the 21st Disability Blog Carnival is UP!

Move Over Letterman, there's a new David in town.

David has posted the latest Disability Blog Carnival comprised of many top 10 lists. It's a great idea for a carnival and David has done a GREAT job of organizing it.

I have to go now - lots of thought provoking, funny, deep top 10 lists to read. Enjoy!

Happiness of Disabled Kids V. Peers

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

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

Working Life Time and August Adventures

Sometimes, probably more than I would like to hear, people say of me and to me, "You have a hard life." I have to admit that part of me hates that - the part that hates anything with the hint of pity. And part of me agrees - life is hard and sometimes mine is too. However, overall, I really truly don't think it's a good thing to judge someone else's life time. For us, we have a lot of things we do that are different than the norm. Ok, what of it?

I contemplate on a regular basis. I would describe these contemplations as little 15 to 30 minute conversations with God about my life and life in general. In one of my most recent contemplations I heard the message quite clearly, "Don't begrudge others of their 'rest life times'."

This was a good reminder for me on a day when I was feeling overwhelmed and a bit resentful of why things seemed so hard for me but easy for others - it all seemed unfair. What this meant to me, is that some times you reincarnate and have a life where you learn ALLOT very quickly. Like a really jam packed, comedy and tradgedy, on the edge of your seat thriller movie. I would call these working life times.

And other life times it's more restful. Things unfold more slowly. There is not as much hardship and things are relatively pleasant and easy. I have had those lifetimes. And I think this life of mine is not one of them. It was quite difficult before Ellie was born. I am seeing a common thread when I look at it on the whole. So be it. It's a gift from God - all of these experiences.


But when you look at my life and say, "wow that's so hard", just remember you have had many working life times (if you believe in reincarnation - if you don't no worries) and will have more. So I won't begrudge you your resting lifetime - but don't begrudge me my working life time. I am learning a great deal and there is about a million tons of love thrown in there to keep me going. So, I'm good and no less successful or important or viable or credible or competent or deserving than you. Thanks.

Ok - so that's my little rant.

Here are pictures of Ellie's first time in the Creepster Crawler. She did AMAZING. She didn't cry. She didn't ask to come out. She played with her toy phone and explored a strip of abc mat. Thanks to Jessica and Diana for helping me learn how to get her in it and use it.















The other pictures are just potraits of my 4 and a half year old darling.












And the very last picture if of me and my oldest and dearest friends. We all went to college together so our friendships are going on 20 plus years. I am so lucky to be back on the East Coast so I can hang with them. This was at our July birthday celebration - yesterday. I would never say we do things by the book.

First Time in Kiddie Pool

We have already put our booster seat to good use. This was Ellie's first time in the kiddie pool. She loved it though did not stay in it for long because it was a little chilly. Then she wanted to sit on my lap and push the boat in the pool as well as sing the 5 little ducklings song with the help of mama and baby duck. I had spread out a towel by the pool as well and she indicated that she wanted to lay down on that so we did and she was just delighted to be outside on this great summer day. I showed her the sky and the clouds for the first time teaching her those signs.

Top 10 Most Unexpected Blessings From Holland

This is my post for David's Disability Blog Carnival with a Letterman style top 10 list coming to his blog on August 23rd. (Great idea for a carnival David!)


Here we go:

The Top 10 Most Unexpected Blessings From Going to Holland Instead of Italy:

#10. I got to read a lot of poetry dissing the Dutch.

#9. I have something to blog about.

#8. I now know who my true friends are.

#7. Because of the g-tube I can completely control her nutritional and caloric intake.

#6. I haven’t had to childproof the house.

#5. She won’t run away from me in a crowded public place.

#4. I have met the most amazing people from therapists to nurses to parents of other preemies and children with disabilities – I never would have met otherwise.

#3. I see disability now and instead of fearing it and I continue to expand my understanding of it so that I can advocate for my daughter and in doing so strive to make the world a better place.

#2. My marriage, having been tested to the most intense heartbreaking limits, has remained strong and wonderful. I have discovered that Dave and I are the most amazing team and are not afraid to face anything together – that’s nice to know heading into auld age which is probably scarier than everything thus far!

Drum roll please....

The number one Most Unexpected Blessing from Going to Holland Instead of Italy is:

#1. Holland is way less crowded and the lines are shorter.





Just kidding.

The best thing out of all of this is:

#1. I have the most wonderful, loving, spiritual, emotional, strong bond with my child. I appreciate every, and I mean every little thing she does, every single moment of her life, more than I am certain I would have, had I gone down the typical road - to Italy.

– Every little thing she does is magic and I have the eyes to see it.

First Years Reclining Booster - I think she likes it!

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

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

Our life in pictures

I am going to post at least one new picture of Ellie every day. If Dooce can post a new pic of her dog every day, I think I can manage a new one of my beautiful Ellie Belly. No one would mind, right?!


This is a post to catch you all up on our summer which, obviously has not been all bad as we have managed to get some fun outings in there. More pictures tomorrow of Dave working on the French Drain. Do we know how to have fun, or what?!


Thanks to everyone too for their kind thoughts. Seems like the angels have listened to you all and my headache is gone after 2 plus weeks. It's nice to be back.


Picture Descriptions from top left to right descending:
1. Ellie reading about her hiccups which she had a bad case of the day she came home from the hospital. She was delighted to read about it - ah the power of naming.
2. Ellie sleeping the day we returned from the hospital
3. Ellie discussing the fish with Dada at Mystic Marine Life Aquarium a week or so before the seizure
4. My two cuties posing at the aquarium. I am a lucky woman.
5. Dave and Ellie at Watch Hill this same weekend.
6. Ellie reading with her Nana Jan. She is way into Grandmas these days.
7. My beautiful girl

Alive and Well and Really Tired

Hi Everyone. This is just a quick post to let you know that Ellie is fairing very well after her big scary seizure. They think at the end of the day it was triggered by the ear infection and that she had viral meningitis.

She seems to be recovered from all of that and the spasticity in her ankles is GREATLY reduced. What is up with that? Ok for silver linings.

But the more important outcome is that she is herself, her bright, loving, funny, smart little girl self. We didn't lose any of her that I can tell - thank all the powers that be. She is extra tired from the increased seizure dose. We get her levels checked tomorrow so we will see where she is. We are aiming for the 90's which if you had told me that a year ago I would have been really upset. In the past the initial medication increase fatigue lasted about 2 weeks. We are coming to the end of that two weeks so hopefully she will start getting her energy back. It's hard to see her with dark circles under her eyes and having trouble staying asleep at the same time.

I, on the other hand, and Dave, are really tired. I think I have viral meningitis too due to the constant headache I have in the back of my head going on two weeks or more now. We are not sleeping well because every little movement we run in to her. I really should take up donations for a king size bed. It's the only way any of us will ever sleep well again.

Ellie is so quirky too. She might be scared as we are for all I know. She wants us to come in to her if she wakes at night. Which we do, if we are not hovering there already because we heard her catch her breath. Then she wants a snuggle. Then if she is hungry we feed her and diaper her if that is the need. Then, when all is said and done, including reading ALL the language on the baby wipes box (Kirkland from Costco) several times she wants to go to sleep - NOW. She says, "Ahhh!" and pushes me away and curls onto her left side, forehead buried in the pillow and goes to sleep. It's a somewhat abrupt dismissal at times. But ah well, maybe she is just preparing me for her teen years when she won't want me in her room at all.

On top of all of this we are having to make some critical repairs on our ramshackle house regardless of headaches and braced up knees I have been digging some ditches. Nothing so humbling as digging a ditch.

In between all this chaos we have managed to take Ellie to the beach once as well as the farm to pet the animals. At the beach she loved the pop up tent we got her as did every little toddler in the immediate vincinty so we were blessed to have a lot of little curious visitors that day. She took her nap in it and then played in the tidal pools with dada. She loved the ocean and wanted to keep going in the waves. Then the minute she got in she wanted out because it was really cold and then after warming up in a minute or two would want to go back. Her love of the water is one of the ways we know she is truly our daughter. She was just delighted with the whole thing. She even had her first ride on the Merry-G0-Round, though I don't think we will do it again because it made her pretty dizzy. Not a good thing with the seizure factor in there.

At the farm yesterday she actually initiated reaching out to touch the sheep. She laughed at the baby goats who all wanted to meet her. She has also started signing. Really signing. She will imitate me signing and will sign back. This is a HUGE new development.

That is the current state of things. Apologies to all for not getting back to you more quickly. Looking at the computer is painful right now, it seems to make my headache worse. I will post some pictures tomorrow and post responses to everyone's comments. Thanks to all for your leads on alternative treatments for Ellie and healing thoughts.

Details of the Aftermath

Since Ellie did not have meningitis the seizure was most likely caused by an ear infection we did not know she had. She did spike a fever the moment we entered the hospital and her white blood cells were very slightly eleveated. What this also means is that her pain tolerance is so high, a really bad ear infection did not reduce her to tears but only made her a bit grumpy. The implication for me is that I need to print out picture symbols of body parts and work hard with her on understanding pain and get her to start identifying where, exactly, it hurts. Ellie knows all her body parts but she often has head pain so if the pain is in her head, ears included, she just puts her hand on her forehead. She is usually good for only one round of where's your aowie before she gets bored and wants to "play" something else so I need to get streamlined about my process.

So why the much elevated protein levels in her cerebral spinal fluid? This is the scary answer from her Neurologist - she may have constant irritation from all of her shunts - three in all in her brain. Implications - no one knows. Effect on her - pain. Effect on me - scared shitless.

This is, like some of the CP moms have said, one case of poor baby. Ellie has been really shaky all day. It must be not only fatigue because she has been sleeping allot between meals but from the narcotics leaving her system. I checked her eyes tonight and they were dilating fine at least.

The upshot for me is a massive migraine and chest pains because I can't sleep worrying that she will be in her room, alone seizing. I might just start sleeping in there on her therapy table or beside her in the bed. It's better than crutching in there at ever single slight noise which was about 10 times last night - hence my migraine.

I wish I had more answers about how to help heal and soothe her irritated brain. I am her mother. It's my job to keep her pain free and happy. So what can I do to soothe the pain from thin bits of plastic in her brain? What a bizzarro, twilight zone type of question that is for any mom to have to ask themselves, is it not? Bizarre but truly asked.

I am seriously wondering about things like acupressure, reiki, cranial sacral, hyperbaric - which we know has helped lots of kids reduce seizures, and any other alternative therapy that might help Ellie. Because medicine doesn't have any help for this except to up her seizure medication dose, which I gladly did after this last one, or give her a new shunt, which she doesn't at the moment need, thank all the angels in heaven.

Any thoughts on alternative treatments that might help Ellie's irritated brain heal will be totally appreciated (though I have to say I don't think the whole stem cell thing is safe enough yet to try). Also, any thoughts on how she can safely cleanse the toxins left over by the narcotics they had to give her for this last seizure which included one dose of valium, and three doses of Adivan (not sure how to spell that) and a huge does of Fossfentinal? She is shaking and her head control is worse than it was. She is playing and responding to things as she did before. She is still reading and herself congnitively just very shaky and a bit pale physically.

Can I just hold her forever and never let go - would that work - would that be enough?

In the clear

We are home. Ellie is fine, though very tired. No meninigitis ever grew in the cultures and Ellie's ear infection has been more than descimated. More later after we have all had a bit of a rest.

Thanks to everyone for all their good will, thoughts and prayers. It all helps and now we are home.

Also, Happy Birthday to Dave the best husband and the best father for her children a girl could ever want!

Rainy days are in hospital days for Ellie-luv

Why is it that the rain seems to always accompany me and my family at the darkest moments? Sometimes I think it is God's way of assuring us that we don't shed tears alone. Sometimes I think it might be spirits way of making sure the smiling sun doesn't mock us when we are most afraid. Maybe the rain symbolizes the cleansing effect that the crucible has on the soul. Either way, it was raining today and today has been tough.

Last night Ellie was up from 3 to 4:30am. Dave was with her. First trying to calm her then he fed her and played with her. I heard the whole thing but was trying to sleep because I knew that he would be tired in the morning and I thought at least one of us should try for some coherence. I couldn't sleep though until I heard them both laughing and "reading the box" which is another story.

But my gut kept telling me to go in. It was a tug of war gut versus brain.

At 6:42am, I awoke to Dave's voice on the monitor saying, "Bebe, come in here somethings wrong with Ellie."

I quickly crutch in there and there she is in full on seizure very much like the last one. She is laying on her back, arms straight down her sides and legs straight out. Her eyes are deviating painfully to the right this time and just bobbing there. I turn her on her side and reach for the Diastat kit on her bedside table and give it to her. It's 6:46am at this point. Dave went to call 911 while I gave her the Diastat. He is back pulling out the oxygen and we get the cannula on her. The medics, cops and fire crew are all at our house on our tiny street by 7:51am. I recognize them. They all know about us as they have been here 3 times in the last 6 months.

The seizure is still going on. For the first time the Diastat seems to have no effect. I am calling to Ellie to come back. Telling her "mama's here, sweet pea." "come on back to mama".
The medic decides to give her some Adivan. He does and nothing changes. She is still seizing.

They get her into the ambulance as I quickly change into street clothes. We head toward the nearest hospital. They give her two more doses of Adivan in the ambulance and nothing seems to change. We get to the hospital and she is in a quiet emergency room as it is only 7:30am at this point though time seems like it is in slow motion. Why is she still seizing?

Her eye stops deviating and come to the middle a few minutes after we get there. But Ellie is neither sleeping nor awake. Just lying there. They decide the seizure has stopped but I know this is not yet the postictal stage.

So they decide to give her a loading dose of Fossfentinal in order to allow her to make it to Boston Children's hospital without seizing again. They do and she is knocked out of it. We get in another ambulance and the Children's transport team takes us in. The new medic looks in Ellie's eyes and they are not dilating. In fact the right one gets larger than it already is - and it's huge. The left stays huge with no change when they shine a light in it to check (which by the way is a great thing to do if you think your kid is seizing - if they are their eyes won't dilate properly to light). This is bad.

We get to Children's and they wheel Ellie straight into the CT scanner. Things are moving in that fast slow motion way where seconds feel like minutes because so much is packed into each moment. Finally we are in a room in the Boston Children's ER and the doctors start to come. They did bloods at the other hospital and her Depakote dose is in the middle of the therapeutic range. Her white blood cell count is not elevated. But she now has a fever. She does have an ear infection in her left ear.

They decide to do a lumbar puncture to make sure her cerebral spinal fluid is OK. We agree as her eyes are still not dilating. The CT results have come back and her ventricles are looking smaller than before so we will be able to avoid shunt revision brain surgery that would be needed if she had increased inter cranial pressure. Ellie is being a very brave girl.

They use Emla cream to numb the skin and then put in a shot of Lidocane. That shot really hurts Ellie and I silently question it's effectiveness. There is a guy named Wally holding Ellie on her side in the fetal position to make sure the vertebrae between which the doctor is going to thread the needle stays open. Ellie wiggles though, very strongly then goes limp and keeps doing this. Wally has to be very strong. The Lidocane is in and she proceeds with the lumbar puncture, I am holding my breath and Ellie's hand. Dave is there telling Ellie she is a brave girl and that she is doing well.

This procedure takes 10 minutes with the needle in Ellie's spine while her CSF drips maddeningly slow into 4 different vials, 4 cc's in all. Then it's over, band aid on her back and Ellie checks out and thumb in mouth goes straight to sleep. The results come back and hour later and one doctor tells us that the white blood cell count is low but the protein levels are somewhat elevated. Whoever taught this doc comes from the "cushion the blow" school of thought because when we finally talk to the Neurologist he tells us her protein level in her CSF is 268. Normal protein in the CSF is 40. So the words "slightly elevated" don't come to mind. "Freaking through the damn roof" would have probably been a more accurate description. They decide that though her white blood cell count does not confirm it, they want to treat her as if she has meningitis - viral or bacterial. The scary part here is that if she does have meningitis she will have to have all her shunts removed and replaced. Removing some of her shunts could easily cause her more brain damage.

They also decide to up her seizure meds and give her a loading dose which knocks her out even more. Then they give her two huge doses of antibiotics. I feel like my little family is in some sort of pharmaceutical hell. But what can we say? She does have a fever, she had a seizure that lasted almost one hour and her CSF protein levels are through the roof.

It's 10:13pm as I write this. I just got home from the hospital. Dave will take this shift tonight. I will take tomorrow night because he has a training to attend on Monday morning. I am happy to say that for a couple of hours before I left Ellie finally started to pull out of it. She wanted her videos, and for me to sing the 5 little duckling song, and she started chewing her thumb and making her hungry sound. When we were finally allowed to feed her she kept all her cereal down then went promptly to sleep again.

Please keep her in your heart tonight and wish her a speedy recovery. She needs some angels tonight to guide her through this storm.

I will keep you posted.

You are my I love you

This book brought tears to my eyes. It was a gift to Ellie and Dave and me from a friend. It's very poetic. Ellie wants us to read it to her every night a few times of course. Because, and this is the 4 year old creed I have decided, if something is good once, won't it be even better 50 to a hundred times more? So share it with your four year old with caution.

You are my I love you
by Maryann K. Cusimano
Philomel Books, 2001

I am your parent;
you are my child.
I am your quiet place;
you are my wild.

I am your calm face;
you are my giggle.
I am your wait;
you are my wiggle.

I am your carriage ride;
you are my king.
I am your push;
you are my swing.

I am your audience;
you are my clown.
I am your London Bridge;
you are my falling down.

I am your carrot sticks;
you are my licorice.
I am your dandelion;
you are my first wish.

I am your water wings;
you are my deep.
I am your open arms;
you are my running leap.

I am your way home;
you are my new path.
I am your dry towel;
you are my wet bath.

I am your dinner;
you are my chocolate cake.
I am your bedtime;
you are my wide awake. (ain't that the truth)

I am your finish line;
you are my race.
I am your praying hands;
you are my saying grace.

I am your favorite book;
you are my new lines.
I am your night-light;
you are my starshine.

I am your lullaby;
you are my peekaboo.
I am your goodnight kiss;
you are my I love you.


Is that not the sweetest thing? Just had to share this. It's one of those things you only get to encounter when you have a little kid.

From the other side

It’s done. I had a great day yesterday. Thanks to everyone for your support – it made all the difference. It’s weird. Usually on birthdays, I don’t feel any different. This time it feels different. Like I have turned a corner and it is the biggest relief. 40 was this number sitting out there that I was dreading. I took a look at the nature of this dread and realized that I have achieved many of the things I feared failing at that this dread used to be connected with it. I used to dread being unmarried and childless once I hit 40. Well, I am neither. I used to dread being down and out and still incredibly broke like I was in art school when I hit 40 . Well I am a lot better off than I could have ever imagined. I am fortunate in so many ways. Just because I haven’t written the best American novel, been featured in the Whitney Biennial or consulted to Presidents and Heads of Parliament or more seriously attained my Ph.D. doesn’t mean my life is a failure. I actually feel really content and incredibly grateful for Dave and Ellie especially.

There is nothing more to dread. I have never dreaded 50 or 60 and have in fact looked forward to 70 and 80. Why? Because I have known, including my grandparents, some very engaging, hip 70 year olds. I have seen Dave’s 80-year-old grandmother travel to Australia with a friend - you know for a little adventure. They have all taught me that once you give up worrying about life and get on with living it, it’s a lot more fun. And, that getting older age wise does not mean you have to be old. It’s all in one’s head. Which is where I have been these past weeks and am glad to be leaving.

Speaking of fun, yesterday was I think the best birthday I have had in a long, long time. It’s the first one where I didn’t care about gifts but was just delighted to have contact with friends and family. Dave spent the day with me and it was great to be alone with him which is a rare gift. I got some unexpected flowers from Dave and Bonnie – thank you both! And I got several phone messages containing various renditions of “Happy Birthday to You”. All of which made me laugh and warmed my heart.

A twenty-something even hit me on when I was leaving a shop while waiting for Dave. It was one of those, “I still got a little something” moments.

My favorite birthday email was from my friend Rick who has been very instrumental in keeping me humble over the years. He strives every year to be the first to wish me a Happy Birthday and accordingly this email was sent just after midnight. I can’t share the whole message but the subject line was: “Happy 40th birthday old woman”. So you get the picture.

Thanks to all and back to the usual programming since I have just completed the last Harry Potter novel – which was so very excellent!

Anything more is a waste of spirit

Lately I have been a bit narcissistic, really. And this post is a symptom of that. My birthday is tomorrow and it’s a big one. It’s not a fun one to be spending on crutches and unable to fly around and make my world as good as I usually do. It’s not a good one to be unable to drive and unable to carry Ellie from here to there and everywhere.

I have always been very connected to my body. I have always been able to make it do what I wanted. For me my legs are my wings. I fly on them. I am superwoman with legs. I can jump tall buildings in a single bound while balancing baby and marriage and work. But now I only have one that is working well and because of that my hands are not free either. I feel hobbled. I am temporarily grounded. It’s been six weeks now – that's a long time.

I feel old.

Sometimes it seems like life is all about suffering broken up now and then by bits of joy solely designed to recharge you for more suffering. I have always been on the joy side looking for silver linings while at times dipping deep into the suffering. Looking for silver linings is a matter of survival like breathing. I learned that skill from an early age. It got me this far. But somehow seems harder to achieve lately. I feel bad about feeling this way. I feel like I am at a point in life where I need to focus only on others. It seems like any time for grief is a waste of spirit. It’s like my life, as I knew it has died. Its time has passed and now my focus is on getting Ellie’s brain healed. A task in the face of which, I am so intensely overwhelmed.

I gave up coffee too, in fact all caffeine in order to ensure maximal healing of my knee. My knee has to heal perfectly. It has to be able to lift the extremely fast growing girl now 30 pounds, someday 40 someday 50 and so on. I have to be strong! But I am no more a coffee achiever. I have to feel my fatigue and deal with it in the moment instead of borrowing energy from those wonderful little beans at the expense of my body. It’s hard living in real time but I am glad I am.

I haven’t felt like posting much for these reasons. I am feeling shallow, hollow, frustrated at my incapacity and infinitely ashamed at being so narcissistic and disconnected from all I hold dear.

I am missing Ellie. Missing being her everything. Missing being able to be alone with her and do our thing. We are lucky to have had nursing help because I can’t pick her up. So when Dave is at work I need help with her. For that I am truly grateful. But I miss her just the same. I miss our life and it’s hard having people in our house all the time even though we are truly blessed to have wonderful nurses to care for Ellie when I am out of commission. But in terms of this chapter in my life, it all feels very feeble.

Tomorrow I turn 40. If you know anything about my birthday superstition you might think I would be seriously worried. The good is that Dave is taking the day off to hang with me. We will also see my doctor and find out if he will let me drive and give me a light at the end of the crutches tunnel. Wish me luck and good thoughts for a better year. Because if you haven't noticed yet, 2007 has pretty much been one big kick in the ass, so far...

Happy Birthday to me!

Ryn Tales turned one yesterday!

In honor of my first year of blogging under my belt, delurk! (or not).

I think most of my favorite posts were all the ones from last summer. If you are wondering how to get to know any blog, go to the very first posts and see how it all began.

(See you all as soon as I finish the Deathly Hallows which as proved to be rather GRIPPING right from page one!)

Ellie's ever expanding horizons

Thanks to Kristin, Ellie's teacher extrodinaire at New School for these great pics. For those of you who understand Ellie, you will know that getting her to participate in anything of this sort is nothing short of a complete and utter triumph. Ellie has been outright refusing to do any sort of craft thing that involves touching anything even slightly gooy since she was about 2.5. I am so delighted to see her participating in that quintessential kid activity of getting one's hands dirty in glue and paint. Here you can also see pictures of her playing with a tamborine - another first. Ellie has huge auditory aversion issues. The fact that she is now participating in music classes though she still has auditory defensiveness is a big improvement. She even gets mad when the song ends and has been using her "more" button to let everyone know they should sing it again, thankyouverymuch.

Thanks to everyone at New School for all the wonderful things you do for Ellie. It is opening her world in the most profound ways!

Image descriptions from top then left to right:

1. Ellie doing vestibular work

2. Ellie doing tissue art and touching the 'sticky' board

3. I. helping Ellie work with the tissue paper by first touching it and using hand-under-hand technique - take note Sapna as to what hand-under-hand looks like!

4. Ellie enjoying playing with the tamborine during music

5. Elie picking an animal

6. Ellie laughing at her egg

7. Ellie and her classmate learning to share the wiggles. He is also the same little boy who occasionally will pull Ellie's pigtails and take her toys as well as get mad if she doesn't pick him during circle time. Needless to say, we adore X.

8. Glue touching girl

9. Worn out from all that learning and doing catching a cat nap.

8 random things about me

I was tagged by one of my favorite Bloggers, Retired Waif, to tell 8 random thing about me. Here you go:

1. I love trees.

2. I have logged over 100 hours as a private pilot – some of those hours learning to fly a Citabria (small, tail dragger acrobatic plane) somewhat like this one thanks to my now long lost friend George. I flew to NY once and my route led down the Hudson River and I did turns around a point using the statue of liberty as my point. All before 9/11. This was one of the best times of my life. I LOVE flying. I got to fly a glider once and that was amazing.

3. I have been proposed to 5 times and engaged 3 times. Three times a charm!

4. Every time I fly to England I weep because it feels like I am coming home. I don’t live there so it’s actually really embarrassing so much so that sometimes I pretend I am weeping because of the book I am reading. Humiliating really.

5. "Ryn" as in Ryn Tales comes from the last three letters of my first name, KathryRYN. And no one calls me that in life. (I hear a couple of Ohs! out there... ;-)

6. Within a month on either side of my 28th birthday I sold or gave away the bulk of my possessions, sold most of my paintings, parachuted from 5,000 feet on my birthday – July 24th - and drove from western Massachusetts on the East Coast of the US to California (on the west coast) landing there one month later with $250 dollars in my pocket to start my new life.

7. The biggest, best, soul expanding transformation I have lived through has been the birth of my daughter.

8. When I was tagged with my first Meme I thought it was pronounced “me me”.

I tag David, Kay, and Gordon.

Disability Blog Carnival #18 is UP and it's Awesome

Here is a description of the carnival from her blog:

" Disability Blog Carnival #18,
a/k/a
The Disabled! We’re just like YOU!!!!

So, that said, this edition of the Disability Blog Carnival is designed to explain the the untutored able-bodied type that there’s nothing abnormal about us… we’re just like them! Please do accept my tongue-in-cheek parody and sweeping generalization in the spirit it’s meant, and don’t allow my irreverence to detract from some of the awesome, wonderful writing to be found ..."



I can't tell you, Retired Waif, how much I LOVE this topic! Great Carnival. Thanks for putting this together, especially, while in false labor! I hope all is well and that you have a baby, not only in your Victorian cart, but in your arms as well, safe and sound.

If you have not already been following Retired Waif's blog you are in for a treat. She is one of the most introspective, thoughtful, witty writers out there who always makes me think and see things in a new way. I truly love her blog. Enjoy!

Ellie's first REAL beach day

Today we went to the beach. That simple enough statement represents a HUGE accomplishment on our part! It's Ellie's second time at the beach ever and my second time going since before she was born. That's something considering how much I love the water and as a former surfer. It was an amazing afternoon of firsts for me and Ellie. Thanks to Linda forever and ever for making this happen. I would have never found this lovely beach or been able to go without you! Since it is a fact that I am on the verge of going bonkers home bound on crutches and under doctors orders not to drive you have done a great deal for my tenuous grip on sanity as well!

We went to Nataskit beach which was not crowded and accessible albeits crumbling cement, storm crushed ramps. Crutches and stroller made it to the sand alike. Beautiful, hard packed, lovely fine, soft sand. Ellie enjoyed feeling the sand on her feet and we played where are Ellie's feet a lot. She would reach down and grab a handful of sand on her feet and get excited and throw it everywhere! It was GREAT. And I was impressed that she just reached down to touch a thing she had not seen for a couple of years - sand. The water in the tidal pools abandoned by the outgoing surge was warm as a bath and placid as one too. She reached down to pull up handfuls of wet sand. I wish we could of just sat her in it to play. We couldn't however because we were really concerned about getting sand in her g-tube. I did wrap plastic wrap around her belly but I could see sand getting underneath it. The last thing you want going into her tummy is sand. Next time I think I will cover her entire tube and dressing with duoderm and make a tiny slit over the feeding port and then cover that with duoderm again so that I can access it to feed her. (see the things we deal with that no parent in their right mind would ever consider!)

If anyone has a kid with a g-tube can help in this matter I would dearly love to hear what you do to keep the sand out.

At the beach, ever a learning opportunity, we discussed the Atlantic Ocean and who lived there including shrimp, crab, lobster, whale and fish. Ellie saw waves and reached down to touch them. She even got a little sun on her face for the first time - the slightest of pink blushes which I think is already turning a golden brown. She definitely inherited her fathers' great skin!

We finished up the experience by taking a look at the horses of the carousel. Ellie was not bothered by the music which was also not too loud (more evidence of the good work they are doing with her at New School). Though we didn't ride them this time (because I don't want to do too much too soon considering her sensory integration issues) she was happy to go up to the horses and pet their bejeweled and painted necks. I think she really liked them. We will go for a ride eventually, baby steps but certainly in the near future considering Ellie's smile at petting the horse and the fact that she was nonplussed by the environment. I can't wait. I love carousels and haven't been on one in years!

I am happy too to have found a local beach that is so pretty and so accessible. No more sitting around sweltering in summer's cauldron! Thanks Linda for a GREAT day!

Ellie Learning To Use The Gait Trainer

Ellie is learning to use a gait trainer. This one is a Riftin. Ellie works very hard for her PT, Mary Anne at New School.

Go Ellie!

Blog Carnival #17 is up at Planet of the Blind!

I am so behind in my reading! Lots of excellent, heartfelt and hillarious posts in this one folks. The theme is Laughter, the best medicine. Right on!

Steve and Connie have done and amazing job at organizing it. Just wonderful. You can find it here.

Channel 5 is Asking the wrong questions about Educational Funding

Overview added for Disability Blog Carnival:

Often the media in it's mad amoral quest for ratings and sensationalism gets the story all wrong. Below is my experience with Channel 5 who are asking questions about educational funding for disabilities. Had they done their research versus just skipping stones they could have easily gone to our government's educational budget site and found that Disability funding which includes education for kids like Ellie is in a totally separate universe than education funding. They also would have found out that Ellie's town that sends her to an all special needs school gets reimbursed about 90% of the cost and then some. So it is even possible that they are spending less to send Ellie to school than the typical kids to the typical school down the road that we tried so hard to make work for Ellie.

Crappy reporting like this that is ill researched and biased to begin with only does more harm than good. So there you have your average Joe watching Channel 5's report and thinking those damn handicappers, what do they really need school for anyway and to think my kid has to wear the same football uniform two years in a row because all the money is taken up by special needs.....gRRRRRR . Channel 5 - get some scruples! And if you are going to be asking questions about all of this - ask the right ones.

Here is the original post:

Today the Channel 5 news team, who are doing a piece on special education and the main streaming trend, interviewed me.

I did the interview because Ellie’s school asked me and if there is one place I want to give back to it’s her school. I thought their story was going to be about discussing the need for special education and the issues around mainstreaming kids like Ellie. What it turned out to be about was money. I don’t know why this surprised me, because, you know, money is what makes the world go round, etc. But it did put me off a bit because I thought the reporter and the producer were not asking the right questions.

Instead of asking: (For the record - I am paraphrasing these questions and in some cases the implied question and the underlying issue).

Do you think we should be spending so much money on special education when teachers are getting fired and sports programs are being cut?

I think we need to be asking:

Why is it that so much of the Federal budget goes to war versus supporting our schools and the future of our country through properly educating our children?

Instead of asking:

How do you feel about the fact that money is being taken away from “our best and our brightest” to fund special education?

I think we need to be asking:

How do you feel about the fact that the state and federal governments have been continuously cutting back on school funding for the last 20 years? And how do you feel about the fact that you don't even rudimentally understand how the budget works and that funding for special needs is not coming out of the federal or state educational budget! So sending Ellie to school is not taking any oney away from educational spending at the town or state level.

Instead of asking:

Are the disabled really worth educating?

We should be asking:

Why as a country do we allow for such poor, misguided, biased journalism? We should also be asking why, as a country, are we choosing to elect officials and allow for public policy that allows for the continuation of a broken public education system? Why are we, as a people, not calling for serious education reform?

I hate zero sum questions. Discussing whether we can take money from special education and use it for the football team instead is the wrong conversation to be having. Asking me whether I think Ellie is less worthy of an education than “our best and our brightest” is DEFINITELY the WRONG question to be asking.

This type of poverty of consciousness is the symptom of a particular type of fatigue that is prevalent in our society today. It’s the, well we can’t change anything at the higher levels of government, especially with Bush in office - fatigue. So let’s just assume there is a limited amount of pie and bicker over it - fatigue. It’s the our government isn’t listening at the higher levels and our domestic spending is incredibly screwed up - fatigue. It's the, there's not enough money to educate our best and our brightest so let's blow the lid off the seedy underbelly of special education - fatigue. (please tell me - what seedy underbelly?)

It’s all just so NOT what we need to be discussing. We need to be asking ourselves why do we elect officials and allow for legislation that has put our country’s educational system into a state of disrepair and poverty?

For the record, I think all children, able bodied, disabled, rich, poor, all ethnicitys, etc. – ALL - have the right to a free, high quality public education. I also understand that when I say, “free” as a taxpayer that means I am the one who will be paying my share. And I am fine with that. I was fine with that for the 20 years I worked that I paid into the system and had no children just like I am fine paying social security tax even though I am sure I will never receive any benefit from it personally. I am happy knowing that someone’s grandma is able to get health care because of my contributions. That is my social responsibility as a member of my society and I am happy for it. I don’t live in a vacuum after all.

Social responsibility that is followed by social action is what needs to be discussed when it comes to asking funding questions for our schools.

Lastly, the reporter did not realize it, but Ellie is one of the best and brightest. Too bad she couldn't see that.

The piece is coming out in October. I will let you know.

Impressive use of the crutch

Ok, I can do stairs and get from points A to B pretty well on my crutches though at the end day I am a bit tired and my underarms are sore. But this guy totally puts me to shame.

Good friends are hard to come by

So you have to cherish the time you have with those few that you feel truly connected to.

Tiffany is one of those people.

She helped us with Ellie when we first moved to Mass for a couple of years and became someone we consider family. She helped me through dark times with words of encouragement as well as analytical powers that kept me on track and understanding how to navigate the complexities of Ellie’s disabilities. I always felt 100% safe leaving Ellie with her when I had to go. She sang in dulcet tones at my wedding such that angels would envy as well as making it possible for us to go on honeymoon. She married a great guy I count as a friend and I got to repay the favor by being the photographer at her wedding. I have learned so much from her and she has helped me be a better mother.

Tiffany, you are going to be an amazing mother some day…!

When I mention her to Ellie I always say, “Ellie, is that your Tiffy!” only to be met by squeals and smiles. Tiffany and Ellie are good friends too, both Scorpios and bright shining lights. Tiffany is Ellie’s Fairy God Mother. Besides being a brilliant nurse she also put her whole heart into helping Ellie heal. She equally held our conviction that Ellie will heal and overcome the odds. All her actions demonstrated this from reading to her for hours during Tummy Time to snuggling her in the Sling when she was sick to taking the time to brush Ellie’s teeth – which, trust me, is no small task. Ellie was never so immaculately groomed and dressed as when Tiffany was around! I can only aspire! ;-)

I think the waltzing they used to do is one of my favorite memories of all time.

Thank you Tiffany for being such a good friend. I wish you a safe journey to this wonderful next phase in your life. We will miss you and look forward to seeing you next summer!

Ashely Treatment Revisited

Jacqui has captured the thoughts of a person on this who is, in the rarest possible way, in the know. Check out her post here.

Shocking Lack of Pain Management

Pain management or the lack of it for children has been on my mind a lot lately. I know that many of you may not agree with me but I feel very passionately about not subjecting special needs children to pain. Of course on the surface actually everyone will agree with me. However, I find it is not so in practice. I have a Zero Tolerance Policy when it comes to any sort of pain for Ellie, emotional or physical.

My point is this, Ellie and children like her have more than their fair share of pain dealt to them, and in some cases like that of the premature infant, from day one. With things that are not emergencies (and even during emergencies) why not elect for the best pain management possible?

There are two non-emergency procedures in which I find the most shocking lack of pain management: Vaccination/injections and Botox injections. I am always shocked and then saddened when I hear about children who get Botox injections with no pain management. (And yes, I know this is a first world country problem. But since I live in the first world, it still applies.)

I will start with vaccinations.

First of all I will say that we have never managed Ellie’s pain well for vaccinations. I would try to prepare her that it was coming. In some cases give her Tylenol or Motrin afterward if the doctor said it was ok. But usually it was just hold her, tell her she’s brave and that I was sorry she had to get an aowie and try not to cry myself while she wailed.

Today, after a very enlightening conversation with our dear friend and guardian angel Garda (that is her real name), I found that there are two ways to manage the pain of vaccination injections. Garda is an RN extraordinaire, who is an expert at nursing and keeping healthy and comfortable the special needs child; especially children with brain damage and cerebral palsy. She has been a Godsend in my world and helped Ellie and Dave and I through many difficult things.

Regarding minimizing the pain of injections there are two important things to consider: injection site and numbing of the skin.

When giving a vaccination you need to give it on the side or the ventrogluteal site NOT the top of the upper thigh. There are 70 percent more pain receptors in the top of the thigh. Here is a description from Wong On Web!. Thanks to Garda for this excellent resource.

With the rapid advances in immunizations against childhood diseases has come the dilemma of choosing safe sites for multiple intramuscular injections. By 18 months of age, infants can receive 20 injections, with as many as 5 in one visit, and each should be given at a separate site! Literally our infants have become "pin cushions."

The acceptable injection sites for infants include both the vastus lateralis (outer thigh) and the ventrogluteal muscle. Unfortunately, many health professionals are unfamiliar with the ventrogluteal or hip site and confuse it with the dorsogluteal or buttock site. The latter should not be used until the child has been walking in order to develop the muscle mass. The dorsogluteal site is dangerously close to the sciatic nerve and is covered with abundant subcutaneous tissue in many people. Its landmarks, especially the outer boundary, are poorly defined. I do not recommend this site unless no other muscle area is available for an IM injection.

On the other hand, the ventrogluteal site is relatively free of major nerves and blood vessels, the muscle is large and well defined, and the landmarks are easy to locate. It is an excellent IM injection site, even in infants. Simply place the palm of your hand over the greater trochanter (hip joint), index finger over the anterior superior iliac tubercle, and middle finger along the posterior iliac crest. Inject perpendicular into the center of the V formed by the separated fingers.

* It has been my experience that this site is less painful than the vastus lateralis. Of course, every effort should be made to reduce the pain of the injection by using good technique and pain control measures, such as EMLA or a vapocoolant.

*An excellent resource is Reducing the Anxiety and Pain of Injections: A Guide Based On A Composite Of Research Data, Clinical Studies, And Expert Opinion, Reorder # BDM#01. Available from Becton Dickinson Media Center, 1 Becton Dr., Franklin Lakes, NJ 07417; 800-ALL-MEDIA; fax 1-201-847-4862.

As you can read, the Ventrogluteal site is pretty far from the top center of the thigh where Ellie has received EVERY vaccination shot EVER.

The other seriously simple stupid solution to minimizing pain of injections that does not involve any costly or drug interacting chemicals is the good ol’ ice cube.

Alton Brown would call this Good Medicine. Before the shot take and ice cube in plastic baggy and put it on the injection site for 20 to 30 seconds then swab with alcohol and give the shot.

Why has no one ever taken the time to do this for Ellie? WHY! I am up in arms about it. But you better believe that the next time Ellie has to get a shot I will be there with my ice cubes and insisting it be injected in the Ventrogluteal Site (which I have to say is another one of those fun words to say. Once you say it a couple of time it just rolls off the tongue. Ventrogluteal, ventrogluteal, ventrogluteal.

I have read that you say a name out loud three times fast you won’t forget it. So repeat after me: Ventrogluteal, etc., etc. I just don’t want you to forget that word the next time you are waiting for the nurse so when she comes in you can casually say, whilst holding your baby as far away from her as possible, “You are planning to make sure the injection is going in at the Ventrogluteal site right? You know some people tend to forget that and give it on top of the thigh.” That way they can say, “Oh of course.” And others might say, “Certainly, in just a moment” as they go into the back to look that up.

In fairness to myself and all the other parents out there subjecting their children to painful vaccinations, I have to say, no one ever went to such careful measures when I was a child receiving shots. It was really gawd awful painful when I was a kid, so I learned then that shots were just painful. And that was that.

This is why I accepted that as normal and never asked if there was anything that could be done to help. I have to say too that I myself was a NICU baby and had lots of shots as a newborn and then as a young child from operations and to this day I am needle phobic. I have to consciously control my breathing not to pass out even to give blood. Maybe that is why when Ellie has to go through it I have to keep it together to comfort her though I just want to go ahead and have a good cry with her. ARRRG!

Here is my RANT about Botox injections given without pain meds. I describe in depth the pain management and the use of Botox for Ellie here.

Botox injections tend to be the most painful because you are delivering fluid into the muscle, and not just once. Ellie had over 6 injections.

Most children who would benefit from pain management during this procedure. I realized some children have massive brain damage. That said, pain is a brain stem issue. The brain stem is the most primitive part of the brain and as such mightily aware of pain because it’s all about survival. Therefore to say your child has brain damage and can’t feel it or will quickly forget it are NOT good reasons to not manage their pain.

Here are some common excuses I have heard about why children are subjected to Botox injections with no pain medication:

1. The doctor’s office can’t sedate and the hospital is 3 hours away.
My response: You get Botox ever 6 months, that’s only twice a year or less. Find a way to get to a hospital so that your child can get pain meds. Be inconvenienced. Inconvenience your friends of you have to. Parenting is not about convenience.

2. My Pediatrician said it’s not necessary and that most kids don’t get sedated for it.

This is total crap. Insist on pain management or get a new Pediatrician if they will not come on board. Pain leaves an impression on the body. Cells have memory. Children with medical issues experience so much pain and are often traumatized by it. Why, why, why add to this? I have not heard one good argument yet to answer that question.

3. I do understand the argument that sedation is not good for any child especially those who are medically fragile. This is in fact why we waited so long (2 years to be exact) before trying the Botox on Ellie. But if your child is very medically fragile, maybe the Botox is not the best thing for them at that time.

4. It’s not necessarily painful for every child. (This is the, “Well my kid is so brain damaged he/she won’t feel or remember it argument.”)

I hate this argument most of all. It assumes so many awful things about not only the rights of someone with disability but also their value in life. Also, I ask back, are you really sure they don’t feel it? Prove it! Just because someone can’t call out in pain or protest doesn’t mean they are not in great pain. I do know of one child whose mother is able to distract them by singing to them during the treatment and that child truly does not feel it. But this child also is very rare and has a brain injury in the brainstem that occurred in the first trimester inutero. Most children with brain injuries have them during or after birth where the brain is fully formed. Preemies are also born, even the earliest ones, with more brain development than the child I am referring to. So just because you might hear of one kid this works for, it won’t work from the great majority.

5. Eventhough we had three nurses restraining my child I still did not insist on pain meds.

I have no response to this except THIS ENTIRE POST.

6. My child’s sensory integration issues make taking off the Tegaderm/ tape used for the Emla cream unbearable for her.

To this I say fair enough, don’t use Tegaderm or tape especially when plastic wrap will work just fine. Why not practice with lotion and plastic wrap before hand to help them get used to the idea? Ellie has a lot of sensory defensiveness I am not talking from inexperience here.

That ends my rant about pain management or the lack thereof for children, especially those with disabilities.