*Ten Ways To Diss a Differently Abled Person

1. Make sure to leave your empty shopping carts in the special needs parking space.  Hey, no one was using it anyway.

2. Always park in the special needs space and if that is not available park as close as you possibly can to it.

3. This is an especially good one.  If you have a wheelchair user in your family that you see regularly, don't even consider making entry into your home more accessible.  Because you really don't have the time to consider affordable ramps like this.

4. Ignore the wheelchair user in all conversations and only focus on communicating with their parent or the able bodied people around them.

5.  Don't bother buying the child with special needs anything but grey utility sweatpants and sweatshirts for gifts. After all, isn't that the best thing to dress a person with special needs in?

6. Ask a person who uses a voice output device a question but don't wait for the answer.  Just as they have completed their response after laborious motor planning, turn away and miss the whole thing. Do this several times so that your sincerity really shows.

7. Turn around and frown at the differently abled person when they are participating in community gatherings, because they are ruining your day.

8. Additionally, make sure to shoo your children away from the wheelchair user on the playground, because (loud whisper) what if it's catching?

9. Yell at a parent or caregiver of a wheelchair user for parking in the special needs parking space because clearly the caregiver can walk.  What right do they have to use that space....even if the wheelchair user is actually in the car with them (at the pharmacy picking up meds that the pharmacist was actually coming out of the store to give them)?  But still those spaces are for handicappers only.

10. Use the word "retard" in any context.

Note these top 10 are not in order of importance - they are all important.  Also this list is garnered from my own and my friends experiences. For all of those close relatives and close friends who have considered ramps and slowing their pace down and are just sensitive in general to their differently abled relative or friend, god bless you.  And please consider holding classes for the not so naturally compassionate.

*You'll have to forgive my sarcasm in this post. A situation similar to the 10 I have listed above just happened to us this same day.

End Game

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

Additionally, every little tiny extra thing to do feels colossal. My dissertation journey is in the end game. I just sent off a completed draft of the entire thing - 278 pages to my committee....

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

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

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

Livid

Livid = a perfectly round, white, raised area of skin on Ellie's ankle = pressure sore.

Livid = me after hearing that, once again, Dr. Webster did not put enough padding over the bones on Ellie's ankle.

Now, my baby, is the proud owner of a matching set of pressure sores. One for each ankle.

I feel sick as I write this. GRRRRRRRRRR

Lessons, what are the lessons? What can you learn from my lameness? Oh, here's a few that also fall under the welcome to my world category:

#1. NEVER allow one parent to go alone to a casting procedure no matter how many other doctors appointments you are balancing with work. I went alone the first time and Dave took Ellie alone to the second. There is just no way to advocate for your kid when they are freaking out about being casted such that you are entertaining them so they stay still and so that they are less freaked out, while in the meantime the doctors are telling jokes to one another as they forget to pad my daughter's freaking ankle!!

#2. NEVER forget lesson #1.

#3. Just because a doctor is good in the past doesn't mean they will stay that way. I am so dissappointed.

#4. It takes roughly 6 months for a pressure sore to heal - we learned that from the first one - and I think I am being generous there as it is still not totally healed.

#5. Something about never losing one's vigilance and other things I am saying in my head right now as my conscience gives me a substantial beating.

#6. Maybe if a doctor screws up once you should fire them and find someone who knows how to properly pad a cast! Maybe something about forgetting about doctors altogether.... not sure if that is realistic - but I am really mad right now.

After Action Effects:

- Further muscle atrophy - we are 6 months and counting in now - looking at a year total

- Loss of faith in doctor

- Massive mama guilt

- Continued dusting of unused gait trainers

- Ellie losing her excitement over using said gait trainer to make her way around the house on her own speed.

- Potential decrease in bone density for lack of weight baring

Above is a picture of the the pressure sore she got the one time we tried serial casting. It doesn't look much different today.

I am going to take her to as many hyperbaric O2 treatments I can afford (at $200 a pop that means not all that many) to see if that will help. Also posted is a picture of Ellie in her gait trainer, months and months ago. I need everyone to remember that she used to be able to do that. I need to remember that we used help her practice walking in her gait trainer 4-5 times per week. I need to remember we even brought it with us to my mom's one time to show them how well she was doing with her walking. That during that same visit she laughed and walked in her "Pony" for hugs. Just this Sunday Dave, Ellie and I were at the mall early in the morning and Dave and I were commenting on how quiet it was and how smooth the floor is and how we would have to take Ellie there to practice walking as soon as her cast was off. So much for that plan.

Poor Ellie.

I feel like the worst parent in the world.

I am so overwhelmed right now.

Illigitemus non carborundum est

Ellie is in the midst of another migraine. The bad kind - where you puke and then are just in agony or are in agony first...etc. She woke up at 4:30am last night rigid in pain. Her feet had such violent clonis (tremors) that I couldn't get it to stop. The Tylenol did nothing but the Motrin did. For the first time I gave her Zofran after she couldn't keep her rice milk down. I was in Mama Warrior mode. Ellie has just gained back the 6 pounds she lost and I was like, "I am NOT going down like that." And whipped out the Zofran which I am now a fan of (it's an anit-nausea med). Twenty minutes after receiving it she asked for applesauce. Though she ate very little, she kept it down and was able to eat after a couple of hours and keep it down. No more abdominal migraine weight loss at least.

Her temp has been struggling not to climb so I am on Tylenol/Motrin watch all night. Her timing is perfect as Dave is away on business. Sigh.

I wish I knew what the trigger was. There are triggers for migraines right? Maybe I am just looking for some mythical point of control.

Last week was school vacation and Ellie had a blast and slept well. It was low key but great to get to have so much time with her during the day in our sunny home. Her latest obsession is the iPhone. I taught her to sign i phone and it's the first thing she wants in the morning and last thing at night. We make videos and take pictures of her toys. We take videos of people she loves doing fun things they do with her to make her laugh. So what's not to like? It's a good bargaining chip too to get her to do other things, like her math homework!

She is also into They Might Be Giants. That's right TMBG for all of you who were fans of them in the 80's they now do kids music. Ellie's favorite and only TMBG cd is "Here come the ABC's". She is also obsessed with this which is a very welcome change to Signing Time and Baby Einstein - not that those are totally out - but very much in the shade. Yay.

Warning, parental side effects include: incessant humming of Flying V's and "F is for fun!" and wanting to "Go, go, go for G!". The tunes are very catchy. If you don't believe me, check it out here.

It's really nice to see her enjoying two new things that are less baby-like. Her interests are beyond what her motor control will let her do so she still plays with toys she has had for 5 years in some cases. They comfort her and the way she plays with them changes...but still. I am hoping that the iPad will one day include a camera. It's the perfect size for Ellie. At least it looks like it is. The iPhone is great but a little on the small side for viewing. I am wondering if she has gotten eye strain from it and that is what caused this latest migraine episode.

Also, to those of you out there saying they iPad is for grandmas, I have a few comments.

1. Get your head out of your butt and realize that saying that is derogatory to women.

2. It's a truly amazing piece of equipment. For proof go here (warning - you may be convinced and you may laugh because this guy is hilarious).

3. Apple are one of the only big computer companies working actively (have a designated team) on assistive technology for the disabled. I support that and so should you! Assistive technology is the access point to the world for Ellie and other's with similar issues.

Sleep, Bad Meds, and the Bus

September was a blur of no sleep and work. And even now I don't have any business blogging. BUT so much has happened...

First, we figured out that her Protonix, which our insurance company will only pay for if we get it through their compounding pharmacist, was off. Dave took some out of the red bottle in desperation because Ellie has not been doing great since late August when she started this new batch, and discovered it had a distinctly orange hue. He called the pharmacist and they said to stop giving it to her...scary, no? I am sending it to a lab to find out what the heck it is and not putting her back on it. To say this freaked me out is an understatement. I am holding judgement until we find out if it is Protonix or something else...ugh. The whole thing has just made me realize I have to get her off all meds. I have met mothers who have discovered that the meds they are giving their children were made wrong by the pharmacy. CVS lost their compounding license because of errors in making the meds. In some ways it seems like only a matter of time before this happens and one day...I can't even go there. ugh. I wish we could get it through our local pharmacy because they are a mom and pop shop, they know us, they care....Blue Cross Blue Shield paid allowed this.

Since we discontinued the bad Protonix she has been sleeping MUCH better. I also started her on two homeopathics: Nux Vomica, for nausea and indigestion, and Gelesium for it's overall soothing effect on the entire nervous system. It may be working...she has slept through the last 4 nights....but of course now that I write this...anyway...am hoping I can replace the meds with homeopathy or anything else, like even healing what is causing her to need these meds...yes, her brain. But, it's good not to forget this is our goal, to help her heal her brain. Since Obama lifted Bush's bans there has been lots of progress in this area spurred on by all the returning vets who have sustained head injures fighting in all the bloody war zones....

Second, Ellie is going to take the wheelchair van to school this Monday for the FIRST time....!

The good here: she is more independent and we get 3.5 extra hours a day (that we used to spend driving her) to work. Since I am always up late doing that work I don't get done during the day, and I am not a trust fund baby, this is a good thing. The fact that I could REALLY use the extra time makes me feel guilty about even suggesting she ride the bus because it's so self serving, which is something I try to put aside being a parent. BUT she is going to be 7 in November. I rode the bus from age 5 on and am none the worse for it, though how would I know, really? See the back and forth? The mind is a terrible thing sometimes...

The manager of the bus company came to our house this Saturday morning to see if Ellie's Rodeo would work in the wheelchair van. His name is Juan. Juan has a big smile and kind eyes. He's a dad. Ellie gave him a BIG smile the minute he walked in the door and he addressed her directly. All great signs. She will be the youngest on the bus and Juan has it set up that she is last on and first off, god bless him! She will have an aid who is trained in seizures and CPR. The other little girl riding the bus has a nurse...seems like it might be ok. We are going to follow the van to and from school on Monday to be there for her if the ride was bad. If she is really upset by it, that may be it. She has riden in a wheelchair van for school trips so that won't be a first. Juan assured me the aid would talk to her and help her with her toys...ugh.

I am equal parts freaked out (about her safety and her emotional and physical comfort) and hopeful that it will be ok. She will be 7. It's time...right? We will see.

Picture: Me and Ellie in Dublin City Center, Ireland this August.

Awakenings and Weaning Off Depakote

This post is about weaning Ellie off Depakote and has a metaphysical edge to it. So for those of you who are not philosophy fans this post is not for you. Just skip it. I however have my Bachelors degree in philosophy and ever since getting that education can't see the world without it - so bear with me.

I am weaning Ellie off Depakote against doctor's orders.

There it is.

The question that is torturing me is why didn't I do that as soon as it started making her sick? In 2007 when she was four and a half in April she started to have seizures. Small ones. I took her to her Neurologist who put her on Depakote and told me that someone with Ellie's history, I believe the technical term she used was "these kids", if they are gonna develop seizures do so between the ages of 3 and 5. And there Ellie was at age 4 and having these small absent seizures. She did throw up if she was eating and then she would sleep for 40 minutes. You can read about that here.

Within two weeks of medicating her, on Depakote liquid, she refused all food. This was a huge blow. We had worked with her for thousands of hours to get her to eat. No small task with someone with the level of dysphasia that she had out of the gates. And I mean we worked with her right in the NICU. At the point of the seizures she was eating ALL her purees (4 different meals) per day and that was about a cup and a half of pureed food in 15 to 20 minutes with us feeding her. This was a HUGE accomplishment on all our parts and was 4 solid years with over 8 hours a day, 365 days per year, which calculates to roughly 3,000 hours per year for over four years which is about 12,000 hour plus of working with her to get there. That's a lot of effort, heart and soul going into getting her to eat by mouth. Can you feel my pain when it was all swept away in a two week period?!!!

For her to just refuse food was a hideous thing. It had such a huge effect on me that I lost my objectivity and a little of my logical reasoning skills and my energy was deflated. I asked her neurologist about it of course and was told, no Depakote does not affect appetite other than to increase it. (so I must be crazy right?). No you should not try another drug, because Depakote has the least side effects. 

I kept trying to get Ellie to eat for months. And was told, now she has a sensory aversion to food. She is trying to control her environment. It's become behavioral...

Ugh. And all this time I wasn't listening to my inner voice. Actually that is not true, my inner voice was going crazy, shouting "This is wrong! All these explanations are WRONG! Get her off that crap!!"

Now, in 2009, 2+ years later I was told that the Cisipride she WAS on causes seizures. She has been off that since January roughly - see here.   I have recently met a couple of adults who are on Depakote who do report that it makes them dizzy, tired, and nauseous.  Hmmmmm dizzy and nauseous and tired?  Go figure - if I felt all those things at once I wouldn't be eating either.

This realization hit me very hard this week. What the f*&% was I thinking leaving Ellie on the Depakote this long? I should have fought harder with the doctors to get her on a different drug. The Cisipride study showing the link to seizure activity was only made known to my by my Doctor in December of 2008. And back in 2003 when we put her on it Ellie's reflux was really horrible, so not sure I would have taken her off it had I known. Because she used to vomit 30 times or more a day.  But I should have used my logical reasoning better and worked harder to preserve her eating. 

I feel like I lost my mind a little over this one. I feel that if Ellie had NOT had a G-tube all the doctors and everyone else would have been supportive of figuring out a better med for Ellie. I would not have been alone asking these questions, knowing something was very wrong but not sure what.

Now it seems so obvious. Now her eating issues MAY be behavioral.   

She is on half of the Depakote dose she was and she has grown. I am sure that her level is way below therapeutic. I am weaning her very slowly to let her system adjust. She is less tired. She is enthusiastic at the table now and want to touch the food and feed us and she will sometimes actually taste it. She thinks meal time is fun and funny. That is progress and maybe she is feeling less nauseous.  

Regrets are unproductive. There is no question of that. When I work on teams if something goes wrong my approach is always, ok, let's fix it and then figure out what happened so it doesn't happen again. There is no blame. But in the Mama role, I do feel like I let her down and that is a heavy burden. The me of today is like, What were you thinking? to the me of 2007, who was a very different person (that is the metaphysical part, in case you were waiting around for it). 

I know I am on the right path now with Ellie and the Depakote and that it was right to take her off the Cisipride. Her scope 6 months ago was proof of a very healthy esophagus and digestive track which the Cisipride, Slippery Elm, Zantac and Protonix and food combining diet were responsible for.   But man I wish I had figured all that out before now. Eating is one of the things that gives us something in common with everyone else.  Chewing food in the mouth is so important to digestion because there are enzymes in the mouth that are not in the stomach. It's healthy to eat by mouth. 

I am hoping that once she is fully off the Depakote she won't feel so tired or dizzy or nauseous. I look at pictures of her when she was three and see this bright eyed girl with eyes aligned. Then pictures of her after show a blurry eyed Ellie. I want my bright eyed girl back. And for the record I am really sorry that I put her on a med that made her feel so exhausted and sick.