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Sunday, November 25, 2018

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 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. ;-)

Monday, February 26, 2018

She's Driving

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

Saturday, February 17, 2018

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.

Sunday, January 28, 2018

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.

Thursday, December 29, 2016

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

Wednesday, May 25, 2016

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"  ;-)

Wednesday, November 11, 2015

Happy 13th Birthday Princess Ellie!

Ellie on her 13th Birthday, November 9



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!


Saturday, July 25, 2015

Enough of the Hero Talk & Working Parents of Special Needs Kids

Ellie's left foot and her flexing her toes!
On July 22nd Dave took Ellie to get her groovy green casts off. And they did come off revealing no skin issues and beautifully elongated and more functional feet. The other amazing thing we are noticing this week is that Ellie is moving her toes more and differently than she was able to before. We went from worrying about feeling being lost in her feet to seeing she has more feeling and more function than before the surgery - which is unexpected and incredible and I am truly grateful for this happy surprise. You can use her flexing her whole foot here which she was not able to do before.

Then after letting her feet dry out and checking her many sutures they put casts right back on. She now has electric pink casts and still has to use the wedge and is on hip precautions until August 10. Ughhhh. Hip precautions means that we can't use her ceiling lift to transport her because the sling it uses makes her bend more than a 90 degree angle at the hip. She is a two person lift. What this means is that Dave or I have to be here to help the nurse or PCA we have on helping us. Did I mention we both work full time?

There is family medical leave act but neither of us have applied for that. There is a stigma in the working world that gets put on you if you have a child with special needs - at least in my experience. In my own job I was overlooked for a promotion because, and I quote, "We didn't think you would want the position because of your daughter."  I applied anyway and got the job. But it was a bummer not to be asked by the leadership team to apply when everyone else around me who knew of my work was saying, why don't they just offer the spot to you?  Well they didn't because I will always be that woman with the daughter with special needs.

So it goes.

New AFO mold at neutral. 
And I realize I am writing this juxtaposed to just sharing that we do have this issues with lifting her. Which means I will need to work from home when Dave is out of town. He can work from home because his employer allows that for everyone.  What this looks like is every two to three hours the nurse will say, "Hey can you come help me do a lift?"  He or I say, "Sure." Get up from our desk, walk down stairs to Ellie's room, help the nurse transport her into her bed from her chair, then go back up stairs. The whole process takes less than 2 minutes which is less time then it takes to get a cup of coffee or use the restroom. In fact, getting up from one's desk every hour to stretch your legs takes more time. The work effectiveness impact is minimal. There are many studies that show that working parents who have flexibility at work to say work from home, work harder and are more loyal to their employer than other employees.

My question is: How is this scenario different from a parent of a typical kid who is home sick?  Or a professional who has to leave work early to take care of an elderly parent? Or the worker who goes on 15 minute coffee or smoke breaks?  (Other than the fact that our helping to lift Ellie takes far less time than a coffee break.) We all have times when our work is impinged upon by family matters. Why is this so different? After August 10th this two person lift issue will go away.

The other thing I have been hearing a lot is that, "You are a hero!" People inquire as to how Ellie is doing and I tell them then they say it, "Well, you're a hero."

I feel bad every time people say that and they are saying it a lot.  It makes me feel uncomfortable. It makes me cringe. It is so isolating. It screams  - you are so different from me.  Your situation is so beyond everything that I will put you in this unique category over here where I can keep you at arms length. And it also says, your situation is so horrible you'd have to be a hero to deal with it.

Ellie's right foot, the most impacted by her CP.
I realize it's not meant to say any of that. The people saying it truly care and are concerned for us.  But all that the sentiment implies is wrong. My standard response back is, "You would do the same thing  - you really would if it were your child." And really, wouldn't you?  If you love a person you take care of them. It's that simple. No heroics needed. You just do what you have to do as best you can.

The other thing these comments imply is that Ellie is hard to love.  This of course is ridiculous. She's such a great kid and a sweetie pie and funny and yes she's having a rough time now but is handling it really, really well considering. I would go out of my mind if I had to sit there with a wedge between my casted legs for months. I, in fact did have braces on my legs like that as a toddler, and remember bashing a big hole in the wall by my crib with the screw that held them on as I swung my legs back and forth out of pure boredom and pent up energy.  Ellie can't swing her legs so she is essentially pinned in one position until someone else helps her move.

I know the hero label is meant as a compliment. And maybe I reject it so much in part as a knee jerk reaction from playground trauma that happens with girls in childhood. You know the one where one girls says, "You look good or you have pretty hair" And if you say, "Ya I do" or even imply that you agree them in the slightest you are ostracized. You learn very early the only correct response is to say, "No way, I don't look good or my hair sucks, it's so frizzy"

I know this is part of the cringe factor I feel when other women tell me I'm a hero and it's not because I think I am, it's because of the issue with labels and who is good and who isn't BS.  However, it's the arms length, let's set you apart thing, that bugs me more as well as the idea that taking care of your own kid through an injury (in our case TBI) is a heroic act in a world where many people are dealing with much harder things.

I think we should just leave the hero talk out of it. If I pull someone from a burning building or discover the cure for cancer or find the answer to world peace or a way to heal injured neurons - then talk to me about being a hero. And then I may say, "That's right!"

But parenting my own child, isn't that a given? In fact if I don't do that well then aren't I negligent or even criminal?  Dave and I are hard working to be sure but so are all good parents. If you are doing it right then you are working hard. The hero wall has to come down though. There are more similarities than differences after all between the typical world and the special needs world if we are only brave enough to look for them.

Tuesday, July 07, 2015

Sleep Deprivation and Resilience

This chair if really helping thanks to Liz!
 Ellie continues to improve every day. The casts on both feet, knee immobilizers and wedge remain until July 22nd at which point we hope the casts will come off but not sure about the rest. I think Ellie thought that once she got home the knee immobilizers and wedge would come off. She's made it clear she hates them as they really, really restrict her movement  - which is the point. She is coping with that and the pain really well. Liz brought over this Lazy Boy recliner and it has been a wonderful thing to have. It's heavily padded and gets Ellie out of the bed. Though in this picture you can see she has had enough. It's a hard thing and bummer of a way to spend the summer. I have had to be pretty firm about making sure she eats and drinks. She's so out of sorts in every way it's been hard to get back into any sort of routine.  As a result there has been very little rest for any of us. 

Her circadian rhythm is also flipped. She has been up all night and uncomfortable despite the pain meds since she got home on Friday. This is hard for us. In fact one of the hardest ongoing things about raising Ellie has been her inability to sleep through the night. I just ordered this light to help maybe flip her back to a proper rhythm.  Let's hope it works. I had hoped that approaching puberty she would start to sleep more like any good teenager - but not yet.  Still she is only 12.

She's also on some heavy pain meds that are messing with her sleep. We are stretching to dose from every four hours to every six today and it seems to be working. It feels like a long road ahead. My friends in my book club have been dropping by meals each evening for two evenings now. That really helps and is so lovely since we don't have any family who support us in the day to day. 

A note about positioning: Here you can see her on her side. Her body has to stay aligned (straight). She has the casts, wedge, and knee immobilizers on. We are using the cloth chuck underneath her to move her and it helps. Then using pillows and bolsters to help her stay positioned. We switch back and forth to the other side as well as sitting when ever she wants or at least ever two hours.  At night she can't seem to get comfortable regardless. We keep trying. Part of the it to state the obvious is that she just had her bones operated on and bones take a long, long time to heal. So it goes.

Careful positioning keeps Ellie aligned and comfortable.
I keep wondering if I wrap my head around this differently I might feel better about the lack of  sleep and the stress of it all. Maybe if I was just more chill?  One problem is that it's bad right now and a part of my brain goes to the place where it says - it's going to be this way forever.
When I go there I get instantly overwhelmed. And of course, it's not true. The one thing you can always count on -the one constant in life - is change. 

It's a challenge - this management of the self. It's a challenge not to think of how life could be different. 

I have been inspired lately by this guy who exemplifies what a zest for life means.  Watching him jump into life's challenges every day give me energy to "Do more and work harder" as Casey would say. And we do work hard but focusing those efforts on the right things at the right time is the key. Part of that work is keeping focused, positive, and present.

Sunday, June 28, 2015

Hello Walkable Feet

Ellie asleep yesterday evening.
Ellie is resting now and we have a long road ahead of us. She has casts from the knee down to toes on both legs. Within those casts are feet at neutral and straight if not pointing out slightly (which is good because her tone pulls them in). She has flat feet! I don't mean that in the can't get into the army way and I can't see if she has a proper arch. But she no longer has feet twisted to the side that don't allow her to stand.  It's a wonder to see and a good thing as I have discussed in my last post.

She also has a foam wedge between her knees and knee immobilizers. It's going to be a very long recovery. Right now she has an epidural block in so she can't feel her hips and pelvis. This is a godsend.  I worry about the pain after that. There's a whole team devoted to her pain management and so far they have been doing great.

Ellie's a bit out of it and uncomfortable - but sleeping intermittently.  She needed a blood transfusion but since she got it her color is a lot better and when she is awake she has more energy.

So far so good.

Amazingly we got assigned a private room so it's quiet which suites Ellie very well as she is such a light sleeper. It's a small reprieve. And of course, it's raining. It rained the day Ellie was born - back in the days when it still rained in Los Angeles.  It rained when she had her brain bleed. It rained when she got ventriculitus when she was still in the NICU.

As we were driving in yesterday it rained too and Dave commented on it.

I love rain and am trying not to see it as a sinister thing. Maybe it's more of a symbol of healing for Ellie?  Maybe it's a way to soften the sharp edges around her?  Maybe it's just rain.

I totally see how superstitions start.

Despite the rain, Ellie survived these many surgeries within a surgery. We will be able to let her stand and in doing so let her organs stretch and breath and allow her body to build bone and muscle.  Because we went through this, ensuring that the pain is worth the gains that these interventions allow is critical.

Friday, June 26, 2015

Surgery Day

Ellie got the "Independence" Award at school!
It's a waiting game right now. Ellie is in surgery and will be for the next 9 hours. They got the PIC line in and the A-line and the epidural and the surgeon just made the main incision for her pelvic osteotomy. I asked my Facebook friends to send good thoughts, and whether you agree with our choice to do this or not, please send love and good thoughts to Ellie.

She has a long road ahead of her  but I believe it's one that leads to better quality of life than what she has now AND ensures that her body will be the healthiest possible so she can have a long life.


Central Question

The big question that has been on my mind in preparing for this surgery is how to manage our energies as parents. I managed other big questions for Ellie like how to get her to gain weight so that she would have more reserves and she did gain 4 pounds! Go team Ellie!  Dave and I both managed all the other agonizing choices and decisions to make leading up to today.

In the past Dave and I have not been good about managing our own energies. Recently, in an episode of "Naked and Afraid" (disclaimer: yes this is a guilty pleasure, and yes, only in America, and no it is not porn) a pair of survivors were just at each other psychically the whole time - jealously weighing who was doing the most work, obsessing whether or not the other would come through with key needs and basically circling each other in the death grip of two drowning people. Finally one tapped out and the other - who was so dysfunctional in the presence of their partner - suddenly became very functional.

Some times Dave and I are like that - not that bad or course - but this dynamic exists in a subtle way - and we just exhaust ourselves in the process which is good for no one - especially Ellie.

The way I have seen us in this dynamic in the past is around how we manage Ellie's hospital time. Typically we both stay by her side for 12 hours and then one of us will stay with her in the hospital over night and the other will go home very late and come back very early then we both stay for 12 more hours and the other one will go home for the night but get back very early. In short, no one gets any rest and we burn out and get cranky and don't have as much brain power to make choices for Ellie because we are so tired.

Last year a friend had to do a similar surgery to what Ellie is going through today and her mom and dad handled the hospital time totally differently. In fact we went in one night and brought the dad some reading material and a beer. He was obviously strained because his child was in pain. But he was also in the flow of it and as such emitted a very calming energy. He was present for his daughter and somewhat rested. Mom was home with the other kids and visited every day but was rested too. After their hospital stay of a week Dad, who stayed at the hospital the whole time with his daughter, had to travel to another country for work and mom took over. And she had the reserves to do so because they had managed their energies so well.

Their easy sharing of the responsibility did not leave them as exhausted as they might have been had they practiced the joined at the hip way Dave and I have managed this in the past. It was still hard but as well managed as it could be.

This time Dave and I are taking longer shifts and giving the other a break in between to catch up on rest. One of us will still be by Ellie's side at all times. Don't get me wrong. We would never leave her in any hospital alone - ever. 

But Dave was up last night with Ellie who, understandably, did not sleep well. She never sleeps well but last night it was particularly bad. And then we were all up by 5am to get out the door to get to the hospital by 6am.  I was up in the middle of the night with her the night before.  The Gods of No Sleep have returned and been camping out with us for a solid 2 years after a year off. Damn them!


Flying Hearts
Once Ellie was in surgery we waited for the first update and then I sent Dave home to go to sleep. He is taking the first night tonight and as we were awaiting the first update he looked exhausted. I'm glad he's gone home to rest.

When something like this happens, a child is ill or injured or maintains a life long disability, 95% of couples split. I can see why because for us anyway, Ellie became our central concern.  We have to remember to also take care of each other - and in the past we have not been good at that and we were younger and had more energy.

Dave will come back toward the end of the time of her surgery late this afternoon and then, once they are settled in a room and if Ellie is ok, I'll go home and come back mid-day tomorrow and stay for two days while he goes home and rests. He will visit of course but only for a couple of hours versus 12 hours. In the mean time I hope he sleeps in, rides his bike, and rests and rest and relaxes and eats well and hydrates. And then he will take the next two day stint I will try to do the same.

When Ellie gets home we are not going to have help caring for her 24/7. I anticipate some very long nights. We will be vigilantly trying to keep ahead of her pain. All her care will be that much more difficult because of her pain, casts, knee immobilizers and wedge. It will be harder to feed her. And this will go on for weeks and we will be balancing this with full time jobs. 

If we exhaust ourselves here - while we have help - we will be all the more tired when she gets home. I want to avoid that.

In truth - maybe the central question really is - how do we survive this experience of raising Ellie and care for each other too?  Maybe in trying to do both we will find not only more grace but more joie de vivre?

Tuesday, May 12, 2015

Orthopedic Summer

Hi Everyone,

Thank you to those of you who have written to thank me for sharing our story and to say that in that sharing you found some hidden strength and hope. Hope is a powerful thing after all and it is what keeps me going through the darkest times. It motivates me to action.

Ellie having a foot soak.
When Ellie was born they told us she may not make it through the next few hours, then the night, then the week. After she survived for two months they told us that we should sign a DNR because she had diffuse PVL and that she would be severely impaired.  Horrifying to be sure that they would suggest doing a DNR on a kid who needed suctioning so she would not drown on her own secretions. After that we were afraid to leave the NICU at all in fear that they wouldn't work hard enough to save her. 

However, the NICU nurses never gave us that impression that Ellie wasn't worth saving - just the opposite. It was specifically two doctors who did the test for PVL that frightened us so much we just decided to always have one of us on watch. We were already putting in very long days there but after that we would only leave once in a while when a particularly trusted nurse was on. But if there was a respiratory therapist we didn't trust we would stay all night and all day.  That was our life for 134 days. I don't know if it was necessary but the protective instincts we had as new parents were very strong and are still in high gear today. I don't think we will ever get over how intensely protective we feel toward Ellie. I am sure it's the same with any parent. 

During Ellie's infancy and toddlerhood I was also afraid of what our future would be.  What if Ellie were severely impaired? What would that look like? Would I be able to handle it?

These were big questions. And they were on the table for a really, really long time. When she was so little it was hard to know if she would keep progressing or would she stay in the baby stage forever, for example. They told us that we had to make huge progress with her before she was 5 because her development would taper off. And it is true that there is rapid brain development from infancy through toddlerhood. But the brain is constantly re-arranging and adapting based on the needs of its environment. This is why it's so important to bring the world to your kid if they can't access it themselves. Stimulate your child is what we heard and we did as you can see a little bit of by reading here. And it really did help. 

However, in some ways I think that Ellie's foot and leg issues were determined from the moment her brain was injured. In fact her PT/OT in the NICU called it - she said Ellie's feet would always be her hardest problem. And so they are.  But just the same all the work we did Ellie and all the work they do with her now in school helps - it keeps Ellie's brain developing and her life unfolding. Is she at a different  pace than other twelve year olds? Yes - totally.  And that is a bummer in many ways. Don't get me wrong - I wish this had never happened to her or us. It is not glamorous and it's a lot of hard work all the time with lots of constraints I never expected to face.  However, the grass could look greener from anyone's perspective. But she is doing great considering what she has lived through and the challenges she was presented with from her early birth  - yes - fantastic and thank God. It could be worse and I am thankful every day that I get to have her in my life. That is one thing I don't take for granted - ever. 

Now that she is twelve we are facing caring for her has her high tone pulls her legs and feet into knots as her bones grow.

That is why this summer on June 26th Ellie is having a pelvic osteotomy, hip osteotomies, Achilles tendon lengthenings, ham string lengthenings and the bones rearranged along with the muscles in her feet to treat her now clubbed feet. 

The surgery is meant to take roughly 9 hours and she will then be in a hip to toe cast for 3 or more weeks. It will be a long recovery after that with loads of physical therapy needed. 

Ellie Belly checking out the fish at age 4
The consequences of not doing this is that she won't be able to stand much so that her organs will get scrunched which is life threatening. And her hips will start to come out of their sockets regularly - which is hugely painful. 

Once again, as with all of medicine, we are making a choice between two evils. We make the most informed choice we can and move on.  And to answer the unspoken question - yes she wears AFO's every day and her feet still became clubbed. Yes we have tried Botox many times and the last time to no effect.  

With this big surgery ahead of us once again I have to rely on hope - hope that I am making the right choice. Even though we have spoken to four doctors about this and have seen the obvious issues on her x-rays - I still have to hope that we are doing the right thing because you don't know sometimes until you do. 

There is that expression: Have faith in God but tie up your camel.  

It's exactly like that - I have hope but do my homework and work my butt off to ensure a good outcome. Hope alone isn't enough. So send a prayer along for Ellie on June 26th and the weeks following. There are studies that show when people are prayed for they do better. This is a rough thing Ellie has to face once again. I wish she didn't.

Monday, November 10, 2014

Happy Twelfth Birthday Princess Ellie!

Ellie turned 12 yesterday. I can hardly believe it. And as a nice birthday gift for mama she transformed again in a way that may seem small but was really telling for us. Each year whenever she gets presents she tends to shun them. We joke and say that all new toys start off as the devil. We have had to slowly introduce them to her by doing things like playing with them ourselves, or leaving them sort of near by in view and every now and then insinuating that they might be lonely.

Even toys she has come to love and are essential to her, started this way.

But yesterday this pattern changed. She got a KiddiJamz DJ toy - which Dave found. It's really such an Ellie gift because we noticed how she plays her favorite videos on fast forward then going back, etc. in her own pattern.  We also call her "DJ Ellie" because she likes to mix the songs on her toys to fill the house with a music all her own.

So the KiddiJamz is, on paper, a perfect Ellie gift. However, after years of the initial rejection, I have developed low expectations for her acceptance of new gifts; wisely trying not to get too excited about a certain gift for her. But this year she changed.  She took to this toy the minute it was opened.

This is a picture of her playing with her newly unwrapped toy.  She would play with it for a few minutes and then push it away and stare at it. Then she would ask for it again. She did this several times.  You can see how delighted Dave is.

Today she didn't want to stop playing with it to go to sleep and she had already mastered how to record, mix the different genres, record her other toys into her mixes by holding the microphone to them. She has recorded several songs on the little "iPod-like" devise that comes with it! She's incredible and determined and focused. Ha! So this also tells me that, when she refuses to focus on her homework it's not because she can't focus, it's because she doesn't want to.  Bring it on Ellie!

I can't believe she is twelve. Time these days seems to be going by too fast. Ellie has been the healthiest she ever has and has a full life with school and after school activities like soccer and iPad class (yes, there is such thing) and homework. She is spending more time playing on her own and expanding what she can do. We are all changing and Ellie most of all.

Happy Birthday Princess Ellie!
Love, Mama

Friday, November 07, 2014

For the beautiful Anastasia: Questions and Answers

Ellie at Advance with Doran and Dada

Yesterday a father wrote to me with a lot of questions about his beautiful baby girl Anastasia.  Rather than respond in private, since many of his questions are things we also asked in those early days, I thought I would answer most of them here. 

Dear J.,

Thank you for your lovely letter. I am very glad that some small bit of the content here has helped. I remember those early days, and Ellie looked a bit like your Stacey. It's a lot of wondering and worrying about what the future will be. Who will my sweet, beautiful baby become? I also realized at that time, when Ellie was Anastasia's age that, because babies are supposed to be total care, this was the most "normal" our life might ever be: the days when I and Ellie could still pass as just another baby with her mama. (There's some psychology for you. ;-)

I also worried, and I have written about this here, that Ellie would transform into someone I could not relate to or connect with. The good news is, that on the eve of her twelfth birthday, that is very far from the case. She is still my beautiful, funny, smart Warrior Princess. She is still making progress; still evolving.  But I didn't know that would be the case way back when the doctors used to talk about stalled development, as if the brain ever stops creating neurons in response to the environment. We never believed that Ellie would hit a ceiling, though the doctors would say that and we saw other parents who believed that and then made is so by not stimulating their kids beyond that "ceiling."  This is a path I do not recommend. 
Ellie signing Hi!

The brain above all else, is a dynamic system all its own. It's always evolving. And it takes feedback from the body and external environment to build itself. There is evidence of this in spades in neuroscience studies. The simplest example is of new neurons that developed (as shown in the scans) when a person learns to juggle. 

The implication of this for the child with CP, is that if the brain can't make the body do something it's supposed to, because the connection is cut off due to brain injury, it might be possible to wire it up from the outside. Make the body give the brain feedback by motoring the child's limbs, etc. through the motions. We did this on many levels on it worked in getting Ellie to eat and drink. Because of her prematurity and lack of oxygen at birth she arrived with no suck reflex that typical babies have. Then she had a Grade 3 IVH brain bleed on Day 2 of Life that impacted her nervous system leaving her upper body hypotonic or floppy and her lower body hypertonic or spastic. The hypotonia in her trunk and head, face and neck meant it was hard for her to move her face. She had a mouth full of cotton and weak sphincters. She could not feel all that much, nor control her tongue. So we did facial exercises in her mouth and on her face that we learned in the NICU from the amazing Jean Dolaway. We worked with a feeding specialist to learn more techniques and exercises beyond the NICU. That was time and money well spent. We did them for many years. She was able to learn to eat and drink after over 10,000 hours of working with her on this. We are currently still working with her on drinking. In her case, the input from the outside allowed her brain to build new capacity that was supposed to be a reflex coming into life but was taken out by her rough start. Our stance was to never quit trying to stimulate her - to bring the world to her because she could not go to it. We still do this and it has helped her immeasurably. 

If there is one thing you do, do that. Bring the world to beautiful Stacey.

We brought the world to Ellie by doing these things: 
1. We talked to her all the time - in a very animated way that resulted in her first sounds and now her very prominent vocalizations
2. We printed out big letters on paper and taught her the alphabet
3. Read to her constantly and exposed her to math as a 2 year old.
4. We did infant massage that helped a lot. 
5. We did lots, and lots of Tummy time! 
6. We did all the PT and OT exercises we learned in early intervention outside of those sessions. 
7. We let Ellie play on a big foam ABC mat at home so that she had to move and roll to get to her toys. This built strength.
8. We did a ton of foot soaks with espson salts so the magnesium would sooth her stiff ankles and feet (we still do those).

Ok so now onto your questions:
What are the three therapies that helped Ellie the most?
That's easy:
1. The neuro-respiratory therapy we did with Linda Scotson at Advance. She now calls it The Scotson Technique. But we did it with Ellie 6 days a week, 4 hours per day for several years, traveling to England to Advance twice a year to learn more. That helped Ellie tremendously with her breathing and eating and being in her body. Linda also counseled me and gave me the strength to fight the medical diet that Ellie was on that was making her sick. See my posts on nutrition. Ellie has severe reflux. I was able to help her be minimally symptomatic by changing her to an alkaline diet of whole foods. We researched this for a long time before we went. And I finally called Linda and had a long chat with her and then made the investment. I encourage you to research everything using the web and asking around as much as you can. There are no easy answers to the questions CP and TBI's pose to our kids. If you call Advance they will talk to you free of charge. I would call them and ask all your questions to them to (that makes two!)

2. The nutritional based healing I did with her by putting her on real, whole foods I make myself that were high in alkaline and low acid. 

3. The hyperbaric oxygen treatments (with the protocol Linda Scotson developed). We did a lot of this since Ellie was 13 months. They helped tremendously. We saw her make gains from them in terms of being more alert and aware and along with the TST she got healthier. Additionally, many of the parents we met doing the same thing, who had kids who had lots of seizures said they saw a decrease in the number of seizures.  So we are believers in (with the right protocol - Linda's is akin to what divers do and is very specific) Hyperbaric.

4. Tummy time.  Tummy time could be number 1. We read Linda's book called Doran, it really shows how being on one's tummy wires up the brain to the body and in Ellie's case this helped a lot. It helped her get stronger all over. We do tummy time every day even now.

Was it worth it traveling to England for TST?
YES, and yes again. If I had to do it all over, I would have done it as soon as Ellie was able to board a plane and I would have done even more of it. The combination of the TST, hyperbaric, and nutritional healing helped Ellie when all the meds in the world were making her sicker and sicker. I would do it all again and am grateful to Linda and the staff there for the work they did with Ellie and us. 

What else do children do at Advance?
Lots of tummy time to deliver the gentle touches that build up the child's respiratory system that allows more oxygen to get to the brain. They will also do hyperbaric. Linda gave me a ton of counseling on Ellie's nutrition that made all the difference for Ellie and for me to fight to get Ellie off the medical diet of synthetic foods the doctors were saying she needed. If you look under the tab "nutrition" you can see in depth what I did. But any child with reflux who also has CP (in fact everyone) will hugely benefit from a low acid, high alkaline diet of whole foods versus the synthetic, acidic stuff the doctors push on their patients. We learned that acid builds up in everyone's cells - this is normal. The way a typical person gets rid of that acid is by movement. Because it was hard for Ellie to move, she had more acid to deal with in general. And this also negatively impacted her reflux.

Is TST useful to a child who does not have respiratory issues?
Yes. Ellie wasn't a chronic lung kid because she was a big 27-weeker. But, because of her prematurity and her brain injury, her body was not developing normally. The TST increased her circulation and oxygen saturation that helped Ellie's whole body and brain. 

How old should a child be to start?
ASAP. You can't start her too soon. The earlier the better in fact. A child's brain is like a super brain, developing and growing like mad. What a great time to influence that by ensuring the body is wired up to it. The TST helps people with brain injuries like Ellie because those gentle influences on the nervous system communicate to the brain and the whole system gets back in sync if that makes any sense. 

I wish we had done it as soon as Ellie was able to travel. It wasn't cheap in that we were coming from the US and our work was impacted by having to take care of Ellie. So we went into debt to do it - but it was worth it. I don't regret it one bit. And, when Ellie was small it was much easier trip than it would be today. Though I want to take her back to Linda for an evaluation. So we might do that at some point. 

What do we do psychologically?
This question of yours is the most heart breaking. I don't think there is any easy answer. Dave and I were devastated of course. But the great thing was that both he and I knew that we loved Ellie and we could feel her presence - our connection to her. We focused on that and decided to believe in her and look for ways to help her heal from her injuries. 

In that sense, healing did not mean believing all the doctors said - in fact the opposite. If we believed them we wouldn't have done 90% of the things we have because they said she would be a vegetable. Which clearly turned out to be wrong. Also, they will tell you Stacey needs this and that surgery, this and that intervention. Be very wary of this. It's true, Stacey may need certain interventions. But the thing to be wary of is two fold. 

First, there is this thing called the "management model." Under this philosophy (also a Greek word ;-) interventions, surgeries are done to help the caregiver not for the healing of the patient. 

Second, medical knowledge is always evolving and doctors don't know everything. So ask the same question of three different people when you are trying to make your decisions. You will be surprised to have three different answers. Also, use your gut and common sense and do your research (like you are by reaching out to me). We were told for example that when Ellie needed a g-tube she would also need a Nisson Fundoplication (where they tie a bit of the stomach around the opening sphincter of the stomach so that the patient can't vomit). We refused based on two things: research that showed the fundo made it very hard to swallow and eat by mouth, and the fact that vomitting is the body's way of getting rid of things that are toxic to it. It didn't make sense. Note: some kids do well with the fundo and need it. But Ellie is hypotonic and reflux decreases if a child can eat by mouth because digestion starts in the mouth. We did not want to take that away from her. We made this choice in light of the doctors threatening us by saying that Ellie was sure to get esophageal cancer. During another, truly needed surgery, we had Ellie scoped and turns out her esophagus is perfect. So the doctors were wrong. 

As you can see, the way Dave and I dealt with all of this was to just dive in and work hard to save Ellie's life and make her life good and cherished and safe and thoughtful and hopeful. This sustained us through years of long nights being up with a vomitting refluxy baby who never slept. It sustains us through all the bad things. We just keep trying to do whatever we can to move her forward. Though I think I could do a lot more these days  - like Feldenkrais. I want to do this with Ellie. I will let you know, here if we do and how it goes.

Another hugely helpful, sustaining thing was being in touch with other parents. The cohort of parents we met in the long months Ellie was in the NICU taught us so very much. The same is true of the amazing parents we met at Ellie's first school. So if you can find others in a similar situation that can help protect your sanity. (So I am glad you reached out to me!)
Ellie playing her guitar this week!

I am not sure that is a great answer to your question. But to be clear, I cried a lot too. I grieved a lot too for many years but especially early on. I grieve still for the loss of that healthy child that Ellie might have been if not for her traumatic brain injury and prematurity. When my grief comes I honor it but try not to live there for long. The cool thing is that whenever I get overwhelmed by worry or grief (and I still do at times, but not as much as in her first 7 years) I go and hang out with Ellie. She makes me be in the present moment. And in the moment all I experience is this cutie pie of a girl, who I love more than life, who is inquisitive, loving and wants to dance! She is my normal and my heart. 

Your Anastasia reminds me of Ellie in terms of the shape of her head. ;-) But she is wide and clear eyed. When Dave and I saw her we both said, oh she's going to do great. Not that we know this for sure. But she looks really good and she's a cutie pie. ;-)

I am sorry whatever happened to her did. I am sorry this is happening to you and her mother. I am glad you reached out and I hope this is helpful. 

Please, write any time.

Love and hugs,