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.

Critique

“Hey Critic take a moment to understand
My world is melting in your hands
Melting, melting, melting…”
- From the song “Hey Critic” by David Stanley

Ryn Tales has been reviewed twice this week! Once because I asked and once unasked.

The girls over at So Many Blogs, So Little Time reviewed my site this week. You can sign up on their list and they will eventually review you. I signed up in February about 30 years ago. You can read the review here.

Diva Dee thought my template was crap and canned. Which describes it perfectly. They came down particularly hard about that. I agree, my template is canned and my blog has a bad case of sidebaritis. I don’t know about you, but I think each post should have it’s own unique wacky label. Is redundancy really that bad? All the governments of first world countries rely on a high level of redundancy to keep life as we know it chugging along.

DD's review was good motivation for change. I was bored to death of the skin Ryn Tales was in, so I changed it and will change it again as I learn more. After all, DD’s site is on Blogger. They have just “Hacked the crap out of the template” to quote Dave when we looked up their source code. I thought I would copy their source code into HTML and in doing so copy their template and then ask them for another review. Imitation is the most sincere form of flattery is it not?!

I noticed that in other reviews the girls panned canned Blogger templates but if the blogs were funny or well written they were very forgiving about it. For mine I think she gave me the score she did out of sympathy for my situation. I think DD must have been like, “Oh shit, she’s got a disabled kid.” She admitted that she wondered how she would give me a fair review. I appreciate her honesty there.

At the end of the day they gave me a 7.5 out to 10 summing me up as, “… just truly quite remarkable.”

Hmmmm. She has a point there, of course. In fact, that is pretty much how I think about myself day to day. Truly Quite Remarkable. You can just call me TQR for short from now on.

Getting a 75 on a paper in school would have been such very bad news. What does this say about my writing? Is it soooo not worth mentioning? I think this is a sign of room for improvement for me in that area. Certainly. I write most of my posts in minutes and then read them over once or twice in the process of posting them. I don’t spend hours struggling over the writing or laboring for perfection. And, I know this summer I have been less than inspired. Great writers I think wrestle a lot more with their work. I have read stories about Sylvia Plath agonizing over her poetry. In my case, I don’t think shear volume of writing is always the best practice if you want to get better at it. Which is so unfortunate, because it is so very easy for me to capture my thoughts shot gun style with the keyboard.

She decided at the end that Ellie was the best thing about Ryn Tales. Here, I heartily agree with her.

Overall, I am glad I signed up for their critique even though I am joking about it here. Getting feedback about how one is doing in life is critical to any ones' growth and development. It’s so rare that we get honest feedback from anyone. Throw in a special needs child and it becomes even more difficult for people to be straight about you in your fragile condition. Thanks Diva Dee!

The next informal shout out I got unexpectedly I have to say meant a lot more to me personally. It was like meeting Obi-Wan Kenobi and having him say, “Hey I’ll put a word in for you with the Jedi Council.”

Dream Mom, who I have to say is one of my absolute hero’s in life on so many levels, gave me a shout out here. She even wrote me an email. I was so delighted. Her writing and thoughtfulness and wisdom regarding her life is beyond the pail. Her story is quite harrowing. But I have to say, even if she did not have a disabled child, and she wrote about her life the way she does in her blog, she would still be my hero. You will see what I mean if you read this or this or this.

She has clearly transcended the normal state of consciousness and gone somewhere high above it. Her writing often describes my inner dilemmas as well as giving me answers to them. She is farther ahead down the parenting path than I am and lighting the way as she goes for me and, I am sure, many others. Thanks Dream Mom! I am honored to be on your Blogroll.

So here goes. What do you, dear reader, think of my blog? How could it be better? What do you really like and what could you do with less of? Did anyone even read to the bottom of this post to notice I am asking?

Bits and Bobs

Life goes on and sometimes you just have to hang on and let it take you. Here are some pics of our life. The person enjoying the ice cream is my friend Troy. We have been friends since art school. Believe it or not, but he is a master artist who sometimes finds inspiration via ice cream cones. We took Ellie to see his studio in New London the weekend before my knee was drilled into by an AWL wielding doctor.

Linda, one of our favorite people of all time, gave Ellie these beautiful butterfly/fairy wings. Ellie loves the part on her Signing Time video where the butterfly flys for the first time. Linda saw these and thought of Ellie. I think Ellie really liked them. She did not want to take them off for tummy time. It got me thinking too about dress up and how I don't have any costumes for her or even a tea set though she loves the I'm A Little Teacup Song and book. I think I must get her a tea set so we can have tea parties and maybe some feather boas and big hats and costume jewelery so we can play dress up. Where are my Victorian grandmother's 100 year old attic treasures when I need them?! Never the less this was Ellie's first time outside of Halloween playing dress up. Thanks Linda! You have opened up a whole new world of play for us!

Ellie is supporting Eire while cheering me up after surgery. I have to record the giggle that goes along with that cheeky grin!

Here she is taking her first step ever in a Rifkin walker at PT yesterday. Jessica is a great PT that we are going to outside of New School. Ellie took about 5 steps total and did a fair job at holding herself up though I think it was very difficult and scary. I am so proud of her to have taken steps just the same. Go Ellie!!!

Why I married him

He's looking down at me in all my raised knee, ice packed, pajamma glory and says thoughtfully, "You look hot."

"I do?"

"Your skin looks bright."

"Really?"

"Yes, you look cute bebe."

"Must be the fact that I get to sleep through the night for the next 6 weeks!"

Notes to self:
1. beauty rest is not a myth.
2. The Gods of Sleep Through the Night have not visited in 4 nights.

Percocet Dreams

My house sleeps in peace
Cradle my restless heart
Soothe my open wounds
Wall out my night terrors

It sighs as it slumbers
Foundation of happy memories
Dreams of babes born in the bath
Small hand prints in cement fill the cracks

My house is tolerant
Welcome to change and imperfection
Calm in the wee hours of the morning
Fortress against fear of the dark

My house sleeps when I cannot
Safe haven against demons
Beautiful incubator of dreams
Gentle family keep

Happy Father's Day Dave!

Dave, from the very start, has been a hands-on Dad. When I became pregnant with Ellie I did a bad thing. I took the stick test and then told Dave it was negative when it was actually positive. I did this because we were not married. Though we were in love, I wanted to know how he truly felt about it. I, in no way wanted to rope him in or anything like that. I had made up my mind from an early age that I only wanted a father for my future children who would be involved and just as in love with them as I knew I would be. So I did this bad thing and told him it was negative. The sudden drop of his face, the downcast of his eyes the hope that washed away in that moment was enough to tell me he had been just as excited about this as I was. And he was. Of course I told him right away it was positive. We took another test the next morning to be sure which incidentally was the morning we left for our dear friend’s wedding in Spain. Our journey into parenthood was off to an exciting start.

I couldn’t have picked a better father for my child or a better partner to be a parent with. To say Dave has been involved and is hands on is a huge understatement. He went to every prenatal visit with me. He was just as excited about every phase and stage of the pregnancy as I was. He looked after me like I was made of glass during that time. He solved problems and dealt with all of my hormonal swings. He found where the maternity clothes were. He found us a great doctor. At the time we became pregnant I was revising my dissertation and had started this rather big job at a big company and was a little overwhelmed. I was thrilled and connecting and talking with Ellie in my belly as well as being a little overwhelmed. Dave was there for me and Ellie. He moved into my little studio apartment and it was great. When we got a bigger place just before Ellie was born we were disappointed not to be able to hear the other person speaking because the place was so big. Two bedrooms after all is quite a switch from a one room studio. So we had to work harder to maintain our on going dialog. I miss that little apartment overlooking the marina with the boats that twinkled at night.

The stress of Ellie’s traumatic beginning did not put distance between us. Instead it brought us closer. Dave has a great deal of grace under pressure and is the most loving father and hardworking man for his family I have ever met. I am sure there are some who think I don’t deserve him – at times myself included.

Dave was right there beside me in the NICU – 100 percent present. We are a great team. There is nothing we cannot solve when we work together. And we have had our fair share of obstacles and trauma to deal with.

I think Ellie is the luckiest little girl I know. I always feel very proud that she has such a great father. She loves her Dada too. Loves! The scenario that has always epitomized my ideal parenting situation is that if children hurt themselves they would run to either parent. It wouldn’t matter which parent because they were just as close to both. I have lived to realize this dream. Ellie is equally close to each of us. However, as her biology dictates, she looks to us for different things.

To Dave she looks for praise and courage. She will do something great like show me a new word she can read and I will give her a lot of praise and she will smile, but then she will look to see what Dada thinks. She is clearly much more satisfied when Dada tells her she is beautiful. She will also try anything new for Dave. She is very brave when he is near. Most nights she wants both of us there when she goes to sleep but the last toss and turn ends her up snuggling into Dada. Seeing how much love they have for each other is a mother’s dream. We are the Three Musketeers. We are an unbeatable team. We each have our own special role.

To say that Dave is a great father, a hands-on involved father is an understatement. From the point we found out Ellie was on her way to us, he has given and continues to give his whole heart to her and to me: unabashedly, unashamedly, unconditionally with creativity and passion.

Happy Father’s Day Dave!

Picture Descriptions: From the top

1. A rare photo of Dave with a rare beard that I am sure he only grew because I asked him to when I was pregnant. I still love it on him. In this pic he is holding the collostrum from my first attempts to pump for Ellie.

2. Dave doing kangeroo care with Ellie in the NICU in November 2002

3. Giving Ellie her very first bath in the NICU, December 2002

4. Cradling Ellie after her resevoir surgery - January 2002

5. Taking notes on all sitting by the isolet in the NICU. We filled 4 sketchbooks altogether with notes on everything from tracking her day to day stats from rounds to observations to research questions for the doctors as well as a few sketches of her.

6. More kankeroo time November 2002. This was pretty amazing because Ellie opened her eyes and lifted her hand to touch Dave's chest. An incredibly touching moment for out baby who was not even supposed to be in the world until February of 2003.

7. Ellie in the growers and feeders row in her crib. Dave making faces with her in the mirror - as usual making the therapy seem like play for her.

8. Hanging out on the futon in December 2003 after we had moved to Boston. Dave stayed home with Ellie for a year and during that time got her to start signing and vocalizing.

9. First time finger painting in summer 2004

10. Ellie was the flower girl at our wedding on August 22, 2005 at Castle Durrow Ireland. Dave cleans up good, no?!

11. Dave and Ellie on Halloween 2006

12. Dave holding Ellie so she can see over the bars on her first trip to the zoo, May 2007

Knee Surgery Update: warning, this post was written under the influence

I am home, on Percocet with a funky self-filling ice pack on my heavily bandaged right knee. The surgery went well though when they got a look in my knee they found two miniscule tears on each side as well as damaged cartilage and a good bit of bone against bone. So they repaired the tears as well as performing a microfracture surgery to repair damaged cartilage. The microfractures they make with an AWL encourage the body to heal the newly broken bones and grow new cartilage. Lovely to know an awl came in handy for me poor knee (yikes!)

I was a little freaked out before the surgery because the last two I had one of which was the emergency c-section when Ellie was born were traumatic. But Doctor Micheli is a superstar who works on the knees of tons of famous athletes. He also operated on me when I was 13 to lengthen both Achilles tendons to correct my bilateral Equinovarus stuff. I have to say his bedside manner has improved. I was waiting, and quietly freaking out just a little, trying not to cry feeling a bit like Paris Hilton crying on her way back to the slammer somewhere between total fear and humiliation for showing it. But he came up and held my hand and said with a warm smile, “You ready! It’s going to be fine.” I did feel a little better. I can see he has worked on his bedside manner. When he operated on me when I was 13 at Children’s hospital Boston just before I went under he told me very seriously, “This is the most painful operation I perform. I just want you to know.” Er, Danielle and all other med students out there, for the record, I really could have lived without that comment. Though looking back I realize he was just trying to prepare me.

I obliged by proving him correct as I woke up screaming and proceeded to need a Morphine drip for an entire week. I was in the hospital for about a month after that or so. After that first week though, when the pain was not so excruciating I made friends with a couple of the six other kids in the ward and got good at using a wheel chair and then crutches. I remember having to learn to walk again and that being painful. I also remember meeting Donny and Marie Osmond. For those of you not familiar with them, they are the Mormon equivalent to Sonny and Cher. And I had grown up watching the Donny and Marie show. They were nice and signed my casts. I thought Marie was much prettier in person. As I write this I wonder if I will regret blogging while on Percocet. The next year at age 14 I took up bicycle racing and won the CT state road race and time trial as well as the local time trial series and even some criterion races. The operation the previous summer was a success and has carried me many miles until recently.

This time around I was once again in the steady hands of one of the best surgeons ever. So I know he did what he had too. However, the upshot of all that lovely MICROFRACTURING, I just want to say that over and over. Do you know they use a little ice pick type tool to do that – the Awl – yes I mentioned that earlier! Yikes. Anyway, MICROFRACTURE, microfracture, sorry it’s the Percocet. The upshot is that my expected recovery path of only needing crutches for 3 days and being able to bear weight, which come on, let’s face it, is a euphemism for carry my quadriplegic 28 pound daughter everywhere in two weeks has drastically changed. Now I can’t put more than 20 percent of my weight on that knee for 6 weeks. Meaning I will be on crutches unable to lift Ellie for 6 WEEKS! six weeks, weeks, weeks, weeeeeeeekkkkksssss. Did you hear the echo?

See what putting this off for seven years got me. Dave has been a super trooper running around like a "blue arsed fly" as he would say but hasn't said yet getting everything organized. I can only account for his positivity in the face of a long six weeks ahead to the fact the he is really cheered up by the various renditions of "I got you babe" I keep singing to him as he works his butt off.

Knee Surgery

Thanks to everyone for all their comments on Medical Ju-Jitsu as well as Ellie's floor scooter.

I am going in for a knee surgery today. Fun, fun. I should be home tonight and posting again by Monday. Maybe even posting more as I won't be able to get out in my garden much for a week or so. I have been putting this surgery off since 2000 when I injured my knee. First it was graduate school, then it was defending the dissertation, then I had this big job, then I was pregnant and then Ellie was born. There's never a good time is there?

Wish me luck.

Ellie Movin On Up

The video is of Ellie at "New School" in a floor sitter that was built at her amazing school out of tri-wall and attached to a motorized scooter. This was then operated by the switch you can see in her lap. Ellie had to continuously press the switch to make it go forward. This video is of the second attempt. It goes very slowly so not much sense of movement. But she did get the whole concept of press the switch and make it go. Go Ellie!

Eye Candy

Image descriptions: First two pictures are of Ellie holding Dada's hand as we visit the farmer's market last Saturday. Last two pictures are of the painting I am working on currently. The first painting I have attempted since leaving Western Massachusettes in 1995 and my life as an artist there for the brightlights and high ambitions of Los Angeles and graduate school. I think I might call the piece "The Changeling" and it is part of a suite I have in my head and just need to paint. These are some details of it. You can see the drawing and the beginnings of the underpainting. It's an oil painting on a 30" by 40" canvas. This is how I have been keeping my sanity and what I do when I am not playing Medical Ju-Jitsu.

Medical Ju-Jitsu!

Tap Dancing

Fire Walking

Western Cowboy dancing as bullets are fired at his feet

Tightrope Walking

Trapeze Swinging

Plate Spinning

Mind Boggling

Wrestling

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

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

She is in a growth explosion.

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

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

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

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

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

Someone, anyone, please shoot me now.

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

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

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

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

What to do?

Here are some options:

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

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

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

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

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

Rant, rant.

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

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