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Sunday, July 06, 2014

Life at 11. Purposeful speech and other news.

Paper Jamz Guitar
Ellie is firmly into the pre-teen zone of consciousness. She introduces us to popular music on You Tube she finds all on her own. She thinks Katie Perry's Roar is pretty great (I agree) and she loves Capital Cities song Safe and Sound. Kissing You by Miranda Cosgrove is also a huge hit.  She still loves to dance with her Fijits and all her toys blaring all over the house. She calls this a Jam Session and she means it. She particularly loves this Paper Jamz guitar as well. All these toys offer a big return for her big effort in motor planning to play with them.  She is so patient with herself and determined when she is manipulating images on the iPad for example. Sometimes it takes her 10 or more tries to get what she wants but she patiently keeps trying employing a laser like focus in her attempts. It's impressive. I need to cultivate that type of patience in myself about my own efforts to learn about and traverse the world.
Ellie at 11 and a half.

She is also still (knock on wood) G-tube free.

I have to pause whenever I think about it because it has been such a huge life change. We can go in ponds now….! Ponds! We live right next to one so that is significant. Though, it's July 6 and we have yet to take her. We are still in our old way of life in our minds in many ways.  I think we are a bit shell shocked. You get into a certain mode of living and stick to that pattern.  It might just be a bit of fatigue too BUT my goal is to take her to our local neighborhood pond this year and just try it. The beach there may not have an accessible path down to the water like the one we saw in Provincetown so that is an obstacle but still - it's worth a look, right?  I need to take a leaf out of Ellie's book and keep trying things until we find the right solution.

She loves swimming and we hardly ever take her. I am put to shame by my friend's who take their quadriplegic daughter a few times per week. We have to get a stander up and running too.  Always so many things to get up an running and it's overwhelming most of the time with both Dave and I working full time.

Provincetown Beach Accessible Path
Ellie is all legs and arms these days as you can see in this picture. Growing, growing, growing, bones winning the race against muscles and ligaments. Which means Botox and casting and other interventions to ensure she doesn't end up a pretzel. Spinal orthosis (body jacket) and ankle, foot orthotics (AFO) are the measure of the day. Her network chiropractic appointments have kept her spinal curvature at bay and have also loosened up her ankles. Ellie has increasingly higher tone the lower you go down on her body and her poor feet and ankles are hit the hardest. I can't say enough good things about how Dr. Jennifer Lees has helped us. I wrote, here, about the initial scare with a huge curve in Ellie's spine that has since resolved. I still take Ellie once a week to Dr. Lees and it's worth every cent and every bit of time it takes to do so.  Thank God for non invasive help!

Ellie also loves her new school. They are rigorous in terms of schedule and academics and making the environment as much like a regular public school as possible. Seeing how much support they give their teachers I am pained for Ellie's old school and what they could achieve if they considered modernizing their approach.  I'm grateful that I switched her though, every day. This year along with having regular science class, language arts and math every day, Ellie also got exposed to industrial arts (shop) and cooking class and a very robust after school program where Ellie got to meet some of the older kids in an iPad class (her favorite), a game playing class (checkers, etc.), and a movement and music class.  They also have a very competitive but inclusive softball program on their AstroTurf pitch. The pitch is one of the only ones in the country at a special needs elementary school….(What's up with that country?!)


Ellie on the AstroTurf pitch with her trophy.
This summer for the first time I am taking her to day camp….there actually is one that provides a one to one aid and can manage Ellie's total care needs. We will see how that goes but I am hoping it offers another way for us to bring the world to Ellie.

The most exciting thing that happened over the last few days is that Ellie started interjecting (with her voice output device) into the conversation - with sentences that were spot on in terms of being part of the conversation.  For example, Dave and I have started watching movies with Ellie on her iPad before bed. We use the iPad because it's a small enough screen so that Ellie can watch the movie without fatiguing her eyes.  It's also a big enough screen such that all the beauty of the movies are not lost.

Ellie as Bat Girl for Halloween
We were trying to figure out how to use Amazon's Instant Video and upload it, etc. on the iPad. During the first attempt, Ellie who was watching intently interjected, "That's not working."  and she was right!  She did it again when we were discussing plans for the day using another short but totally appropriate sentence to join in.  And she did it so fast too in terms of her picking the right options on her Dynavox Maestro - so fast.  It makes me think that she could communicate a whole lot more if she was interested.  Her new school is all about use of technology and it shows but I also think her brain is growing and evolving and she is coming out
of her shell a little more. Her being able to interject into our conversations in a more sophisticated way gives me hope of her being able to, eventually, communicate with people that don't know her well.

Don't get me wrong, Ellie has always been able to make herself heard with us. BUT really only in things revolving around her care, her needs and in a very truncated fashion. For example the tilt of her head to indicate that she wanted to be pushed in that direction. So she does and has always communicated. But for her to say, "That's not working" and be right and right in there with what is going on is very validating in terms of our belief in her intelligence.

Life is going by pretty fast these days. I understand now why when I was a kid I preferred other kids or the grandparent set. The middle of life when you are supporting a family, a home and a career often feels like an unending ride on a fast roller coaster.  It's a lot. Blogging about it is a way to press pause and reflect on the things that matter and make all that hard work worthwhile.
Hope you are having a great summer!

Friday, January 31, 2014

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.

Saturday, September 21, 2013

Abilities Expo Boston! 9/20-22

Amazing stuff happening here at the Abilities Expo in Boston. They have these expos in major cities all across the US. Here is the link: http://www.abilitiesexpo.com/boston/ And of course we are interested in seeing this. Wheelchair Dancing!

Sunday, August 04, 2013

*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.


Wednesday, July 31, 2013

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.

Sunday, July 14, 2013

Going Vegan = A Feminist Act...Who Knew?

By Ann Taintor
Who knew that me becoming a vegan was actually challenging societal gender norms?  I am bemused by the responses of some younger women and a few older women to me when they heard I have become vegan. They all said similar things along the lines of, "What is your husband going to eat?"  The body language that accompanies this question is a look of concern which leaves me wondering if what they are really asking is, "Will you have time to cook two meals?" And "Are you sure that's really wise in terms of caring for your family and keeping your husband happy?"

Receiving these questions just floored me - is it not 2013 versus 1813?


By Ann Taintor
My mother decided to be vegetarian when I was about 12 (at the same time I read Diet for a Small Planet and decided to become a vegan). What this meant for her however was cooking one meal for she and I and another meal for my father and two sisters. As you can guess - this was a lot of extra work. The jeering and criticisms of her alternative diet from the carnivores did not make for a harmonious home either. So it was short lived for her but not for me. I was a vegan until my mid twenties when I had a iron deficiency and then went vegetarian.  When Ellie was born as I have written about, I started eating meat again and did so until this January 2013.  To those of you who may have thought "See!" when I shared the iron deficiency - remember that I didn't say I was a very good vegan.  There were not the resources online (actually there was no  online other than email) available today.  And at that time I was a very, very poor artist living in Western Mass trying to figure out my life.  It was often a choice between should I buy this apple or this tube of paint? But that's another story.

Zooming back to the matter at hand, I am grateful to have found a mate who had no interest in a traditional, feminine mystique type, of marriage set up, where, as in the houses we were both raised in, the woman does all the cooking and cleaning and everyone sits down for meals together at the same time every evening. My experience with that growing up was to see how stressful all that cooking was on my mother. As a result she often over cooked the food and meals were a source of tension which only fed the fire of our family dysfunction.

Stemming from this, I never, ever wanted to have us all sit down at 5pm and have dinner. Ever. I rather not be married if this was the expectation. In fact, getting married at all was a stretch for me. I only did it to make sure Ellie was protected in all the ways children of married people are.  That, and to be totally truthful, I got tired of them stopping me in the emergency room as Ellie and Dave (she has his last name) would get ushered in and because I had a different last name they would stop me and say ask, "Who are you?" My exasperated reply was always, "I'm the mother!!!".  Seconds count when your kid has hydrocephalus - for crying out loud.  That had to end.

Orange Cashew Cream Dressing that Dave made
 when I was away on business.
Atop those strong sentiments, things with Ellie have also taken a non traditional path that meant differences in eating times etc. She only eats purees and does so about 5 times per day and before that was eating around the clock via drip feeds and had/has oral aversions.  So though we do sit down together regularly as a family usually on weekends, there is a lot of working with Ellie one to one around food and making it safe.  Additionally, Dave is not your traditional guy in that growing up he regularly cooked for his younger siblings.  He had a working mother and being the oldest he understood how hard she worked for both her job and the family - he didn't take it for granted.  As a result of all that cooking as a teenager, he knows how to fend for himself and others in the kitchen very well and did so before we met. Lucky me.

For the record - I do not cook meals every day for anyone but Ellie.  Dave and I cook for each other when we are already making something for ourselves.   We coordinate and both cook larger dishes like a soup or a casserole but again not every day.  He more often then not will make me dinner because he eats it regularly, whereas I do not. And he makes the best big salads that are filled with nuts and tons of veg and hummus for example.  I have been into making new vegan concoctions like lentil and rice chard rolls with cashew cream and smothered in tomato sauce and tons of green tonics and juices and cold soups - basically going 80% raw and 20% cooked. And he eats what I make when he wants and vice versa. But it's casual and 50/50.   Other than Ellie's diet which I made up all the recipes for and watch over very closely, we both do the cooking.

To answer the question directly, "What does your husband think (of me going vegan)", here is a list of his responses:
Life Alive inspired Buddha Bowl that Dave made

  • He bought us a half farm share at the local organic farm
  • He and Ellie planted a ton of seedlings that he purchased the seeds for by mail order and all the soil and pots etc., that he waters and tends to daily with Ellie when she can be torn away from her fijits who are a little more exciting than seedlings - though when they first popped out of the soil she was very excited! ;-)
  • He drinks green juices with me every day of his own volition
  • He solicits the choice and regularly encourages us to go to vegan restaurants.
  • He cut back on eating so much meat and increased his veggie intake and has lost 25 pounds doing so (that's been a really great side effect of me going vegan)
  • One night I came in and he was about to watch Vegecate on Netflix and asked me to join him. Since watching that he is researching how to get protein and iron out of plant based foods.

In sum, his reaction has been very supportive and he is still reacting in a way that is making me very happy in that he sees the positive changes in me and wants to come along down this path - in his own way but near enough to me just the same. He has lost weight and is feeling better. There is a lightness between us.  So that is what he thinks of it and how he responded to me going vegan for the 2013 record.

I think there are all different ways to structure a life and a marriage. The more creativity that is worked into that structuring the more room for individual expression and bliss. I am always alarmed and saddened to see that the legacy of hundreds of years of gender inequality is still with us. I lecture on this topic in my graduate courses so I know the stats. But in this question, "What is your husband going to eat?" there is found all that inequality as a societal norm - like DNA coding that seems very hard to change.

Wednesday, June 26, 2013

Irish Firsts or 3 Beautiful Firsts


1. Ellie at Nomad's
1.  Figuring out that wheelchair vans with ramps and tie downs are available - and easily so  - in Dublin, Ireland. Result: no more extra lifting of Ellie and schlepping of car seats! Woot and dah...

2.  First time finding the beach wheelchair and using it!  We were all jet lagged from returning from Ireland last Friday. So on Sunday morning, being up very early we got to the beach before 9am (it's an hour and 30 minutes away so that is saying something for us).  As a result there was a beach wheelchair available. AND the head supervisor of the beach was insistent we use it (when she saw us gearing up to drag Ellie in her wheelchair across the beach).  She gave me her number to call her next time so even if one was not there they would find one.   Ellie did great too. I was very worried about her stability because it only had a waist belt and no shoulder straps and the beach is rough going. But she sat criss cross style and was very stable.  Big victory for us and our backs and Ellie. We used it to get her to the water as well.

2. Amazing salad from Rustic Stone
3.  Overnight away from Ellie.  And guess what? Everyone was completely fine at the end of the day and next day. It was really, really nice to have time with Dave and break that barrier of our fear of leaving her.  That said, we left her with the NICU nurse who cares for Ellie when she's not doing her day job so Ellie was in great hands and loved having a girls night out away from mom and dad.

It's been a good couple of weeks. 

Pictures from the top to bottom:

1. Ellie in Nomad's just off Grafton Street in Dublin's City Center. The food is spectacular (they even had an amazing coconut Thai tofu entrĂ©e ) and the owner is lovely and made us feel right at home.
3. Dave and I on our overnight away.
2. The most amazing salad we had at Rustic Stone right of George's street. Such an amazing and wonderful food experience. Highly recommend both restaurants. 
Dublin rocks some amazing food. I was even able to get fresh squeezed green juice for Ellie at Cornucopia - which is a block up from Grafton street if you take a left after Brown Thomas.  The vegan food is great there too and the people are lovely. We ate there several times. 
3. Dave and I at our friend Anto's wedding on our overnight. 
4. The Harry Potter like and wonderful library at Trinity College. I highly recommend taking the tour which is very interesting and fun.  
5. Ellie and Dave at Bewley's which has the best atmosphere and cherry buns and cappuccinos. 
4. Library at Trinity
4. Library at Trinity College Dublin





5. Ellie and Dave at Bewley's - yum.

Friday, May 10, 2013

Ryn-newal

In January of this year I set out to transform my life.  I had been feeling tired every morning, Ellie wasn't sleeping at all...again, and I was just sick and tired of being tired and in pain all the time from a variety of things namely osteoarthritis to start.  And I am not even that old to have such a thing which incidentally has my doctors also scratching their heads.   I was also still so wound up from the previous months of finishing my dissertation and hosting a huge family party and dealing with a promotion which brought with it a lot of extra work.  No rest for the weary and I was weary.

Last summer I started exercising and that helped. I road my bike all summer which was a lovely thing. Though I was limited on how much I could ride by time but also Boston traffic which is a killer. The good people have deemed themselves "massholes" and they live up to this reputation and sadly as a result many cyclists are killed each year. So during peak traffic hours I don't ride. Then the bad weather hit...

However, from my bike racing days I had a perfectly good wind trainer collecting dust in my attic. I pulled it out and have been riding away, nearly every day regardless of weather or traffic. Now that it's warm I can do both inside or outside rides but ride every day.

This was a good start. Then I decided to give up meat, dairy, fish, sugar, caffeine, white flour, and gluten...yep it's a big list.   I was inspired by kriscarr.com and her books. Her book Crazy Sexy Diet contains a great deal of information I had heard over the years in various places but not so well explained. It's worth the read. 

As a result I pulled out a champion juicer that Dave had found at a low, low price on Ebay in 2003 that was collecting dust and began to use it every day to make versions of Kris' Make Juice Not War juice. I started drinking 16 to 32 ounces per day as well as blending up green drinks that were originally inspired by whole foods fresh smoothies which now are not nearly as tasty as what I blend myself. Instead of high glycemic fruits I blend up spinach and green apple and cucumber, cilantro and hemp seeds with water and fresh lemon. Yum.  


By doing all of this I lost 18 pounds and no longer wake up in the middle of the night from aching joints.  (Gluten has been linked to arthritis.)  The diet Kris proposes is a low inflammation diet - which is also really important for Ellie. I realized that some of her food is really high in inflammatory food so I changed that. For example I make her a dish called Green Goodness that was avocado, apple sauce, and strawberry coconut yogurt. Very high in sugar.  So I changed it to avocado, cucumber, mint and fresh pear and sometimes some plain coconut yogurt. And she eats it and loves it. I also add in hemp seeds. 

Instead of roasting her sweet potatoes for her puree I cook them at a low temperature so that they don't caramelize (which increases the sugar content). I also started her on 16 ounces of the green juice and got her off dairy.  As a result her nose is not constantly running and she has been sleeping through the night - nearly every night since she started getting the green juice. For those of you who have been following this blog for awhile - you know that is saying something!

I also have had allergies for years starting about 10 years ago that have kept me up hacking away and wiping my nose while I am trying to present.  Not fun. Cutting out dairy has changed all that. And I love cheese so it had to take something big and not having any allergic reaction to the tree pollen etc. is a huge change in my world for the better. 

I have also been meditating and practicing being more mindful.  All of this has turned out to be a way to transform my inner life and in so doing my outer life. I am 18 pounds lighter, way more rested because Ellie is sleeping and I am making a point to make sleep a priority, and so much happier.  I feel like I am finally decompressing from 10 years of really hard times in some ways (good times too).  But let's be honest, when you have a baby early and almost both die in the process then proceed through 134 days in the NICU and through multiple surgeries, illnesses, seizures, dealing with back issues of your own, having the expense of transforming your home to be accessible, and on and on and on - there's a lot to decompress from. And stuff is still going on that is really challenging to do with Cerebral Palsy as Ellie grows, e.g., her muscles and bones not keeping up with her growth, scoliosis, hip displasia, and on and on. 


So how do you get renewal out of that?  From the inside out in my case. I thought - I can't control her not sleeping or the stress of the world but I can control what goes into my mouth and what I think. The first part of that is way easier by the way.  Choices for eating are much more explicit and easy to manage than choices for what I think. But I am working on transforming both to be more positive, hopeful, proactive, abundant and most of all nourishing (for body and soul). And it's working. 

Often preemie blogs end by the time the kid is 8 or so.  I understand that.  But I want to keep going. Ellie's blog has been a way to keep time with myself, reach out to others in hopefully a helpful way, make connections that have taught me loads. There's a lot to report on, on this end.  

I wanted to share some things that have helped.

Pictures:
1. One green juice and one carrot, ginger, beet root juice
2. Ellie on Easter morning finding gifts from the Easter Bunny. Fijit ears to replace the ones that someone pulled out....very exciting indeed!

Friday, October 05, 2012

Peachy Applesauce or Yes, I Would Peel a Boiling Hot Peach for You, My Love

Giving Ellie whole foods is a passion and an emotional precedent of mine.  It's one of the things I can do to help her body heal and be healthy. She has had a long journey to eating filled with starts and stops.  She has been on whole foods since she was 18 months - which took some doing as I have written about in earlier posts.  She has not progressed beyond purees.  However, in typical special needs, preemie parent style, I say, "I'll take it!"  After all, eating purees by mouth is better than no eating by mouth at all.  Additionally, a great many of her food sensitivities have abated and she is able to handle more fat and variety.

As such, I happily face the challenge of making her more, and more interesting purees. I know some of you out there may be thinking - why don't I just puree whatever it is we are eating. I have seen parents do that - the most interesting case where they were feeding their kid pureed bear claws (a calorie rich pastry), which resulted in huge blood sugar spikes and other unpleasant sequelae....not good.  Also, some things when you puree them are gross. I recently did it with a meatball and that was fine. Ellie has had Italian wedding soup pureed and that was fine too - but she eats things like that rarely and in small doses because of her reflux that is still a force in all our lives.  Simple foods that have great flavor and don't upset her stomach are the order of the day.  Like most working moms convenience is a necessity and the whole process took me about an hour.  However, I think the time I spent making her applesauce was well worth it.

We have been buying jars, and jars, and jars of applesauce for Ellie for years now. It was one of the only off the shelf foods she could eat - that and baby cereal and eventually coconut yogurt - so you see it's been a very short list.  However, two years ago I got a food mill because of the power outages from the hurricanes.  It's apple picking season in New England and a coworker talked about how she made applesauce. It sounded easy.  Though as a kid I used to churn applesauce out by the gallon using a food mill - I had forgotten all the other steps. Store bought applesauce is OK but its got a taste I just can't attribute to the ingredients listed on the jar - even the organic stuff. Store bought applesauce can also run you $5 for a small glass jar.

In short it was time to remember/relearn how to make homemade applesauce. The good news is, it's really easy. 

The equipment you need is a food mill, a big soup pot, a big bowl, and a slotted spoon.

Here is the recipe for Peachy Applesauce:

Ingredients:
Peaches
Apples
(I used 2/3 apples and 1/3 peaches)
Water

Step 1: Wash the apples then cut out their stems and quarter them. Put them in a big pot with water 3/4s of the way to the top.  Bring to a boil and then simmer until apples are soft - about 20 minutes.
Step 2: While the apples are simmering - put the whole washed peaches into a separate pot of boiling water. After 15 - 20 minutes extract the peaches and put them in a bowl.
Step 3: Gingerly with your fingers peel off the peach skins.
Step 4: Put peeled and pitted peaches and all the apple pieces in batches through the food mill that is positioned over a big bowl.

Step 5: Churn away.

Step 6: Eat lovely warm, potassium rich peachy applesauce. 

The peaches I used got so sweet and syrupy all on their own I didn't need to add any sugar. When I made applesauce with strawberries (cut off the stems of the berries before you throw them in with the simmering apples) I added some sugar to cut the tartness.

Ellie is enjoying the homemade stuff! 

I filled up one of the empty jars that I had been paying $5+ dollars for and there was still a vat of applesauce left over. I could calculate ounces and figure out precisely how much I saved buying apples at the farm and then making my own sauce - but suffice to say - I am saving a good bit of money and that taste I can't place with the store bought stuff is not present. Best of all, I have improved the flavor of Ellie's food. The flavor of food is what keeps her interested in eating it - which is a good thing.

Picture from top to bottom:
1. Boiled peaches cooling a little before peeling
2. The food mill filled with peach pieces
3. The big bowl of peachy applesauce
4. A smaller portion that Ellie consumed happily.

Wednesday, October 03, 2012

Ellie's first poem

Dave just reminded me about this.  He was reading Tug and Teeny - a really cute book with Ellie and in the book Teeny writes a poem and even gets critique from her forest friends.  After reading it Ellie wanted to write a poem.  This is what she wrote.  I call it:

Ode to My Fijits

"Sage dances,
Sarafina tells jokes,
Lola is purple,
Logan sings,
Fijits are Fun!
Ahoy thar!"


Needless to say we were very proud. And Ellie was very proud to tell me her poem and we read it several times over the course of a couple of days.  Today she agreed we should send it into school to show her teachers.  When she wrote it on Saturday she wasn't ready to share it with anyone else. But since then she has decided it's ok to release it to the world - it's ready - which is why I get to share it with you.

Ellie loves the Fijits (and still loves the lingo of pirates) toys themselves and all the youtube videos of them. If you buy them, get them from Toys-R-Us because they are really more expensive on Amazon.  AND Toys-R-Us offers a life time insurance policy if they break you just bring it in and they will replace it.  The policy costs a one time fee of $8 which I know sounds like a lot but it covers all Fijits you buy.  Since they cost $50 and they do break - this is a good deal. We are on our third version of Lola (who is actually their Willa - but Ellie renamed her) and third Logan and second of the other two.  Also, get some rechargeable batteries. The AA batteries burn out after about 48 hours and it takes 5 of them.  Since getting the rechargeables we have reduced our footprint and saved considerably. Let's Fijit, Fijit!

This is a link to one of Ellie's favorite Fijit videos here!



Tuesday, October 02, 2012

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)

Wednesday, June 13, 2012

Wednesday, May 02, 2012

Ryn-terrupted

I passed my dissertation defense today  - May 1st, 2012.  I did it! I earned my PhD. ;-)
Thanks to everyone for their support and kindness about this.  It was a looooonnnnnggg haul.   So D-Day turned into May Day but no may-day needed! ;-)

I am a bit punchy at the moment as I didn't really sleep before the defense and I am on Boston time in Los Angeles where my school is.   Ellie made me a card to take with me.  She used her voice to tell her teacher what to write.  Here is what she wrote, "Hi Mommy, I love you. Wow!  Love Ellie"

I love it, "Wow! "   As usual Ellie get's it totally right.  She's such a great kid.

Now that this burden that I have lived with for so long is gone I can move forward. The huge thorn in my side is gone.  This was a big dream for me - I can't quite wrap my head around it that I did it?!  The defense went nothing like I thought it would be either. I was prepared for really hard technical questions about the statistics or the research design, etc. But it was fine and fun and and my committee spent almost one hour talking to me about how I could publish and venues to present the results. Great coaching session. Having the degree opens up a lot of opportunities - which is a really good thing considering how I will have to work until I die because I want to make sure Ellie is taken care of.

But right now I just want to go to sleep because I am so tired after the last few months of being up until 2am most days working on my dissertation.  Which is now done?! It's amazing. ;-)


Sunday, April 01, 2012

End Game

It's been a little while since I have been here. This is a quick update. Ellie is not sleeping but growing fast, fast, fast. Her room is built but we are fighting with insurance to get a lift. That part of it all is awful and draining. Ellie says she likes her new room but we have also been struggling with Home Depot get her black out blinds. We ordered them, paid for them, they took three weeks to send the wrong ones that let a ton of light in and then have been not getting back to us for another three weeks. I thought they were supposed to be customer friendly but I seriously wonder if I will ever shop there again. Ellie is not sleeping in her new room though she loves to play in it. However, she is up EVERY night. The room is bright, small but with lots of windows and my Lady Muck is a light sleeper. However, this morning she had breakfast in bed which is a particular thing she likes to do when I am the one getting her up. She is as sweet as ever.


Additionally, every little tiny extra thing to do feels colossal. My dissertation journey is in the end game. I just sent off a completed draft of the entire thing - 278 pages to my committee....
I am tired. Dave is sick and tired of me and my dissertation too. And I am sure Ellie is sick of me being away from her having to work on it every day after working at my job. Thank god I have found amazing people to cover her afternoons. But still, this whole thing, going back and fighting to have this dream of getting my degree feels a bit overwhelming at the moment. Maybe I am just tired but it also feels like a bitter pill that I didn't get this 10 years ago. I wish I had the sanity at that point to fight the school for what my committee did back then. But then again, it was all about Ellie for a long, long time which I am sure saved her life and mine too.

It's just a hard night. Instead of celebrating I am worried about my discussion section - the last chapter where you say what it all means and what it was all for. I am looking forward to feedback. And I wonder if Dave will ever forgive me for taking up so much time. We always feel like we have no time and yet we have things we both want to do and accomplish. Right now those things are at odds with each other and that is a hard place to be. I wonder if our life will ever get any easier. If Ellie will ever sleep, if we will ever get the things we need for her like the bloody lift, her new chair because she has out grown hers, etc.

Not happy at the moment. Am wondering what it's all for and what the end game will turn out to be. I am defending it on May 1. Any good luck or mojo or good vibes you can send me on that day will be much appreciated.

Tuesday, January 17, 2012

A person is a person no matter how small...


There have been some disturbing events recently that I have discovered via my Twitter account. The first involves "dwarf throwing". I am disgusted by this in general. It's amazing that there has been, to date, no prosecution. Even in the writing of this article about it you see the violent offender called a "prankster". Really? Someone who throws another HUMAN BEING (who is not bothering them in the slightest I might add) down on hard ground resulting in them being paralyzed is a "prankster"???? What is unbelievable about this and so disturbing are many things including the obvious a) that this takes place at all, but also b) the reporting of it is almost conspiratorial with the violent psychopathic act itself by naming the perpetrator as a "prankster". Just plain wrong on so many levels.

Secondly, this case made me very sad for Amelia, her family, for all people with physical differences in general, and our society. I hope Ellie doesn't need any organ transplants because apparently people with developmental delays are not worthy to be on the list, not worthy of doctors time to operate (even with a family donor) and just plain not worth saving. Shame on Children's Hospital of Philadelphia (CHOP)! Things like this fuel my fear for Ellie's future when I am no longer breathing or for that matter even when I am. I hope this mother finds some medical help for her daughter elsewhere. Grrrrrr!

If you are interested in chiming in, in a proactive way, sign the change.org petition. They are looking to get 100,000 signatures and were at 21,000 plus at the time of this post.

Picture Description: Ellie playing with new found Fijit friends. Santa was very good to her this year!

Monday, December 19, 2011

Call for Participants!!!

Hi Everyone,

I am collecting my data for my dissertation on innovation and need your help! If you work in an organization that employes at least 20 people and are over 18 you are eligible to take my survey.

I am studying the factors in organizational life that lead to innovation. The ability to innovate is how our society will advance globally as well as support children like Ellie who benefit from innovations like her voice output device. If you are interested in contributing your knowledge of to this study go to my survey at: http://svy.mk/vDzz2M

To read more you can go to my website: radicalinnovationstudy.com

Additionally if you complete the entire survey you will be entered to win one of three $50 Amazon gift certificates!

Thanks to all!