We shine through our broken bits

I remember my friend Julie once commenting here that our broken bits are the places that spirit can shine through. I loved that. And when I say broken, I do mean parts of us that are changed forever. I don't mean parts of us that are bad. Ellie in many a physician's and most people's view has a lot of broken bits mainly in her brain. I remember when she was born so early feeling guilty like I had broken my baby. And yet, here she is 8 years later, signing with Santa, rocking out to TMBG and engaging the world. She is powerful in her world and has made my world a place I want to be in all the time. That's powerful and important and something that makes the world a better place.

A student of mine quoted Emerson in response to seeing an Aimee Mullen's Ted talk. I just read it in grading their work and had to pause and reflect - here, out in the blogosphere,because that's how I roll. Emerson said, "Challenges are what make life interesting, overcoming them is what makes life meaningful." Aimee Mullins, in her TED talk on adversity, defined adversity as change we have not yet adapted to.

There seems to be a key in there that is particularly germane to understanding the quality of life I experience raising a child with special needs. Different but meaningful. It's a meaning packed life every day and sometimes in this way, intense. But somehow life wants me to get this message. I saw a movie recently, and of course, Hollywood can glamorize anything, but in the end the guy chooses to love his girl, despite her huge challenges which will become his challenges. He tells her he doesn't want a life where their biggest challenge if feeling guilty over having a cleaning person or driving the right car. Instead, having a life that has real meaning.

So how do we constantly make meaning in our life? For me, when Ellie takes a step, makes a small leap, cries, hugs me, or eats, there is meaning there and we witness it via love, sweat and tears. I am not sure I have any answers but I am struck by these questions: what is a meaningful life? What is a shallow one? Do we oscillate between the two simply based on our level of engagement? How does any of this help us experience love and happiness and the feeling of being connected? How resillient are we?

Picture: Ellie signing Thank You to Santa (who also knows ASL!).

Eight is GREAT!

I can't believe she is eight! I can't believe all her NICU buddies are eight! I can't believe it's been eight years since her birth. That just seems so incredible. Several friends and family have said the same mantra, " I can't believe she is eight." That short sentence does harken to the fact that is was never a given that she would ever be eight. Against all odds we are so blessed!

Last year Ellie, around this time, actually late August until late December was in and out of the hospital constantly with we didn't know what except that it was neuro and involved her being in lots of pain and me being very scared, tired, etc. Turned out it was abdominal migraines and I think side effects of coming of Depakote.

This year, knock on wood, things are going much, MUCH better. Thank you to all the powers that be and mostly to Ellie herself for being a consummate warier princess!

Last year, because of all that, I didn't do the montage. This year I will but not yet. First I have to make a chocolate cheesecake for her pirate party tomorrow (She eats pureed food so I thought she might be able to handle cheese cake). There's an idea, make her a cake she can actually eat... only took me 8 years....ah well. ;-)

We are having her party back at home this year. Last year was great at the ballet studio but since then that class was cancelled and the locaton was so far flung most people could not come. This year we are staying home, which is probably one of Ellie's favorite places to be anyway. Dave created a family pirate treasure hunt, complete with clues and lots of Ahoy theres! and ARRRRGGGGGHHHHS! etc. I get to make food for kids and adults which is perfect. My parent friends deserve good nosh as much as their adorable babies who are not babies anymore but 8 or close too! Yikes!!!

Pictures soon to come of many things as we have made progress on the body jacket positioning front and new style AFO's and of course Splity.

Picture description: Ellie wearing her cousin Halle's sparkly hat sitting with Mama in a southern "Mic O'Donnell's" so coined by her cousin Henry waiting out a squall while on vacation this last August.

Pain in the Back

Ellie came home from school early today in a lot of pain in her back. I am not sure how this happened and of course have been wracking my brain scouring every positional memory I have of her over the last week. It's her lower back and she can't lie flat on her back without a lot of pain. It hurts her to sit too. She constantly keeps moving to try to shift her weight and find a comfortable place. It's hard and she is in pain - which is not good.

7 years old with a hurt back. That's just wrong.

Connecting in a web

This November Ellie will be 8. 8! Though, my brain just reminded me as I wrote this, "Well not really 8, not until February when she was supposed to be born!" Do any of my readers, who are parents of preemies, ever do that kind of self correction? Does it ever go away? ;-)

Just the same she will be 8. She is huge (for Ellie) at 37 pounds and so tall that when I pick her up her legs hang well down past my knees.

It will also be roughly 7 plus years since we moved here. About 6 years since I quit my big corporate company that so kindly moved us out here so that Ellie's shunts could be made right by Dr. Gumnerova at Children's Hospital Boston. Ellie is starting her 5th year at "new school" (not so new any more). And we have lived in our own home for 6 years.

I find myself amazed at all this depth in my life, all these roots. The fact that I have lived in the same house for so long in the same area. Staying here, in children's medicine mecca, is necessitated by Ellie's needs so it's fine. Ellie's needs, as many a mother comes to find, are exactly what I need though not always what I could ever imagine.

The best statistic is that it has been a few years (knock on woods so the tree gods can protect us!) that Ellie has been truly well. I know we had a bad stint for many months this time last year. But that bad stint did not end up in operations, brain damage, or other really scary things like what we have faced before. And though it was bad, because she came out of that healthier (despite the migraines) I still count it as a good year. After all she did get off her seizure meds. She did start eating full force. She did go to first grade. She also, bless her beautiful soul and ever healing brain, start to sleep with some regularity. So many blessings.

I have been struck by the richness of my life and all the beautiful growth coming up from these roots we have inadvertently laid down. We truly didn't mean to. We said, we'll just stay to Ellie's health gets manageable. Then she found "new school" and now we are quite stuck. But by being stuck in a situation where we had to reach out into our environment to survive, we have built something despite ourselves. All these connections are like a beautiful glittering spider's web hung with morning dew in the sunshine.

When we moved here we had no friends. We had people we worked with but didn't know well. We felt very alone. It was a harsh and lonely shift from our very full lives in Los Angeles complete with great friends and colleagues, who are, let's face it, also friends. That's LA for you though. Very different from here. Very different from here was a tome I chanted for the first 5 years here.

Yesterday I walked through my yard, late at night, coming home from work and I noticed how I wasn't afraid. At all. You would never feel that way in LA. I would always felt wary and never lingered between car and door. But last night, I smelled my roses and looked at the moonlight on their white petals and I was startled to realize that I was actually starting to like it here...a bit.

I experienced this same phenomena in Los Angeles - hating it for the first few years and then gradually loving it. See the pattern? Now I realize that there is a survival mechanism in there - adapt or suffer I believe is the technical phrase for it. Even so, seeing it kick in I realized that it's not where you live, but all the people you feel connected to that make a place great to be. The fact that our web of connections has expanded beyond the hospital is only possible because Ellie's brain continues to heal. We are really lucky that Ellie's path has mostly been on an upward trajectory. The fact that our connections have so much depth might, in fact be because Ellie was injured at birth. That has changed everything but not in the way you would typically think.

Cold Turkey Java

It's been a long time since I wrote a post under the label "Batshit Insane". I think that is because when I work this much I am not as funny as I am when I am working less...very sad indeed.

BUT, for the record I have given up coffee - successfully. I haven't had any for over 2 weeks and don't miss it. I still have one cup of earl gray tea in the morning and the occasional soy chai latte but they effect me so much less than the coffee did.

Me and coffee are pretty much done. And I don't miss the nervousness, the extra sweating, the rapid heartbeats, the skin breakouts, and the sleepiness it was causing me! So what was once so hard to do as you can see here, is now done.

Gotta look for something positive after this long afternoon!

Picture description: The de-coffeed me - being cheeky sticking my tongue out at Dave and now all of you...

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.

It's what's happening on the inside that matters

Today I visited someone who has a heck of a time of it, in their own mind. We will call him George. As we were interacting and I looked around George's house with it's run down, dank vibe and realized how miserable they must be inside. The state of decrepitude of their house was not due to the fact that they were poor or indigent in any way. They are in fact, very intelligent, have their full faculties and are very wealthy. I realized via a juxtaposition of a person close by who is similar in demographics but the opposite in terms of what they were presenting to the world. This person's home was vibrant, filled with light and people, laughter and music. It has a sunny, happy vibe. Observing this stark contrast I had a realization that a person's home is a reflection of their inner life (that has nothing to do with wealth) including their attitudes about the world. George and his house embodied a lack of forgiveness for his own human frailty. The evidence for this was everywhere from how he mistreated his own body to a kind of cheapness of spirit and lack of generosity that has isolated him from all who would try to love him. It was a sad realization. It also made me realize that we can manifest a life however we wish.

What I mean by that is, that our life, the very quality of it seems to start inside, in our own minds. You are the creator of your own day to day world. I mean this in the pure sense of how you are going to feel about every event, every interaction and every choice you make, moment to moment. When you think of it that way, there's a lot of creating you get to do. To be clear, I am not talking about destiny or the fact that some things in life do indeed happen to us or as one of my favorite people likes to say "for" us. NO I am not thinking about that. I'll leave that to God and the higher powers that be.

It's the control of the moment to moment quality of life I am talking about as I have recently had a realization about this. Which is kind of amazing considering what a long hard road it has been these last 7 years. What I am actually experiencing in a moment to moment conscious enough to do something about it way is that there's choices every day that I get to make about how I want to be. They start in my own inner world. I think I turned a corner this summer in that respect. I found my own inner voice telling me at an important juncture to take it one step at a time. That I didn't have to figure it all out in one go. It was this whisper of kindness from a place I am not used to - it was from me. It said, take it at a pace that doesn't hurt so much. I needed that and knew that this gift came as a side effect of living a conscious life. I wanted to say aging there but it's more than that. George is over 70 years in age and many experiences with life that come with aging hasn't helped him live life at all. He is still pretty rotten at it. Never venturing far from his TV or house or life long habits of self loathing. Very sad.

But this inner gentleness I felt was so incredibly unexpected and soothing. I have felt so much pressure to get it right for myself, for Ellie, for Dave, for our life. And a lot of that pressure has amounted to good things accomplished but also a lot of stress. Recently I have remembered to take a deep breath and be still. I haven't made time for that in awhile. Also, Ellie has been teaching me this summer to chill out and laugh. At one point Dave and I were discussing something stressful about our mortgage and she looked at the two of us and laughed. We must seem ridiculous to her the way all middle somethings do to young children and wise old people. I loved it though, that she laughed and I felt relieved as she was reminding me that it's not all such a big deal after all.

I feel like Ellie is the person in this world who keeps me most grounded, in the present and loved. She rewards me all the time, with hugs, signing I love you, smiles, laughs, and the fact that she is growing up and doing all kinds of amazing things no one ever thought she would be capable of. This summer in visiting her 7 year old cousin it was clear that she is very 7 too. That is an exciting discovery. That it was a surprise is due to the fact that she can't tell me directly what is going on inside of her. So when her cousin asked her about things I would have never thought about and Ellie answered them. When her cousin watched Hanna Montana, Ellie did too, without complaint. This was a revelation. it was clear they were on the same page in many ways. That was so incredibly cool.

The best thing of all that Ellie has given me is the fact that I have not felt one moment of the deep and seemingly unending loneliness I felt almost daily, every day of my life until the day I was pregnant with her. I think in reality I am the one who has the most to overcome versus Ellie. She is happy, curious, loving, confident, and present. She's a good teacher. I wonder if all children are teachers for their parents too? Either way, it's really her who is saving me all the time, not the other way around.

*Picture Descriptions:

Ellie with Dave just after riding Splitty

Ellie concentrating

Ellie laughing at her Uncle Braeden in CPK

Ryn Tale's Book of Days: Voted Top Cerebral Palsy Blog

Presented by: Medical Assistant Schools

This award was created by the Medical Assistant Schools dot org to round up great blogs on CP. Blogs are nominated by their readers and then there is a committee that reviews the blogs and makes the final decision based on their assessment of blog content. Ryn Tales was in the top 20 of all the blogs nominated. Thanks to my readers who nominated my blog!!!

Spammed

Hi Everyone, I keep getting spammed by comments written in chinese with links to asian porn sites. I have my comment moderation on including the word decipher thingy. But the spammers keep getting through with 3 or so comments posted per day! So every day I am moderating 3-4 of these types of comments which is getting old fast.

Is this happening to anyone else and did anyone find a way to stop it?

Nic Nac, Paddy Whack, Get Ellie Atop a Horse!

Nic Nac is a painted pony. He is recovering from obesity and in need of exercise because his rider outgrew him.

Ellie is a seven year old girl who needs: to loosen up her hips, weight bearing exercise, and therapeutic riding for gait training in the hopes she will one day walk.

It has been a match made in heaven. We have been, on and off for four years, looking to get Ellie onto a horse. The doctors have been recommending it. Our first calls to places that advertised either hippotherapy or therapeutic riding were met with 5 year waiting lists and huge fees. I have done four searches in all for this service and been met with obstacles. Stables either didn't have space, the right horse, were intimidated by Ellie's shunts, etc. The other big obstacle and the reason I didn't plow through these obstacles, was that I didn't know what it looked like. I couldn't imagine in my head Ellie safely riding a horse. I rode horses a very little bit as a kid. My neighbor's horses. And got bucked off once hurting my arm. All of it was totally unsupervised.

That's what in psychology they call a filter. My filter around this needed a bit of cleaning. Maybe yours does too if you have a kid who is floppy like Ellie. You gotta ask - how the heck are they going to do that? How will she be safe? What will they do if the horse runs out of control?

I think these are pretty sane questions. I know that I feel very protective of Ellie and the last thing I ever want to happen to her is any more injuries - she's had enough injuries since an early day one start in life.

But it was time, over due. This time I got Dave involved in the search too, especially after having a hard conversation with a local riding outfit where the woman asked me if Ellie could sit on her own. I said not for more than a few seconds. Then she asked me would Ellie need a rider to sit behind her, and my safety fears kicked in and I answered that, that would be nice. To which she replied, well we don't do that here. To which I replied - that's not a fair thing to have asked me then! I don't know what Ellie needs... and I explained my fears around safety but that she really needed this therapy for her well being and wouldn't they just assess her please! That's when I got Dave involved to look for other stables because I was tapped out emotionally - remember it's been a 4 year search.

That local stable decided to take her on, then changed their mind, and then called us back when another rider fell through. They were 5 minutes from where we live and on an opulent private school campus. They were not that friendly. But in the mean time between their acceptance, rejection, acceptance maneuvers, Dave found another riding stable called The Farm. They were really nice, welcoming in fact, versus leery and condescending. They are about 40 -60 minutes drive from where we live depending upon traffic but accommodated Ellie so that she could go on Saturdays. They were nice and their prices are very reasonable - in fact half the cost of all the other places we have called. They didn't ask if she could sit. They asked to meet her and assess her. They asked her height and weight and told us about Nic Nac the pony in desperate need of a rider. It was looking like the stars had finally aligned around this.

We went to meet them. Lauren, is the OT in charge with graduate degrees in OT and Therapeutic Riding and is wonderful. She is truly passionate about getting kids up on horses and kind and collaborative. Lauren is a teacher who knows how to push a kid such that they go beyond their limits but are not traumatized by the pushing. On her second lesson Ellie got on Nic Nac. I thought it would take weeks. On her third lesson Ellie rode Nic Nac twice around the farm not just the smaller riding ring. Ellie told me later that she liked Nic Nac but that riding him is hard. I agree. I think it will be easier as she gets stronger. She really liked giving Nic Nac a carrot. We are going once a week and had two weeks off for the 4th and a family birthday. Tomorrow will be Ellie's fourth lesson.

Did I mention, that for Ellie to do this, Lauren assembled a team of four other volunteers? That's how they do it - a team of people. Two people hold Ellie on Nic Nac's back. One other leads the horse. Another is there just in case and Lauren directs the whole thing and works with Ellie, teaching her how to hold on, encouraging her, making sure her body position is good. Lauren fitted out a special helmet for Ellie which you can see in the pictures where Ellie is in the purple shirt and the helmet is not sliding down - her third lesson.

Here are some pictures so you can see how it works. Picture Description from the top down:

1. The pictures with Ellie in her pink dress are from her second lesson and first time riding Nic Nac. She is all dressed up because she was coming straight from a birthday party. She started sitting side saddle until her hips loosed up and then she was able to sit astride. The blonde woman and the young girl are a mother daughter dynamic due who are volunteers and hold Ellie for the entire ride - quite an arm work out. It was their family member who outgrew Nic Nac and they are very committed to helping kids like Ellie ride. Also, you can see a belt at Ellie's waist. That has some loops at her back and is held onto at all times by one of the volunteers just in case Nic Nac decides to take off, they can get Ellie quickly off his back. Did I mention that Nic Nac is also an older horse? He is gentle so hopefully they will never ever have to use it. But it's a safety measure just the same and I am all for it.

2. That's Ellie in her third lesson with properly fitting helmet thanks to Lauren riding around the farm, wind in her hair. She was able to sit astride from the start.

3. Here you can see all the volunteers and how they work as a team - an amazing, warm hearted, volunteer, competent team! Thanks to all of them!!!

4. Ellie sitting astride Nic Nac listening to Lauren.

5. Ellie checking out the handle after Lauren explained how to hold on. And looking at the saddle blankets that were picked for their purple color - which is Ellie's favorite (pink is so age 6..). Also, the wooden platform you see is raised and it's a ramp so you roll Ellie up on it in her chair and that is how she gets on Nic Nac who stands beside it. Nic Nac is a great pony. He can be ornery with adults but the minute Ellie gets on him he knows and is his most gentle self. It's like it's his calling to help her with this therapy.

So if you are as cautious as me about this, I hope these pictures and post help give you an idea of how it works. Ellie's seven and has needed this therapy for a long time. But I am glad it's happening now after having found Nic Nac, Lauren and The Farm volunteers. I am glad we found the right place with the right philosophy because that makes all the difference.

Migraines and Ceiling Tracks

Ellie was up all night with a migraine that was manifesting as massive clonus in both of her feet and a bad headache. Imagine having a foot cramp so bad that your foot vibrated like electricity was running through it and there was jack you could do to stop it. I spent the night holding my 7 year old on my lap and reaching at the awkward angle required to touch the tone inhibiting points in her feet that Ellie's PT showed me. It worked but I had to keep her foot in the hold for minutes to keep the clonus at bay. Every time I would release the clonus would come back. Clonus does feel like electricity because it is. It's a result of the neurons firing but ending up in a loop that does not go back to the brain but gets stuck in the spinal column so there is not shut off valve for the muscles to stop contracting. It's funny, you would think that brain injury would shut things off, and maybe it does in some cases, but in Ellie's, and anyone with high tone, it turns things on and keeps them on.

AND I was out of Motrin. Tylenol seems to do little for Ellie's migraines, though I gave her some anyway. That is how I spent the wee hours between 2 and 5 am last night, finally going in to wake Dave up for shift change. Ellie was up again at 7:45am. She wanted to sleep on me. Sometimes it's the only thing that calms her and I sit up and hold her on my lap as she buries her face in my shoulder. I love holding her and am glad it is soothing to her. The clonus is much less but my lower back suffers as it gets compressed under her weight which after hours of this has got to be 40 pounds.

When I was 21 I backpacked around Europe and my pack weighed 40 pounds and Ellie feels about the same. That's pretty heavy when it's just solid weight on you, like a 40 pound back pack resting on your stomach and thighs for hours...

Ellie has been up and tossing and turning and complaining all morning. I gave her some coconut milk and tried to get her to eat but it's a no go. Dave went out and got some store brand motrin (because the name brand has been recalled because of dosing issues - great - another thing to worry about) and we are waiting for that to kick in. I really wish I knew the trigger. It's hard to pin point. We did take her out for ice cream and she had some vanilla yogurt and she had chicken soup last night for the first time... We are going to give her Zofran now to stop the nausea so she can eat. Did I mention how much I hate these migraines?

Dave and I also finally came to some conclusions about the accessibility of our house and what to do. We were considering a stair lift so that Ellie could keep her upstairs bedroom but decided in the end to build out our back covered patio. It'll be as big as her bedroom now but a better layout actually. With her room there, we can put in a ceiling track and Ellie will have access to the whole first floor which will also have the accessible shower. I will not miss carrying her up and down the stairs. The room will have big windows and face out toward our rock garden and back hill, which is wild now but will have to be tamed. And if there is ever an emergency it will be much safer, faster, and easier to get her out of the house. It's nice to finally decide. The weight issue of this whole situation is number 3 behind death and lack of sleep. I have worried about it so much. But with things like ceiling tracks, it may be manageable. Ceiling tracks and back boot camp stretching and weight lifting. Taking care of yourself is important anyway for anyone, but seems to make all the difference in my situation thought not fool proof as the pain I am feeling now is evidence.

It's so hard to know what to do. Our house is this living constantly morphing thing.

I don't think we will make it to T-ball today. Oh, and Google's spell check, should know how to spell clonus!

MVP! and March of Dimes Follow Up

On Mother's Day Ellie played T-Ball and she had such a great time, such a good attitude that she got the Most Valuable Player distinction, complete with signed ball from the coach! What a wonderful gift on Mother's Day. The pic is of Ellie up to bat. Last year her head control was such that she couldn't wear this helmet and keep her head up at the same time. Progress.

We didn't walk in the March of Dimes walk after all. We were waiting and hoping the thunder clouds would abate, but they didn't, and lightening and wheelchairs are not a good match. Liz and Marla represented Team Warrior Princess and walked in the pouring rain and thunder. Thanks to Liz and Marla and everyone who donated to the March of Dimes. We will do it again next year and hopefully the weather will be better so we can participate in the actual walk!

Walking for the March of Dimes - Tomorrow!

Hi everyone! I wanted to thank everyone who donated to the March of Dimes "Team Warrior Princess". We have raised $1,110 dollars total - exceeding my goal of $1,000.

We will be walking tomorrow and I will be sure to post pictures.

Thanks again to all who gave their support to this worthy cause of helping prevent premature births and supporting parents who have babies in the NICU.

The picture is of Ellie last year at the walk (she went with Liz who set up the site this year and is team co-captain). The crowds bothered Ellie so they took a breather by the river. Ellie had a great time just the same. It's amazing how much she has changed in just one year.

Wish us luck for tomorrow and cross your fingers to keep the thunder storms at bay. Lightening and wheelchairs are not a good match!

Ellie's Staycation

Ellie is home this week for April Vacation. Our friend Kristin coined "Stay-cation" . I love it as it perfectly describes Ellie's ideal vacation: staying home. She has been enjoying the extra time with Mama and getting to see some friends she hasn't seen in awhile. On Tuesday she signed I love you to me giving me a long look to make sure I got the message and then a hug and didn't ask for a toy. That was all. A simple but meaningful I love you. Of course that made my day/week/life. You know. She is so cute and when she does stuff like that it's heart-rendering! Suffice to say, I think she is enjoying being home.

She has also gone to having a very bad cough to now a bad cold. Not unlike many adults I know who wait to get sick on the weekends or vacation. It's truly a stay-cation. Here are some pictures of my indomitable sweetie, all taken with the iPhone by Ellie with just a little of Mama's help.

True Spring

Too much in my brain right now to even begin to blog. So just some pics of Ellie who as a seven year old has the most thoughtful expression sometimes like in the first picture. She sort of sets her mouth just so and looks very serious. I wonder what she is thinking while at the same time feel the sanctity of her inner processing, so I don't wonder too hard and am ever so thankful that she is filled with so many thoughts. A pic of her and dada and the iPhone. Lastly a picture of the painting that will be done before I stumble across another birthday.

Ellie has been well. We are experiencing true Spring for the first time since we moved here. I am grateful for the transition.

Thank you VERY MUCH to Penny Richards for your testimonial about the strength of stomach acid to dissolve baby teeth, sharp bits first, before they ever reach the small intestine. I am sleeping much better now. Thank you so much!

March of Dimes, Casting, G-Tube, Migraines

This year we are finally walking for the March of Dimes on May 8. I wanted our name to be Team Ellie but that was taken. So we are team "Warrior Princess". It's such a good cause. I am glad to be participating and feeling like we have the space in our life and the health to do so. If you are interested in joining us for the walk you can sign up on our site and we will see you there!

Serial Casting Update: Not so good
Ellie got through her first cast after one week of no sleep and with a cut/dent on her left ankle. This cut turned into a crater when the donut that they put to protect it in the second casts slipped. She made it through 4 days. The wound is still not healed. The gains she made - because it is clear that serial casting does work - are slipping away on that side. Her feet are becoming clubbed. It's upsetting. Ellie knows how to walk. She deserves feet that will hold her up. It's frustrating. We are reconsidering trying Botox one side at a time to see if the systemic reaction we got last time was a fluke. That may sound crazy, but check out these alternatives:

Phenol Block. Phenol in 1% of people it causes life long pins and needles at the block site....no thanks.

Baclofen: this relaxes tone systemically. Good bye head and trunk control.

Bacolfen pump inserted into the spine - forever. This delivers Baclofen to the nerves in the legs only but is 3+ inches in diameter and is a permanent implant....God that bums me out. It can still cause systemic side effects like fatigue....

Rhizotomies - where they cut the nerves that are effecting the muscles most. This works great for kids who are already walking because they can isolate the nerves most effected and the kid's brain is already wired up to walk, the muscles are there, etc. In kids that are not yet walking there is a good chance they never will with this treatment because what nerves do you cut? Which ones are the ones Ellie's body will self select to support her walking? Since it is in no way clear to me that she will not walk, this is a no go.

Her spine is ever so slightly curved too. I told the doctor that we had been doing less tummy time. I think he sensed my guilt. He was quick to point out that Ellie's tone on one side is much higher (her right side) and her left is weaker. He said it was the tone (the nerve signals flexing the muscles constantly) that is causing the spinal curve. He also said it is very hard to work the muscles on only one side of the body but that, that would help.

Her hip is the same amount effaced which is good because it didn't get any worse.

Other things we can try that there is no research to support they help or hurt:

Conductive Education

and

Feldenkrais

and

Hippotherapy

and

Start up again with TST

and

Hyperbaric O2 treatments

If we win the lotto I can quit my job to not only afford all of this but to get her there too...

Other things on the docket:

Dentist Visit: her first baby tooth is gone and I am not sure where...it's sad. There was nothing for the tooth fairy. I worry about how many teeth she can swallow...will those little baby teeth hurt her intestines? Then there is the obvious fear of her chocking on them.

G-tube revision: The good news is that she has gained back the weight she lost since September (can you imaging it taking that long to gain weight!) but now that she has, her g-tube is rubbing again and causing her pain.

Migraines: still a problem each month or sometimes every other month.

Adaptive Equipment needed: Potty seat, roll in shower for said Potty seat, hospital bed, stair lift, wheel chair van. Lovely things on our horizon that take months to get if they are covered under insurance and only half of them are.

It's a sea of medical issues and concerns in the murky land of brain injury recovery.

Let me tell you some good things too. She is eating up a storm and making progress on chewing soft things like banana. She is sipping slightly thickened liquids from a nosey cup! AND she is way, way into feeding herself! This is HUGE great news.

She is having success in Potty Training, we don't have a seat at home she can use which sucks and is the only thing holding her progress back.

School is going very well. She is being assessed for voice output devices FINALLY. I could sing! I can't wait till she shares with me any thought in her head that I don't have to muddy with my own interpretation! Right now I understand her much of the time, but sometimes she is communicating and I have to ask her questions to try to understand. Sometimes I ask her a question and in doing so influence her communication - that is what I mean by muddying.

Her fine motor is improving fast. And she is growing, growing, growing. She thinks it's funny when I tell her "Shhhhhhh let me listen to you grow!" And then I lean close and listen. She is way into They Might Be Giants which is the most age appropriate new thing she is into and what balm and relief from Signing Time and Baby Einstein! (No offense - but 7 years of those daily is a Looooooonnnnnnnngggggg time!).

She is maturing in her wants and needs. Her expressive language has taken a real leap forward increasing the need to give her better access to language. This is my favorite current problem to have. Also, as reported, the iPhone is still in favor and she is getting good at flipping between screens and tapping to make a video play. In the second picture up above, that is me and Ellie watching TMBG videos on the iPhone while taking advantage of a rare and lovely 65 degree day in the park.

Ellie is still such a sweetie who loves to laugh and laugh with you and include you in the fun. She is also, hands down, the cutest 7 year old I know. (not that I am biased). ;-)

I hope and think, when she is not in pain, she's a happy kid. Not as happy as she was last summer, because of all the pain on so many fronts right now, but hopefully we can stay on top of it and figure out how to move through this part of the story and get to a place where she is not in so much constant physical pain.

Why the word Disabled does not refer to Ellie

Different NOT Less

I have been thinking about this lately. It's been less in my face because Ellie is in a GREAT school and we are surrounded by people who are in the special needs community. We are lucky for all of this. But I think sometimes about how we will immerse ourselves in life even more. We are still somewhat isolated outside of school. It's much better since school, but still. One of the keys to our freedom (freedom being defined by me as access to community and all it has to offer) is Assistive Technology. We received a grant from the Gasperini Fund for some Assistive Technology but have not spent it yet because we are not sure what to buy.

It's hard because Ellie has motor disability. Her fine motor, is ok, very ok in that she can use her hands at all. She can operate her toys and her Weemote. She is having some success using my iPhone to swipe through pictures. The "tap" the screen part is more difficult, but I have not set my own phone to the accessibility settings yet. I am overwhelmed by all of this sometimes and frustrated. There is a huge smart board at Ellie's school - but she only gets to use it an hour per week. What I love about the iPhone is that we can instantly take pictures or videos of people and things that are meaningful to Ellie and use them to communicate and play.

Yesterday, Claire, left a comment on this post telling me about this app for the iPhone/iPod.

Voice4u.

Thanks to Yumi for inventing it. It is always disgusting to me and outright wrong how much the companies who make "assistive tech" charge. I have heard the argument that they have to charge more because there is such low demand. I think that argument is a lie. To have to pay $65 for one switch that probably costs the company $1.50 to make is price gauging at its worst. I appreciate the high tech environment and the freeware movement especially.

The problem in our life is NOT that Ellie has a disability, it's the lack of access. It truly is. A very smart Professor at the school I am working at now has termed this the "Social Model" of Disability.

Thank you Claire!! You have reminded me how much I love my blog readers and other bloggers and the access to the world of parents in my same situation struggling to figure out the same problems.

I am going to upload it and give it a try. Why, oh why does the iPod NOT have a cameral and video? I will hate it if the answer is pure marketing that has to do with ATT and not making a profit if people buy such an iPod instead of the iPhone and it's network.

Still the need to have to "tap" is a problem for Ellie. But for $29.99 I am ok with giving it a try and being Ellie's "remote" to help her do it. I am looking forward to the day when Ellie, using voice output or some other means can more easily tell me what's on her mind. She has been expressing herself so much more in the last 6 months. It's incredible and one of those corners she turns when we least expect it. Happy days.

Thanks to this blogger, Tammy, mom of Parker, for her blog as well. I will be adding it to my list.

Let me know if you try Voice4u and have any success.

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.

Celebrating Small Wins!

This Saturday we were planning to take Ellie out to lunch after ballet class. We would be out for several hours. Dave asked me as we were packing Ellie's nap sack, "Do you think we need to bring an extension?"

I had never been asked that before! Being asked that really made my day.

"Yes" I replied, "just in case."

;-)

Nothing Left to Bolus

In my last post, I worried that I was reporting too soon, commenting on an anomaly or a shooting star. I am happy to report that is not the case! Ellie is eating! It's official and I hope it stays that way. AND she hasn't had any migraines in 2 weeks. This is a big improvement after her getting them every couple of days. It makes me think we are right about those headaches being part of the withdrawal from Protonix and Depakote.

But back to eating.

She eats. She eats a lot and with enthusiasm. She has been eating so much I don't have anything left to bolus. Woot! And she has been eating more. Whenever Dave and I eat around her - which may not always sync up with her meal time, she will eat too. She eats pureed versions of what we are eating or some applesauce or something like that - kid food. The fact that she eats so much more and usually whenever it is offered makes me think she must have been terribly hungry over the past few years. Sigh. :(

Still, she is eating now and it's a wonderful thing to get to feed her and see her eating. It's very cute and there is something that is soul deep satisfying for me as her mother being able to feed her by mouth and having her eat. Also, I noticed that she has less reflux - no kidding, right?!

Video to follow.