2020 Post, COVID-19 Edition

Hi Everyone,

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

Ellie in her stander.

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

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

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

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

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

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

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

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

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

Cha, Cha, Change! or Goodbye Feeding Tube!

Ellie having a lavender foot soak on her Winter Break

This last 6 months has been a time of intense change for us all and for the better. On October 22nd of 2013 Ellie got her g-tube OUT (for good if I can be so bold to say that)! AND on November 4th she started at a new school.

When Ellie was born our wonderful neonatologist Dynio said that Ellie will present her needs. That concept stuck with me.

Me and Ellie playing her Paper Jamz guitars

Ellie's g-tube was always a nightmare of leakage, skin breakdown, and intense management. It progressively started popping out more and more. I tried it all, taking it out for a little time (actually over night) to see if the track would shrink a bit. Taking her to the doctor to see if they could surgically make it less leaky. We are lucky to have a dear friend who is a wound care nurse par excellence so we have been able to manage her dressing at home and avoid the initial yeast and fungal infections that occurred when we were still in California (another benefit of having moved to Boston). But it was coming out more and more and we were changing our elaborate and expensive dressing on it several times a day. They had to do this in school too. And it was constantly leaking.

 In February (this time last year) it was popping out once a day and Ellie's physical revealed low vitamin D levels. I upped her vitamin D and other nutrients and in April got an appointment to see a GI doc to see if there was another type of G-tube that would work better. It had started popping out twice a day. And for those of you who have not lived that - it's awful. Ellie is in pain because stomach acid burns the exposed skin around the tube which was like an open wound all the time. And she loses whatever meal she just ate and you have to transfer her, lay her down, and clean and redress the site, insert a new g-tube (into her stomach) and get her washed and dressed in new clothes. The whole thing can take a good 30 - 40 minutes as you try to distract Ellie who wants to scratch her stoma area because acid on skin hurts and itches. Super fun. So when we went in April we saw a nurse first. She asked me to show her the site. I got Ellie onto the table and asked the nurse for some towels. She was surprised by this. But she got them. Me and the nurse I brought with me then proceeded. I cut off the dressing and my nurse positioned the towels to stanch the deluge of stomach fluids that would ensue after I took out the Mic-Key Button so the nurse could see the site.

When the GI nurse saw Ellie's stoma she shrieked (not exaggerating here), "OH MY GOD! OH MY GOD! It's a hole! It's an open wound! OH MY GOD!" I started to explain how hard we have worked to keep Ellie's skin clean and well cared for and that the tube leaked from the beginning and that we have had to limit Ellie's PT and body Jacket and every thing to protect the site. She kept saying Oh MY God! At which point I started to cry feeling very bad. She then said, "You guys have been going to heroic measures to care for this! The skin around her site is remarkable and perfect! But her site is a hole, there is no track." I said that I had thought so but that Ellie's old GI Dr. had not mentioned that during the last exam. She calmed down once I started crying and I calmed down too. The doctor came in at this point and we decided to try a different tube and see them once a week to follow it. Long story short we tried the tube and it worked a little better but not much.

 The whole incident with the nurse losing it was actually a wake up call for me.

We had been going to heroic measures. Me and Dave and Ellie's teachers and the carers we have helping us in the home. Our quality of life was very negatively impacted, Ellie's most of all by this. Ellie had been doing great taking sips of liquid from her amazing speech therapist Katie. AND she had been eating all her purees for several years now. I realized that maybe she was presenting something new to us. Presenting that it was time to get rid of this awful, painful wound.

I presented this idea to the head of GI at the hospital and he said that if we close up this site and then put another feeding tube in a different spot, there was no guarantee that her skin would not do the same thing. He later retracted that because I think for a doctor it's a huge risk to encourage a parent to get rid of their kid's feeding tube when they have a history like Ellie's.

However, Ellie was doing well with her drinking and a nutritionist had told me there were kids with no feeding tube who did not drink and were OK. Note this was not my goal - I want Ellie to drink. I knew that all the time we had spent changing her dressing and managing her site would now be spent on working with her to drink.

Nosey Cup

But isn't that time better spent? We spent over 12,000 hours getting her to be able to eat and her glowing skin, hair, and growth rate, alertness, and lack of colds (and normal elimination) is a testament to the goodness of having done that. Also, there are cups everywhere that you could make into a nosey cup by tearing or cutting it. There aren't g-tubes and Allyven pads, and Hy-tape everywhere or people who could even handle dealing with Ellie's site. My goal as her mother who loves her is that she be as independent as possible by the time I leave this world and that includes not being dependent on expensive medical supplies (if at all possible). Note, I am not knocking those supplies or the tube - they saved her life. BUT if there is a choice point that involves more work for me but provides an ultimate benefit for Ellie, I am going to go for it.

In the several months before the surgery we worked and worked on getting Ellie to drink. We all (school personnel and Dave and I and our home carers) used spoons and the nosey cups. We had enough experience with feeding Ellie that we knew what to do. It was an adjustment for all of us. Giving someone liquid in a cup is difficult enough. Now factor in someone who moves her head from side to side and has a slight oral aversion. We started by thickening apple juice with apple sauce. But because apples are so hard on the teeth I now give her other things to drink. One is her cantaloupe and coconut water juice I make her myself.

Ellie's Hydrating Cantaloupe Water Recipe:

1. 1 cantaloupe
2. 1 100 ml or more of coconut water
3. 1 pinch sea salt
4. 1 tablespoon of agave

Direction: Take 1 whole cantaloupe seeds and skin removed and blend it with one big carton of coconut water along with a pinch of sea salt and a tablespoon of agave (optional).

Ellie loves this and it's very hydrating and cantaloupe is easy on the teeth. I also give her my green juice too which she loves! I make Kris Carr's Make Juice Not War juice (Google it). The other thing is that Ellie eats purees all day - not dry crackers or cereals or dry anything. There is liquid in her meals. I do worry about her getting "free water" but for now she is hydrated. Though the doctors would have liked to see Ellie drinking 1,000 ml's of liquid a day, we did the operation when she was at about 300 cc's per day. Which is pretty good as we started at 0. A critical factor was that she would eat her meds that we mixed into her purees.

Ellie on New Year's Day 2014

On October 22 we had the operation. The surgeon told us we would be in only overnight but because he realized Ellie's shunt cables drain into her abdomen and because her site was so bad (the stomach lining was growing outward..!) he did some extra things to ensure closure and that her stomach contents would not leak into her abdomen compromising her shunt. We were in from Tuesday to Friday with Ellie on morphine and in a great deal of pain the whole time. Not fun. Poor Ellie. I remembered it was rough for her to get a tube and for my little girl, equally rough getting rid of one (which is so NOT the norm - typically they close on their own). I am not sure what her karma is in this life, but she has some extraordinarily challenges. Full recovery took about 2.5 months.

Today she is eating slightly less than she did with the tube (but not losing fluids and whole meals either).  She is drinking about 400-500 per day, and hydrated and moving her bowels much, much better, and her vitamin counts are all excellent. She was losing so many nutrients and calories every day right out of her tummy. Now she is keeping it all in. She still has reflux, but it's much better too. The green juice is still a huge factor in her being less acidic but she also isn't taking air in through her belly anymore. We were also able to get a body jacket (spinal orthosis) that actually works because we don't need a big hole in it to accommodate her G-tube.

Most of all, Ellie's quality of life is much, much better! She is in far, far less pain. She is able to concentrate much better without the constant itching and pain of the tube. For her 11th birthday she got her tummy back. Can you imagine how distracting having a feeding tube that hurts all the time was for her? I think about when I get a cut in my finger and how it can be slightly distracting when it's fresh. A leaky, painful feeding tube would be magnitudes worse. Every time I see her smooth yet scarred belly I have to kiss it. She had to be really brave to drink because liquid is really fast and scary to deal with if you are hypotonic and have dysphagia. Ellie works as hard as we work with her and the results have been worth it.

Trinity's Tree

Carpe Diem!

Carpe diem, quam minimum credula postero.

Seize the day, and put no trust in the morrow!

Picture: Ellie dancing.

Life after 8 and other news

When Ellie was little I would search the blogosphere for information about kids with CP and multiple special needs and I would always find that the blog ended when the kid was about 6 and it was maddening in terms of outcomes. Like, what happened to them? How did they turn out? What does this mean? And of course the smaller voice whisper-shouting, "I need to know how this is going to turn out!! Now! Please?"

But now that Ellie is 8 I am there in the middle distance of her childhood. I have a lot of answers I agonized over when Ellie was under 2. And, obviously, there are still a lot of answers I don't have, like what will happen to her when I die? Which, let's just be honest here, is the scariest, most upsetting, soul crushing question of all.

I still don't feel any cheerful carefree optimism about that. Not that there is nothing to be optimistic about. Not that there won't be people who love her. Not that there won't be amazing outcomes. I don't feel optimistic about that because currently that is not how I am made - on that topic.

But at eight, and maybe I should have learned to trust more, I can tell you many of the fears I had when she was in the NICU or at ages 1 and 2 are gone. She is not a "vegetable" and well beyond that she is the coolest, most beautiful, smart, funny little eight year old I could want. I am happy being her mom. She goes to school. She has a life and there are other people in our world that love her and us. She rides a horse for crying out loud! She EATS. She is growing and gaining weight. She LEARNS and loves and laughs - a full belly laugh now that I really must record and put on this blog because Ellie's laugh would make the most stodgy, serious, kill joy of a person laugh too.

But why did all those other bloggers stop writing? I think I know. Time. Now that Ellie is so much better there is far more to do outside the home. Instead of keeping a vigil over her sleep (where I would find myself writing) I am taking her to ride Splitty or to school or to the museum or to the beach or to grandma's house. Instead of holding her while she is sleeping off a brain surgery we are dancing around the house burning up all that enviable eight year old energy that is seemingly inexhaustible or we are learning at the computer or working using her "voice" (which I need to post about). Or we are eating - which still takes considerable time but at least it is by mouth with such non-exotic things as Mama's Spinach Pasta, Green Goodness, or Eggy Pudding. All of which are made fresh and with ingredients that are off the shelf versus ordered from England. For those of you who have read through this blog (which is amazing if you have) you know what I'm sayin.

Also, because she is well enough to do these things, I am working more, far more. At this point in life I am finally getting to pick up the wreckage of my pre-Ellie life. And wreckage, be assured, is NOT a strong word or an exaggeration of any sort. A big chunk of that wreckage has to do with my dissertation and doctoral degree I was making revisions on when Ellie was born. Imagine meeting all the requirements for a 4 year Ph.D. program (classes, internship, entire dissertation) and then not finishing? In short it was a hard, bitter pill I was never able to digest or synthesize. I tried to mediate it away, to get Zen about it, then go all fate/wasn't my destiny on it, etc. Tried to forget. But I couldn't. And then by some miracle of good karma - because it seems apparent that I must have a little built up somewhere, that opportunity is on the table again. I am being given the chance to resolve this - to finish it - to complete this dream. So of course I a sitting here procrastinating and blogging to all of you about it.

What this made me realize though is that we are in a different phase of life. The baby phase, that I thought would never end (where they don't sleep ever and your child is total care and for us that meant so much more than with a typical kid) has ended. Ellie is still "total care" but...she eats (not on her own but 99% from a spoon), she goes to school every day, she has autonomous play for short periods, she can sit alone (with support) which is a big change from having to hold her head up so she wouldn't stop breathing. In short, life is better. But busier and taking place more out in the world. It's nice to be back in the world though I must say it was a slow and painful process getting back out into life. Even so it was worth the journey.

Now to find a balance and pace for this next bit of life. I am not sure what it will hold nor am I making any inane predictions that all will be well, considering all has happened, that would just be stupid. There is one thing I learned from this whole thing that pertains to this post and where we are now and it is that the best way to spend your time is being present and appreciating by simply being awake (truly awake) to your own life in the moments it is happening.

We shine through our broken bits

I remember my friend Julie once commenting here that our broken bits are the places that spirit can shine through. I loved that. And when I say broken, I do mean parts of us that are changed forever. I don't mean parts of us that are bad. Ellie in many a physician's and most people's view has a lot of broken bits mainly in her brain. I remember when she was born so early feeling guilty like I had broken my baby. And yet, here she is 8 years later, signing with Santa, rocking out to TMBG and engaging the world. She is powerful in her world and has made my world a place I want to be in all the time. That's powerful and important and something that makes the world a better place.

A student of mine quoted Emerson in response to seeing an Aimee Mullen's Ted talk. I just read it in grading their work and had to pause and reflect - here, out in the blogosphere,because that's how I roll. Emerson said, "Challenges are what make life interesting, overcoming them is what makes life meaningful." Aimee Mullins, in her TED talk on adversity, defined adversity as change we have not yet adapted to.

There seems to be a key in there that is particularly germane to understanding the quality of life I experience raising a child with special needs. Different but meaningful. It's a meaning packed life every day and sometimes in this way, intense. But somehow life wants me to get this message. I saw a movie recently, and of course, Hollywood can glamorize anything, but in the end the guy chooses to love his girl, despite her huge challenges which will become his challenges. He tells her he doesn't want a life where their biggest challenge if feeling guilty over having a cleaning person or driving the right car. Instead, having a life that has real meaning.

So how do we constantly make meaning in our life? For me, when Ellie takes a step, makes a small leap, cries, hugs me, or eats, there is meaning there and we witness it via love, sweat and tears. I am not sure I have any answers but I am struck by these questions: what is a meaningful life? What is a shallow one? Do we oscillate between the two simply based on our level of engagement? How does any of this help us experience love and happiness and the feeling of being connected? How resillient are we?

Picture: Ellie signing Thank You to Santa (who also knows ASL!).

Connecting in a web

This November Ellie will be 8. 8! Though, my brain just reminded me as I wrote this, "Well not really 8, not until February when she was supposed to be born!" Do any of my readers, who are parents of preemies, ever do that kind of self correction? Does it ever go away? ;-)

Just the same she will be 8. She is huge (for Ellie) at 37 pounds and so tall that when I pick her up her legs hang well down past my knees.

It will also be roughly 7 plus years since we moved here. About 6 years since I quit my big corporate company that so kindly moved us out here so that Ellie's shunts could be made right by Dr. Gumnerova at Children's Hospital Boston. Ellie is starting her 5th year at "new school" (not so new any more). And we have lived in our own home for 6 years.

I find myself amazed at all this depth in my life, all these roots. The fact that I have lived in the same house for so long in the same area. Staying here, in children's medicine mecca, is necessitated by Ellie's needs so it's fine. Ellie's needs, as many a mother comes to find, are exactly what I need though not always what I could ever imagine.

The best statistic is that it has been a few years (knock on woods so the tree gods can protect us!) that Ellie has been truly well. I know we had a bad stint for many months this time last year. But that bad stint did not end up in operations, brain damage, or other really scary things like what we have faced before. And though it was bad, because she came out of that healthier (despite the migraines) I still count it as a good year. After all she did get off her seizure meds. She did start eating full force. She did go to first grade. She also, bless her beautiful soul and ever healing brain, start to sleep with some regularity. So many blessings.

I have been struck by the richness of my life and all the beautiful growth coming up from these roots we have inadvertently laid down. We truly didn't mean to. We said, we'll just stay to Ellie's health gets manageable. Then she found "new school" and now we are quite stuck. But by being stuck in a situation where we had to reach out into our environment to survive, we have built something despite ourselves. All these connections are like a beautiful glittering spider's web hung with morning dew in the sunshine.

When we moved here we had no friends. We had people we worked with but didn't know well. We felt very alone. It was a harsh and lonely shift from our very full lives in Los Angeles complete with great friends and colleagues, who are, let's face it, also friends. That's LA for you though. Very different from here. Very different from here was a tome I chanted for the first 5 years here.

Yesterday I walked through my yard, late at night, coming home from work and I noticed how I wasn't afraid. At all. You would never feel that way in LA. I would always felt wary and never lingered between car and door. But last night, I smelled my roses and looked at the moonlight on their white petals and I was startled to realize that I was actually starting to like it here...a bit.

I experienced this same phenomena in Los Angeles - hating it for the first few years and then gradually loving it. See the pattern? Now I realize that there is a survival mechanism in there - adapt or suffer I believe is the technical phrase for it. Even so, seeing it kick in I realized that it's not where you live, but all the people you feel connected to that make a place great to be. The fact that our web of connections has expanded beyond the hospital is only possible because Ellie's brain continues to heal. We are really lucky that Ellie's path has mostly been on an upward trajectory. The fact that our connections have so much depth might, in fact be because Ellie was injured at birth. That has changed everything but not in the way you would typically think.

Celebrating Small Wins!

This Saturday we were planning to take Ellie out to lunch after ballet class. We would be out for several hours. Dave asked me as we were packing Ellie's nap sack, "Do you think we need to bring an extension?"

I had never been asked that before! Being asked that really made my day.

"Yes" I replied, "just in case."

;-)

It's a Mystery

Sometimes I think my blog should be called something like "All the Gory Details" or "A life to make you grateful for yours" or something like that. It's the outside in thing. I have stopped hoping for people outside my world to understand. Those that will, will, and those that won't never will no matter what I write or what they see in pictures. How's that for a cynical view of prejudice? It's true of my students as well. Some are there in the Master's program to learn, some are there just to get a degree. I have trouble with the latter since I love my profession and take a personal approach to teaching such that I still care if they get it or not. That hasn't been driven out of me yet...this is turning into a cynical post and I digress.

What this post is really about -back to the gory details part- is the last few months and the conclusions we have come to. Ellie has been having a very hard time on a few fronts since August. 2009 has been the year to get off meds. Lots of calculated risks and believing in my understanding of my Ellie versus what the medical community has to say. Since January she is off: Cisipride for Reflux, Depakote for Seizures, Protonix for Reflux, and mostly off her Zantac. That's a lot of change.

Since August she has not been sleeping well as you may have heard. We thought it was her brain adjusting off the Depakote- and so it may have been initially. Then when we had the mishap with pharmacy we pulled the protonix - which is a proton pump inhibitor. Then we realized that she was growing out of her g-tube and the bad pool water at her school and possibly some sand from all the beach going in the summer just made it worse. We tried two different sizes of G-tube and nothing worked. Then she started to have these episodes - one in August, two in September, two in October and then a week later in November where she would vomit and then not want to eat and not hold much down and be very sensitive to light and sound and irritable and exhausted. She has missed more school because of this than not. The whole episode would last for 4 days. The last day and a half where she would be doing better but just exhausted from the first two and a half days.

She missed a lot of school. I missed a lot of work. The world keeps moving forward at the most unforgiving pace.

She also turned 7. I need to do her annual montage but that will have to wait until I catch up a little more and until she gets on track.

The day after her birthday on November 10, she vomited, was exhausted, would want to play with her musical toy but the minute she held it would push it away and bury her face in my chest. Holding her didn't help. She didn't want to eat - but unlike a stomach virus - was able to hold down small volumes of rich food- avocado and coconut kefir to be exact. She would vomit up anything else. So the tummy bug / back to school virus was not holding water any more.

Then on Tuesday night she was up all night - screaming. Why we didn't bring her to the hospital at 2am when the worst of it was going on I have no idea. We did check her eyes and they dilated fine and evenly. She wasn't vomiting. She was just in pain. At 8am I brought her to her pediatrician. We realized that this was not a situation we could handle at home anymore. It wasn't some sort of repeated virus and it wasn't her g-tube - which was still in rag order because her stoma for the first time in six years was not healing as it should. But this was something else.

The pediatrician looked in her ears, eyes, throat (making her vomit) and looked concerned when I reported Ellie's weight loss which was roughly 5 pounds since August from so many weeks of these episodes. She had, had a little roll around the waist and some meat on her arms but now she was very thin.

Upon discerning that there was no ear, throat infection, no swollen glands no rashes and all the usual suspects he sent us across the street to Children's ER. In the ER they put in an IV (God bless all Nurses who are good at IV's on an ex-preemie's veins) did a shunt series and a head CT. They are very efficient there and got Ellie in a small dark room right away which was good considering she was still in a lot of pain. I chose not to giver her Tylenol (which I had been giving her when she was having these episodes) because I didn't want to mask any symptoms - because at this point we thought it was her shunt.

They gave her Zofran for nausea and this allowed her to sleep. We saw the neurology team, the neuro surgery team, the pediatric attending. The scans came back showing nothing. Theories were thrown around. The attending pediatrician said Migraines. I called Dave who was at work and asked him to search migraines. He did and found many, many reports of people who were long time users of proton pump inhibitors (prilosec and protonix) developing migraines either after quitting the drug or if they were over 3 hours late in taking their dose.

The problem was that because of Ellie's history and complex shunt system, no one wanted to believe the migraine diagnosis. The young Neurology resident was annoyed at the Neuro Surgery team for writing Ellie off so quickly, he was sure it was intercranial pressure.

They admitted her Wednesday night after 10 hours in the ER. I said I did not want to take her home with all of this going on. It was beyond our ability to help her because we were trying all the things we usually did and she was in pain and not eating and the weight loss had to stop.

They were reluctant to feed her if she was facing a brain surgery, so they kept her on IV fluids with some sugars in them and electrolytes. Dave and I took turns staying with her. She was there to be observed, hydrated, and tested. All her blood tests came back normal. White blood cell count was normal and not elevated which ruled out infection. They did a 24 hour EEG that came back normal - which was excellent because it ruled subliminal seizures. The nutritionist took away my print out of Ellie's diet with all the proportions and exactly what Ellie is given each day and gave it a full analysis. The very cool news is that Ellie, when she isn't sick, is getting 1,700 calories a day, enough fat, vitamins, and protein. Go figure and not any synthetic formula doing any of that. I have to say nutrition has come a long way since we first went to them at Children's in 2003. Then they thought we were nuts to go on whole foods. They had us try every formula in the book and when those formulas made Ellie more sick they said we were administering them incorrectly. It was Linda Scotson who gave me the guts and the know how to transition Ellie on to whole foods.

But this time the nutritionist looked at Ellie's diet and didn't bat an eye. She knew what coconut kefir was, shared the same concerns about Hemp and did the research on that for me. She was awesome. She respected our values. AND she gave me a great resource I have on order about homemade blended formula. She had a few suggestions and then she put in writing her results such that I had medical proof I could give to Ellie's doctors to show them that I wasn't starving her of protein and nutrition because she wasn't on pediasure or meat. By the way turns out that Hemp milk is very low allergen and one of the most bioavailable proteins out there. I put Ellie on it to replace some of her rice milk and she is doing beautifully. It was easily the best experience I have ever had with a nutritionist. And it was very validating. Dave when I showed him her report said, "Oh thank god! That's a relief!" I think now he might actually believe I knew what I was doing...

Our hospital stint did garner these two good findings - the normal EEG and the blessing on Ellie's whole foods, food combined diet. But it still did not answer what the heck was causing Ellie so much pain.

It came down to two camps. The migraine camp and the sub-optimally working shunt camp. The test they wanted to do to prove it was the shunt periodically malfunctioning was to put Ellie on Diamox which would reduce her body's production of Cerebral Spinal Fluid, such that if she was having intercranial pressure her symptoms would stop. The doctors who wanted to do this said there were hardly any side effects to the Diamox, but if you Google it you will see that is wrong. AND what if it isn't her shunt? What if messing with the amount of precious CSF bathing and protecting her brain could make the shunt clog? It was so difficult to get Ellie's shunt system working to begin with (4 surgeries) that I was very leery of this. Dr. Lillianna Gumnerova, who is Ellie's neurosurgeon and an attending at Children's, came down and examined Ellie and looked at all her scans and was very clear that if it was Ellie's shunt her symptoms in between episodes would not totally abate. Malfunctioning shunts just get worse. Since this is where she lives, we were inclined to believe her. She was also the only doctor out of all the others who was able to get Ellie's CSF to drain properly to begin with so she looms large in our world.

The other path was to try a drug called Periactin for migraines. A friend and a mother of one of Ellie's school friends told me about it. Turns out that antihistomines are great for migraines and this one especially. Also, it's a really old drug - tried and tested and the side effects are minimal. Ellie's pediatrician was coming by a few times a day to check on Ellie, which is how concerned he was and he's awesome! He is the only doctor that crossed all the teams. And they listen to him there. He wanted to go the Diamox route and knowing him and trusting him as I do and respecting him too, I asked him about the Periactin and couldn't we give that a try first? It takes a week to kick in, which will be this Sunday. He agreed with the understanding that if she had any symptoms - vomiting or the massive fatigue that we were to bring her straight in. This was the plan when we left on Friday night. So instead of driving to Virginia for Thanksgiving with my family we stayed put. My same friend who recommended the Periactin also invited us over for the holiday and it turns out she could give Martha Stewart and any Iron Chef a run for their money. Definitely one of the best Thanksgiving Day meals ever!

Ellie has seemed a little tired which is one of the two side effects they said she would have. The other is greater appetite. She has both. From Saturday till Wednesday Ellie slept better than she has in months. She is keeping all her food down. She was up Thursday at 4am because she was hungry so I gladly fed her. And she has been playing like there is no tomorrow. It's like she has to catch up. She wanted to sit in her princess couch and play with every toy she owns. She is not quite back to herself yet. She still is slightly irritable and the overhead lights bother her a lot. This Sunday it will be one week so we will see if the symptoms abate with the Periactin at its full effect. If that does not work we will either try the Diamox which still worries me or I will push for an MRI. That's invasive for sure because they have to give her anesthesia and intubate but much less invasive than exploratory shunt surgery and might weigh equally with the Diamox trial...maybe - putting a kid under is hugely hard on the body...ugh. I hate these choices we have to make. In the mean time I am working to feed Ellie as much as she can take. Her little feet even lost weight such that her AFO's are too big and she went down a diaper size. It was a year's worth of weight gain and all the moms of preemies out there know what a bummer that is.

That is how it's all going these days. We are feeding her, watching her, staying close to home and hoping for migraines. How crazy is that? Wishing that it was a migraine.... This whole experience is about picking the lesser of two evils. If it is migraines then hopefully in a few months they will abate if they are from the protonix withdrawal though migraines do run on my side of the family. And for the doctor that said that migraines don't last as long as 48-72 hours - you are so wrong.

All of the above is why I think I may change Ryn Tales to "All the Gory Details" (you never wanted to know).

At the end of the day I am very thankful that Ellie is here and that for now it looks like her shunt may be ok. At least we have a game plan or two and thank god for the wonderful medical community that does disagree in a healthy way and especially thank god for all those doctors that do listen to parents (nutritionists too). Ellie is better because of all of them. I am grateful too for my friend Holly who is so smart and gives me verbal and moral ammunition when I am out to push back when I need to, because it seems like I need to a lot sometimes, much more than I would prefer.

Ellie turned 7 this November 9th. She it still learning and growing and developing and the sweetest little girl. I am thankful I get to be her Mama.

Firsts: Bus, Pie, First Grade

This is Ellie on her first official day of First Grade. She is growing up.

Next two pictures are of the pie Dave made with Ellie last night after we went apple picking. We found this great, small, easily accessible orchard, Dowse Orchard, and Ellie had a great time and we were able to wheel her right up to the trees. She picked most of the apples!

This is the first pie Ellie has ever made. Dave brought our coffee table into the kitchen and put all the ingredients on it ready to go and easily reachable for Ellie. He used the small dry erase to teach her about the ingredients. She used measuring cups and took flour out of the bag and put it into the food processor as well as the butter. We put the food processor on a switch. Ellie kneaded dough, put apples in the pie, shaped the dough round the edges. She did the spices and everything. Dave is so patient and enthusiastic about her. Even when she has moments of averseness to new experiences he never lets that dampen his sense of fun in the doing things with her! As a result, Ellie had a great time. You can see the E in dough on the top of the pie. E for Ellie, what else? She was very excited when Dave showed her the steaming hot pie coming out of the oven! Dave Rocks!

First time on the bus this morning. In the first picture she is pointing to her car.... In the second she is not so happy about going on the lift. Third picture is of Juan and Marge securing Ellie's chair. Fourth picture is Ellie in the wheelchair van...not looking too happy. Fifth picture, Ellie in the bus with a wall of glass and reflection between me and my only child. Did I prepare her enough for this...apparently not. Dave just called me and reported that the Juan and Marge said Ellie did not cry, but she didn't want to play with her toys and was very quiet the whole way to school. When she got there Dave was waiting and she did not give him her usual huge smile and the happy throwing up of her arms at the sight of him. Instead she was quiet....is this going to be an issue for her and her therapist later in life...? I imagine she is feeling somewhat betrayed and processing this change. If this makes her unhappy and she does not adjust the 3.5 hours of extra time a day is just not worth it. But I will give her this week to try it... :-(

Anatomy of a Beach Visit

We have been getting Ellie to the beach a lot this summer. Not "a lot" as in when I was a kid and would walk down to the beach on my own, every day. But a lot for a kid with issues like Ellie and for working parents like us. ;-)

I have been very determined that this summer Ellie was going to have lots of Ellie specific fun because last summer we were in the house for most of it with our crashedcar and Dave's injured finger and the summer before that with my knee surgery gone supersonic. So this summer was going to be different. And it has been.

We have recently discovered Wingaersheek Beach. It's lovely. It's windy. It yielded up this story. We also go to Nantasket Beach which has great ramps and the sand is hard packed which makes it easy to roll Ellie across it in her stroller.

I was with one of our PCA's, Liz, in fact I call her "Power House" as a nickname because of her endless energy and drive to make sure Ellie has a full experience whenever she is helping us out. We are blessed to know her. I learned about Wingaersheek from Kate, who is my expert on accessibility in the area and she told me about the beach wheelchair. Thanks for that Kate! We finally got there and we love it. It is not free or cheap...but worth it!

When Liz and I were hanging outside the tent while Ellie was napping in it another mother came up to me. She was very tan and petite. She was with her husband and children and some extended family members. She asked me about Ellie's tent. I raved about it's awesomeness, because it is awesome, the best money I have ever sent. Then she proceeded to tell me that she also has an eleven year old daughter who was not with them and that they do not take her to the beach anymore because it's too hard because she is too heavy.

That made me very sad for the eleven year old daughter and her family. The mother

admittedly was a very petite woman, her husband was not, her other children looked very fit teenagers as well. I marveled at this. I realized in speaking with her that the beach is a huge hurtle to overcome with a child that can't walk and may be g-tube fed, need to be toileted, and have other serious medical issues. I am writing this post to tell you how we do it because there are a lot of things we have figured out that are worth sharing. There are also some beaches with "hidden" resources for the special needs beach goer.

1. It takes 2 people. There is no getting around this. There is just too much stuff to schlep. But that does not mean the second person can't be a preteen and up child who can stay with your special needs child while you make a run to the car with half the stuff. But we have not figured out a way to do this with only one person.

2. A pop up tent is essential. I got mine here for about $70. It has lasted us 3 years now and is awesome. It's huge. You can fit 2 beach chairs in it. Here are all the things we use it for that allow us to have a great beach experience:

a. Ellie takes her nap in it so we get to stay for the whole day versus just a couple of hours. When you read about how much we schlep, you will appreciate this. Also, and more importantly, many medically involved children fatigue easily and this can set off seizures and lower their immunity, etc. They need their rest. We bring a couple of fleece blankets with us and towels that we put underneath her so she can rest during a day at the beach.

b. We change her diaper there. This allows for privacy, cleanliness, and means we don't need to locate close to any smelly, noisy facilities.

c. We change her into her swim diaper and bathing suit when we get there and between swims and into nice dry soft clothes at the end of the day.

d. We deal with her g-tube dressing and g-tube boluses (meals) there - because we can limit the amount of sand and are protected from wind

e. We protect her from the sun. She has the most beautiful rose petal skin and does not change position as much as a typical kid will so having portable shade is critical.

The tent has made all things possible. Ellie certainly does not spend all her time in the tent but it is there when we have to attend to her medical life, need privacy and shelter from the elements. She loves it too as do all the other kids around. It's just plain fun and way, way EASY to assemble and dissassemble. It takes literally less than 5 minutes to set up and maybe 7 minutes to take down.

3.Accessibility. We have had success thus far with using her Rodeo chair and her old 3 wheeler jogging stroller which is now to small. However, it's really important to note, that Wingaersheek, and possibly other beaches have a beach wheelchair. We didn't ask for it last time we were there and I was planning to ask for it the next time but I am not sure we will get there again this summer. I wanted to take pictures of it for this post. However, a beach wheelchair, is usually big enough for an adult and can be rolled out into the water. Rolling out into the water is very important when at many beaches the tide is out and the water is up to your ankles for miles out. We were planning to either one of use ride in it holding Ellie, probably me - being lighter than Dave, or packing it with towels... If we get up there again I will take pictures. It's important to note that another mother told me that they actually used one with their child via the pack em in there with towels route but that the thing floated when it hit water because their kid was so light. Either way it get's your non-walking child to the water without you having to bear all their weight yourself. At Wingaersheek you have to ask - so ask where you are. Call the town and see if they have considered purchasing such a thing. A fund raiser at your local community club would be money well raised spent on a chair that allowed people who can't walk experience the beach!

4. Duoderm. We use this to completely cover her g-tube. We put it right over the dressing with a small slit right over where her Mic-Key button is. Then we put another small patch over the slit. This protects her g-tube site and belly from sand. That said the last two times we took Ellie to the beach we did not do this and all was well. Maybe she is big enough to handle tiny grains of sand that might get in her belly. However, we change her dressing after each swim and I have not seen much sand there at all. But if you are worried about it, as we were, Duoderm rocks. It's easy on the skin and totally keeps out the sand.

5. First Years Reclining Booster Seat. I learned about this seat from Billie, who is truly the master of figuring out positioning equipment. This seat cost me $24 at Target. They sell them at Baby's R Us too I believe and definitely on Amazon. Again money well, well spent. We take the liner off - which is simple - and bring it to the beach and place it at the water's edge so Ellie can play there and by the tent so she can play in the soft sand and in the tent if she wants to play there. We use it as well at restaurants and dissassemble it and put it in our cases when we travel. I will be very sad when she grows out of it. I think it goes up to 50 pounds so we have a ways to go.

6. Life jacket. There is a special needs life jacket that the kids at Ellie's school use that costs roughly $300. We don't have one. We need one. But for now I got Ellie a bathing suit at our local sports store that has blow up floats that go right into the suite around the belly and back. These help tremendously with holding her in the water. It is the suit she is wearing in the pics, though the blow up bits aren't in it then. They are easy to put in though and don't cause her any discomfort because they have some give and are not hard like some I have seen.

7. Cooler. We bring a cooler with our food and Ellie's food and water and meds.

8. Camera to capture all the fun you are going to have.

9. Book. We actually get to chill when Ellie takes her nap. That is an amazing thing.

10. Molded Ear Plug. Vicki, the amazing audiologist at Ellie's school made her a customized ear plug for her left year because Ellie has a tube in that ear. You don't want water in an ear with a tube.

To be honest, with my recent back issues, I am and always have been worried about what I will do when Ellie get's heavier than I can handle. The fighter in me just thinks I will hire some bigger person to hang out with us and help me lift her. I have no doubt I will figure it out. I have a lot of other blogging Mamas who have gone ahead of me on this one.

I truly never want to be in the position of going to the beach without my little mermaid girl who absolutely loves the ocean. She is so relaxed there and happy and content and absolutely loves the feeling of being in the water. So far she knows how to float and kick off things. She is all smiles and laughs. I love the ocean myself and I especially love sharing it with Ellie.

Ellie's first T-Ball Game

Last Sunday we took Ellie to her first T-Ball game, which was on Mother's Day. And it was the best Mother's Day present ever!!

Thanks to M. S. and the others like her who make this possible.  Ellie's team is called the "Red Sox" go figure. The high schoolers you see wearing the "Buddy" shirts take the kids around. We got to varsity soft ballers who by the end of the hour had learned some sign language and showed Ellie how to throw the ball, bat off the T (hence T-ball - thank God right? was really worried about someone pitching the ball at Ellie and was very relieve that is NOT how it works), and running the bases. In some ways it was a difficult hour. Ellie was scared and everything was new. There were tears and protests. Dave and I were allowed to jet out onto the field to give her support and explain about the baseball diamond and count the bases. After 50 minutes and she hit the ball off the T she started to enjoy herself. She especially loved the fist tap with all the other players at the end.  After the game we all went to dinner and Ellie tried chocolate cake - that is what is on her lips in the last pic. 

I learned a lot that day. For one, Ellie did NOT like the hat. I wonder if she is a closet Yankees fan. Either way, I got her a pink Red Sox hat today and when I showed it to her she smiled. I also got her a pink and purple leather sparkly glove - which she seemed to like too. I also learned that there are ways to get out in the world if you look hard enough. Thanks to Holly for telling me about this. Isn't it always the other parents that you learn the most from? It has been that way for me since having Ellie. 

We are going to go every Sunday. I am so happy to get to have this experience. In some ways I often feel very isolated from life. Marie, the woman who runs it and conceived it and started it, has opened up the world for us in a way that is extraordinary. Thank God for people like her and everyone who helps her. We hope that Ellie will get more comfortable and that we can sit back and cheer her on with the other parents. Having never had that experience, I am looking forward to it!

Happy Mother's Day Everyone!

My beautiful friend Julie, also known as Queen of the Meadow, sent me this endearing, funny video with a heartfelt feminist twist to wish me a Happy Mother's Day.

Thanks Julie - coming from you that means a great deal because you are one of the best most ingenious, loving mom's I know! You made my day and you made me laugh which is always good for the soul.

Miss you!

I have to say I have been fortunate to have had chance to learn from some amazing moms. Thanks for all you have taught me and all the support you have given me Holly, April, Kate, Julie, Jacqui, Billie, Linda Scotson, and Sue and all the many mothers who chime in on  this blog. Thanks for keeping me honest and keeping it real.  Hope you all have a great Mother's day!

Moments of Greatness

Today I heard a story about a man who has rescued people from random plane crashes three times at great risk to himself. He is not a fire fighter but he is unique. One unique thing is that he leaped in where others would have held back. He actually spotted a plane that was going to crash and though he was far away, he ran as hard as he could to get to the crash sight. In another instance he was told by emergency workers not to go in the house the plane crashed into, but he went anyway to save his relative. He has done this three times - braved the fiery explosive wreckage and hauled multiple people out of it with no protective gear and saved them and lived to tell the tale. It's a truly amazing story of bravery and someone who selflessly helped others at great risk when the moment presented itself. It got me thinking about whether I was rising to the challenge of being great in every day opportunities.

Each one of us, no matter what our situation, has the opportunity to be great every day throughout our day. The question is, will we recognize those moments? Sometimes it may be hard to recognize that a small act of kindness is just as great and can be as long lasting in it's effects as an act of heroism.

I think being a parent offers many of these moments. It's just a matter of paying attention to make sure you don't miss the chance to impart some small kindness on your child that they will hold with them like a tiny seed that grows into self confidence or inner strength or happiness. Ellie often alerts me to when we have had such moments. We will be playing and I will say something to her or do something and she will stop playing and look at me with this serious expression and then turn her face into my chest and give me a hug. She never says why but she just looks really happy. Sometimes she will do it twice. Then she goes back to playing. Those are the most precious moments in the world and make my heart explode.

I think if we have the heart to care and the eyes to see you can be great and not even realize it, not even try. Because it's not about getting something back or seeking glory or fame. It just becomes a way of being that you don't even think about. It is an attitude toward life that you adopt. For me, with Ellie, it's easy. To have this same sort of regard for everyone is the challenge. And for me to have it for people I don't like and have trouble respecting it is the most difficult. People who have hurt me or that I have found incompetent and in their incompetence to have injured others in some way, they are the ones I have the hardest time holding with this attitude. But even they deserve my regard and willingness to treat them objectively which is a different thing to being nice. This is not about letting people walk all over you, it's more about being detached. I will have such an opportunity to practice this attitude coming up in May at Ellie's IEP.

If people everywhere could overcome their fear, negative judgments, ignorance and blindness to just wake up a bit, the world would be a better place. This life with Ellie has really helped me be less self centered and have more of this attitude. When I say being Ellie's mom has made me a better person, like I hear many parents of children with disability say of the experience, it is in this sense that it is most profound. I am grateful because it's a not a bad way to be.

Audaciously Dissing the GNS and Java Boycott Day:...whatever

Quick update on all things Ryn Tales: (in order of importance)

Ellie is kicking butt on ALL dimensions and it has been such a fun couple of weeks with her. Mind you she is always a blast but the last two weeks have been really excellent because of the reasons below:

1. Her oral aversion is GREATLY improved. This is an aversion she has had since the NICU which she overcame enough to eat when she was 3 but then when the seizures kicked in at age four she reverted back to being very aversive. Incidentally she developed seizures after 4 traumatic months of being integrated into the public school down the road. I can't help but think that is all linked. The upshot of this regression was that she would no longer even try to speak or mimic us or let us mimic the sounds she made and even more devastating, she refused to eat by mouth full stop. So that is where we are coming back from since May of 2006. So here we are on the verge of May 2008 and her carers are commenting that she is going to eat. I always have to add, "AGAIN, she used to eat you know!" Because if I don't keep telling myself and everyone else it feels like that will be lost forever - the fact that she ate - and along with it my hope and belief that she will eat again.

So what has she been doing that leads me to believe she is overcoming all of this:

a) on Saturday night when we were showing Dada how Ellie can brush her teeth - she not only let me in her mouth and not by me insisting but by her choosing for me to brush her back teeth (which is incredible for a kid with dysphasia and oral aversiveness and hypotonia that makes holding her head straight for any period of time difficult). I did so and she grimaced but did not gag (it is also amazing that her gag reflex has moved that far back because it used to be at the tip of her tongue) and then....she asked me to brush her teeth 3 more times. Not just a portion of them, but all of them. Being a somewhat disciplined maybe slightly obsessive toothbrusher myself - I totally get that! Sooo go Ellie!!!
b) She will play with food now, sometimes, especially if other kids are.
c) She will watch others eat. She used to get upset or not look or try to go away from eating folks when she decided food was suddenly not her thing way back in May of 06'
d) Saturday when Dave put a little bit of Ranchero (a yummy but disgusting nutritionally speaking puff like a cheese puff only with BBQ flavor (obviously an Irish creation) on her lips she pursed her lips and tasted it and liked it - very cute - very Irish. It would not be outside her gene pool to decide she will only eat crisps until she is 20 or 30...well better leave that alone for now.
e) She will practice sounds with us -right now we are working on M.
It may take a couple of years to get her speaking but in terms of the big picture - who the heck cares?! In two years she will only be 7 and if she were speaking by then I would be so incredibly delighted. When you're 5 you have some time to work on things.

2) Gross Motor and Physical Energy:
Ellie's physical energy seems greatly increased. She is less tired and wants to move all the time now. She wants to roll and will also pick to do her Pony. She hardly every picked it before. The other amazing thing about her in the Pony is that on her own with no coaxing she will take regular steps. She used to push off with both feet or just use the right leg and foot with her left dragging along. But now she is using both in a regular walking motion consistently. Hurray for Ellie!

And rolling - sheesh! the kid is fast and wants to roll up and down our ABC rug 10 to 20 times which is allot for Ellie. Maybe more. It's great to see her so energetic and not have everyone always commenting how tired she looks.

3) SLEEP UPDATE: This one is definitely throwing caution to the winds so in light of that I will bold all the really important parts so they really stand out:

Ellie is typically sleeping through 2 to 3 nights in a row and then will be up the third or fourth night. I have actually been tracking this closely to try to understand why and have realized that if she doesn't get enough calories and the difference can be as little as 20 she will wake. If she is cold she will wake so we have been keeping the house warmer at night in case she kicks her covers off. If she gets her meds too late she will wake. If she eats too late she will reflux in the night and wake. So at least I can try to mitigate a visit from the GNS by watching all these things. Ellie's system is very sensitive so tracking all this is helpful because though she is strong minded she is also a delicate flower.


4) Java Boycott:
The day after my last update I had no coffee and only two cups of caffeinated tea. The next day I had only one cup of caffeinated tea. And today I had none as I have built up my stock of decaf tea BUT I did go have breakfast at Victor's and my plan to head off my thoughtful waitress before she wasted a cup was thwarted in the doorway of the diner by a very pushy woman looking for directions. I gave her directions but only after she had vented all her being lost frustration on me first and when I walked back into the diner there in my favorite spot to sit and practice signing was a small OJ and a steaming cup of Jo. I couldn't tell her, gee don't want that, but thanks! That really is the nicest thing someone has done for me today! So I drank a quarter of it. So barring any pushy lost people hopefully I will be able to tell her next time before she pours. sigh. When people are really nice like that you acknowledge their small kindnesses.

Overall, the no coffee thing is actually getting much easier. I feel less tired, have to pee less, and my body feels less tense. I have been aiming to exercise 5 days per week to increase my energy that way instead of with coffee and it seems to be working.

There's probably more and I have some really cute pictures and videos of Ellie to share but that will have to be next post.