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?!

Blog-o-rama

Hosting the Disability Carnival was great fun and introduced me to many new great blogs. There are also some blogs that I consistently lurk at but have yet to put on my blog roll. Well today I am finally getting around to updating the blog roll and giving shout outs to the newbies.

Here are some blogs soon to be on my roll that you might like:

Reimer Reason. Jodi writes well and often about her son Kellen and many other pertinent issues to parents raising children with disabilities. Jodi is brilliant.

Chewing the Fat. David is a paramount story teller and just nails a lot of the issues around accessibility and many others consistently.

Chocolachillie. It's a great blog written and about a lovely mother and her family. I can't say much more about it because I am still a bit choked up by recent events. So go there with a gentle heart.

Dream Mom. She inspires me daily with her painterly prose. She is ahead of me on a path I feel destined to follow. I am grateful to her for lighting the way.

Disability Studies at Temple University. GREAT resource here. It really is a blog that keeps it's finger on one of the many pulses of the disability world.

Lovely and Amazing. Such a positive outlook on life and boundless love for a beautiful child should never be overlooked.

Planet of the Blind. Another great site dealing with the issues of disability rights from a very personal perspective of it's authors. Great writing as well.

Pathway at UCLA Extension. Ok - everyone give a big cheer and send all the positive thoughts you can, because I want this project to thrive and grow and set the bar high for a future norm of providing college education in an accessible, flexible environment for anyone with a disability who wants one. Give them your support at their newborn blog!

The Perorations of Lady Bracknell. She's smart. She's witty. She nails it every time and she writes as if she lives in the 1800's which is a period of time in the writing world I am particulary fond of - so double bonus!

That's it for today. My plan is to update the blogroll in this manner quarterly. Enjoy!

So Many Beautiful Things

I am happy to report that Ellie seems to be fully recovered from her last seizure. Mama and Dada are trying to catch up with her. We have oxygen in the house now just in case and a suction machine I don't yet know how to use - more phone calls. I have almost made it through the first list of calls though more have been added. It's never ending actually but such is life. We, of course, over this long weekend have been out and about. Among other places we took Ellie to the DeCordova Museum. I love this museum and sculpture park. It has decent wheelchair access and features contemporary art. Their annual exhibit is on now.

Ellie especially liked their pink pig. She also really enjoyed the sculptures inside the museum as well as the paintings. She, in fact, paid special attention to many, many of the paintings. I had to take her slowly through several. I write this with pride because it was one of those moments when I thought, she's definitely my daughter. We are easing back into life as normal - which means no sleep. Clifford is getting evicted from the bedroom as he is way, way too much fun at 3am. My garden is coming along and surprising me with tenacious growth despite somewhat poor soil. Ellie is blossoming too.

This picture is of Dave and Ellie playing "The Great Outdoors" game that emerged from the Signing Time Video. Dave brings Ellie on a fast ride around the house over imaginary forests, streams and mountains with song blasting. She loves this. It's a great work out for Dada. The last pic is of her at home, in the boppy (but only for 10 minutes - Mary Ann!) playing with some toys. Do ya think she has enough? Where would we be without V-tech?

Disability Blog Carnival #15: Family and Disability

Welcome to the latest Disability Blog Carnival. The theme is Family and Disability. Thanks to the many people who all submitted wonderful, interesting posts to illuminate this topic. If I did not include your post attribute it to pure human error. The topics below emerged out of reading the submissions. Thanks to Kay for the GREAT Blog Carnival image to the left. (Image description: Image is black and white. In it a one legged man stands on crutches on a beach looking out at the San Francisco Bridge next to a small child who is holding onto one of his crutches as one might do to a parents hand.) Enjoy!

Topic: Loss of Anonymity

This topic of anonymity is a BIG one for parents, like myself, of special needs kids as well as disabled adults and their families. As a parent you may be able to pass your beautiful baby off as normal (sometimes depending upon how many tubes they are attached to or how badly they were injured at birth) to others and even to yourself. I remember thinking when I was holding little infant baby Ellie, to enjoy this time because it would be the most “normal” it would ever get (total care is the norm for a 4 month old). And of course it wasn’t normal, but it could pass a little for normal and I clung to that for a while because the near, middle and far future were filled with scary possibilities and so many unknowns. I went from there to the point where I had to embrace the reality of disability publicly. In my experience, embracing it sooner than later is probably better for many reasons – the main one being you will be a better advocate and supporter of your child’s journey in a body that is not considered able and in a family that is considered different. I wrote this post about it that should have been titled “Coming Out at the New England Horticultural Show” because it was at that point I really decided to embrace “The Chair” and all that comes with it.

Jodi Reimer at Reimer Reason describes this topic very well in her post Anonymity. Here is a quote, “Having a child with Down Syndrome means that your family will never again me anonymous. You will always kind of stand out in a crowd. I don't think it is necessarily a good or bad thing, it just is”.

David Hingsburger over at Chewing the Fat is a great storyteller and this tale of an every day hero called Victory is an excellent account of the day-to-day battles people with disabilities face.

Lisa writes so many great posts on my topic this month that if you really want to know something about disability and family – just read her blog! She wrote this great post here about Defensive Parenting that she used for BADD. It’s a great post and a great topic as well as phrase – defensive parenting. For this blog carnival I also want to highlight this post titled, My double life about her experience of being happy and having to defend that happiness to those ignorant about disability. Here is a quote,

"But then there is the other life I lead, the defensive one. The public one. As much as I try to let the real me just shine on and become a public example of what is going on in our lives, I find it very difficult."
Lisa’s posts are long and thoughtful. She has a rare gift as a writer of being able to convey multiple angles of an issue. So get a cup of tea and then settle in as it is well worth the read.

Topic: Don’t speak for me
Astrid discusses families, independent living and the necessity of allowing for nonverbal people to have a voice in Thoughts on Support Attitudes and Disabled People Having a Voice. Here is a quote from this excellent post:
“Children and even adults with no functional communication skills are therefore presumed not to be able to have a voice of their own, so their parents speak for them. While I don’t expect all adults to go onto the mailing lists, it is quite different for a parent or carer to claim to speak for the person they’re caring for but actually to speak for themselves, than to adjust their communication to meet the person’s abilities and try to understand their wishes and claim to speak for themselves while having tried to best understand the person’s wants. It may take more effort from the supporter, but it enables the person to be a real person rather than a duty list - and I still hope parents and carers can appreciate that person.”

Autism Diva wrote a great post titled All’s well that ends oddly enough. In it there are many videos of autistic children, Autism Diva’s thoughts about them and therapies they are subjected to as well as cautions and concerns she has about caring for an Autistic child. I have been reading her blog for a about a year now. As a result, my whole view of Autism changed from not understanding and curious to understanding much more to the point of questioning if it isn’t just another manifestation of normal. See what you think.

In the first part of her post for BADD, Laura discusses facing her school’s ignorance about Asperger Syndrome when she was 12. Here is a quote,

"Harassment won't make a child with Asperger syndrome understand social situations any more than beating a child with dyslexia will make them learn to read. It's not like it will reverse the brain damage.”

Stephen Kuusisto over at Planet for the Blind writes a very eloquent book review of Reasonable People: a Memoir of Autism & Adoption, by Ralph James Savarese,
The Other Press. Here is quote from Stephen’s review:

"The sub-title of the book is as important to culture as the title itself: “On the meaning of family and the politics of neurological difference”. This timely book is about the Horatian life, “Life” written with a capital “L”. Accordingly it is about family and the life of the mind; about poetry and the fierce resistance to stereotypes of people with autism."

Ralph James Savarese also recently wrote a column in the LA Times titled, “You’re adopting who? A couple's decision to take in an autistic child draws callous reactions.?” that you can find

here.

Topic: What it’s like
This topic includes accounts about what it is actually like living in some part of the disability world. The accounts are all well written and thoughtful pieces that will help those on the outside look in.

Funky Mango's Musings gives us some not so random drivel in They Deserve Better about the sadly lacking state of England’s services for critically ill children. Here is a quote:
“Barbara Gelb of the Association of Children’s Hospices said:
'Children and their families are suffering as palliative care services across England cut back and close down. Even the emergency money given to English children’s hospices only covers a fifth of their running costs and runs out in 2009. We need urgent action now, with substantial new money in the forthcoming Comprehensive Spending Review.'"

Badger gives us this piece titled: An itch ... that is always scratched, yet never eased on what it feels like to have Tourrette Syndrome. Beautifully written and descriptive – I will never see Tourrette’s the same way again after reading this:
“The feeling creeps up my spine, across my shoulders, I can feel it and I wonder what will happen next. I am never sure. Sometimes it's just a twitch, others a huge squawking outburst.”

Badger follows this with a frustrating, but all too common, tale of an encounter with a new specialist who's condescending and ignorant in this post titled NHS Ignorance.

Eminism reports on "Ashley treatment" (growth attenuation, etc.) symposium @ University of Washington, May 16, 2007. The other day my blood ran cold when I saw in my site meter that a person found my blog via this search “Ashley treatment in Dublin”. Was that a parent looking to inflict this on their child? I will never know. I wish I had kept blogging about it and against it despite Trolls. To me it’s pretty clear – it’s wrong. Please don’t do this to your child. The ethical battle is still raging and Eminism gives an accounting of both sides of the argument, albeit from her perspective, from her notes taken at the conference.

Topic: Demystifying and Diversifying the Meaning of Perfection
Funky Mango gives us this post titled Too good to be able bodied about Oscar Pistorius. A double amputee Olympic caliber runner. It seems that he is faster than non amputee runners and there is a feeling that, that is unfair. What do you think?

Sam at Useless Tree writes a Taoist commentary on a recent New York Times article on Down Syndrome and Prenatal Testing in Human Diversity. Here is a quote:

"Calling the parents "evangelists" strikes me as unfair. The larger issue, however, is well captured here. It seems to me that, as a society, we are more concerned with "preventing" disability (which, of course, is impossible. Even if some sorts of disabilities were eliminated completely through abortion, there are plenty of others that occur later in life...) than we are celebrating human diversity.”
Right on Sam! Great post.

Topic: Get a Clue! Tips for Family and Friends
David at Growing up with Disability writes a post that should be handed out as a primer for all temporarily able bodied souls on how to treat someone with disability (except maybe for wiping their face with the diaper) titled Reflections on self-love, self-worth, and Family.

Wheelchair Dancer writes about her frustrations with her family’s inability to accept her disability in Disability and Family IV.

Terry writes One more thing I love about my son detailing his acceptance of disability in their family. I love the whole premise of Terry’s blog titled I see invisible people: News, views and reviews of the people and places overlooked by the world at large. Great stuff.

Emma, Wheelchair Princess, gives us these recollections from growing up in this post titled, Family Relationships. I have learned so many things from Emma that I keep in my mental, remember this for Ellie file that I am forever grateful. Here is a quote,

“And then there were the times when I would throw a fit because I wouldn’t be allowed to do something Ben or Sophie were and I was the oldest and it just wasn’t fair!! I think the worst was when I was 13 and had to have it explained to me that CP was forever.”

Dave Hingsburger over at Chewing the Fat gives us Loud Prayers where he shares an email from a woman who has received some very unsupportive and in fact devastating comments from friends and family since her daughter disabled Cicely has been in a medical crisis. This post could also go under the prejudice topic. But I kept it here because if you have ever thought that a family or the world would be better off without your friend’s disabled kid, or my disabled kid – get a clue and say a prayer for Cicely!

Lost Clown over at Angry For a Reason describes her battle in getting her parents acceptance of her disability in this post titled They just won’t accept it.

Stephen Kuusisto from Planet of the Blind writes about his family’s reaction to his blindness in Of Xanadu and Kubla Khan. Here is a quote,

"I have written two memoirs that are respectively and in part concerned with the subject of my family and the matter of disability. If you have read those books you know that my mother and father were deeply divided about my blindness when I was a boy. They knew the "facts" concerning my disability but they had little or no emotional language that might enable our family to talk about the daily realities that accompany visual impairment."

Catherine at Charming BB writes about her own unfoldment in dealing with her family in Hello Goodbye. Here is a quote,

“I am about 9 months into BB's bone and endocrine disease so things appear more "normalized". It is finally like those times when you can't really remember when things weren't exactly like they are today (like when you move to a new place and after 2 weeks of time you can't remember what eating dinner at the old place was like). I can't really remember not loading up BB's wheels and coordinating his high-powered medical care.”

Her blog has loads of great information and even templates for parents facing the special education system. I am happy to have discovered her blog via this carnival.

Adventures in Daily Living defines the difference between encouragement versus support while discussing her newly disabled father in Musings on Encouragement v. Support . It’s an excellent distinction she is making.

In the second part of this post, A Rest From Putting Out Fires, Retired Waif describes how eager family members are for her to get a parking placard--more eager than she is, as it turns out.

Cancer Diva gives us her insights into how her cancer has effected her relationships and state of mind in Care for a bottle of WHINE with that? Yes, please.

Topic: Impact of Prejudice
Kristina Chew, PhD and mother of a child with autism at Autism Vox gives us Race, Class and Autism. It’s a great post with many links to other research on how race effects the speed of diagnosis and support for children with autism including the impact on their families.

Amanda, gives us this excellent analysis about communication and processing time but also about the ways people try to put her in the box that is similar to themselves versus seeing her for who she is in “Give. Me. Time”. I especially love this post because she describes perfectly the things that happen to Ellie when people are not sensitive to her communication differences. Though Ellie is not autistic, her brain got wired up differently. She has what an able bodied person would consider a HUGE delay in response time. For her it’s a motor planning issue as well as visual and auditory processing differences. Amanda goes into many of the things that people have done to her that shut down communication versus promoting it.

Jacqui gives us her thoughts on her son Moo’s disability in Prejudice. Here is a quote,

"Cause as much as you see the prejudice staring at you on the faces of others - sometimes that same prejudice is staring back at you as your reflection in the mirror."

Paula Apodaca over at E. is for Epilepsy describes the prejudice she has experienced in “Autonomy, Agency, Me & E”. Here is a quote,

“Social disintegration often takes place once E. has been disclosed. But it also takes place when someone witnesses our seizure activity and is “creeped out” by it. Suddenly, an individual loses status within her family, her workplace, and her community. Where once her actions were admired, they become scrutinized; though her decisions were trusted, they are now suspected. She loses responsibility for important and unimportant things.”

Joel from NT’s Are Weird gives us this post titled Respect and Dialog in the Autism World. Joel's countering some incorrect, harmful and disrespectful stereotypes about autistic adults.

Lady Bracknell gives us In which we name and shame where she discusses what happens when you find evidence in your sitemeter that someone on the city council is looking for loopholes in the law... Here is a quote,

“At 12.09 pm today, someone was directed to my blog as a result of having run the following search term through Google:"When is it ok to not employ a disabled person?"See? I told you you'd love it. Ah, but wait. I haven't finished yet. It gets better.”

Topic: A Day in the life: Parenting
Billie details a slice of her life as a mother of the beautiful Miss Eden and Miss Holland in What did you do all day.

Jacqui gives us this poignant post about the lack of access for her son Moo who has cerebral palsy in Screw Holland. I just want to buy my kid a bike.

In Slow What Movement? Dad from, Kintropy In Action: parenting up hill – both ways, gives us a run down of the nightly routine and the few moments of precious Me-time. It is a well-written poignant slice of life.

Lauredhel writes

Another one to the social crime list: parenting while disabled at Hoyden About Town. Here is a quote,

"I poked around the web a little. It returned few pages, mostly from the UK, talking about childcare assessments for parents with disabilities. Almost all of the equipment links I followed led to equipment for parents with sensory disabilities, like baby monitors for Deaf parents. I did find this one off-the-shelf wheelchair baby carrier. Just one.

It seems most parents are left to either try to adapt themselves to clunky, inaccessible equipment, or to get someone to custom-make items like this accessible cot. (How many adapted items meet written national safety standards, I wonder?)"

Rob Rummel writes often and well about his beautiful daughter Schuyler. In this post Secrets he gives some good advice for new parents as well as offering up his own approach to being a dad. I think, probably a pretty great dad.

Topic: Hope for Ellie's Future

Yes, exactly – Why Not College?!

College programs for young adults with developmental disabilities are starting up all over the US and Pathways at UCLA Extension is the blog of one such program, just starting this week. There are many great links and other posts on this blog to watch.

That's it for this Blog Carnival. You can find information about future carnivals here.