Acts of Hope

It's been a minute since I wrote last and there has been lots of change. 

After my last post Ellie had another surgery or two. The total was 6 and the last one in April of 2023. I'm so grateful she survived. Her new shunt is working so far. It took us a good year to recover from that 6 months of hell and the 6 brain surgeries. It's the most difficult thing dancing with death when you have a child that may die before you do. We are not alone in this, I realize. It happens. 

Since I last wrote Ellie graduated from her school the day before her 22nd birthday (by law). She was really sad about it. One day while she was still at school one of the staff there congratulated her on her soon to come graduation as she was driving her motorized wheelchair toward her bus at the end of the day with her favorite teacher. Ellie got very quiet and then cried the entire 45 minute bus ride home and then for another hour at home - a big sobbing watery cry. Nonstop. Heart breaking. 

We were told by the state that there were no programs that could accommodate her so we were must do a 'self directed' program was our only option. This basically means- good luck - you are in the hinterlands now.

Since then we found an amazing tutor for Ellie to work with twice a week in what we call her "Life Long Learning Program". We have her going to the gym twice a week to work with a trainer to keep her moving. We got her a gait trainer to also help her build muscle and bone density. We set up a room that she named "Ellie's Office" where she does her life long learning work and her DJ and music mixing. We set this up so she has somewhere to go in the morning versus be in her bedroom all day long. The gym program she is in is the only one we found during the day other than Camp which she was able to get into for 4 weeks. That has been great and she even made a new friend. But we were only able to replace 4 hours of the 40 hours a week program she received while in school. 

Since she's been home we've all been adjusting and creatively trying different things to give her a full life. We have always tried to bring the world to her because the world is not accessible to her as it would be to you and me. But like all adversity - she is growing through it. We are seeing her use her voice device more. She has discovered the library here in town and loves the common room where there are kids and  hanging out where she can eat in what sort of duplicates her school cafeteria. We have not been able to find a vocational program. It's also very hard to find an adult doctor who will take her. Same for physical therapy. I called all the local places to get her PT and all said they do not work with Cerebral Palsy patients! (I still find that unbelievable. I think it was 10 years ago where all PT's were required to get a doctorate in it. But what does that degree cover if not one of the conditions that requires the most PT for longevity and health?) She has a one to one who is very good with her but she, nor we, can duplicate the richness of what she had at school where she received weekly therapies including PT, occupational and communication therapy as well as in school visits with her orthotist, dentist and optometrist. All of that gone along with all the friendships, teacher relationships, learning, and fun. 

We knew this was coming so started a nonprofit to tackle these problems and bridge this huge divide. We are working on building a community for her and those like here with physical and intellectual disabilities. It's called an integrated work/life community and we are making good progress. 

We absolutely have to do something to give her a better future. She may outlive us and that is what drives me. The fact that she may outlive us. Which would be great. BUT, in having toured group homes and day programs and finding all of them really lacking for someone like Ellie, we need to create something so that she is not put into situations where she will be at best neglected and at worst abused. The stats on the abuse of those with complex disabilities like Ellie are very high - devastating. 

Dave and I are working at our jobs and building this community as volunteers 'on the side' though it's taking up a lot of my daily hours. It's what we are doing to keep her safe when we can't.  That's the base level motivation. But the other higher level motivations are to create an environment where she can grow and thrive. Her vision statement for her life after school was to "Live with friends. Work with computers. Be a music producer and DJ." 

She's 22 now. Very typical of most 22 year olds who do not want to spend the rest of their life living in isolation with their parents. Of course. She's tracking with her typical peers in this way. 

 It's an act of hope to keep on with this considering what is happening in our country. But what's the alternative? There is no cavalry coming to save the day. We make our life - we all do. 

Because Ellie needs our constant care it forces us to stay present and active. One of the many, many gifts that come with this whole experience of parenting a child who has disabilities. The love we feel for her and her for us is a sustaining force. So we daily perform acts of hope to scale what seems impossible considering the start up costs of what we are building. We are growing new muscles and skills as we embark on this next phase of our journey as a family. You can learn about what we are doing here: www.highspiriteast.org 

 Ellie at her first Tikki "Bar" happy to be out late after sitting through the Superman movie. Her favorite character was Superman's dog! ;-)

Inspiring innovation

*Ten Ways To Diss a Differently Abled Person

1. Make sure to leave your empty shopping carts in the special needs parking space.  Hey, no one was using it anyway.

2. Always park in the special needs space and if that is not available park as close as you possibly can to it.

3. This is an especially good one.  If you have a wheelchair user in your family that you see regularly, don't even consider making entry into your home more accessible.  Because you really don't have the time to consider affordable ramps like this.

4. Ignore the wheelchair user in all conversations and only focus on communicating with their parent or the able bodied people around them.

5.  Don't bother buying the child with special needs anything but grey utility sweatpants and sweatshirts for gifts. After all, isn't that the best thing to dress a person with special needs in?

6. Ask a person who uses a voice output device a question but don't wait for the answer.  Just as they have completed their response after laborious motor planning, turn away and miss the whole thing. Do this several times so that your sincerity really shows.

7. Turn around and frown at the differently abled person when they are participating in community gatherings, because they are ruining your day.

8. Additionally, make sure to shoo your children away from the wheelchair user on the playground, because (loud whisper) what if it's catching?

9. Yell at a parent or caregiver of a wheelchair user for parking in the special needs parking space because clearly the caregiver can walk.  What right do they have to use that space....even if the wheelchair user is actually in the car with them (at the pharmacy picking up meds that the pharmacist was actually coming out of the store to give them)?  But still those spaces are for handicappers only.

10. Use the word "retard" in any context.

Note these top 10 are not in order of importance - they are all important.  Also this list is garnered from my own and my friends experiences. For all of those close relatives and close friends who have considered ramps and slowing their pace down and are just sensitive in general to their differently abled relative or friend, god bless you.  And please consider holding classes for the not so naturally compassionate.

*You'll have to forgive my sarcasm in this post. A situation similar to the 10 I have listed above just happened to us this same day.

Guest Blogging At What To Expect Dot Com

Can you believe it!?

Check out my first post in the Word of Mom content area.  Click here to read my post.

There is so much great content on this site and including writing about diverse experiences like mine - which I think is very cool.

Here is the content of that post:

What I Learned by Being Mom to My Beautiful Warrior Princess Daughter

Me and a 5 year old Ellie on a beach in California.

My challenge when I was asked to write for WhatToExpect.com was to decide what to write.What do I have to offer when my parenting journey has been so different?If I write about my actual experiences will it resonate with this community?

In attempting to write for a new community of people, far more diverse than the family, friends, special needs parents, and differently abled people who read my blog, I had many starts and stops. Finally, frustrated I gave up. A day later, while blow-drying my hair, when I do my best thinking, I realized that the "expected/traditional path" is not so commonplace anymore — nor has it ever been. I define "traditional path" as a. getting pregnant, b. having a baby, c. taking baby home, and d. living happily ever after. (Yes, I did read all the fairy tale books my local library had to offer before I was 10.)

So here goes.

I have gained some perspective from getting to be the mother of my beautiful 10-year-old warrior princess, who happens to use a wheel chair, contend with quadriplegic cerebral palsy (CP), feeding and speech issues, reflux, but who also loves life, Fijits, dancing, and school.

When Ellie was born three months early, things went differently than I expected. I spent the first few years of her life worrying and fearing how she might turn out. Not that any parent has ever worried like this before... I did wonder if her CP would get worse, would she ever walk or talk or laugh? I worried, am I parenting her well, am I doing things right, can I handle this? Again, questions no other parent ever asks...

Time is a wonderful thing in that it heals all wounds and addresses all fears through the crucible of experience and the lens of perspective. Now that she is 10, I have a lot of answers to my questions as well as a decade of experience under my belt in dealing with complex situations and making really tough choices. Here are some things I learned:

It's relative. Anything deviating from the expected path of have baby/take baby home is hard. During Ellie's long stay in the Neonatal Intensive Care Unit (NICU), full-term babies would come in for a day or two because they had jaundice. Their parents were just as upset as we were to find themselves peering at their baby, rocking Lady Gaga worthy shades, tanning under the bili lights. The key is to honor your experience and that of other parents. Here's a silver lining for parents of jaundice babies: Our doctors in the NICU said their research shows that such babes have higher IQs.

Parenting muscles strengthen over time slowly as you build up to what you can deal with or find someone to help. I don't subscribe to the credo that life never gives you more than you can handle. In my experience, life has often given me way more than I could handle. I think a more accurate sentiment is that life will always give you more than you can handle because as a species we live in communities versus being nomads. We are meant to work together and receive and give help. Over the last 10 years our family has had loads of help from doctors, nurses, teachers, and other parents who could handle the situations we were facing and either taught us what to do or got someone else to do things beyond our reach. I think when the unexpected happens it's important to remember that you are not alone because it's easy and reasonable to get very overwhelmed. Having a baby is overwhelming.

When I was pregnant with Ellie, she and I had this ongoing conversation. Dave composed songs for her and sang to my belly. We were so overjoyed we didn't worry about the future. Then when she was born three months early we suddenly had a lot to worry about and no prior experience to rely on — like most first-time parents with some added complexities. Today we have parenting muscles that are still being toned by Ellie. But we have help in each other and in our community. It's all worked out into a life filled with love, laughter, and meaning.

You are the expert on your child because you are paying the closest attention — don't forget that. We were very luck to have a great neonatologist who told us right from the start to "watch the baby" versus the monitors. This became a habit and as all parents know — you are observing your baby and small child 24/7. We have had to make a million between a rock and a hard place style decisions and heard very scary prognoses. If I had believed what the doctors told us (basically that Ellie would be a vegetable), I would not have done a lot of the things I did that have been vital to Ellie's development.

No neurologist has the final word, as the brain is still the ultimate black box of medicine. If anything, the doctors as a rule predict the worse — which was their way of trying to prepare parents. In my case it made me fight all the harder for Ellie.

Bottom line is you can't always believe what the doctors say about outcomes because sometimes they are guessing about a future they cannot always predict. More importantly, all children with challenges benefit greatly when they have someone who will make an investment in them. Look at Temple Grandin or Helen Keller or Ellie. The key is not to give up or be devastated by a prognosis so that you lose your connection with your child and your hope and creativity.

Ask each important question three timesto three different experts in order to come to your own best conclusion. We learned from Wry, a fellow NICU parent. When you have to make tough decisions about the health of your child, it's always an exercise in weighing two evils. Which one will help the most with the least side effects? We learned that if you ask the same question of three different experts, you often get three different variations of one answer or three different answers. This really helped us think for ourselves but also weigh our options with different perspectives. This can also be time consuming but for medical interventions that will be life changing for your child, if you have the time, this is not a bad use of it.

Let your love lead you. Your love for and bond with your child is a mystical thing of mythic proportions. My heart opened up all the way when Ellie came into my world. It's the best love I have ever felt (and I love my husband dearly). This love for her has carried me through it all — and continues to. This love makes any challenge I have to go through worth it. Love has many, many expressions. Some expressions of love are subtler than others but if you are paying attention you will find a huge bounty no matter what differences you are facing.

Blog-sanity and the Stories We Share.

Picture: Ellie at age 9 playing with"Logan" who is a Fijit.

I'm going to try to blog more because this blog offers perspective - for me when I write  - and from you when you comment. I learn stuff.  Ryn Tales has also served as a centering force on this uncharted path.  I  have been feeling self conscious though about how much to share about Ellie. She is growing older and it's her story just as much as my own.  From your comments, sharing parts of that story has seemed to help - serve a purpose - help others.  And I am still learning about disability and how to navigate its ever changing face every day.  The extroverted part of me wants to share every bit of that learning here to have help in making meaning of it.  But like I said, it's Ellie's story, so some things I can't share.

Time is also an issue. I remember reading Biz Stone's Who Let the Blogs Out.  It's a great book for anyone out there thinking about blogging and what to do. He really lays it all out for you.  One of the things he says though, is that unemployment is the best thing for a blogger.  Simply put - you have time to write and more importantly  - time to reflect on life. Time to take the wisps of inspiration and commit them to the small screen.  He was right.

Since I finished my dissertation, nothing slowed down. Instead I just got more busy with work and family and catching up with the long list of things I needed/still need to do for Ellie.  Also upon finishing instead of feeling relieved I just feel restless and wound up - like all the things I put off for 18 months should not get done right away.  Instead of feeling accomplished, I am more keenly aware of all the things I want to do that I now can with the letters. In that sense it's been a decade of waiting.  Hence the restlessness.

What's in order however, is renewal and perspective and being centered. Sadly, none of that is coming naturally and is proving something I need to create myself with discipline and practice and acts. Blogging is one act. This blog is also something wholly mine versus being a thing I produce with my mind and creativity for other people and as such, not to be neglected.  If anything I hope it continues to serve some small corner of humanity.

Last, I heard about this book on NPR today. I just ordered it so will let you know what I think.  However, I hope more is written on this topic - disability. It's always on my mind.  The love I feel for Ellie and the joy she brings me every day is something I always appreciate and am grateful for. AND a book like this that tells how various societies viewed disability differently may offer some proof that disability has been appreciated.  Go see the Neanderthal skeleton in the Smithsonian where the note reads that the person lived and died of old age despite an obvious massive skull fracture injury.  So if the Neanderthals valued their disabled enough to expend limited resources to keep them alive and treat them as a valuable member of the tribe, why not us? Or more specifically, why not all of us?

A History of Disability (Corporealities: Discourses of Disability)

Henri-Jacques Stiker (Author), William Sayers (Translator)

Pain in the Back

Ellie came home from school early today in a lot of pain in her back. I am not sure how this happened and of course have been wracking my brain scouring every positional memory I have of her over the last week. It's her lower back and she can't lie flat on her back without a lot of pain. It hurts her to sit too. She constantly keeps moving to try to shift her weight and find a comfortable place. It's hard and she is in pain - which is not good.

7 years old with a hurt back. That's just wrong.

Mobility and Traveling with a Quadriplegic Child

This post has been a long time in coming and concerns all the things in its title. If you have been reading this blog for long you will know that Ellie is a bit of a world traveler. And when I write that I can hear us saying to her in the Aussie accent of her favorite toy – globee. “Ellie, YOU ARE A WAAAAAOOOORRRRRLLLLLDDD TTTTRRAAAAVVVVVVLLLLLLLLLLLAAAAAAAAAAAAAa!” Much to her delight. And in truth as a second generation American it took me until I was 21 to get to fly in a plane and nonetheless to Europe, on my own, from money I had saved up from many part time jobs. Ellie has been to Madrid, England, Ireland, California (she was born there) and many other places. Hardly a world traveler in a foreign news correspondent sense but she’s only just turned 5 - give her some time.

The truth is, this was the hardest trip ever. And we have used our Peg Perego stroller for the last time. It just won’t be viable by the time this summer when we go to England for her therapy at Advance. Her Kid Kart Express is too heavy and bulky and falls apart if you jostle it – so it’s not an option. I can’t imagine checking it on the plane and having it come back all in one piece. Also it would never fit in any European style car along with our cases.

We have also heard that if you bring a person on board in their wheelchair they are expected to stay in it the entire trip. God I hope that is not true as Ellie would need to stretch out after a short time sitting. If anyone in a wheelchair is reading this and has flow – please, I beg you, tell me how it works. Do you wheel on, get into your seat and then someone takes your chair? Do they leave it on the plane near you or do they check it below? What if you can’t ambulate, how do you go to the bathroom? Simple questions and I am so not joking because I need some perspective on how to transition from traveling with little baby Ellie to little long legged girl Ellie who will rapidly turn into teenage Ellie and so on if we are blessed.

One solution for to and fro airports is to get a portable stroller set up for someone with CP. Ellie’s classmate Lizzy has one and her mom brought her to Ellie’s party in it. It folds up to about the same size as the Peg Perego and is only ever so slightly heavier but offers a great deal more support. This is the stroller I am going to ask insurance for. We need it. As soon as I get the name of it I will post a picture of it in this post as well as the link to it.

Ellie’s Kid Kart Express, though it provides great support barely fits in our car and is HEAVY. I have to drop it about a foot each time getting it in and out of the car because it’s an issue of be gentle with the stroller or kill my back and my back wins every time – self preservation. This dropping it 12 inches each time takes it’s toll on it rather swiftly and I am forever tightening bolts and readjusting it.

Also traveling in the narrow confines of a plane are tough. Ellie wants to be on our lap and when the person puts their seat back there is no room, in fact it’s dangerous if they do it quick. We narrowly missed her getting clocked with a flying seat back. She will sit for a little bit in her own seat which we line with many pillows and both of us lean over to support her. And she is getting to be a much better sitter. It’s just that if the plane ever did lurch forward or experience any real jostling turbulence, Ellie would suffer like a rag doll being thrown this way and that. So we hover by her and hold her and basically are on egg shells the entire trip.

And you can’t let that guard down for one second. I did so as I was pushing her in her stroller out of the airport bathroom. As we were going by the stalls, a bathroom door stall flew open fast and I thought it hit her. She began to really cry hard. I have never felt like a worse mother. I thought it hit her in the head but there was no mark so I think it actually hit the side of the stroller. Just the same I was in tears before I realized it had probably not hit her but scared her. I felt all the breath leave me when this happened and got this sharp pain in my chest. Ellie getting hit in the head by anything even a feather is so not allowed in my realm of experience. Hasn’t she had enough head trauma for f$%&sake!

So I picked her up and carried her out of there. She was hysterically sobbing and I was trying to push the stupid Peg Perego at the same time with tears rolling down my own face and both of us were trembling. That really sucked as far as experiences go. I did think it was partly my fault however. Instant karma coming back to torment me in repayment of the fact that I gave a woman a dirty look who was using the handicap stall before us who was clearly not disabled.

Changing her in public toilets is a bit difficult as well. We usually just do it in disabled stall in the stroller itself by putting a pad down underneath her. But this obviously is not a long-term solution. Getting her walking or ambulating and potty trained are long-term solutions. We are working on the walking and its time to potty train her too. Again, I have no idea where to begin or what equipment to get. Any pointers on this will also be much appreciated. I do know she understands going potty so at least we have that to work with as a starting point. God, Ellie is going to kill me when she is older for writing any of this.

I realize that we are still caring for her in many ways as if she were a baby. It would not occur to me to sit her on the toilet since she does not do this at home. What is the transition? I probably should have potty trained her already but just and a lazy sloth of a mother. I really have no idea if we are doing any of this right. Where there are lots of rules for kids who can sit and walk and talk there are none for one that doesn’t do any of these things.

It just seems like going into the world transport system is dangerous for someone who can’t readily jump out of the way of all that surging humanity. Does this mean we just road trip it everywhere? Can’t drive to England though and I don’t fancy being on a boat with limited meds and food for her for any amount of time.

Dave and I love to travel. And Ellie did enjoy looking out the airplane window (this is the first time she has ever done that one – and very exciting for us to see). And I know she loves seeing her relatives and visiting beautiful places of the world and getting to be with Dave and me 24/7.

I really need to know with all these limitations and concerns, how do I keep the world from closing in on us?

A New Way to See

Finally, after much go around and come back again, I procured Ellie's first pair of glasses this weekend. They are purple and have stars on the edges and have a case shaped like a little plastic purple handbag with the word "princess" written on it in cursive little diamontes.

I put them on her and she scrunched up her nose. I am sure -that sensation of glasses on your nose for the first time ever is a bit strange. She kept scrunching her nose and the thing tickling it wouldn't come off.

At this point, as you can see here, she almost started to cry. But Dave and I, wanting to avoid this, piped up and said, "Ellie, you look so beautiful! These will help you see better!"

She thought about this for a minute and then, in classic warrior princess style, decided they weren't so bad.

Isn't that what it's like when you encounter something new and different? Even if that something is a fix to a problem or a disability. Once you understand that life is still life, that you are still loved and beautiful. It's not so bad. It's just a new way to see.

Happiness of Disabled Kids V. Peers

In light of my last rant if you are wondering if a disabled kid can be as happy as a non disabled one check out this UK study here. Thanks to David for posting about this here. Turns out that all that energy spent pitying the disabled would be much better spent on ensuring equal rights for them instead. Go figure.

Also, Jacqui, one of my all time favorite bloggers, has conducted and written an excellent interview with a very successful woman who has cp and is nonverbal. You can read it here. Thanks to Jacqui for this great interview and introducing me to Glenda Watson Hyatt, blogger and auther of the book, I'll Do It Myself!

First Years Reclining Booster - I think she likes it!

After Ellie's Physiatrist put the kabosh on using the bumbo seat we have been sticking mainly to the kid kart but that means Ellie can't be close to the floor and access her toys easily. But recently I purchased this little beauty at Target for $25. Worth every penny!

Thanks so much to Billie for this suggestion. Ellie loves her new seat and it allows her to go in things like kiddy pools and sit closer, on her own on the sand at the beach. Infinitely more important - it will allow her to sit at the table with everyone else - especially when we visit the relatives versus being in her kid kart away from the table. It's oh so portable too.

Medical Ju-Jitsu!

Tap Dancing

Fire Walking

Western Cowboy dancing as bullets are fired at his feet

Tightrope Walking

Trapeze Swinging

Plate Spinning

Mind Boggling

Wrestling

What do all these things have in common? Just the mere fact that they describe the labyrinth we are in right now trying to figure out what is best to do for Ellie. I haven’t posted much because I am trying to get information from doctors and as such slave to my unending phone list that continues to shrink and grow like some big fat freakish cyber worm that thrives despite chunks being eaten out of it by little persistent mothers.

Here is the thing, Ellie has reflux. She has seizures. She has massive hypotonia with an overlay of spasticity in her ankles. She has a vision loss that has increased from 20/60 to 20/260 in two years. She has a mild hearing loss. She has strabismus in her eyes that has gotten much more out of control over the last six months. Over the last 3 months she has gained two pounds and 1.5 or more inches to weigh in at 28 pounds and measure at 38 and half inches tall.

She is in a growth explosion.

She is changing cognitively as well as you might have noticed from all our days out where instead of cowering in her stroller she is happily taking in her world in the sponge like way little kids do.

She is a joy – just don’t want you to forget that. My anxiety is high because I want to preserve her life. I want her to live a long time healthily and happily. I don't want any big disease monsters to swallow her up or rip her out of my arms.

But because of reflux and seizures and constipation (the first and last have everything to do with being Hypotonic which includes all the sphincters in her body) she is on a ton of meds. Cisipride, Zantac, Protonix, Myralax, Depakote. She has been on the first three for four years and on the Myralax for 2 and on the Depakote for sadly 1 year. That’s a lot for a little girl's liver to take. We recently got the vision report that told us that she had this HUGE vision loss. Though in going over it with her neurologist yesterday we decided that it wasn’t totally conclusive and have to get her a couple more tests to really know for sure (did you hear that?! My cyberphonelist worm just burped loudly!). That said the whole wandering eye thing is something that is noticeably obviously new and different.

Because of this we started to really research all the meds she is on and look for evidence of drug interactions. Or at least Dave did. He did because I freaked out about the vision loss and was in a panic over it and told him my gut was telling me it had something to do with the Cisipride. So Dave, with his awesome amazing brain that is 2 parts Sherlock Holms, one part Copernicus, and millions of parts amazing computer scientist internet savvy guy found this site that tells you about all the meds in depth including rare side effects.

Guess what we found? A rare side effect of Cisipride is seizures and vision change or loss. A rare side effect of the Depakote (that we are using to treat Ellie’s seizures) is vision loss. So here we are treating Ellie’s reflux with diet and meds. Happily giving her a medication that could be the cause of her seizures though it’s really hard to know and then in turn medicating her for seizures with a med that can negatively effect her vision.

Someone, anyone, please shoot me now.

I am not quick enough for all of this medical Ju-jitsu.

All along we have been adamant about NOT treating her reflux surgically (meaning getting her a fundoplication which I have written about before) because we were sure she would stop eating because it makes it hard to swallow at least according to many adults who have written about it on the Internet. Most of them also reported losing 10% or more body weight, which would be a horrible thing for my Skinny-Minnie girl. Though these days the ribs are not as noticeable (her cheeks have always been quite full despite low weight). How many 3 year olds do you know that weighed in at 22 pounds? Now at 4.5 years old she is whopping 28 pounder.

Ironically and sadly, last May, she stopped eating completely by mouth despite our best efforts.

Most nights she wakes up multiple times for hours at a time due to reflux. I think on the nights she doesn't wake up it's not because she is not refluxing but because she is so exhausted. The Gods of Sleep through the Night are actually the Gods of GERD. F&CK%R$!

What to do?

Here are some options:

1. Continue to treat the reflux with medications that are only minimally effective and will certainly one day in the not too distant future ruin her liver which would be fatal on top of having all kinds of other side effects including seizures and vision loss.

2. Take her off the Cisipride, Zantac, and Myralax and take our chances. Go see the “Witch Doctors” including acupuncturists, herbalists, naturopaths, homeopaths, and on and on to try to find alternative solutions for reflux or diet change even though she is already on a low acid diet that I have written about extensively. I still believe in this diet as she is gaining weight on it, has the most beautiful skin and hair I have ever seen and it has been vetted by a nutritionist who is open minded to not personally supporting Enfamil. She also is much less gassy and vomits less on it. But it's not perfect.

Also, no insult to said Witch Doctors. I have had quite a huge healing of my own tattered first two vertebrae because of Network Chiropractic – which I am huge believer in because it delivered me from years of chronic neck pain. But the problem is, no two WD’s say the same thing about Ellie. In my gut I know to explore with caution and I will. But it all takes time. If we take her off the reflux meds the big, her esophagus is going to disintegrate clock, starts ticking - LOUDLY like in Poe’s Tell Tale Heart (please somebody know that reference!).

3. Realize that her reflux will be here until stem cells can heal her brain which is probably several years away and get her the fundoplication surgery and get her off the meds. A good friend and uber nurse told me that she has seen more than one child stop eating when they develop cognitively enough to realize that when they eat they get painful acid in their throat and mouth – this could certainly be what happened with Ellie last May. And that when they get the fundo and no longer experience that pain, start eating and get rid of their G-tubes. All that said, I still know implicitly we did the right thing not getting Ellie the fundo with her G-tube when she was one month old corrected and under 4 pounds.

G-tubes and fundos are NOT necessitated as some doctors might lead their patients to believe. Also, for the doctor I heard tell this to a mother in the bed next to our, G-tubes are NOT like wearing a wrist watch. I think he needs to get one and see if that analogy still fits. Some Residents are such idiots!

Rant, rant.

But if you follow this link to the description to this surgery you will realize quite quickly why I am not a fan. It just seems so barbaric and awful and God I hate the choices before me for my warrior princess pigtail sporting cutie pie. It’s just not fair.

So there are our options. Sucks doesn’t it?!

Freedom to go where she likes...

If you can't walk or run or crawl maybe this is the next best thing if you are four.

I want a Wizzy Buggy for Ellie, and Eden, and Moo and all the kids who want to get where they want when they want and currently can't!

Thanks to Billie for discovering this wonderful, hopefully new trend in buggy making. The big question is when will the cost become something reasonable versus $4,000 current value? The second question is, when will they be available in the US?

Disability Blog Carnival: latest and submissions

The latest carnival is up at The Gimp Parade. Check it out! Thanks to Kay for organizing this thought provoking and enlightening carnival on "Firsts".

This image on the back of the train cracked Ellie up. I wonder if it would do the same for Kay. It is some sort of wheelchair with no back. Hmmmmm.

Next carnival is here on May 24. Submission form is here. Deadline for submissions is May 22.

Different Points of View

Phone rings

Me: Hello

Caller: It’s Neuro Nurse from Neuro Doc’s office. I have the results of Ellie’s Depakane level. It’s at 75 which Neuro Doc is satisfied with as long as she is not having any symptoms.

Me: She is not having seizures but she refuses to eat.

NN: When did she stop eating?

Me: (thinking: ok this is the 3rd time I have reiterated these same details) She stopped eating shortly after she started the Depakane last May.

NN: Depakane is given to people who have weight gain issues.

Me: Yes, I know. Initially for the first two weeks Ellie at a little more than usual but after that then she refused to eat full stop. Are there any other seizure meds we can try or is there something natural I can give her to increase her appetite? I think the Depakane is taking away her appetite.

NN: Doesn’t she have a g-tube?

Me: Yes, but she used to eat all her pureed foods. She would eat 1.5 cups in 10 to 15 minutes. She even used to make a little mmm, mmm sound as she ate. She liked her food.

NN: (long silent pause) Why was the g-tube placed?

Me: When she was in the NICU because they wanted to send her home. I regret that decision because it masked neurological pressure symptoms later on and greatly increased her reflux.

NN: If she is keeping the food down and is symptom free we wouldn’t want to change the medication.

Me: She is not symptom free. She’s stopped eating. It’s a quality of life issue. She CAN eat but won’t at this point and all of that coincided with her taking Depakane. Her dysphasia is so much better at this point. She had a swallow study and was cleared from thin liquids. We don’t always want her to have a g-tube because I know she can eat. I know she used to enjoy eating.

NN: Well, sometimes Depakane can affect the palate. I will run this by Neuro Doc.

Me: Thanks.

Disability Blog Carnival Coming to Ryn Tales

I am happy to be able to report that May 24th, 2007 is the date of the Disability Blog Carnival that I will be hosting. In keeping with my life, the theme of the carnival is "Disability and Family". I have my particular set of experiences with entering into the world of disability with Ellie. Those experiences include my own unfoldment, Ellie's unfoldment and development, how it has all weighed on my marriage, the reactions to our life circumstances by my family and friends, and on and on. All relevant, all quite impactful. I am leaving it at that.

Please interpret the theme however you like. Everyone is welcome to participate and all submissions will be considered. To learn more about the blog carnival you can go here. The Temple University site that the link takes you to is an excellent resource.

Looking forward to hearing what you have to say!

A Slice of our life before 9am: Ten Beautiful Things

1. I wake up before Ellie. It’s 6:20am. The house is quiet and filling up with early morning sun. I feel good. She slept through the night. I peek in at her. Her arms are out wide. Her breathing is steady and the deepest I have seen it in awhile. She looks content. I think I can actually hear her growing. There are no dark circles under her eyes. It was a good night for her too.

2. I tip toe downstairs and measure out her meds; Protonix, Cisipride, and Zantac to battle her reflux and Depakane to keep the seizures at bay. I drink water. Every day I get a bit dehydrated because she keeps me hopping. I forget to look after myself. This morning I drink two 10-ounce glasses worth. My body thanks me. I am bargaining with myself in doing this because I know that for every cup of coffee I drink I need to replace it’s diuretic effects with two cups of water. I am multi tasking – quench the dehydration of the night and get a jump on the two cups of coffee I will drink later.

3. The coffee pot sputters and gurgles and spreads its aroma across the room over the unfinished floor that is soaking up the morning rays. I take this time to contemplate and take some deep breaths to get ready for the day. I am again grateful that she slept through the night. My contemplation is distracted by two things: the fact that I know I only have one or two moments more until she is awake and needs my complete attention and thoughts of Dave. He is out of town. Working hard in the middle of some industrial wasteland, a long way from Boston and sunny LA. He had to leave just as Ellie got home from the hospital. The first night he was gone she woke up at 11pm. Nothing would console her for 2+ hours because she wanted to snuggle up with Dada. Mama just would not do. A tribute to how great a dad Dave is. That makes me smile. There are so many people in Ellie’s life that she is far away from and when she sees their picture she let’s me know she wants them. She puts her thumb on them and says “Uh!” and looks around like the person is hiding. Very cute. Heartbreaking.

4. She is awake. I can hear her tiny voice on the monitor. She is babbling away mostly vowels and very few consonants. But I know she is asking for me. I go in. “Hello! Oh, it’s so good to see you.” She smiles, eyes half open, kicks her feet and waves her arms in dystonic reverie. I pick her up. Bring her down stairs. We land on the couch. She immediately starts looking for toys to play with. I tell her good morning. Ask for a good morning hug. She obliges by burrowing her face into my shoulder. I sign thank you. She scrunches. Not getting toys fast enough. She puts her right arm over her eye. Her whole body scrunches inward. I ask her, “Are you grumpy?” She looks at me. I hold out two hands. Wave the first hand as I say, “Is Ellie happy?”. Then I wave the second hand in front of her and ask, “or grumpy?”. Ellie picks grumpy. I say, “That’s ok. Sometimes people get grumpy in the morning. How about you sit in your Bumbo chair?” More scrunching. I know she wants to play from her favorite platform, mama’s lap. She is too heavy to carry back and forth to the kitchen so I need to put her in her Bumbo. There she can be upright, clear her fluids and stuffy nose as well as play. I put her in the Bumbo anyway. As soon as I do I ask her, “Do you want to play Globe with me?” At this she squeals, LOUD, "EEEEEEEEEEEEEEE!". She has this maniacal look in her eyes. Her eyebrows arch in perfect triangles. The squealing continues only to be interrupted by dystonic arms flung out to each side. She throws her head side to side. This is then followed by Ellie pushing up with her feet, which makes her bounce a little up and down in her seat. She can’t move and vocalize much at the same time. After this she stops moving and squeals some more. It’s very cute.

This is what Ellie does when she is excited and happy. It’s a tremendous way to say YES!

5. I become Ellie’s hands and arms so that we can do some imaginary play Ellie style. Her Pooh toy has to dance on top Globe about 500 times. She grabs a cloth napkin nearby and tries to put it over Pooh. This indicates she wants me to cover up Pooh so she can find whom that is dancing a top Globe. We do this many times to many squeals of delight and dystonic arms and head. Then she reaches for her Doodlepro saying “uh”. I get it. Place it in front of her. She reaches, grabs the pen and moves it toward my hand. I ask her, “Do you want to spell things on Globe?” Smile and another “uh” while leaning forward. I ask her, “Ellie, where is this?” I have written AFRICA on the Doodlepro. Before I am even done writing it she is turning the globe around to find Africa. She puts her whole hand on it and looks at me with an expectant smile. I praise her for finding Africa. She then wants to spell Africa Ellie style. We do this for each continent and the poles and the equator. She has found a new part of globe and puts her thumb on the north south east west compass. She looks at me and says “ah” with her right eye brow raised. That’s her facial reaction when she discovers something new. It’s so cute. I tell her about the compass. Then she puts her hand on Doodlepro. She wants me to spell the word compass. I do and she is delighted. She then puts her thumb on each letter of the word. I read each letter she touches. I go at her pace. “C. OOOO. MMMM. P. A. S. S!”

This is how Ellie learns.

6. In between all of this I have given her Protonix, then 20 minutes later Cisipride. Now it’s time to change her diaper, get dressed and get her AFO’s on. She tolerates all of this because I have propped her up on a Boppy. Big Teddy bear is holding up Doodlepro for her. Raggedy Ann is keeping her company. She is examining Raggedy’s red hair and pulls the pen from the Doodlepro. I know she wants me to write. I do. I write Red Hair. Ellie is delighted. We talk about Raggedy’s hair, face, clothes. We look to find where it says "I love you" in a heart over her “heart”. It is new that Ellie is more interested in these non-musical, non-mechanical toys. She takes Raggedy in by both hands, one on each side of her head and starts to babble to her. This is new too, using both hands so well to hold a toy up. It’s major progress. I am happy to see her doing imaginary play all on her own. I ask her, “Is Raggedy your friend (I sign friend as I say it), your girl friend (signing as I go)?” Big cheeky grin and then back to babbling at her girl friend. Getting dressed can take 20 minutes. Ellie looks happy. She has stopped playing and is looking at me contented. I ask her as described before with my hands, “Are you happy or grumpy?” This time she picks happy and smiles. I say, “Oh that’s great, me too. Are you hungry?” Big dystonic reaction. I ask her, “Want to eat some cereal?” Her reply, “Ah” reaching for my hand wanting me to pick her up.

7. I do and hold her close to lift 24.5 pounds of her. She does not help or hold on. She fearlessly wiggles to turn round in my arms to face forward to see where she is headed. I tell her we are going to the table to her big chair (kid kart express). That she can play while mama makes her cereal. I strap her in her chair and put a blue non-slip mat in front of her on the table and ask her which toy she wants by giving her a choice of two. She picks her Sing and Discover Piano. She sits facing me as I make her food.


8. I prepare her breakfast, organic multigrain instant baby cereal in organic rice milk, and my own, Pete’s Arabian Mocha Java coffee and toast. She plays this little rif that comes if you press the elephant button a couple of times. She knows I like it because I always sing it back and tell her it’s jazz. I echo it back to her now to her delight. She plays it again. I sing it back. Then she plays another song that I sing with the toy from across the room. This is her way of communicating with me. I wonder if she has a future as a DJ.

9. I bring the food over. The struggle begins to get her to eat by mouth. I try to gently do her mouth exercises. I say, "Warm up Ellie's mouth!" Even with the sound effects and trying to make it fun she is having none of it. I ask her if she wants to do them on mama. She grabs my face for a moment and then tries to sit up on the table. She loves the “wood” table. Wood and table are new things she has learned and is far more interested in them than eating. She is hungry but just won’t focus on the food. She is practicing all manner of avoidance. It’s hard. It’s frustrating and sad because last May she was eating most of her food by mouth. Now she refuses all food. I think I must take her to some sort of feeding clinic. I give up after 20 minutes and give her the bolus through her g-tube and her Depakane with it. We read and I eat my toast and ask her if she wants some. Nope. Sigh.

10. Out the window I see a glorious sunny February day warm enough to go for a walk.

Even bigger picture

Before I knew about the field of organizational psychology I quit being an artist and started off to find a career I could feel good about making money at. On this search I got a job at a group home for juvenile delinquent boys ages 13-19 called Our House. It was an amazing place started by a former flower child and innovative peace loving thinker who devised a method of holding the boys accountable for their actions that did not involve any physical take downs or restraints. The doors were not even locked ever. It was a great experience. I started a GED program and taught art and Art and Math classes as well as set up a computer room for their use and to learn basic computer programs. They were usually with us for 4 –6 months and during that time you would see them get to become kids again.

The sad part was that they would be sent home to the same drug addicted parents or rough neighborhood and most of the time you would hear that they were back in lock up or worse. I realized it would burn me out to be working at this level for the long term and decided that I wanted to work with whole systems to change them for the better.

The focus on the big picture of our society’s mistreatment of the disabled seem to be missing from the conversation that starts with the question, “Should we resuscitate preemies and who should decide?” and travels through to asking, “What happened to them after age 2?” But is has not yet landed on my question which is,

“What if society actually supported and accepted its disabled as a valued and important part?”

This is a discussion of isms.

Disability is an ism. The fact is that society does not tolerate isms well, especially those in the minority. It balks at those that do not meet up to aesthetic standards of beauty and usefulness. Of course these aesthetics are shallow and ruled by ignorance and an assortment of negative drives. A critical cause behind outcomes like the case of Ashley Treatment occur because society is in general not supportive of people with disabilities in just the same way that corporate America is discriminatory against women and people of color. Now of course there are tons of people who are supportive of the disabled - but on the whole society is not. I know this because when people or organizations are really committed to something and supportive of it they act on it and put money into it. Like I said, many NICUs are the star earners/cash cows for hospitals so the bias is to keep em running and keep expanding our knowledge of neonatology – which is a great thing. But it could also explain whey there is so little hoopla and understanding of the outcomes of former preemies who are at home and needing support and not bringing in huge sums for healthcare providers for critical treatments. I have found that I have to fight insurance for the chronic conditions that Ellie has. Cerebral Palsy for instance is a chronic condition and requires lots of equipment, which I have to jump through a lot of hoops to get.

I have also found that funding for early intervention programs and care attendant hours for children with special needs whose parents are in great need of some help is very limited and getting ever more so as congress cuts back each year. Why is special education in mainstream public schools such a problem (for a great blog on this check out Charles Fox)? Most school districts don’t want to pay for special needs education and nickel and dime and under deliver the child and parents ad nauseam.

It seems that the amount of support diminishes as the disabled person ages. There also seems to be a hierarchy of special needs that get funded. Blindness gets the most money and then deafness. I think brain damage and cerebral palsy are at the bottom. So the more disabled you are the less help you will get over the course of your lifetime.

There needs to be discussion about changing the system that has a dropping continuum of support based on the assumption that people with cp can only be helped up until age 3 or 4 or in child hood. The assumption also holds that the disabled have nothing to contribute and that they are a drain on the system. God this bothers me and couldn’t be less true. I have read so many blogs by disabled people who are absolutely brilliant but can’t get a job to literally save their lives. It’s so ass backwards.

It is the ignorance and discrimination towards the disabled that sets the back drop for the discussion about preemies and their outcomes whether it’s acknowledged openly or not. I think it is why the preemie myths prevail because we don’t want to deal with our ignorance on the whole of disability. I read on one blog of a disabled person that disability was most simply a matter of equal access to all parts of society. If there were equal access there would not be disability or racism or chauvinism or any number of isms.

Also it is important to realize that people with disabilities have a lot to offer the world and are often not given the chance.

It’s the mindset that needs to change.

When you have a child who then turns out to be disabled, your mind set is forced to change. And of course you love them. So there you are, loving this person who is different from most of your friends kids. But you think they are great and they are and they teach you so much and you change at the deepest level. This is the context I am coming from when I discuss Ellie and how great my life is because of her. Because of her I have learned a new language and with it gained an entirely new perspective I could not have understood any other way. I am so much better even for the wear and tear.

The scary part is that the backdrop for Ellie’s life is a world where the disabled are discriminated against - a lot. And that is terrifying to me. I want people to read our blog and be able to understand that disability has many faces and many gifts. This is not trying to make lemonade out of lemons – it’s just the truth.

Home

Home at last

Here are some pics of her from the Hospital. I think her head cloth makes her look the girl with the pearl earring, sans earring.

The good news is, it wasn’t seizure activity. The bad news is, that it is probably an issue with her eye muscles which we will be exploring with her ophthalmologist. More fun. Glad we are catching it early and so, so, so glad it’s not seizures or a shunt malfunction – both much worse things.

We came home and Ellie took a two-hour nap on Dada on the beloved couch and then we popped her in the also beloved B.A.T.H. Bath. She was delighted and a happy girl having Mama’s and Dada’s full and lavish attention. Her eye is still a little wonky at times but just knowing it’s not her brain seizing or getting injured due to hydrocephalus makes it a lot easier to handle. I worry for her vision – she is so visual. Will keep you posted.

Ashley from Stepford- Reposted

I have taken this post down and put it back up again because that is the only way I could get rid of an inappropriate clotheid commenter who thinks that profanities are a meaningful way to communicate. I have also turned on the comment moderation to ensure that this psycho will not be able to mar my blog any longer. If he posts without profanity, personal threats to me, and has something intelligent to add to the conversation I will let his comments go through. It's the first time I have actually been threatened via my blog and probably not the last. Sigh.

Apologies to Maureen, Emma, and Janet who left meaningful comments that got wiped out with the rest. I have also take the opportunity to update this post after thinking about it more.

First off, let me be really clear. I think the "Ashley Treatment" is wrong. Wrong now and wrong forever. There are so many reasons why it is wrong but the main one being that it is a violation of Ashley's human rights. How horrifying that there are now proposed studies to try this on other disabled people. Disabled people who are helpless to protest or disagree.

Ugh. I am just so disgusted and upset at the whole thing. I have so many questions. There are so many "nevers" on their blog. She will never do this or that. All their "could happens" are negative things like cancer and sexual abuse. My biggest question is have they ever tried any alternative therapies to helpher brain heal or grow? Is she not an excellent *future (if it is safe one day - which is might be if the government stops blocking the research into it) case regenerative stem cell therapy? What if that becomes a reality in the future and she could have a chance at a better life - but oopps you are 9 forever????

Even if her condition is truly one that will persist and never change, is it right to alter her body in these ways? It is the system that needs to be changed to include support for these parents. Technical support like a lift and emotional support to deal with the situation. The medical support they are receiving seems quite a slippery slope toward massively infringing upon the civil rights of all disabled people.

This quote below is from the Disability Rights Education & Defense Fund and captures how I feel about this exactly(see link below):

We deeply empathsize with parents who face difficult issues raising children with significant phsycial and intellectual disabilities. However, we hold as non-negotiable the principle that personal and physical autonomy of all people with disabilities be regarded as sacrosanct. For decades, parents, families, and the disabled community have been fighting for this principle, and for community-based services for children and adults that make it a reality. Their advocacy led to the enactment of state and federal laws in the 1970s that established extensive rights to full personhood for children and adults with disabilities. These laws were passed to remedy our shameful history of abuse and mistreatment of people just like Ashley.

The medical profession believes there is no recovery from many neurological conditions and some of these conclusions are based on very, very limited population sizes statistically. When something is not clear, making a decision about what to do about it becomes more difficult. Whether Ashley's parents deny it or not, their situation and decision IS all about ease of management. They sound like loving parents - kind of. But the fact that they keep denying this is about managing Ashley physically really irks me. Why not just admit it?

I can personally relate to the fear of a child who is not mobile getting bigger - god my back is in pain every singleday. But my goodness I am creeped out and even if Ellie did not show as much promise as she does or any promise, I would not alter her body unless it was medically necessary for her survival. I think these parents are not being totally honest about their motives and therefore the whole discussion is twisted to begin with. It is such a slippery slope regarding it's impact on the rights of disabled people.

So not trying to be quick to judge but I can't jump on the middle of the road live and let live band wagon either. I am just too creeped out. Gimp Parade, as usual, offers a great perspective and some important points on this whole thing that you can read here.

David has also posted on this here and it is definitely worth the read from the Disability Rights Education & Defense Fund here. It seems that my abusive commenter is all over David's site and Gimp Parade has been lucky enough to have an encounter with him as well. Sad that some people can't discuss things in a civilized manner. Diversity of thought through civilized discussion is what brings enlightenment. Anger only generates fear and ensures ignorance.

The Bravest Little Girl

Ellie playing with Pooh after her nap.
This post is dedicated to Ellie, who is the bravest little girl in the world and has had a rough day. The past few posts I have joked about this or that and in truth, it has been somewhat of a gallows humor. This blog is supposed to be about parenting a child with disability. Sometimes I get a bit punchy before facing really tough things. Things I would not choose to face in a million lifetimes if I had my druthers. And I have been facing today for a couple of weeks. Now that we have faced it, I can write about it and maybe save another poor mother or father some trouble. It’s not that we mothers of special needs kids are not informed. It’s just that each “intervention” carries an element of unknown consequences. When we were in the NICU we learned early on that all of Neonatology involved choosing between the lesser of two evils. Today we made such a choice and have lived to tell the tale.

To tell you what happened and why we did what we did I have to make sure you know some basics about cerebral palsy. For those of you already living the dream skip to the next paragraph. All children with cerebral palsy have varying and mixed degrees of Hypertonia and Hypotonia. Hypotonia means your kid has weak muscle tone and is “floppy”. These kids might have trouble holding their head up and sitting, etc. Kids who are hypertonic are stiff and in extension (arms out, legs out) a great deal. This is called spasticity. Dystonia is when you go to do something and you go into a rapid extension. Ellie, lucky girl, is Hypotonic with an overlay of Spasticity in her legs. To compound things, the act of growing can make spasticity worse. The interesting and awful thing that happens when the brain is damaged is that it turns things unendingly ON. In Ellie’s case the Equinovarus deformity from the spasticity in her ankles is due to muscles that are constantly being flexed and pulling her foot in. Try it and see. Flex one of your major muscle groups like your calf muscles or bicep. Hold it for as long as you can. Sucks, huh? But now you have a modicum of an idea what spasticity feels like. In a growing child such a thing can deform limbs. You may have seen people with CP who have a hand that is turned down at the wrist at a seemingly impossible angle and held close to the body. That is the result of spasticity, the constant firing of neurons to the muscle which in turn pulls the bones and ligaments permanently out of place to the point where eventually there is a complete loss of function.

Ok – there are some cerebral palsy basics for you. Today we went to the Floating Hospital in Boston and had Dr. Webster perform a Botox treatment on Ellie. Botox you say?! Yes, there is actually a more noble application for Botox than making sure no one sweats at the OSCARS and Reese Witherspoon’s pretty brow is not furrowed.

Dr. Harry Webster is on his game and passionate about his kids. He did the whole thing with good pain management and a deftness that comes only to those surgeons that are truly talented. He was in Flow. Which is just where you want someone to be when he or she pumps botulism into your kid’s leg muscles.

Some days I can’t believe the details of my own life. As an expectant mother you consider things like the kind of diapers you will use, the books you will read to your kid, the food you will feed then. Anyway, I know you may not know me well but these are words of high praise for a doctor. We are not the type of people who just blindly do what the doctors tell us. We have been putting off this treatment for two years. There are some interventions like getting Ellie a Fundoplication that we have outright refused. (I really need to write about g-tubes, eating and nutrition and fundo’s).

If you are facing Botox injections with your child, I really believe that deciding when to do it you should consider two criteria. 1. Is your child ready to walk? 2. Are they at risk of permanent deformation and contractures that will ensure they never walk?

Ellie met both criteria.

A word on Pain Management:
Two years ago, among the many ‘signs’ that it was not the right time to give Ellie Botox was the fact that a doctor at another well-known hospital scheduled the treatment for her with NO pain management at all. After having seen the procedure today and my child’s reaction to it, I can tell you, providing pain management is critical. Getting Botox is very painful even when sedated. Botox is shot directly into the muscle. Ever had a tetanus shot? Multiply the pain of that by 100.

Our pain management for Ellie consisted of 3 things:
1. Emla Cream. This was put on the exact point of the injections including the shot of Versed. Like, most NICU babies Ellie has had over 200 needle sticks, so why add to that?! That said Emla only works on numbing the skin, not the muscle, which still hurts like a bear when poked with a needle. Again, think Tetanus x 100.

2. Versed. This was injected directly into Ellie’s thigh muscle and made her drowsy and is supposed to make her forget any of this ever happened. As I write that it sounds awful and if you click on the link and read the description you will think I am awful too to ever let my kid have that. I feel like some psychotic parent covering up their crimes with some designer drug. However, after seeing the Botox injections, I am glad she will forget because she would have never forgiven me otherwise.

3. Over the counter Ibuprofen the minute we got home. Dr. Webster said the injections are the hard part and once the Botox is in, it does not hurt. I wish I had Reese’s number so I could ask her directly. Does that stuff in your forehead hurt right after? And if so, for how long?

So you might be thinking, why not put her out completely under general anesthesia? Good question. Our answer is that this is counter indicated for anyone with any brain injury. When kids like Ellie go under they can be set back for weeks and possibly months in their functioning and development. It takes a long time for their brain and already weakened bodies to recover from general anesthesia. We minimize Ellie’s exposure to anesthesia as much as possible. For example, we have never had to give it to her for MRI scans of her brain. During MRI’s there can be no movement. We have been able to distract her with mirror balls and light and songs and whatever it took. For her ABR’s (brain response hearing test) we have been successful at scheduling them at naptime so she would sleep during the test. My main point is that sometimes medicine becomes dogmatic. I have a bias against younger practitioners who still think they are god but are too afraid to think outside of the box. For example, always pairing a g-tube with a fundo even if it ensures that the child will not eat by mouth. If a doctor’s answer to your question is ever, because that is the way it is always done, or any derivative thereof, find another doctor who thinks for him/her self and considers each patient a unique case.

As parents we have questioned everything and educated ourselves so we could make the best choices for this little soul that is in our care. No child deserves less. When we don’t know what something is, we educate ourselves. The only prerequisites we have are our abilities to read and think. There are a ton of resources on line (see the links in this post). We have bought many medical texts in order to catch up with the doctors and understand the choices being laid before us. We had to because our “Yes, do that” or “No don’t”, especially when Ellie was in the NICU, meant the difference between life and death for her. So we wanted to understand our choices. We found that the worst doctors don’t take into account the patient’s whole life. When they first told us about shunts I had questions about the tubing that would go into Ellie’s abdominal cavity and it’s effect on her reproductive organs. That stopped the team in their tracks.

Isn’t this a mother’s logic? I think about Ellie’s whole life from birth to death and I don’t want her choices limited because someone was not being thoughtful enough to consider all the implications. (Incidentally, this is also makes me a very formidable chess player that Dave still has yet to beat.)

We have also learned so much from other parents. In the NICU two very wonderful people who were a few months ahead of us in their journey gave us some very good advice. C and W told us to ask each question three times to three different people. Best advice ever for any parent facing a long NICU stay. We still do this. The thing is, you always get three different answers. Medicine is not an exact science that is why they say practicing medicine. Woe to any parent who does not participate in the thinking process of solving their child’s issues.

Upon climbing off my soapbox, I can tell you that Ellie is sleeping now. We will see if the Botox works. The next step is serial casting to get her feet back to neutral so she can stand on them. I know Ellie would much prefer to be able to ambulate or walk to get her toys versus having to roll a few feet, look to locate, and roll again. Ellie is a great roller but when you have to roll to get stuff you can get stuck on other things like couches and corners. Ellie wants her independence; this I am sure of.

Hopefully this path with Botox along the way will get us there. It seems the lesser of two evils. She is braver than me. I had to keep from sobbing during the entire thing. Once it was over she smiled at her Daddy and the sun shone again.