Abilities Expo Boston! 9/20-22

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

Irish Firsts or 3 Beautiful Firsts

1. Ellie at Nomad's

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

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

2. Amazing salad from Rustic Stone

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

It's been a good couple of weeks. 

Pictures from the top to bottom:

1. Ellie in Nomad's just off Grafton Street in Dublin's City Center. The food is spectacular (they even had an amazing coconut Thai tofu entrée ) and the owner is lovely and made us feel right at home.

3. Dave and I on our overnight away.

2. The most amazing salad we had at Rustic Stone right of George's street. Such an amazing and wonderful food experience. Highly recommend both restaurants. 

Dublin rocks some amazing food. I was even able to get fresh squeezed green juice for Ellie at Cornucopia - which is a block up from Grafton street if you take a left after Brown Thomas.  The vegan food is great there too and the people are lovely. We ate there several times. 

3. Dave and I at our friend Anto's wedding on our overnight. 

4. The Harry Potter like and wonderful library at Trinity College. I highly recommend taking the tour which is very interesting and fun.  

5. Ellie and Dave at Bewley's which has the best atmosphere and cherry buns and cappuccinos. 

4. Library at Trinity

4. Library at Trinity College Dublin

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

"You don't have to break in two to love someone"

This is the line uttered by one of my favorite characters in a great story called "What Dreams May Come" (also a movie with Robbin Williams) and that line keeps running through my head when I think about all that is before me to manage lifting Ellie.

My back has three damaged discs already - two are properly ruptured and one is bulging but I think I actually ruptured it too about a month ago. But I didn't go to the doctor only the chiropractor because I didn't have time. See the problem already?

And I keep hearing the line only it now goes "ya shouldn't have to break in two to love someone".

I have dreaded this day and now it's here and it sucks. We wiped out all our small savings to build her a room which is still not done. I got a loan for that as well - so more debt - yay! Our car door does not open very wide so it's a hard lift getting her in and out of it that often leaves my back in bits or Ellie with a bump. This is just not right. I am exploring options of getting a used minivan with a rotating seat. A conversion van is out of the question - just way too expensive. And none of this is covered - nor is any part of her accessible room by insurance or anything. Let's hope neither of us gets laid off.

I feel like we are walking a tight rope and it's a little scary. I am done with trying to be super mom. I will still go to the gym and do the physical therapy and strengthening exercises the back boot camp people gave me. I will keep strength building. However, bird boned as always, I am at my limit. I wish I was some sort of amazon woman body builder type with big large bones that would make lifting Ellie no problem. But I am not and it is a problem that is getting bigger by the day (also great problem to have if you have read my post on counting her weight in grams). I have also thought about hiring a bouncer. I imagine some big guy just hanging around reading the sports pages, head shaved, wearing black, enormous but benevolent and waiting around patiently in between lifting Ellie for me from car to chair, from chair to bed, from bed to chair, from chair to couch, from couch to chair...you get the idea. But that is just too weird. ;-)

So how do I put my foot down and protect my back so that by the time I am 50 I can still stand erect? How do I say no more lifting and still take care of her? I haven't figured it out yet and right now as I write this I am in a bit of despair. Dave is going to be traveling soon and that leaves all the lifting to me. So it seems I may have to break in half to love someone. I am not happy about this. It is energizing in that I will once again have to fight the school people who think it's alright that Ellie ride the bus with people who won't look me in the eye and talk on cell phones the whole time they are driving her. I have to find some way to buy a used car to get the swivel seat thing maybe which means haggling with the dealership which I am not good at. As well as take on more debt which may not be possible.

I am overwhelmed. Ellie is maturing very fast it seems so we have to have that conversation with the doctors too. If this is her natural time to mature ok. BUT if she is maturing too quickly so that her final height is under 4 feet - I am so not for it. My whole goal with all medical interventions she undergoes has been to try to preserve her body to what it would have been had her brain not been deprived of oxygen at birth. The brain is plastic and resilient and nano technologies are coming along quickly. You just never know. And if there is some massive healing in her future I don't want her to end up being less than 4 feet tall - that is just not right. I want her to grow and mature - it's her right of passage. So we need to figure this out too and the truth is - other than the bone age hand scan - it's hard to tell what would have been.

Brain injuries really suck for the record.

To flip the coin to the sunny side, it's very clear that she is making progress in school. Awesome progress and happily so! She "ran" in a Turkey Trot which involved a large, loud crowd and she managed it. She didn't freak out at all. This is literally a first. She is also making progress in her academics and her teacher this year sends home excellent homework and this is a focus. Which is such a balm to me. Why not throw all the academic stuff possible at Ellie and see what she does with it? I hate it when anyone underestimates her.

I also made a connection with someone who really knows the Feldencrais landscape so we will be trying that. Dave researched this electrical stim therapy as well that helps build muscle so we are looking into that as well. It feels good to be once again looking at healing therapies versus solely medical management issues. On that front we are never doing botox again (we have been using it prevent contractures in Ellie's ankles - to no avail I might add) and I regret we did it at all. More on that when we figure this new path out.

Also, my study for my dissertation was approved and I will be collecting data soon and hopefully completing my Ph.D. in March of 2012. Completing that will be like taking a huge bloody thorn out of my side that has been there for the past decade. I hope it will feel good and won't tear too much in the extraction. Writing the lit review was like giving birth so maybe that was the worst of it.

I have to remember that these are all really good problems to have and that it could be way worse. Yet I am restless. Very restless. It's hard to stay present - it's uncomfortable every day.

I also keep remembering this story:

There is a woman that is very unhappy with her life and she goes to a yogi for help. The yogi says, "This is what you need to do, move the chickens into the house with you." She is surprised but complies and comes back to the yogi in one month and tells the yogi that her life is even worse than it was. The chicken's are always underfoot as are the children. They are also really noisy as are the in laws so there is a constant din. The yogi says, "Ok then, now move the cow into the house as well." She complies and goes back to the yogi again but this time after only two weeks. She tells the yogi that she is at her wits end. The cow is taking up any extra room they had and is nibbling on all the rugs and moos really loudly all the time. The yogi tells her, "Ok, move the chickens and the cow back into the yard". She does this. She sees the yogi around town and thanks the yogi for all the help and tells the yogi that her life is oh so much better and she is so grateful. ;-)

Right now with the construction, the dissertation, my re-injured back, the doctors appointments, the search for proper transport - it's all cows and chickens. But I suspect it will get better. Thanks for listening.

Image descriptions:

Ellie in pink winter coat looking for me as she rides Splitty last Saturday

Ellie with feathers still in her hair and ribbon from the Turkey Trot. Also, notably, siting, propped but unassisted!

In hospital...again

Ellie is in hospital again. Same symptoms, the sudden ashen face, discomfort turning into fatigue and vomit. Instead of taking her home from school to sleep, I took her to the ER. She was then admitted to the neuro wing. Turns out there is this new MRI machine that can take a quick (5 minutes) and more accurate image of the ventricles...saving Ellie a whole lot of radiation. Apparently they have been using this for quite some time, but it is the first time we have heard about it. I am thankful to have found out. The reason we haven't heard about it before, though we have numerous ER visits that include CT scans, is because they only have a very small number of machines and limited hours of operation... Are you kidding me? So much there for another post.

Anyway, she is in for the night with Dada and will get the new MRI in the morning under slight sedation without intubation - which is a big improvement and sans radiation. It's still not clear if this is an abdominal migraine, regular migraine, brain deep seizure that doesn't show up physically nor in any EEG, acid build up or a malfunctioning shunt. 6 hours into our ER visit, Ellie spiked a fever.

There it is. I am home tonight alone in a quiet house, running Ellie's vomit covered clothes through the wash and cleaning up from the morning refuse. Putting her morning cereal bowl into the dishwasher feels a bit surreal. It's weird to be here at home, alone without the people who matter most. It's survival. Dave and I trade off sleep all the time, but it's weird, in a weird just not right kinda way.

Other than that, I am too tired/meh/raw/numb/notsurewhat to proffer more than the facts.

Anatomy of a Beach Visit

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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?!

Discombobulated

It’d almost be comical…

… if the stakes weren’t so high.

Is it just me or is there always something when you have a kid? Ellie woke up with a pressure sore on the bony part of her left ankle today. I know if Jacqui were writing this post she would tag it under her label “Parenting Skills, or lack thereof” which helps other parents feel like they are doing good job. And so this post goes, where I chart our ineptitude. I’m upset, pissed off and freaked out about it. Yikes! A pressure sore. Ellie has never had one. What I know about them is that once you have one that particular area of epidermis is forever weakened and prone to getting them again. I have read of quadriplegics having amputations because of unchecked ones. If there is on thing a parent of a kid with CP gets bragging rights about it’s that their kid never had one. So much for that.

And all of this because I didn’t listen to my inner voice last night telling me to remind Dada to take off her AFO’s. The OLD AFO’s because I am playing phone tag with her AFO guy’s secretary to get her NEW AFOs on top of the bazillion other calls I must make. Here is a partial list of those calls I must make today:

to pharmacy for new seizure meds and reflux meds,
to eye clinic to set up appointment to get Ellie fitted for her glasses,
to audiologist to keep hearing aid process moving forward,
to the program that will get Ellie’s diapers paid for,
to pediatrician for a letter of necessity to get a shower chair
to medical equip guy to order said chair
to neuro doc to regroup after the seizure,
to new neuro doc to try to get an appointment,
to GI doc about potential med interaction that may have caused the seizure,
to pediatrician to insist on getting oxygen and suction kit in the house
to hippotherapy place to get Ellie started
to Ellie’s medical equipment supplier for her enteral supplies
to insurance to get another emergency seizure kit
and on and on and on and on

Imagine you have to call your credit card company and navigate their automated phone system and wait at least 30 to 40 minutes to get a person then add more waiting time for calls back and more calls for when the nurse has to then check with the doctor and then call you back…

So if you are ever wondering how a mom of a special needs kids spends there time – there you go – a very partial list.

Is it me, or is this insane to the point of comical. Or am I losing it because her seizure has put me over the edge. Maybe the random crying is a clue. Ok – yes this is a whine and a rant.

So other parents out there, of special needs kids and able bodied ones, am I crazy, or is there always something?

Update: By the way, Ellie told me it was not an aowie and it does not seem to hurt her and had come down a bit, 7 hours later. Secondly, we just came back from picking up her new AFO's and our man there told us that because the skin was not broken it would be alright and and potentially be without further issue. Let's hope he is right.

Botox V. Spasticity: Round 2

I have the Botox Blues.

I have held off writing about this for a bit for a few reasons but the main one being that it’s painful for me to relive in the retelling how I am making Ellie's life uncomfortable. Cerebral Palsy is never so in your face as when you are fighting off the negative, debilitating effects of spasticity (increased tone). Spasticity, in all of it’s glory, is the brain’s inability to stop from constantly firing neurons at Ellie's ankles muscles and telling them to flex (though it could be worse some kids are spastic or have high tone all over). I describe it in depth in this post. Ellie's brain is constantly sending signals to her ankle muscles to flex and in doing so deforming the bones of her feet and legs as she grows. Hence the Botox treatments – a stopgap measure short of a painful surgery to get her on those twisted varus feet. The Botox acts like a block in the muscles to make them unresponsive to the neurons telling them to flex. In fact they call getting this treatment a “block”. Fun business all round, no?!

Three weeks ago we got Ellie her second round of Botox. I described the procedure and all the major players in round 1 here. I can’t stress enough the pain management aspect. Those needles are not small and must go deep into the muscles to deliver up to 2 cc’s of the Botox. I can’t tell you how hard it is to watch Ellie go through this. She feels the pain even with the Versed and the Emmla cream but doesn't care and doesn't remember 30 seconds afterward. The Versed, as advertised, leaves her smiling minutes after the procedure. This is followed by three sets of serial casts to stretch her feet into more neutral positions so that we can get her standing. I describe the casting here, here and here. Again my thanks to this man, Dr. Harry C. Webster, who is at New England Medical and is well worth seeing if any of my readers have children in need of a great orthopedic (technically he is a physiatrist). We waited six months to see him (it was well worth it) and then he expedited Ellie to the top of his list because she has the potential to walk. His goal is to get her walking and even running. He cares about the whole child and is dedicated to going many more extra miles than most people will ever go for the children he treats. I am thankful for his enthusiasm and positive thinking and for seeing and aiding Ellie's potential.


Ten days after the Botox she got her fist set of casts. This time she picked blue much to the cast technician’s surprise. He kept asking me what color she wanted and I kept telling him to let her pick and asked if he had swatches or packages that were color-coded. He did have color-coded packages and this is how Ellie picked blue. Sheesh! I took her by myself so there are no pictures to share. This week she got her second set of casts and next week she will get the third. Her knees hurt her after the casting today. She has trouble sleeping in them so we are very tired.

The good news is that after the casts came off her feet were less turned in and her skin was much better than it was the last time. The big push will be to get her standing so that gravity can help her hip development (her hips are slightly efaced and I don't want that to get worse) and help her build up the muscles in her legs to be able to support herself while standing. All this standing is going to have to be balanced with tummy time though because I am watchful of her spine twisting. New School let us borrow an AWESOME tummy time wedge. It has Velcro straps that help keep her in position and from rolling off. Ellie actually likes this wedge as long as I keep her entertained – fair enough! The reason I am so concerned with tummy time is because I believe that logic that goes like this: if someone can’t hold himself or herself up on their own in sitting or standing, if you force them to be in those positions, their spine will twist in the process. Have you seen pictures of people with CP who lean over to one side - well it's because they are being managed to sit at all costs - at the cost of a straight spine and at the cost of their crushed organs that get compressed in the bent over position. So it's a fine balance that I am watching like a hawk. If Ellie is too weak to stand and her spine starts to bend, more tummy time and less standing. That is the way it is. I have to patience and go at her pace - period. The trade off of a twisted spine is not worth it. I truly believe that she will get to the point where she is strong enough to maintain a seated position and even stand and walk. When that is depends upon her. She has come such a long way from her early days when she couldn't even roll over or hold up her head at all. The Scotson Technique has helped her the most in building up her strength by restoring her circulatory system via creating a stronger diaphram. It's slow going, all this healing of Ellie's brain, but very worth my time and patience. Don't ya think?! Look at that face! ;-) (The pic is of me and Ellie blogging last week before bed.)

I swear navigating the bodily pitfalls and trenches of cerebral palsy for my sweet Ellie is like walking a razor's edge. Luckily walking on razors was well covered in my "How You Too Can Walk On Hot Coals" class so I have decent technique. Just call me Maharishi Yogi Mama.

It’s just Cerebral Palsy

It could be way, way worse. And here is how, but don’t expect a list of other disabilities.

What could be worse than having a disability like, say...... Cerebral Palsy?

Here are some things:

Being mean-spirited and spiteful

Being angry at your life and fate for most of your life and missing out on all the beauty.

To lack compassion and empathy for others

To be ruled by fear

To hate

To indulge in rage especially against another

Being a parent, who holds back their love from their child.

Constantly focusing on what’s lacking and not appreciating what is working

To be ignorant (and I don’t mean IQ).

To never be of service to another human being or animal that needs it, especially if you have been asked for help.

Ok – so there is a start to a list of things that would be way worse than having a disability or parenting a child with disability. It is a list of things I have seen in people and myself sometimes chronically and sometimes infrequently. Ellie has CP but does none of the things on this list.

Who is better off?

Even bigger picture

Before I knew about the field of organizational psychology I quit being an artist and started off to find a career I could feel good about making money at. On this search I got a job at a group home for juvenile delinquent boys ages 13-19 called Our House. It was an amazing place started by a former flower child and innovative peace loving thinker who devised a method of holding the boys accountable for their actions that did not involve any physical take downs or restraints. The doors were not even locked ever. It was a great experience. I started a GED program and taught art and Art and Math classes as well as set up a computer room for their use and to learn basic computer programs. They were usually with us for 4 –6 months and during that time you would see them get to become kids again.

The sad part was that they would be sent home to the same drug addicted parents or rough neighborhood and most of the time you would hear that they were back in lock up or worse. I realized it would burn me out to be working at this level for the long term and decided that I wanted to work with whole systems to change them for the better.

The focus on the big picture of our society’s mistreatment of the disabled seem to be missing from the conversation that starts with the question, “Should we resuscitate preemies and who should decide?” and travels through to asking, “What happened to them after age 2?” But is has not yet landed on my question which is,

“What if society actually supported and accepted its disabled as a valued and important part?”

This is a discussion of isms.

Disability is an ism. The fact is that society does not tolerate isms well, especially those in the minority. It balks at those that do not meet up to aesthetic standards of beauty and usefulness. Of course these aesthetics are shallow and ruled by ignorance and an assortment of negative drives. A critical cause behind outcomes like the case of Ashley Treatment occur because society is in general not supportive of people with disabilities in just the same way that corporate America is discriminatory against women and people of color. Now of course there are tons of people who are supportive of the disabled - but on the whole society is not. I know this because when people or organizations are really committed to something and supportive of it they act on it and put money into it. Like I said, many NICUs are the star earners/cash cows for hospitals so the bias is to keep em running and keep expanding our knowledge of neonatology – which is a great thing. But it could also explain whey there is so little hoopla and understanding of the outcomes of former preemies who are at home and needing support and not bringing in huge sums for healthcare providers for critical treatments. I have found that I have to fight insurance for the chronic conditions that Ellie has. Cerebral Palsy for instance is a chronic condition and requires lots of equipment, which I have to jump through a lot of hoops to get.

I have also found that funding for early intervention programs and care attendant hours for children with special needs whose parents are in great need of some help is very limited and getting ever more so as congress cuts back each year. Why is special education in mainstream public schools such a problem (for a great blog on this check out Charles Fox)? Most school districts don’t want to pay for special needs education and nickel and dime and under deliver the child and parents ad nauseam.

It seems that the amount of support diminishes as the disabled person ages. There also seems to be a hierarchy of special needs that get funded. Blindness gets the most money and then deafness. I think brain damage and cerebral palsy are at the bottom. So the more disabled you are the less help you will get over the course of your lifetime.

There needs to be discussion about changing the system that has a dropping continuum of support based on the assumption that people with cp can only be helped up until age 3 or 4 or in child hood. The assumption also holds that the disabled have nothing to contribute and that they are a drain on the system. God this bothers me and couldn’t be less true. I have read so many blogs by disabled people who are absolutely brilliant but can’t get a job to literally save their lives. It’s so ass backwards.

It is the ignorance and discrimination towards the disabled that sets the back drop for the discussion about preemies and their outcomes whether it’s acknowledged openly or not. I think it is why the preemie myths prevail because we don’t want to deal with our ignorance on the whole of disability. I read on one blog of a disabled person that disability was most simply a matter of equal access to all parts of society. If there were equal access there would not be disability or racism or chauvinism or any number of isms.

Also it is important to realize that people with disabilities have a lot to offer the world and are often not given the chance.

It’s the mindset that needs to change.

When you have a child who then turns out to be disabled, your mind set is forced to change. And of course you love them. So there you are, loving this person who is different from most of your friends kids. But you think they are great and they are and they teach you so much and you change at the deepest level. This is the context I am coming from when I discuss Ellie and how great my life is because of her. Because of her I have learned a new language and with it gained an entirely new perspective I could not have understood any other way. I am so much better even for the wear and tear.

The scary part is that the backdrop for Ellie’s life is a world where the disabled are discriminated against - a lot. And that is terrifying to me. I want people to read our blog and be able to understand that disability has many faces and many gifts. This is not trying to make lemonade out of lemons – it’s just the truth.

Home

Home at last

Here are some pics of her from the Hospital. I think her head cloth makes her look the girl with the pearl earring, sans earring.

The good news is, it wasn’t seizure activity. The bad news is, that it is probably an issue with her eye muscles which we will be exploring with her ophthalmologist. More fun. Glad we are catching it early and so, so, so glad it’s not seizures or a shunt malfunction – both much worse things.

We came home and Ellie took a two-hour nap on Dada on the beloved couch and then we popped her in the also beloved B.A.T.H. Bath. She was delighted and a happy girl having Mama’s and Dada’s full and lavish attention. Her eye is still a little wonky at times but just knowing it’s not her brain seizing or getting injured due to hydrocephalus makes it a lot easier to handle. I worry for her vision – she is so visual. Will keep you posted.

Deepest Fears, knowing too much, positive thoughts

I have been blog hopping lately to some new places in the blogosphere. It’s all Jacqui’s fault for making me think about this and having such interesting friends/links.

The journalist reporting on the story of the 21 weeker is either misinformed, receiving bad information or not understanding the information s/he is receiving to imply that the child will come away from the whole thing unscathed.

I have been reading more preemie stories here and here, here and here. I am inspired by the mom’s in each of these blogs as well as by Jacqui. It’s good to see how other parents are confronting the issues we face. I learn a lot from each of them and take courage in their tenacity and humor in the face of the unknown.

I have also been reading neonatologist’s blogs here, here, and here. I am glad to be aware of them. But after a few days of taking in all this new information in this new vista of the blogosphere I have discovered I am quite full. Full as in you have just spent a couple of hours in la Louvre and need to lie down. Too. Much. Information. Must. Shut. Down. Now. System. Overload.

Here is my question to my vast readership of 10: Is it bad to know too much? Is it good to follow these debates and be so informed, especially since I can’t change the past and am committed to the path we are on? Is it? I would love to hear your opinion on that.


But – gaaaawwwwddd. Reading these discussions scares the crap out of me. And for the record, I think doctors and the press could do a heck of a lot better job at painting a true and detailed picture of sequalea of hypoxic-ischemic encephalopathy and of prematurity. But once you are where we are, four years plus in, is it really good to know so much?

I am blogging about this however because there are some major problems when it comes to prematurity.

#1 is the myth that preemies mostly do ok and actually have gifts like being extra musical, extra smart, extra wise. We heard all of that crap in the NICU. I have never found any study to bear any of these out. I have mostly seen many preemies with mild to severe issues especially cerebral palsy. Other supporting myths for the greatness of the preemie experience are examples of famous preemies like Albert Einstein. I have no idea if that is true but if it is he is a very rare case and he most likely had
Asperger’s Syndrome.

#2 Because of #1. preemies and parents who do not have good outcomes are certainly not spotlighted as much in the media or even thought of as important voices in hospital systems and their parent support groups as are the parents of preemies who did great in their NICU course and then go on to "catch up". Why are we so unrealistic about preemies? Maybe it’s human nature to want to focus on the positive examples and ignore, deny, shunt away a reality that is not so positive. Maybe insurance would not just give NICU's the green light when it comes to their tiny patients of the statistics were better known?

#3 Because of #2 many parents of preemies don’t get the support they need from their communities. When Ellie was born I can’t count the number of people reassured me all would be well because they knew of an adult preemie who turned out just fine. They did not mean this is in a "so what is your problem way?" but it did give me a lot of unrealistic expectations followed by guilt over the fact that things were clearly not just fine. Also, the head job #2 does on the parents can be debilitating in terms of them facing up to the reality of their child's issues and even feeling like they can ask for and do deserve help.

There it is. How does sadness and fear of the future and the current fatigue (the GSTTN have been kicking my ass this week) help me get through the day? Not at all.

Enter positive thinking 101 survival technique. An acquaintance of mine just posted an entry on another blog we both contribute to about his happy life and mental discipline of replacing any and all negative thoughts with positive ones, for example something he is grateful for. This in theory and in practice is an awesome thing to do. I’ve known him for a long time and he always exudes this sense of self that is both uplifting and rock solid. Discipline is the only ways to achieve that as this world is designed to separate the individual from such things.

Here is my grateful and positive thought that I am going to use to remind myself in the face of my deepest fears regarding our life and Ellie’s future:

I love these two lovely and amazing people that love me back every day unconditionally. That’s alotta love going on. It’s pretty cool and something I never had before on a daily basis. On top of that they are both really cute and funny and sweet and even think I am great. Life before them, though it looked pretty successful from the outside (education, job, career, health) was in actuality pretty lonely on the inside.

And this is not a rationalization. For the few friends of mine that read Ryn Tales and know my background and travails growing up it will make the most sense.

I hope this post offers some resources to understand the true outcomes of prematurity. I also hope that anyone reading this will understand, that having a preemie who then becomes a child with multiple disabilities is not the end of the world. It is entering into a new one with new challenges and many things to learn. That is the, please don't feel sorry for us part. And though I would not wish the experience on anyone, you could do it too if you had to. Finding that you have that kind of inner strength is pretty incredible.

Finding Hope

Hope is a thing that we must tap into however and whenever we can. Be it through a muse who inspire us, a loved one who encourages us, a stranger who enlightens us, or we simply find evidence contrary to our greatest dissappointment.

To this end I offer you this brilliance from Marianne Williamson (though in cybermythology this is often credited to Nelson Mandela):

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented, and fabulous?

Actually, who are you not to be? You are a child of God. Your playing small doesn't serve the world. There's nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We are born to make manifest the glory of God that is within us. It's not just in some of us, it's in everyone.

And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others."

From Marianne Williamson, Return to Love (1992, hardcover p. 165, paperback pp. 190-191): http://www.marianne.com/index.php

The Bravest Little Girl

Ellie playing with Pooh after her nap.
This post is dedicated to Ellie, who is the bravest little girl in the world and has had a rough day. The past few posts I have joked about this or that and in truth, it has been somewhat of a gallows humor. This blog is supposed to be about parenting a child with disability. Sometimes I get a bit punchy before facing really tough things. Things I would not choose to face in a million lifetimes if I had my druthers. And I have been facing today for a couple of weeks. Now that we have faced it, I can write about it and maybe save another poor mother or father some trouble. It’s not that we mothers of special needs kids are not informed. It’s just that each “intervention” carries an element of unknown consequences. When we were in the NICU we learned early on that all of Neonatology involved choosing between the lesser of two evils. Today we made such a choice and have lived to tell the tale.

To tell you what happened and why we did what we did I have to make sure you know some basics about cerebral palsy. For those of you already living the dream skip to the next paragraph. All children with cerebral palsy have varying and mixed degrees of Hypertonia and Hypotonia. Hypotonia means your kid has weak muscle tone and is “floppy”. These kids might have trouble holding their head up and sitting, etc. Kids who are hypertonic are stiff and in extension (arms out, legs out) a great deal. This is called spasticity. Dystonia is when you go to do something and you go into a rapid extension. Ellie, lucky girl, is Hypotonic with an overlay of Spasticity in her legs. To compound things, the act of growing can make spasticity worse. The interesting and awful thing that happens when the brain is damaged is that it turns things unendingly ON. In Ellie’s case the Equinovarus deformity from the spasticity in her ankles is due to muscles that are constantly being flexed and pulling her foot in. Try it and see. Flex one of your major muscle groups like your calf muscles or bicep. Hold it for as long as you can. Sucks, huh? But now you have a modicum of an idea what spasticity feels like. In a growing child such a thing can deform limbs. You may have seen people with CP who have a hand that is turned down at the wrist at a seemingly impossible angle and held close to the body. That is the result of spasticity, the constant firing of neurons to the muscle which in turn pulls the bones and ligaments permanently out of place to the point where eventually there is a complete loss of function.

Ok – there are some cerebral palsy basics for you. Today we went to the Floating Hospital in Boston and had Dr. Webster perform a Botox treatment on Ellie. Botox you say?! Yes, there is actually a more noble application for Botox than making sure no one sweats at the OSCARS and Reese Witherspoon’s pretty brow is not furrowed.

Dr. Harry Webster is on his game and passionate about his kids. He did the whole thing with good pain management and a deftness that comes only to those surgeons that are truly talented. He was in Flow. Which is just where you want someone to be when he or she pumps botulism into your kid’s leg muscles.

Some days I can’t believe the details of my own life. As an expectant mother you consider things like the kind of diapers you will use, the books you will read to your kid, the food you will feed then. Anyway, I know you may not know me well but these are words of high praise for a doctor. We are not the type of people who just blindly do what the doctors tell us. We have been putting off this treatment for two years. There are some interventions like getting Ellie a Fundoplication that we have outright refused. (I really need to write about g-tubes, eating and nutrition and fundo’s).

If you are facing Botox injections with your child, I really believe that deciding when to do it you should consider two criteria. 1. Is your child ready to walk? 2. Are they at risk of permanent deformation and contractures that will ensure they never walk?

Ellie met both criteria.

A word on Pain Management:
Two years ago, among the many ‘signs’ that it was not the right time to give Ellie Botox was the fact that a doctor at another well-known hospital scheduled the treatment for her with NO pain management at all. After having seen the procedure today and my child’s reaction to it, I can tell you, providing pain management is critical. Getting Botox is very painful even when sedated. Botox is shot directly into the muscle. Ever had a tetanus shot? Multiply the pain of that by 100.

Our pain management for Ellie consisted of 3 things:
1. Emla Cream. This was put on the exact point of the injections including the shot of Versed. Like, most NICU babies Ellie has had over 200 needle sticks, so why add to that?! That said Emla only works on numbing the skin, not the muscle, which still hurts like a bear when poked with a needle. Again, think Tetanus x 100.

2. Versed. This was injected directly into Ellie’s thigh muscle and made her drowsy and is supposed to make her forget any of this ever happened. As I write that it sounds awful and if you click on the link and read the description you will think I am awful too to ever let my kid have that. I feel like some psychotic parent covering up their crimes with some designer drug. However, after seeing the Botox injections, I am glad she will forget because she would have never forgiven me otherwise.

3. Over the counter Ibuprofen the minute we got home. Dr. Webster said the injections are the hard part and once the Botox is in, it does not hurt. I wish I had Reese’s number so I could ask her directly. Does that stuff in your forehead hurt right after? And if so, for how long?

So you might be thinking, why not put her out completely under general anesthesia? Good question. Our answer is that this is counter indicated for anyone with any brain injury. When kids like Ellie go under they can be set back for weeks and possibly months in their functioning and development. It takes a long time for their brain and already weakened bodies to recover from general anesthesia. We minimize Ellie’s exposure to anesthesia as much as possible. For example, we have never had to give it to her for MRI scans of her brain. During MRI’s there can be no movement. We have been able to distract her with mirror balls and light and songs and whatever it took. For her ABR’s (brain response hearing test) we have been successful at scheduling them at naptime so she would sleep during the test. My main point is that sometimes medicine becomes dogmatic. I have a bias against younger practitioners who still think they are god but are too afraid to think outside of the box. For example, always pairing a g-tube with a fundo even if it ensures that the child will not eat by mouth. If a doctor’s answer to your question is ever, because that is the way it is always done, or any derivative thereof, find another doctor who thinks for him/her self and considers each patient a unique case.

As parents we have questioned everything and educated ourselves so we could make the best choices for this little soul that is in our care. No child deserves less. When we don’t know what something is, we educate ourselves. The only prerequisites we have are our abilities to read and think. There are a ton of resources on line (see the links in this post). We have bought many medical texts in order to catch up with the doctors and understand the choices being laid before us. We had to because our “Yes, do that” or “No don’t”, especially when Ellie was in the NICU, meant the difference between life and death for her. So we wanted to understand our choices. We found that the worst doctors don’t take into account the patient’s whole life. When they first told us about shunts I had questions about the tubing that would go into Ellie’s abdominal cavity and it’s effect on her reproductive organs. That stopped the team in their tracks.

Isn’t this a mother’s logic? I think about Ellie’s whole life from birth to death and I don’t want her choices limited because someone was not being thoughtful enough to consider all the implications. (Incidentally, this is also makes me a very formidable chess player that Dave still has yet to beat.)

We have also learned so much from other parents. In the NICU two very wonderful people who were a few months ahead of us in their journey gave us some very good advice. C and W told us to ask each question three times to three different people. Best advice ever for any parent facing a long NICU stay. We still do this. The thing is, you always get three different answers. Medicine is not an exact science that is why they say practicing medicine. Woe to any parent who does not participate in the thinking process of solving their child’s issues.

Upon climbing off my soapbox, I can tell you that Ellie is sleeping now. We will see if the Botox works. The next step is serial casting to get her feet back to neutral so she can stand on them. I know Ellie would much prefer to be able to ambulate or walk to get her toys versus having to roll a few feet, look to locate, and roll again. Ellie is a great roller but when you have to roll to get stuff you can get stuck on other things like couches and corners. Ellie wants her independence; this I am sure of.

Hopefully this path with Botox along the way will get us there. It seems the lesser of two evils. She is braver than me. I had to keep from sobbing during the entire thing. Once it was over she smiled at her Daddy and the sun shone again.

Handicap Placards and New Car Purchase in Summer's Heat

Metro West is a low land cauldron of summer heat. Air conditioners drone as the heat and humidity compete for what little oxygen is left in the atmosphere. People move slowly and perspire just the same. We take refuge in our ramshackle house that does not know what style it is and is perpetually in renovations. Walls knocked down in order to be able to see her at all times and get to her quickly if she is choking. Doorways widened to accommodate the "chair" and all windows and cabinets with lead removed. She already has brain damage - why add to the problem. Still it is our home - ours. Our refuge from the heat and outside world. It is quiet and accommodating and filled with the good vibes of happy past inhabitants. Babies born in the downstairs tub. Hand prints of children in the foundation. Nicks in the door frame from forbidden inside ball games. All happy bits of laughter and love haunting our house with a great benevolence. We are peaceful here.

The winds of change are blowing a cooler wind our way. This week we were able to acquire a car that will fit "the chair" and allow all the discs in my back to stay in place while getting her and out of the car. Now I sit higher on the road when I drive and in doing so feel less back pain. It took 7 months to get the handicap placard. The clerk at the RMV told me when I called after the customary month that the website says it will take that they were running two months behind and to call in two weeks. She said that they were usually two months behind. So I called two weeks later and another clerk told me that there was no record of the paper work. This put me over the edge. The RMV makes it a bit difficult for a handicap person or caretaker of such a person to get a handicap placard. First, you have to get a signed form from your doctor. This I have no problem with. But I do have a problem with the fact that it expires after one month. So tell you doctor not to date it. I got my first form signed by my child's doctor in December and then my child got sick and we were house bound. By the time I could have gone to the RMV it had expired. So I started again. So that is the first thing wrong. In February, I brought my daughter down, forms in hand only to be turned away by the clerk who jotted down the number of the medical advisory office and said I would have to come back to get the picture taken in another month once I was sent a letter telling me to come down. OK - a disabled person has to go to the RMV TWICE in order to access handicap parking spaces that were created for them! That is ridiculous. I should have right then and there asked to speak to a manager.

After one more month I called and that is when the clerk told me all of my child's records were lost. This is when I really got mad. I asked to speak to a manager. I communicated to her my story of woo in a near hysterical but strangely crystal clear coherent raised voice. She told me the clerk should have never turned us away when we went down there. I could hear an older man in the back ground expressing his outrage at our situation in a gravelly Boston accent in the background. In the end I had to have my doctor fill out the forms for the third time and fax them to this manager. She alerted the RMV that I would be coming down again and told me to ask for the manager when I arrived. I did so and upon arrival and a 2 minute wait they took Ellie's picture right away. We were out of there in 20 minutes. The placard arrived two days later. So there is some humanity in the RMV - you just have to find it.

For all parents of a disabled child - know this: if you have a handicap placard and you are buying a larger car to accommodate your child and all their equipment needs the law exempts you from paying sales or excise taxes. You will need your doctor to sign the RMV form 33 and bring it with you when you purchase the car. And if the dealer tells you they have never heard of it they are ignorant. Here is the link to that webpage: http://www.dor.state.ma.us/rul_reg/dir/dir_03_11.htm

The only reason we knew about this was because another parent of a disabled child told us. Take advantage of this!

Ok - there is my rant for the day regarding the RMV.