivation. And the 5 years until she is 22 are going to go quickly.  As we figure this out I will keep you posted. Hopefully I will have good news and be able to build something great for her and others. Right now part of the plan includes me working two jobs to be able to renovate the space.

Ellie at 16:

• She went to her first prom with her Dad in May of this year. She picked out the dress on her own and you can't deny she has style.
• She has a best buddy for the first time and they are both Swifties. 
• She is unplugged from iPad and devise / computer based play right now so that she can focus on her communication and widening her circle of friends. This is the hardest transition of all in that we have to change ourselves. We have to insist on her using her voice and we have to insist that she work hard to do that. As she is our only child the current way we have been parenting - where we pretty much do everything for her has proven to be a de-motivater for her to socialize much with others or go along with other plans or activities that are not her own. This is on us so now we are working to change it. That is what the transition fair taught us - that we need to get others engaged in helping/ connecting with Ellie in parts of her life if we wish her to have the best support network possible. We have to change to ensure that. We are not great at asking for help and that is why we typically do it all along with the helpers we hire.  It's on us to create conditions that motivate Ellie to connect with others - to care to do that. 
• Ellie is taking the bus home from school for the first time and it's going great. We live in a new school district and it's a safer set up. She is doing beautifully with it. 
• Ellie stayed overnight at a school camp for two nights and loved it. She came home and said the best thing was being away from her parents and that she wanted to do it for a week...as this is typical teenage sentiment - part of me is happy to see this reaction! ;-) We are working on figuring out sleep over camp for a week next summer. 
• She's doing beautifully with her power chair.

One of our main goals for Ellie not just this year but for a long time is for her to be able to communicate with others. Communicate her needs, her thoughts, her cares and connect with others. Her life literally depends upon having a say and being able to say. We cut out iPad and computer for the moment as she all she wanted was those devices no matter who was around. Not a great start on widening her circle of friends.  It's not stranger danger after all. It's being able to connect with others. How many people have come into your life at just the right time to give you that bit of help whether it be wisdom or a kind word or aid in some way?  That's less likely to happen with your face buried in an iPad. She did like the idea very much that her main job is to help those who help her because she's the boss. ;-)

She's Driving

Ellie is working on driving her electronic wheelchair. We hope to get to bring it home this summer! 

Stand Out Days

Hi. Back from my surgery - new hip installed. Very unhappy to find out the technology did not include iron man type capabilities or even Wifi, but then again my bar was set pretty low. It's been so long with that joint not functioning that my main goals were to be able to stand upright, walk without a limp, and not be in agonizing pain all the time. So far I have met goal one. Am working on healing and physical therapy to get to goals two and three.

I'm sitting here now with Dave, Ellie, and Nanny Bernie as they make a portfolio. It's part of a kit she got from her uncle. Ellie's attention is waning but Dave is gently keeping her in the game. In school they teach the kids about having their "brain in the group" and identifying which zone they are in and which emotional zone they need to get to, to have their brain in the group. I  love all of this. Adults need it too.

The folio is meant for a sketchbook but Ellie wants to put her newbies in it.  Watching them work together to make this is the most heartwarming thing and I feel grateful for these lovely souls who make up my family.

More pics later.

I hope you feel similar awe about those closest to you and if you don't now - I wish it for you in the future. I know what it feels like not to have that so maybe that's why I am so grateful now.   That's the thing about adversity. It kicks the entitlement right out of you and makes you appreciate what you have.

Happy 2018 and Ellie is 15

Ellie practicing her sitting at PT

Hi Everyone,

It's been awhile. Where to start...Ellie is doing great. She's healthy, happy, and very 15. She got Taylor Swift's new album "Reputation" for Christmas and has been listening to that and dissecting the songs she likes best. She seems to really study them. Whenever she loves a song she will get on her computer and find it on YouTube, slow it down to .5 speed and play parts over and over until she has them. Then she looks up the lyrics and those online tutorials about how to play it on the piano. These look a little bit like guitar hero which she also slows down and studies.  She goes deep! In other news she is making progress with her electronic wheelchair which will come home with her this summer. She also got a new voice that is iPad based with a key guard and it's much, MUCH better than the Dynovox. It's many pounds lighter, the battery lasts hours and hours more and it's easier to use. She continues to make progress using it sometimes to our chagrin when recently when she said good by to a new carer we were interviewing and I quote, when she was asked to say goodbye she said, "I don't care. Goodbye!"  So much for manners but also, I think I am going to switch to saying, Ellie, so and so is leaving. Versus asking her to say hello and good bye like she's a little kid. I have to change too and start treating her like she is 15. To her credit, it's hard on her when there is a change on her team. As it turns out this person was not the right fit so we probably should have listened to Ellie on that one.

Her hips are doing well. She still does not sit criss cross anymore. I haven't tried to push her on that. She lost some range to be sure on her right hip. However, her hips are not pulling out of their sockets anymore. Trade offs. Her feet are also staying relatively straight although one side is slowly starting to turn again despite the surgery. That is the bummer of CP. Still, I am glad we did those surgeries.  Our biggest issue now is trying to keep her spine from twisting. We are careful to watch her TLSO/body jacket to make sure it's doing it's job. But, again, a trade off. Like the women who used to wear corsets - the price of that spinal support is weak back muscles that then offer limited support to her spine.  We are working with her to build back strength by doing tummy time and having her push up into cobra when she does this. She is getting stronger but I don't think we are doing enough. She's a happy kid for the most part though. She is very keen to watch the weather for possible snow days where she gets to stay home and dance, dance, dance.

She's still a sweetie pie. I think she has reached her final size as well. She didn't make it to five feet but she can wear xs small at the gap so she will not have to be in children's clothes forever once she is an adult.

Kids like Ellie are living longer. The world has not adjusted to that fact yet. I am working on a plan to create a school for her for when she is 22 and can't go to school anymore. I have been told I can't call it a "school" because "school" is only for the under 22 set. But it's still going to be a school.  Why shouldn't Ellie and kids like her who have spent countless hours in hospital and in bed recovering, who have missed a lot of school, keep learning after they are 22?  I get that public funds are not the same but there are funds that already go to supporting people with severe disabilities in some states. Ours is one of them. However the bar for learning in these state centers seems low for the most part. I believe the lack of emphasis and urgency on the need for continued development of kids/soon to be adults like Ellie is rooted in and antiquated understanding of the brain. When Ellie was born in 2002 the doctors told us that whatever she achieved by age 5 was it, because the brain stopped developing at that point. This very wide spread understanding of the brain as been proven wrong by science over and over but our society has not caught up in terms of structures and supports for our children who will live to adulthood with cerebral palsy.  Ellie's brain, like mine and yours, is capable of learning and developing for her whole life. I want her to have a place to go where she still gets to learn science, history, art, math, literacy, art, music, etc. Where there are expectations of her to do so. I can't stand the thought of her at one of those centers where it's really glorified  baby sitting with "activities" that have no real plan other then keeping the clients busy for the day. The thought of that makes me sad and I have visited a few of them and they made me feel very sad at the idea of Ellie being in them. I want Ellie to keep learning and growing. I want to keep bringing the world to her which has been our philosophy all along. There has to be a way to do that.

Ellie with "Drop Mix" making mashups Christmas day 2017

To that end I want to start a school for 22 somethings like Ellie.  It will be a day program with a trained teaching staff as well as specialists. That's the other thing that is a bummer about school ending at 22. Currently Ellie gets occupational, physical and speech/communication therapy, right at school. At 22 that's done. We will have to find a way to get her to these specialists and keep our jobs at the same time. Ellie is still going to need all those services which will still be of great benefit to her. You can see the problem right?  Anyway it's a daunting task to be sure. I have the building to house the school and now have to go through the process of converting it, getting it up to code (after I figure out the codes), get approval for it, see if there are grants or funds I can apply for to help run it ongoing.  Decide to either be a non profit or an "enriched day program" that can receive state and federal funds. One of the special ed teachers i consulted with said the space could fit fifteen young adults with CP, wheelchair users. This does not solve the problem nationwide but I do hope to create a new model of care that may be scalable to other states.  There are probably other societies that take all I say here for granted, Of course! We do this already!, I can hear them say. Fact is, it doesn't work this way here or anywhere in the US. Just a few things to figure out... For me, and I have written about this before, it's about keeping Ellie safe, happy, always learning and respected. I worry about what will happen to her once I am gone. If I can build this, that will be where she can go and have a community around her. That is my goal. It will benefit her peers in the same boat. It's overwhelming to think about but I have 6 years to do it.

I haven't written much because I am struggling between work/life balance and have an injury to my hip that is not resolved. I am not sleeping well from being in pain all the time. I hope to resolve that too in the coming months. 2018 is a year about getting back in balance and finding time to do more than just work.  That may sound counter to the work at hand I outlined above, and maybe it is, but there has to be a way. It may just have to go a little more slowly than I am used to. It's funny how all the skills I learned in my twenties (exercise, nutrition, mindfulness, creating spaces that feel good and support healthy creativity, etc.) are all so important now but due to lack of time are much more difficult to implement. Change starts in small steps and innovation comes from a million subversive acts - meaning shaking up the status quo. I find myself at such a juncture where something's got to change to make this journey more sustainable. I will keep you posted. To the lovely person "anonymous" who wrote recently, thanks for your kind thoughts. I hope all of you out there with similar challenges are finding some ease in 2018.
xo
Kathryn

Happy New Year!

New Year's Eve 2015: Ellie and Mama and Serafina

Hi Everyone,

As usual I have been meaning to write for some time now.  Life has been a sleep deprived whir since Ellie had her surgery two summers ago. She turned 14  this last November 9th. 

I feel like we are on the downhill slide toward the day when she is 22 and can no longer go to her amazing school.  This is where I have to bring myself back to the present - take a deep breath and get back to describing the past year. 


Her feet have stayed walkable for the past two years and she is just back in her stander now after having another surgery to get the pins out this Fall. You can read about her first surgery here by scrolling down a bit. We did it to stop her hips from popping out and to correct her clubbed (due to her CP) feet. This fall we had to get the pins out. As you can see by the picture it was a ton of hardware in her tiny frame.

The titanium they took out of Ellie this Fall

The pins coming out wasn't supposed to be the big deal it was but they also lengthened her ham strings. So it was another big surgery for her one year after the initial one. 

The recovery included her being in a wedge and knee immobilizers 24/7 for 8 weeks she didn't sleep through the night for about 2 months after the surgery or maybe three. It's been so long since she consistently slept through the night I have lost count. When she was in the wedge, she had to change position and was uncomfortable in the knee immobilizers so she was pinned down. Then she was weak and couldn't roll over. I can't blame her. Dave and I take turns getting up but I can feel that we are not as young as we used to be and I haven't totally healed from the two surgeries I had a year ago either. It was a tiring year where we accomplished a lot that I haven't had time to write about. Still, I won't be sorry to see the back of 2016.

Ellie in Knee Immobilizers as Tay Tay

I am glad we did the surgeries for Ellie.  There is a lot of hesitation to do interventions for good reason when you have a kid with CP.  Doctors always want to cut. So parents have to be very cautious on what to do and get second and third opinions. Standing is important to keep the internal organs healthy and to build bone. Hips popping out of sockets because of the neurons continually firing in the muscles so much that it pulls her bones out of alignment is not good. I can see her CP pulling her right foot in again which is a bummer but not unexpected. However, the relentlessness that is high tone is like holding back a flood - it's persistent and due to her brain injury at birth. I wish I could fix that versus the many sequelae you have read about in this blog.

Ellie and Donaveil

Ellie is doing well despite all and I think is far more resilient than me. She just got back from our trip to Disney World. We went there to celebrate her entry into the teen years. She wasn't able to do it last fall because of the surgery so we are a year late. Then she had one week of school where she got to share the experience with teachers and classmates to much ado! She's now having a staycation over the Christmas and New Year holiday, and I think, quite happy for it. A big accomplishment is that she just got cleared for an electronic wheelchair! We ordered it a month ago so it will arrive in several weeks. She's getting her own wheels! We are excited but also think, in fairness, she may use it mostly at school at first. These things are like little tanks that don't take well to the presence of walls or narrower doorways. The wide smooth hallways of the school will be the practice ground initially.  

For the first time ever, she says consistently that she loves school. She doesn't complain every morning like she used to. She's with a class of other middle school girls who can walk or use electronic wheelchairs and talk. They are pulling her forward and out of her shell. It's exciting to see her doing more and being more outgoing. 

Fairy GM's Fav song is also Shake It Off!

Disney: From a disability perspective, Disney, quite simply, rocks it. We stayed at the Bay Lake Tower on the monorail and it was excellent. Everything was accessible. There were even lift chairs into the pools and the hot tub. The staff was great and accommodating. They even rushed to put ramps down on and off the monorail and there were tie ons and a lift on to the massive Disney bus that got us from the airpot. They schlepped our luggage from the airport to our hotel which was a welcome relief. Our room had wide doorways and accommodated her wheelchair just fine. There was space for her to dance and a full kitchen for us to make her food with a view of Cinderella's Castle and the fireworks each night. It was quite seriously - magical.

The Magic Kingdom and Epcot were 99 percent accessible. There was only one ride we noticed that was not accessible (Swiss Family Robinson).  The operators of the rides were really sweet and the would let Ellie go twice if she wanted to. They spoke to her first not us which was an impressive demonstration of sensitivity to difference around disability. Many of the rides we could just role her on to. Definitely get the disabilities Fast Pass. You can get it right at the Magic Kingdom's town hall right past the main entrance for no cost. It's worth it. We also worked with Heather at Mousekatours who did all the heavy lifting for us at no charge in terms of booking. Thank you Heather!

Ellie right after the BB Boutique - feeling fine

Best of all from a care perspective, is the fact that each park has a medical building where there are small rooms with a bed like you find in a doctor's office where we could change her. They have a medical staff too who I am sure would have helped me transfer her had I been on my own. This made all the difference. 

Another key finding was that everything, everywhere was cleaner than clean. That part I was really happy about. Happiest place on earth after all!

Ellie got to go to the Bibbidy Bobbidy Boutique and her Fairy Godmother In Training, Samantha (the training takes 1,000 years don't ya know), gave her purple and blue hair extensions and a fancy doo. Ellie unbelievably let her do her nails and make up - both firsts. Samantha said to Ellie, "Put your hand up on my arm." Ellie did it and let her paint her nails like she did this every day. Ellie has a history of being very sensory averse and fearful of new things. She doesn't like others to touch her hands - especially strangers. But she did this all no problem. There was some surreptitious weeping to be sure from two members of our party who shall not be named. 

She explored the park and each ride we took her on with wide eyes and smiles and laughs. It was amazing to see. She particularly loved the Haunted Mansion, the Tea Cups and the Magic Carpet rides. She also loved it when Disney staff members passing by would say "Good morning Princess!"  We have called Ellie 'Princess Ellie'  since she was little. So for the park staff to say that brought a look of surprise then happiness to her face, as if to say, hey they really know me!

Ellie on the Magic Carpets with Dave

We went to a character dinner where she met Mickey, her favorite, and his gang. She had them all doing the hot dog dance with her. She also slept through each night expect the first one. All told it was a wonderful trip. Her Nannie Bernie and her best friend Tori came along which was a help to us and made the whole thing very festive and fun. Dave and I got a night out on our own. We went December 9-14 which is an off season. Every part of Disney was kitted out for Christmas and beautiful. However, there were still crowds. I would never, EVER go there during one of their more crowded periods. 

The year ahead is about getting Ellie to feed herself. She is apparently doing this with little assistance at school though she refuses to try at home...ahem. As parents we need to push her on this one.  Other goals are to get her using her voice more and to continue to build strength. We are bringing her to extra PT outside of school and I want to do some yoga with her and more weight bearing. She is still growing a bit but I don't suspect she will grow much more. I wanted her to get to 5 feet because she would be able to get into adult sizes and by sizes I mean not only clothes but seats, etc. She's not quite there but as her very loved Pediatrician Dr. C. noted, she is finally on the very bottom of the growth curve for her age after a long hiatus below it. 

A sketch for a painting I am working on of Ellie

As a working mom and all the other things I am the year for me is about trying to get some down time and do the things that make me, me. The drawing here is an example of how I am trying to get in tune with myself. It's amazing how time goes so fast when you are taking care of someone else. I take care of others in my work too as a teacher and head of a department. I take care of my consulting clients too. It's my job, I love it. Because that is the nature of my work, however, it's really easy to forget about taking care of me. What that looks like is me not noticing my own health in a way that has to change. I have an art degree and love to draw and paint but because those activities are not tied to helping Ellie or Dave or making money, I hardly ever do them. Because I took on a larger role at my job it's been hard to find time to exercise. I have some sort of hyper sense of responsibility to others which is good but self care is critical. I am in this life for the long haul. Not writing in this blog is symptomatic of this - a renewal mechanism sitting there unused. I am trying to change that. Otherwise it's just this endless cycle of output with no input to refuel. My wish for you is that you find your own pathways to renewal this year if you find yourself in need of them. 

Happy New Year from me, Dave and Princess Ellie! xoxoxo

DJ Ellie! Ellie starts a Sound Cloud channel

DJ Ellie

Hi Everyone,

It's been awhile as it's been a hard year for us as a family. But that is the content for another post. Suffice to say we are all doing much better and looking happily toward summer holidays.

The BIG news is that after Ellie's most recent IEP we started to think about what Ellie will do after school.  Though I would give my eye teeth if Ellie could stand and do any kind of work in the community (which you never know - she may some day) right now that is not realistic with her CP as it is.  I was asking what about more school for her and found that there are college programs that support people with special needs but they seem to support only those with the cognitive abilities to handle college level work. Ellie is not there at 13 and I am not sure she will be at 21 when her school ends.

The issue I have with school ending for her at 21 is that she is delayed  - so instead of acting like my 13 year old niece she acts in some ways like her (wanting to chill on her own and rolling her eyes when I kiss her on the top of her head in front of her carers - so not cool mom!) but in most other ways she is younger.

Also, she has had a hard time as a little kid (see this blog) with medical issues that landed her in hospitals and feeling poorly versus being in school and feeling good enough physically to really engage. She hasn't put in even close to the hours in school in terms of attendance as a typical kid her age. On top of that she has been slowly recovering from a traumatic brain injury. And she is still recovering in many ways. She got her hearing back which was GREAT! She continues to make progress forward in every way.  My wish is that she could continue to get help to learn into her 20s. That doesn't exist right now.  One day I may have to start a school for her and others who have aged out of their school districts at age 22.   I digress.

In all this thinking about this and what she would do after school I realized there is something  - two things actually - that she already said she wants to do. One is make music. The other is be a toy tester. A friend told us you can write to toy companies to offer to test their toys. I will be doing that this summer and will report back.

On the make music front we decided to get her involved in doing that now. Dave has recording equipment because he writes songs and sings and he has the tech savvy to teach Ellie how to edit down music.  Six Sundays ago we asked Ellie if she would like to make songs for other kids to listen to.  She signed quickly YES!

Dave with Ellie using the MPC

Now every Sunday at 9am Dave and Ellie and I sit down and Ellie creates a song with our help. Ellie is the composer or the talent, Dave is the production tech and I am the producer.  First we ask her what she wants to use to make the song with - namely her toys and a Music Production Controller (MPC) that has all these great rifs on it (See the Mothers Day song) and her voice output device and her Fijits  - of  course.

She creates a couple of tracks. Then Dave works with her to edit them, e.g., "Ellie do you want to make this part repeat or stretch out?"  Ellie choses. I hang around to help with the making of choices and to ensure the pace accommodates Ellie. ;-) We need to figure out how to help her drag and drop the bits of song on to one track. We are still figuring out how to adapt the tech.

She is into it. She pays attention for the whole hour or so it takes. There is no complaining or anything. I think she is quite happy with her Sound Cloud channel where we upload the songs. I need to figure out how to get them on iTunes  - which might be the start of her school fund!

I thought I would share this new development with all of you.  Here is the link to Ellie's Sound Cloud site if you want to hear her music! Elle Belle on Sound Cloud

If you are so inclined leave a comment which will make Ellie's day.

P.S. My favorite song is  "Happy Mothers Day"  ;-)

Happy 13th Birthday Princess Ellie!

Ellie on her 13th Birthday, November 9

13

13

13!

How do I tell you about 13?

For the first time this year Ellie let us sing Happy Birthday to her and actually did a happy dance along with it. Then we sang the Hooray for Ellie song I made up years ago.  This is a big deal in that Ellie has been abhorrent to others singing to her in large groups for a long time. It's a processing issue that I think is getting much, much better. What's also gotten better is her vision. She no longer needs glasses. So my kid I brought home diagnosed deaf and legally blind from the NICU 13 years ago hears just fine and no longer needs glasses.  All signs of the brain's plasticity.  

Ellie got a certificate of merit for being independent!

Ellie is still leading me.  Lately she has been listening to the anthems of modern day teeny-boppers: Taylor Swift, etc. She loves composting her own songs and "DJ" music to dance too. She told me she wants to be a composer and a toy tester when she grows up. Heck, she really could be a toy tester now. The manufacturers would really find any flaws in their design. Ellie learns the whole toy inside in out by playing with it and finds any flaws and calls them out to us. And if the toy isn't working right in even minute ways she let's us know. She's got great concentration about how things work and patterns, etc.  Her memory has always been good but if you watch her play you can really see how she learns and categorizes and figures out how things work.

Age appropriately, she gives me the equivalent to the eye role when her younger personal care attendants are hanging with her. This year I should have gotten her a Keep Out sign for her door.  Go Ellie! ;-)

I am glad for her growing independence and lessening sensory integration issues.   

Happy Dance in celebrating her 13th ;-)

For those of you who asked about her orthopedic surgery, she is doing well. She has not yet regained her full range especially in terms of sitting criss-crossed. But she's getting there. I need to set her up with more PT and get her in the pool more too.  So that is coming. However, we achieved our goal. She has lovely flat feet that allow her to get in her stander every day and stretch those legs and un-squish her organs, build muscle and bone. Our first post op visit included the doctors admiring their work but also commenting how her tone has kicked right back in. Cerebral Palsy - the gift that keeps on giving (sarcasm here).   Her hip is no longer rocking in and out of the joint socket.  We have Ellie in her AFO's 22 hours a day. She is able to sleep with them on. She has two sets   - the night ones have more padding. We are committed to keeping her feet in working order so she can stand.   We are ready to begin with a gait trainer again so am organizing that.

Cool hat made by Auntie Chris

She is sleeping about 50% through the night but remains an early bird. When do those teenage hormones kick in?  Don't all teens prefer a lie in?? Ah well - the good thing is, as I get older getting up at 4:50am does not seem as bad as it once did. When I go into her room and turn on the light that love that bursts my heart is right there. On my mornings (Dave and I take turns) Ellie wants me to sit her up and snuggle with her and make her schedule on her light board for the day. She's still a love bug. 

A colleague recently suggested that sleep deprivation for parents might be offset by the rush of neurotransmitters like oxytocin and dopamine they get upon seeing and interacting with their child because of the love they feel. She suggested that this does not happen when you pull an all nighter to say, finish a critical paper.  I would love to test this and in some of the work I am doing I think I will get that chance so will keep you posted.  It's certainly a way to learn about this because as my long time readers know, appealing to the Gods of No Sleep has been an exercise in futility as they have their own agenda. ;-)  

Our beautiful girl, our true north.

In other news she is making great progress with her automated wheelchair. She can back up and go straight etc. It's tricky business to get one so that is another route to pursue. I also decided now that she is 13 she has to raise and lower her own bed which has a switch which she has resisted using. I want her to gain more autonomy and it's time to get rid of some of the learned helplessness.  No more g-tube. No more clubbed feet. No excuses not to roll, move and gain as much functioning as she can. 

Things that have not changed:  Ellie still loves to laugh and loves music and is adorable and a sweetie  - prerequisite teenage sass not withstanding.  She's still the soul that anchors me in this world. Happy Birthday my beautiful girl!







  

Happy Halloween from Ellie in Wonderland