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.

Facebookitis

My blog has it.

It's not pretty and is making my blog anemic!

Catching up here and inspired by Julie & Julia to give my poor blog more attention. This record of this journey is, after all, something that is more useful to me and more sustainable and relevant than the constant and fleeting banter of Face book.

Ellie is going to be 100% off the Depakote in two weeks. After all the difficulty in trying for months to get into see her Neurologist, as some of you read, I decided to wean her myself. And to do so very slowly. I finally got Ellie into see the Neurologist a couple of weeks ago and he said, "Well if you wanted to wean her you should have told me." I replied, "I tried to tell you and in fact left several messages for you including a faxed letter to that effect." To which he replied saying nothing but taking notes into his computer. He then laid out a plan to get Ellie off the two remaining capsules she was on from the total of 6.

This week she is on a half cap in the morning and a whole cap at night for this week, next week it will be a half and a half, and then the week after only a half cap at night and then the week after he said a half cap every other night and then that's it....

What a difference though. My baby girl is more interested in tasting food, she is brighter, she is more interested in the world outside herself.

I can't wait until she is off it totally and a few months have gone by. I feel strongly her seizures were caused by the cisipride and there has been no sign of any of that activity throughout this process. I am hopeful. I am glad she seems to be feeling better.

My back: I started back boot camp at New England Baptist hospital this week. I am glad. It's good and covers your whole back. They said they usually set a goal for women to lift 40 pounds but my goal is 50. I figure that should cover me for a couple of years with Ellie. My pain level is greatly decreased as the toxic fluid from the disc that leaked out into my body has been absorbed. I have not lifted Ellie off the floor yet but plan to after I get a few weeks of the strengthening from the back boot camp. It's good to learn these muscle building exercises - mostly weight lifting. Like the PT for my knee, I will do them for life. Silver linings.

There's so much more to write about, but I am very sleep deprived at the moment as we had a rough weekend with Ellie putting in a couple of days and one night in the hospital. She is fine now. She got a tummy bug coming home on the plane from Ireland. They thought it was her ventricles... of course. Over eager interns are scary, not all cute and witty like on Gray's Anatomy - just plain scary. Like I said, more to write about.

But we were up till 4am that night, Sunday. And she just called out now and I was up with her three times last night and then had to get up early. Between jet lag and tummy bugs and hospital stays and trying to balance my job and my back recovery as well as all the household stuff I am pretty flat out.

It's one of those times when you have to laugh and take stock like one of my friends does by asking at the end of the day, "Is everyone still breathing? Yes? Well then, it was a good day."

;-)

Adventures in Energy Healing

Do all mother's of children who can not walk injure their backs? I want to know. Many of the mothers I know of kids who can not walk and are total care and are over the age of 5 have bad backs.  UGH! 

This Monday I bent down to pull a teeny tiny weed in my garden and stood up again and felt a horrible burning pain in my lower back. An hour later I hopped in the car to get Ellie and after the 25 minute ride could not get out of the car without great difficulty. One ER visit, MRI and CT scan later I found out I have three, not one, not two, but three bulging discs in my lower back. Gahhh!

I am not happy about this at all. 

It has been a trying 10 years of knee issues and now this.

In total desparation have finally gone over to the other side of medicine and started to study the effects of energy on the body and using energy to heal it. So for all of you people out there in the blogosphere who have been patiently telling me to do this for so long, I am looking into it and have had amazing success healing my knees (with help). They are now tip top (well still have some crepitus) but my mobility is nearly 100% (am still afraid to try a full squat but may have to now) and am running up stairs and my knees are not swelling and unstable anymore...  Don't get me wrong, I am keeping up with my physical therapy - and will do that for the rest of my life. BUT, what started all of this was that about a just over a month ago I was having an "acute arthritic flair up" that was so painful not only could I not move my knee, or put any weight on it, but even the sheet touching it was painful. I was in agony. OK, I am only 41 and having a "severe arthritic flair up" is the term my Ortho Doc used...see anything very, VERY wrong with this picture?

A couple days before this flair up, I had seen amazing changes in a friend (who was suffering from Lyme Disease for a decade and now she suddenly looked 10 years younger and all her symptoms gone). I have known her since we were in college so I know what she looked like back then. Just amazing. Turns out she has started doing energy work on herself and with the help of an energy practitioner so I called her to find out who her person was. I called Carla and by the end of the hour+ session my knee was out of pain and the swelling receded and by the next day I was up and walking. On top of that the lack of stability in my left knee was gone as well. I have not had any issues with either knee since. 

I know if you follow the links and read all that stuff some of you out there are going to think I have lost my marbles. I am a sceptic for sure. A prove it to me type of person. But Carla's rates were so reasonable and I was in such agony, I said, I am willing to gamble on this small amount of cash because working with someone over the phone to heal my knee sounds nuts but a whole lot better than UFlexa Injections and total knee replacement surgery ... I was totally desperate. It was a fantastic gamble. 

Even after my knees felt better, I followed the medical route - my MRI showed severe arthritis in my right knee and moderate in my left, so I was referred to a knee surgeon to discuss knee replacement. My appointment was a week after I had my session with Carla. I went to see the doctor and he said, "Hey you are not walking with a limp." I said, "nope" and then he examined my knees and said, "You have full range and no swelling. Are you sure these are your MRI results?"  I said, "Yes, I am sure"

He said, "Come back and see me when you are 60"

OK, of course I didn't tell him I was doing energy healing on my knee, but you know maybe I should have...I work in academia now as well as with Executives. All of this is really hard to explain...I am of course worried about my credibility, which is obviously why I am blogging about it...or maybe it's the pain meds talking...

Now my knees are working great for the first time in a decade, and I mean GREAT. I feel strong in my whole leg again like I did before I smashed my right knee into a bar under a table in 1999. I have 33 inch legs and used to competitively race bicycles so that is what I am comparing this to. Strong!

I am not dissing regular medicine in any way. It saved Ellie's and my life. I am also not advocating for anything, just sharing my experience over the last month, which to my rational, overly educated mind, has been quite bizarre but wonderful in the results.

Yet within a month of this discovery of energy as medicine and having taken an intensive workshop to learn the techniques of that with some German New Medicine thrown in, now my back decides to act up.

I am doing both things again, working using the new methods I have learned that include the emotional work of healing one's negative mental patterns(i.e. how we think and feel about ourselves, self talk) as well as going the medical route. Though in regards to regular medicine, there is absolutely NO way I am letting them do surgery! I will do aggressive PT. I will do this energy and emotional work.

This is a rant in all the most classic ways. There's really no point. Just that, it sucks when your back goes out. The very, very cool thing is that for the first time since Ellie was born there is enough help. There are people who are going to help me for Dave's entire day of work when Ellie is out of school. She has 6 weeks off in 2 weeks. In terms of shifting my consciousness to one of abundance versus poverty, this is a good sign. 

The good news, in the philosophy of German New Medicine, my back injury means I am healing from something physical and something emotional (an old wound). It is also good that Ellie, though she had a small fever last night and this morning, has been doing great and Dave too (no more severed digits so he is doing well!). One of my favorite moms used to ask when determining if it was a good day or not, "Is everyone still breathing? Yes? Then it was a good day!" I hear ya sister!

***I woke up this morning (July 13th) and had no back pain. My back is still a little stiff and I am going to the spine clinic to learn the exercises today...but there it is.

Ellie's first time seeing fireworks

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.  

Crossroads

I am at one. Standing there looking at all the directions I could go and feeling a bit paralyzed. It's one of those situations where you can't stay where you are but you also don't want to go - but since you can't stay - you have to go and there I am. Standing in the middle of intersecting choices and paths laid out before me with all the ambiguity and mystery the future has to offer up.  The longer I stand here the more my legs ache to run, the more my mind wants to pick the right direction. If only I knew what that was.

Instead I stand in the center of the intersection, looking and turning and peering down each road. Sometimes I hope a car will come along and hit me so I am spared the decision altogether.  But that would just be too easy and I have learned from long experience that life is rarely easy or fair. 

I am gonna wait awhile longer, as excruciating as that is. Take some deep breaths and wait for that gut deep certainty about what to do.

Jaded

I think I am.

We had Ellie's Individual Education Plan (IEP) yesterday. I loved what was written. IEP's are very hard to get right in terms of balancing the laws of your state and the needs of the kid and having them make sense and be descriptive and succinct enough to be workable by many. This one was beautifully written with a genius that has written Ellie's IEP since she got to her current school. Each therapist as well contributes to this great foundation that was laid two years ago now. For that I am very grateful having witnessed a truly ridiculous and inappropriate, nonsensical that was produced by the public school. I know the difference from a good one that makes sense and is actually about Ellie versus one that is about everyone ideas about a kid with CP and brain damage who is NOT my Ellie. There is a big difference and her current IEP is brilliant in all aspects and especially in comparison. 

That said, I was also happy to make some specific additions. 

The additions I advocated for were made, sometimes right away, but many times only after I insisted several times like a broken record. That's fun feeling like you are being unreasonable when you know you are not but you are the only one willing to say what is unsaid by the group round the big conference table. Good times!

One addition I had to insist upon was the use of Intellikeys keyboard because we are using it at home. I feel I am still at odds with the school about Ellie using multiple modes to communicate.  Not once did the AT specialist use the word Intellikeys. I felt this was a sign of resistance and am not sure they will support the use of it by others. This really bothers me. This makes me think I need to check in and track it to make sure it is supported as much as the other modes this person prefers. I feel like my wishes for my daughter are not respected when I have to do this. I track conversations for a living and diagnose and intervene on group dynamics and leaders not towing the line for the team. I know what this looks like. It's a bummer to see it in this setting. In this case the person thinks they know best with a conviction that is unshakeable and unassuageable and isolated from dialog or external input.

Their argument is that Ellie's energy runs low at times and for those times she needs different ways to communicate. I get that, it's not a bad argument. My argument is that she has great use of her hands so let's optimize that and give her a chance to build up her stamina.  I have seen Ellie's eb and flow of energy. I get it, but I will not buy into limiting her because of it or using it as an excuse. Ellie LOVES to be busy doing different things. If she is mentally stimulated she will wake up for whatever it is. My argument is also around having the right physical set up for Ellie to succeed in. One of the therapists in the meeting noted that when Ellie had the right positioning her accuracy went from 30% to 70%. That is a big deal. They are tracking her accuracy so they should have the right set up right away. Everyone agrees on this in theory but it doesn't always happen. 

The jaded part comes in where I think I need to watch it closely. The part where I wanted things explicitly stated in the IEP. I hate being like that but after this year of struggle I feel like there is no safe place. Yes these people care about Ellie. But she is my responsibility for the rest of my life. That makes my concern far deeper and different from theirs. When they get defensive, I just feel suspicious. And that is jaded. Sigh. 

Maybe no parent can ever rest on their laurels (what are laurels anyway?). But sometimes it just seems like there a way too many plates spinning in the air for far too long. Way too many battles to fight and plans and 

strategies to implement and watch over. Ellie's worth it and then some. But still, I feel jaded and untrusting and that is not fun. I know I started out very trusting of life and with this feeling that people always do their best, because I do. 

Now I am jaded. 

What's next? Where do you come out on the other side? It's gotta be a place where wisdom resides - just not sure what it looks like yet, but looking forward to getting there...

Ellie's Second T-Ball game

There were no tears only excited happy dances and finger spelling the numbers of bases run.

Ellie's first T-Ball Game

Last Sunday we took Ellie to her first T-Ball game, which was on Mother's Day. And it was the best Mother's Day present ever!!

Thanks to M. S. and the others like her who make this possible.  Ellie's team is called the "Red Sox" go figure. The high schoolers you see wearing the "Buddy" shirts take the kids around. We got to varsity soft ballers who by the end of the hour had learned some sign language and showed Ellie how to throw the ball, bat off the T (hence T-ball - thank God right? was really worried about someone pitching the ball at Ellie and was very relieve that is NOT how it works), and running the bases. In some ways it was a difficult hour. Ellie was scared and everything was new. There were tears and protests. Dave and I were allowed to jet out onto the field to give her support and explain about the baseball diamond and count the bases. After 50 minutes and she hit the ball off the T she started to enjoy herself. She especially loved the fist tap with all the other players at the end.  After the game we all went to dinner and Ellie tried chocolate cake - that is what is on her lips in the last pic. 

I learned a lot that day. For one, Ellie did NOT like the hat. I wonder if she is a closet Yankees fan. Either way, I got her a pink Red Sox hat today and when I showed it to her she smiled. I also got her a pink and purple leather sparkly glove - which she seemed to like too. I also learned that there are ways to get out in the world if you look hard enough. Thanks to Holly for telling me about this. Isn't it always the other parents that you learn the most from? It has been that way for me since having Ellie. 

We are going to go every Sunday. I am so happy to get to have this experience. In some ways I often feel very isolated from life. Marie, the woman who runs it and conceived it and started it, has opened up the world for us in a way that is extraordinary. Thank God for people like her and everyone who helps her. We hope that Ellie will get more comfortable and that we can sit back and cheer her on with the other parents. Having never had that experience, I am looking forward to it!

Happy Mother's Day Everyone!

My beautiful friend Julie, also known as Queen of the Meadow, sent me this endearing, funny video with a heartfelt feminist twist to wish me a Happy Mother's Day.

Thanks Julie - coming from you that means a great deal because you are one of the best most ingenious, loving mom's I know! You made my day and you made me laugh which is always good for the soul.

Miss you!

I have to say I have been fortunate to have had chance to learn from some amazing moms. Thanks for all you have taught me and all the support you have given me Holly, April, Kate, Julie, Jacqui, Billie, Linda Scotson, and Sue and all the many mothers who chime in on  this blog. Thanks for keeping me honest and keeping it real.  Hope you all have a great Mother's day!

Crushing Worry

Some times being a mother just truly sucks. I feel so inadequate for the task today.  Ellie has been pale and tired since the Cranial Sacral weekend intensive. And in the afternoons her eyes are in a somewhat sunset position. Sunset position of the eyes can be a sign of pressure on the brain. Her head circumference has not changed, she is not vomiting and her eyes dilate fine...

Today if she is like that in the afternoon it's off to the doctor.

She has been perky in the mornings though not at her baseline. The CS people say she is working stuff out and that it's normal to be tired. Dave thinks it's neurotoxins that have leached out of her legs from the botox and into her brain. He swears this happens every time we do botox which she had two weeks ago but has not needed for one year...

I am really kind of done with all interventions at this point except I think The Scotson Technique which is so so so very gentle. Cranial Sacral as it turns out is NOT gentle. Botox is NOT gentle. I think all these things have caused Ellie's body some shock which is draining her further. 

We have not been doing the Advance therapy for over a year. It takes time each day and I have been working and we have been making strides on other fronts with Ellie. But I am going to start it up again. *I want to bring them here to Boston to show me the latest advances in that therapy which has helped, along with the nutritional stuff, Ellie the most out of anything I have tried. It is restorative versus aggressive. It seems to honor the child's body in a very gentle and congruent way. It is also the only thing that has not produced ANY bad side effects. Remember in earlier posts how I described all of children's medicine as choices between lesser evils? Well nothing has changed...

*If you are interested in coming to the sessions that we have with them email me. I am thinking that we will do it this summer. When I get a date I will post about it here.

I am overwhelmed and crushed under the weight of my choices for Ellie. Managing and safe guarding someone's precious and deserving and beautiful life is tough going. I feel that weight right now and can't help but feel I have been having missteps for a year. 

But here are some of my recent discoveries on the nutritional front that are a good evolution of my understanding of how Ellie's intake of nutrients can help her heal her brain - which is how I approach anything that goes into her body:

Coconut oil. This is a saturated oil - as it is solid at room temperature - it melts at 76 degrees. BUT recent studies have shown not all saturated fats are created equal. Coconut oil is a good fat: anti microbial, anti viral, antibiotic.  It has a lot of great stuff in it for the nervous system too. So I have replaced Ellie's daily dose of flax oil with pure, organic, UNHYDROGENATED, unheated coconut oil that I bought at Whole Foods.  She is doing great on it.  It is also very healing as a lotion for the skin and one of the purest things you can put on the skin. I have been using it as a night cream and it's awesome. Just make sure if you try it you get the organic unprocessed stuff that I highly doubt you will find at Walmart.

As it turns out almost all Flax Oil on the market has some degree of rancidity. Figures right? I had picked Flax because when Ellie was younger the fish oil seemed to make her reflux...  Ugh. Mama -0 / universal forces of darkness - 1

So now she is back on Fish Oil and it is going well - just 3cc's per day. You can buy fish oil that is "Pharmaceutical Grade" which means that all the mercury is processed out of it.

A big realization I am having is that a gentle approach is so critical to my little girl whose system is delicate. And when I say delicate I don't mean it's not strong. But think about it. Ellie has never eaten anything fried, processed sugar, caffeine other than in the NICU in the first two weeks of life. Her system is really sensitive and she is hypotonic inside and out at the moment. And she is small for her age - though I am proud to say she is now on the second line up from the bottom on the typical kid, NOT born three months early weighing 2.9 pounds, growth chart. When I lift her these days I have to go more slowly - her muscles have not caught up to her weight and neither have mine. Slow and easy and careful is how I am feeling these days. Having a kid with this much trauma and danger has had me on an adrenaline rush for years and I am depleted from that pace. I think the road now has to be a one about pacing. Which is a nice change. When someone is on the edge of death there is no time for slow and gentle - it's all fight and fight some more. We were there for a long time. Realizing we are not there now is a good thing as well as an adjustment. I always say to Ellie when I have to do something to her that she seems hesitant about - like brush the snarls out of her hair - "Gentle Mama" and make the sign for "touch gentle" and she relaxes. I need to remind myself to be gentle too on every front especially with my outlook on life and how to balance it all. I guess Spring is a time for transition and it takes an angry burst of energy to break through the frozen thresh hold to grow and evolve. That's where I feel I am at, at the point of changing once again. Change is hard.

In my next post I have to tell you about FPIES. Which are food sensitivities that show up somewhat like allergies and only a few doctors pay attention to.

Love and kind thoughts to all parents out there under the crushing weight of raising a child with multiple medical issues.  

Addendum: I picked her up as school today ready to go to the ER. But, though she is tired, and her eye lids slightly droopy, she did not infact have sunset eyes. Dave recalls clearly that every time after BOTOX that in roughly 10 days Ellie gets really tired like this. Maybe he is right that it is taxing on her and after that amount of time it leeches into her system. Great right. Dr. Webster always says the only risk of the botox is risk of no effect. I think he is wrong. None the less, taking her to the ER where they will put in an IV and subject her to radiation is something we will wait on. She was able to pay attention. She was signing the entire song "A You're Adorable" to me on the way home and in the absence of no other symptoms (though fatigue is one) I think I will keep a close eye on her and see. 

Feel like I am walking on the razors edge - again. Don't think I will EVER get used to it.

First Mother - Daughter Trip (anything really)

Ellie and I are on our first road trip just use and another mother and daughter. Our first mother-daughter thing ever...it's kinda cool.

She was a trooper on the 6.5 hour drive to Vermont. Google said it was only a 3 hour 45 minute drive but then factor in we got lost and had to stop twice - that's a really long trip. And I wasn't sitting next to her like I normally get to. So Ellie played and I got a crook in my neck. But after finally getting into the hotel and giving her dinner and letting her sit on top of me (because I am the human couch) and play with her toys she was much better and slept really, really well. She woke her sunny self.

We are here for a three day cranial sacral intensive workshop. From 9-12:30 and then from 1:30 to 4  a therapist will work on Ellie.  It's a spiritual thing too the way the therapists are approaching it. They used a  circle and talking stick to open and a short meditation and then on with the work. Ellie lit up when she saw her therapist, Amy. She was delighted. And Ellie isn't delighted falsely. She no room for anything but genuine reactions at least at this age. Ellie as been working hard. She kept drawing the therapists hand to where there is a non-working shunt in her head pressing on her occipital lobe. Together she and the therapist gently tried to shift it (fractions of millimeters) to relieve the pressure that causes Ellie to be dizzy and not be  in total control of her eye muscles. I really hope it worked. They also worked to remove the energetic imprint of that botched surgery. I need to let go of my own guilt about that too so that I don't hang on to it.

They were also working on some of Ellie's birth trauma which is not in short supply. And when I say 'they' I mean that is where Ellie decided to go. It sounds weird but it is a collaboration. We have done cranial sacral work with Ellie when she was 2 to age 3 and that got her eating by mouth. We have been doing it once a week for a year to help her again with everything. Growth is hard on her because of her Cerebral Palsy.

The whole experience after the first four hours has shown me just how connected we are to our children. When they were working on Ellie's birth trauma I got a pain where I had my spinal.  When Ellie was struggling with the emotions that came up around the shunt I felt it too.  That's the deal though isn't it if you really love your child? The good with the bad. The pain with the pleasure. You are never really free again and never alone again either. 

It's amazing to see Ellie work so hard and stretch and grow into her full self. She is so relaxed now and sleeping so peacefully.  Pictures to follow.

Get Angry or Get Better?

Sometimes I chose the path of anger. That's right, chose. I don't buy it when people say, I couldn't help myself. You can always help yourself, even if it's just being able to control, monitor, or mitigate your inner state of consciousness. 

But sometimes it's hard. I find it hard at the end of Winter when Spring feels like it will never come and I am sleep deprived and overwhelmed by managing mine and Ellie's life. Three doctor's visits this week and a Baker's Cyst behind me knee are not helping...

I can also chose to learn from my anger and the difficult things that happen in life. I take that path just as much, probably more considering the big picture. Decide for yourself in reading my blog. I have been angry about Ellie's computer teacher making her use a head switch. If Ellie didn't have such great use of her hands I would be all for it. But head switch? On Ellie? Come on!!!  Ellie's head is the most difficult part of her body that she tries to control. When, oh when are you going to see my kid as she is, not as you would like her to be?  

Sigh.  See that? Up there is me giving in to anger.

Ann has reminded me that there are always two sides to every situation. I am not sure how to learn from this situation yet or what the other side is of Ellie's hands being totally written off and her being made to use a head switch. But I am going to start to look for it and try to understand as I have been but without the anger. Any suggestions from any readers will be appreciated. 

It's good to be reminded that everyone makes mistakes, not meaning to, and without malice and that they deserve compassion too. If everyone thought like Ann seems to, the world would be so much a better place. Thanks for setting such a great example of this principle in your post here!

The Trouble with Experts

I have been thinking a lot lately about experts and expertise. Malcolm Gladwell has researched this topic in his book Outliers. Good book, I highly recommend. 

And this is probably a post that I should use for the organizational development blog I need to start just to get all these posts out of my brain. But it applies here because anyone in our situation has to deal with the so called "experts" all the time.  They come in all shapes and sizes from the obvious ones called doctors to therapists to school psychologists and on and on. The more issues your kid has the more experts you will have telling you want to do and what you can't do and more importantly what your kid can and can't do.

The trouble is that if Gladwell is right, expertise has its limitations. It takes roughly 5 years of practicing the same thing 8 hours a day to become an expert in it. Throw in all the differences in human functioning in each different human and then add in the differences in injuries, well you can see where this is leading. It's really hard to apply all that expertise.  Doctors have a hard road when it comes to this. And don't get me wrong they have helped us loads. They have also hurt Ellie irrevocably so just as much as they have saved her life.

There is a saying in OD that I heard from a woman I was training to do a leadership intervention. It is this:

"One size fits one."

It has stuck with me. It speaks to the need to take each case you come across and treat it like it's unique - because it bloody well is!

The problem with this approach is that if an expert does not continue to keep the same attitude of learning and humbleness that they probably had when they were training, they miss a lot of differences and uniqueness. Which leaves them open to being very wrong. Certain things that have been suggested for Ellie that have clearly been wrong and one look at Ellie would tell you that. But that is the problem with expertise. It can blind a person as much as it can lead them. 

And someone who relies on being an expert to hang their identity on will surely fail to have that questioned in any way. They will reject any data that was beyond their reckoning and that may contradict their expert opinion. This is dangerous at worst and a big waste of time at best. 

The trouble with expertise is that it can make us stuck. It feeds the ego. It comes cloaked in prestige. It tells us who we are and who we can have power over. It's so ingrained in our society that I have found when I don't take this role when I am teaching my students it makes them really uncomfortable and they may doubt my competence. They don't like it when I don't spoon feed them or if I question something that they think should be an absolute. I can tell you there are very few absolutes I have found to hold true.  Other roles like helping ones or collaborative ones have strict definitions for use and context as well as where they are allowed in hierarchy. And that is really sad. Sometimes life feels like it's about power shifts and control versus learning and discovery and accomplishment. As if controlling others was the task as opposed to actually creating something useful, like an assistive technology set up so a kid can find her voice. 

I am having some trouble with experts these days. I am having trouble with them not listening to me and not allowing me to collaborate with them. It's hard. It's prevalent in our society. 

But if there is one bit of advice I could give anyone with any expertise it's this:

"One size fits one."

Deal.

Another Stargazer Poem

I think this poem is about missing a loved one or feeling far away from God. Stargazer Lilies are my favorite because of their fragrance, the very essence of Summer, and they are so luminous. Walking in a moonlit forest is exactly where I want to be when I am blue.

Here you go:

Another Stargazer Poem

I was god that night
Walking through the trees,
My head turned upwards
Taking in the stars
The air was alive in it's smell
It smelled of life in all it's stages
The scent of birth and pain and sex and decay
Hung in the air like summer incarnate
And I felt like the center of it all
It was all around me and over me and inside me
Living things cried into the night
And their moans crashed upon my ears
And I was happy
And I was alive
And I was god that warm night
And I wish you could've been there
When I looked at the stars and saw your eyes
Looking down on me

by Tearon Uzuki

Ellie update: no fever all day today - so that is good. Still very sleepy and coughing now. Trying to keep her moving so it doesn't all settle into her lungs. Gave her UMKA Homeopathic cold care as well as Echineacea tea, frankincense essential oil on her feet, foot soaks, and a whole lotta love....let's hope this all works.

Cabin Fever

I have it bad. Ellie slept on me for upwards of 5 hours today. And she is still sleepy. It's the flu. But I secretly wonder if she is just done with Winter and decided to turn into a bear and hibernate? She has been wanting to read "Where oh where is baby bear" again and again. Maybe that was just her way of saying, "See you in June."

Dave is in Ireland getting his first real break in 6 years since Ellie was born.  I'm happy for him, it was my idea. And I am really glad he got out before the plague hit. 

It has been six years too. Six years of interrupted or no sleep, six years of holding our child who is often sick, six years of trying really hard to push a twelve foot bowling ball up Mount Everest. I think we have done pretty well so far and I know we have given it our best and will continue to give it our best and then give the rest that it requires of us. Because I am sure it will take all I have.  But the last two days, with no one to talk to but Ellie, who is only available for consult between the continuous nap have made me see how isolated we are in many ways. 

My family travels right by our exit off to see each other, only cautiously seeing us when their guilt gets the better of them. I see the little girl who lives down the street taking advantage of this warm day to ride her bike. I hear the other kids in the background when Dave calls to check in.  It's all making me a little sad today. Maybe because I am sick too. Not sure. 

I feel really isolated and on days like this it feels like it will always be this way. 

A few pics of Ellie's Ballet Class

Pink Pony Ride

Over a year ago now, Dave bought this little blue scooter board so that we could sit on it and help Ellie use her gait trainer - also called Pony. Ellie got pink pony (who has yet to be officially named by Lady Muck) from Santa. Being snowed in has its benefits in finding ways to make the day fun. We put it under pink pony and were able to take Ellie for a ride. She love it. We should have video taped it but no one had an extra hand with Dave in the back and me pulling from the front, but the squeals out of Ellie are a testament to all the work we have done on raising her diaphragm. 

Warrior Mama and my Direct Selection Kid

When I was pregnant a good friend of mine said, "Wait till you meet Mama Bear!" And I was like, "Who?"  And he chuckled knowingly and said, "Oh, you'll recognize her when you see her."

He was so right. There's no one or thing I will fight for like my child. All Mama's out there know what I am talking about. And not to slight the Dads, because there are certainly Papa Bears too.

You know from the last posts that we have been struggling with figuring out what Ellie can use to help her communicate. I have been VERY frustrated with one of the specialists at the school who is the gate keeper to technology for Ellie and the same person who has been shunting Ellie down a direction that has felt like the wrong way to go but I didn't know why. It wasn't until Friday when the outside specialist came to observe Ellie that I could put words to why. But wow what a relief to finally have the words to put behind my nagging yet previously unfocused conviction.

To back up just a tad, the school has been working with Ellie to figure out what technology would be best for her, and this regard they are getting a lot of it right. We are really happy with the work going on in speech and OT and regarding the use of symbols and just the shear creative variety they are using to approach it all. 

But there is one area that has been keeping me up at night. Early on last September Ellie got to try "Intellikeys" a couple of times at best. At that time the specialist working with Ellie was new (to Ellie) using new material in a new room, etc. See that word "new".   Putting  "new" in front of Ellie is like throwing down the gauntlet and is the thing that makes Ellie decide she is going to resist until it's not new. I always try to mix the familiar with the "new" so that she overcomes that hurdle more quickly, kind of like hiding the peas in the mash potatoes. 

In January, I had asked this specialist about the strategy again and she told me that Ellie couldn't manage Intellikeys and that Ellie would probably use a number of ways to communicate, like finger spelling, signing, and switches.  She then back paddled and said that she wasn't saying that Ellie would never be able to use it... 

This did NOT sit well with me. 

She also told me that she tried her on Intellikeys because of what she was told Ellie could do and that Ellie did not demonstrate that. See my comments on New - which this specialist didn't realize. When I told her about that monster named New, she looked away and checked the time and then just stared at me. I realized she was not interested in any data from me, "the over compensating, unrealistic parent figure".   That's so old school. I hate it when teachers take the "I'm and expert and have nothing to learn from you, oh bothersome parent" approach, which effectively shuts the parent out. Which, of course, in my world is a critical error. 

Mama Bear has been raging inside me ever since, but with no words and only a feeling that this approach was wrong. The bar, by this person, was set low on Ellie. All the stuff she is doing at home doesn't relate to what is happening at school - at least when it comes to accessing the computer.  

In the mean time, Dave got Ellie an adapted key board for the lap top she inherited. Her very first time on it,  she proceeded to try out every single key to see what each one would do. She ended up discovering  7 keys that we didn't know about.  This wasn't a perfect set up but it was something.

Finally on Friday I got an Assistive Technology guru in our home to check out what Ellie can do and to try her on Intellikeys when I was present so I could provide the familiar to ease the New.   Ellie was able to flip through a familiar story and learned 4 new keys there and then (though until we put a familiar story to use the keys on, she would have nothing to do with it).  

The upshot of the meeting was a few really important things:

#1. Ellie is a Direct Selection kid - meaning she likes to push buttons.  Direct Selection  - no kidding?! I looked around our house at all of Ellie's toys and noticed that they are all about pushing different buttons in different sequences to make stuff happen.  She had been "declaring" herself, as Dynio used to say, for a very long time.

Eureka!!!  

The specialist also observed that Ellie had memorized the buttons on her keyboard so that she could use them without looking at them.  Ellie had memorized the keys so that she would not have to refocus her eyes from key board to screen because that is really hard for her due to her hypotonia.  This also explains why asking her to scan images using a switch is going to be harder on Ellie than having her directly select what she wants via a keyboard. She will still have to do some scanning but providing her with choices that are laid out before her that she can use her thumbs to access make sense for her. That is what she has been doing her whole life! 

#2. Strategy. We finally have a strategy that makes sense to me versus the "we'll see what she does" and try to force fit her into someone else's view of her regardless of who she is. It's really amazing how people don't allow themselves to see Ellie when she is right there in front of them. People have so many filters about what a kid in a wheelchair who drools can and can not do they forget to see them as they are. 

This new strategy focuses on Ellie's strengths - the use of her thumbs, her curiosity about how things work and manipulating things via buttons. She navigated the Intellikeys easily.  It was clear to me that Ellie has declared herself and her preferred communication but I needed the words to make sense of it. It's not that Ellie won't sign or use other forms, but I almost feel like she was doing those things to fit in / join in with what everyone one around her is doing. She loves to learn and she loves to sign, I don't want that to go away. But signing is hard - pushing buttons takes a lot less energy. And communication for her should be suited to her to make it easier -  not harder. Switches are often the preferred device for kids without the fine motor ability that Ellie has. Ellie has great fine motor and shouldn't be limited to a two button switch where she has to rely on scanning with her eyes - which is what is hard for her. 

#3. Equipment.  Finally an answer on what equipment she needs now and some idea of where that will lead. Right now we are looking for a used Intellikeys as well as a programming language that I will write about later once I get the report from the specialists. 

Relief. Direction. Sanity. At Last.

Don't you hate it when you know someone is wrong about your child but you can't argue why because you don't have the words?