Second Wind

Pictures in order: 1. Ellie watching the Red Sox batting practice behind home plate where she got to hit the ball of the T this summer. 2. Ellie in New Port RI laughing at the man at the next table who is eating a big salad. He pretended not to notice that she was laughing at him...must have been from Boston. 3. Ellie at the Getty. We took her there many times before we left LA when she was only months old. It's a lovely place. Very peaceful with all that Travertine and dry desert air. 4. Ellie in her tent on the beach at Carmel. The water was so cold it put her off swimming for a bit. But she loved napping and laughing in her tent. The lack of sleep was less wearing on her. 5. Ellie as Snow White right before Trick or Treating. 6. Ellie in the morning as Snow White going to ballet class. She was basically Snow White all day. She loved that costume. Thanks to Liz who gave Ellie a lend of it! 7. Ellie carefully sampling a taste of the first Apple Pie she has ever made with her Dada. I put these pictures first, lest you should feel sorry for us after reading the post. It's amazing all you can do on no sleep whilst worrying. ;-)

It's been a long few months since August when Ellie went off her seizure meds (fully - we weaned for 6 months). I thought she would NEVER sleep again and if you have been reading Ryn Tales for any length of time you know how I feel about sleep or the lack there of...

Sometimes too it's just one thing after another. Luckily, in our case, these have been necessary things that have led to better days today - a better present. Here is what happened.

The last week of August Ellie was fully off her seizure medication Depakote during that same time her Protonix (a proton pump inhibitor that she used for reflux) was late getting to us. Needless to say, our vacation to California was a sleepless one. We had fun, but it was exhausting because between the reflux and Ellie's newly med free brain, we were up a lot....which took some of the joy out of it for me...seeing Big Sur through sleep deprived eyes was a sad thing. I know that sounds like whining and it is. I had a different idea of how I wanted the trip to be, but the powers that be, in a constant effort to keep me humble, had other ideas.

We finally got the protonix - which is compounded during our last week in Los Angeles. We got home and school started the day after labor day and Ellie was still not sleeping and vomiting and for the next three Thursday's she would come home from school due to vomiting and fatigue and be sick all day Friday and then recover on Saturday. Or mostly recover - she was a bit pale and something was not right. She still wasn't sleeping and all I could think of inwardly at her brain was for the love of God please rewire yourself up something quick please! To add insult to injury, her g-tube site started to rapidly break down like it hasn't since she first got it at -1 month (preemie moms you know what I mean by that!). Her open, cracked weepy skin that would make her scream like I have never heard her when the acid from her stomach would hit it. It was horrible, really horrible.

After three weeks we started to figure it all out. Here are the major things that were happening

- As I wrote about here the Protonix was bad...I still have not sent it to the lab to find out. BUT she is off it completely - that is the good that came of the pharmacy screw up.

- The pool water at the school was making her very, very sick.

- She outgrew her g-tube! Which makes sense since she has had it for nearly 7 years.

- Last week Ellie was out all week with a tummy bug and fatigue but no fever.

Perfect storm don't ya think. Good times.

All of this added up to a whole lot of late nights and me having to push my work till the evenings when Dave came home and weekends and I am still behind schedule.

We are truly blessed though. Our next door neighbors are both nurses and we called upon them. She is the uber wound care nurse at Children's Hospital Boston and got us Mitrozole powder and when I sent her a picture of Ellie's g-tube site was able to eyeball right away that it was too small and that Ellie needed the next size up. We could not have picked better neighbors, truly. It took a couple of tries, even though, we went in and got it measured for the docs to get the proper size. But we did and it's finally healed (she writes on November 4 - which means Ellie suffered since August with this!). Sigh.

I am also very relieved that she is able to be off a compounded med. People are human, if you are on a compounded med long enough it's only a matter of time before the odds stack against you. And it may be a long time because Pharmacies have many measures to prevent such things - but I am glad to be out of that game altogether.

I realized this week that I have been happier than I have in months. So much is resolved. Mostly I am happy because Ellie is REALLY happy now. My little insomniac. Her seizure med free brain did readjust - she has slept through the night all this week....

She is also off the Protonix and is only now on Zantac and Myralax. That is a huge deal after having been on Cisipride, Depakote, Protonix, Zantac, Myralax last year at this time. It's progress. Ellie's smile is the biggest it has ever been. Her eyes are more aligned than they have been since that bad surgery. She has found her voice. She is only slightly tired these days because she did lose weight with all this going on. She is showing more normal signs of appetite, which is motivating her to try food by mouth once again. Though it's been so long she has forgotten how to eat. This is sad, but workable... Her appetite is not source of confusion because it is no longer accompanied by nausea. I had to totally change her diet to be able to compensate for the Protonix so now her diet is more varied and contains more power foods that will support her growth. Did I mention she is also in another growth spurt, one that is as much seen in cognitive gains as it is in physical size?

Wild, let's just do nothing by halves in life because that would be way too boring....

Things are moving in a good direction. The Nap has gone away and Ellie is just plain more present. She wakes up smiling and talking and communicating. She is initiating more signs. She gets bored more easily and is more open to new things. All good problems to have.

In the middle of September I was feeling very bad. There were other stressors too with work especially. All of it culminated into the breath being knocked out of me. I felt like my zest for life was being leached from me by worry, lack of sleep, more worry, and physical pain in my back and arms from holding Ellie at night so much. I thought this is what middle age must be. Now I see that my spirit is resilient. I am also profoundly aware that for better and worse my happiness is linked to Ellie's by an invisible yet unbreakable chord in a note that close to g. Not having felt such a tie like this to my own parents growing up, I am grateful for the experience. It's very grounding though heart rendering when the chips are down. Better to have the heart rendered than no heart at all.

These last three months of hell have been worth it to get us to now. It's weird because I feel excited again, like when I was pregnant with her. Every morning I wake up I can't wait to see her. It's nice to feel this way again. I don't know where hope comes from. It could just be the extra sleep. It probably has to do with the fact that Ellie is making so many gains and is finally out of pain. She is happy. She is all smiles and giggles and full of life and loving and snugly and silly and wanting to learn and thrilled to taste "cheesy noodles" and finding salad a hilarious thing to eat and doing great in the patterning skills that are teeing her up for algebra...

I am grateful for this renewed hope. I was worried I was going down a bitter road that was leading to the death of hope, heart and soul. It's the road that everyone assumes you are already headed down when you have a kid like Ellie. All that Holland stuff is just another way to say cloudy skies for life. Instead I have found a second wind. I feel the same kind of excitement a mother has before her baby is born. That feeling of knowing that there is new love on the way and it's going to change everything for the better. I have that deep understanding again that this love is the only thing that counts and is what makes everything else meaningful. I am there again and it feels good.

Firsts: Bus, Pie, First Grade

This is Ellie on her first official day of First Grade. She is growing up.

Next two pictures are of the pie Dave made with Ellie last night after we went apple picking. We found this great, small, easily accessible orchard, Dowse Orchard, and Ellie had a great time and we were able to wheel her right up to the trees. She picked most of the apples!

This is the first pie Ellie has ever made. Dave brought our coffee table into the kitchen and put all the ingredients on it ready to go and easily reachable for Ellie. He used the small dry erase to teach her about the ingredients. She used measuring cups and took flour out of the bag and put it into the food processor as well as the butter. We put the food processor on a switch. Ellie kneaded dough, put apples in the pie, shaped the dough round the edges. She did the spices and everything. Dave is so patient and enthusiastic about her. Even when she has moments of averseness to new experiences he never lets that dampen his sense of fun in the doing things with her! As a result, Ellie had a great time. You can see the E in dough on the top of the pie. E for Ellie, what else? She was very excited when Dave showed her the steaming hot pie coming out of the oven! Dave Rocks!

First time on the bus this morning. In the first picture she is pointing to her car.... In the second she is not so happy about going on the lift. Third picture is of Juan and Marge securing Ellie's chair. Fourth picture is Ellie in the wheelchair van...not looking too happy. Fifth picture, Ellie in the bus with a wall of glass and reflection between me and my only child. Did I prepare her enough for this...apparently not. Dave just called me and reported that the Juan and Marge said Ellie did not cry, but she didn't want to play with her toys and was very quiet the whole way to school. When she got there Dave was waiting and she did not give him her usual huge smile and the happy throwing up of her arms at the sight of him. Instead she was quiet....is this going to be an issue for her and her therapist later in life...? I imagine she is feeling somewhat betrayed and processing this change. If this makes her unhappy and she does not adjust the 3.5 hours of extra time a day is just not worth it. But I will give her this week to try it... :-(

Sleep, Bad Meds, and the Bus

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

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

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

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

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

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

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

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

Morfeo? Morfeo? Where art thou?

The God of Sleep once again has left us. For months now. It's wearing on us all. Why? Reflux, Ellie's brain learning how to sleep without Depakote, head aches, insomnia....

I swear the sleep deprivation is the hardest part of this whole experience. It makes me divide my life into to parts: before Ellie and after Ellie. Before sleep deprivation and after sleep deprivation. This is not a good head set to be in.

I am hoping that in time her brain will rewire, relax, etc. I may try some Skullcap. Ellie's not happy about it either. She wakes up screaming and rather upset. I hold her. She tries to sleep and just as she falls asleep again, she screams. She does this from about midnight till 4am...most nights. I am tweaking with her diet and water intake late in the day. I give her antacids before sleep. We gave her a bath last night before bed to help relax her. We are creative in our trouble shooting. It's hard though. I am feeling grumpy yet grateful that my little one is more alert and seems not to need a nap in the day. She is making huge gains in school. On Friday her new teacher started using letter sequences to teach her pattern matching in preparation for algebra. Ellie got it right away. She no longer slumps forward in her chair due to fatique. She no longer constantly rubs her eyes in tiredness. She also has more control of her eye movements so I am assuming her ability to focus is better.

She is also very interested in food and trying my food in particular. See all the gains and all the joy! This damn sleep deprivation is getting in the way of my truly being ecstatic about all of this. My bright eyed inquisitive girl is back in force and I am too tired to really enjoy it. Sometimes I think it's all in my head. And I take this approach - change my attitude and life will appear better. It works sometimes. At others it does not.

One day at a time....but if anyone knows Morfeo, tell her from me that we really need her to stop by and hang out for awhile.

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?  

Glasses, Development, No more Cisipride, and "I love you"

It seems since graduate school, which I entered in 1997, life has been a constant game of catch up. There have been virtually NO moments, since 1997, when I have been on top of my to do list. This has got to be that middle life stuff I so despised in my parents. They were just all about work all the time and stressed out.  I can remember completing a task that was the last task and I was done.  My day was truly free. That was in 1996. I remember it was a sunny day in LA and I went for a run on the beach and then meandered to Trader Joe's and went to bed early. I can't even run any more due to my crappy knees.  

Ugh.

Today I took Ellie, finally, to her optometrist. He's great. He's actually the head of Optometry for Children's Hospital Boston. He probably thinks I  am an idiot though. I took her because for the last three months, Ellie has been throwing off her glasses. Whipping them off seconds after they go on. And as I understood it, she needs her glasses to help her eyes focus due to the CP. We were there from 10am until 12:15pm. Ellie patiently looked at cards and pointed to the little stripy boxes getting more and more obscure. She endured the drops that make your eyes dilate.  At the end, Dr. Hunter told me that her vision has not changed and that the power of her lenses need not change either. It came down to three explanations:

1. the fit was too tight

2. her ability to focus has gotten better so she doesn't need them like she did

3.  she's getting attitude.  

On our way out we stopped to visit the guy who sells the frames and he gave her glasses a work up. Fixed the little flaps that sit on the top of her nose, widened the side bits so that they didn't sit as tight, tightened and glued down the screws that hold in the lenses. He was great and so patient. Ellie was really tired at this point but has not thrown off her glasses since. So it was the fit. Dah!  Dave and Ellie and I all have glasses now but we are all new at this. I am glad it was just the fit and we will check that first next time. Does this mean her head grew ? I hope so.

Development. 

Where are we?  I don't know anymore. There is no marker no road map. She seems to be coming along. But lately I have had the misfortune of moms from that other world, where your kid comes out at 40 weeks and sits at x number of months and walks around a year, and eats and talks, etc. make comments to me about how surprising it is to have such adult like conversations with their six year old. They always, end these musings with a "ya know?" And I just say "mmm".  Ah, NO I so don't know. But what can you say? It's great to see their evolving relationship the awe that comes with these comments. I don't want to spoil it for them by making it about something else. So I sort of just agree. "Ya, that's amazing."  It is amazing, but in truth I have no idea what that is like. 

Ellie, in my warped and tired brain, is finally, officially six. Her due date was Feb 4, so there is no clinging to five any more. She's six and not having adult-like conversations with me.  And recently she has gone back to reading some of the books she did two or three years ago. What is up with that?  I feel anxious about this and don't know how to make sense of it. I don't know other kids that closely to know. My sister's kid, who will be 6 in March is doing complex craft projects, using a microscope and wanting me to teach her oil painting. 

There are benefits I can get through the Massachusetts Department of Mental Retardation. Yep they actually call it that. DMR. Nice huh. Progressive. But they give you money for stuff, like augmentative communication devises, etc. But to get those benefits you basically have to declare your kid is MR. MR. Mentally Retarded. Yep they still call it that. 

I haven't been able to even call them. Several people have given me their number. I haven't done it. What is MR anyway? Is anyone really MR? I worked with juvenile delinquents who had IQs of 70 - which was considered MR. But what I found of them is that you can do a lot with that. And Ellie. Ellie, she used to be able to do things that kids her age couldn't, like know her alphabet at age 2 and all her colors and shapes. But now, those same kids are having "adult-like" conversations with their mothers and we are reading books from a few years ago. 

I am not surprised. Not really. But seeing the gap widen - and it was probably always this wide or wider - just harder to see - is difficult. I am not in denial either. I want to see Ellie as she is. But what I don't want to do is label her something that fixes her in space and time and arrests her development. I think labels are THAT strong. I want to keep the bar high on her and keep hope and believe she will move forward at her pace and her time. I really don't want to label her anything. It's so final and I don't want others to label her either. I can sense a low bar being set for her miles away. The dismissal of possibilities stinks like a poppy diaper filling up a room. I can't stand for that. So it's not that I don't notice these differences, but I just can't live in them. They are only helpful in giving me ideas about things to do with Ellie to teach her about the world and maybe create a new neuro pathway via experience.

Today, after reading Jacqui's post, I showed Ellie what a letter was and where the stamp went. We will have to do that again to make it stick. I need to bring the world to her that a typical 6 year old could access though I am not sure of all that is. We recently started a ballet class that was inspired by Ellie. She looks really cute in her pink leotard and ballet shoes. Pictures soon to come. She has navigated that new setting beautifully and it's part of the bring the world to her paradigm. 

Cisipride.

Ellie is still off it and none the worse. I have to say I have really noticed the difference. When I am in the market I can consider bringing home grapefruits without shuddering. I can give her herbal teas without wondering and worrying. And having one less med to give her four less times a day is a huge thing.  Sometimes its the small things.

Another new thing she has been doing, spontaneously, versus being coaxed, is signing I love you. The sign for I love you is tough for Ellie. All the open handed signs are and in this one you have to keep your middle two fingers down and the other three up. It takes her about thirty seconds to make it using two hands. And that's a long time in communicating and when you are six. Yesterday, Ellie signed it to me when I was pumping gas and tapping on the window to amuse her while I did so. Moments like that sustain me. They really do. It was like since Ellie was born. It would be a look she would give me, or a nuzzle, or just a sense that she would emit into the ethers. The message is always, "It's going to be ok mama." 

I am not sure what ok is going to look like, but I trust Ellie.

Time for Toilet Training

I hate making equipment orders ever since a very junior PT in 2003 ordered a adaptive chair and a stander that were way too big for Ellie and having it take 6 months and lots of phone calls and waiting on hold to correct it, I am wary of making equipment orders. If you screw it up you are simply screwed. And it's Ellie who misses out. So I have been delaying ordering her a potty seat. And I know my delay has probably been as long as it would have taken to correct a bad order. Bad mama!

Ellie can't sit very well on her own so I need something that will hold her up while I help her clean up so she doesn't fall. I like the idea of a low to the ground stand alone seat because I remember sitting on the edge of the adult toilet as a 2 year old being petrified to fall off. Yes. I actually have many memories that far back. I also like the idea of her having her own separate seat from a germaphobe perspective.  Lastly, I like the low to the ground seat because she can practice sitting down on it and standing up from it. An Ellie size seat might feel more fun like a toy versus any thing that is threatening.

Any suggestions? What has worked for your child in this matter?

Any thoughts you want to share will be MUCH appreciated! I need to get off the fence and get this going. It's time. Ellie's ready and I have to get ready too. Easier said than done. Not sure why I am dreading this but I am.

Ellie Meets Santa

The order of the pictures is a bit off but the very last one is when Ellie first sat on Santa's lap. She met up with Santa at her school's holiday jubilee this December. She wasn't too sure about her dress until Dada saw her in it and said, "Oh Ellie, you must be one of Santa's helpers in that dress!" After which the dress was perfect!

She was in awe to say the least, when she finally got to meet Santa. After she had said her initial hello which consisted of her taking in Santa for a good thirty seconds. She immediately finger spelled S-A-N-T-A and Santa, being the awesome guy he is, knows sign language and was properly impressed and Ellie equally as delighted. You can see Ellie making an A and an N in one of the pics. You can also see her gluing decorations on a stocking and receiving a gift from Santa.

It was a great day. The best part of course being S-A-N-T-A!

Nightly Foot Soak and Sharing a Laugh with Mama

Sunshine

Will walk for Hugs

Happy New Year!

Wishing you all a GREAT 2009! 

Thanks to everyone for all the useful links, advice, and supportive comments in 2008. 

In search of a recessed key keyboard

Hi everyone,

Hope you all are having a nice holiday season. Dave has been home since Christmas and will be until New Years so we have all  been together, just the three of us, for a week and it's been heaven. Dave is so great with Ellie and together we get so much done for her. So much to tell you all, especially about Bean and Ooee but that's for the next post with pictures.

Today I just wanted to pass on this resource: Teaching Learners with Multiple Special Needs

It's a great blog written by a teacher of multiply disabled kids.

Lastly, we are looking for a recessed key, key board or key board adapter for Ellie. One that would allow her to use one of our computers. We need some sort of grid that goes over the keys so that Ellie can poke her thumb down into them so that she can isolate different keys. We would like to be able to hook it out to one of our lap tops so she can use them better. Right now she has a huge amount of trouble isolating the keys.

If anyone knows of anything like that, please let me know. Thanks!

Musings, Solstice, and Ice

Ellie has been really tired the last two days. She has been fighting a cold and it has been freezing here in New England. Low pressure days and snow and ice hugging the walls of the house. The wood stove keeps it all at bay but the cold creeps into the corners ready to pounce and the low pressure is keeping our energy low. 

Winter Solstice. Shortest day of the year and the sun god seems to be fighting the moon goddess by being glorious and glaring off the snow making the most of his truncated day.

I am tired.  Tired after a fight. Things are somewhat resolved with Ellie's school. I will go in after the new year and sit in for the week and make sure it's a good new plan.  I will never again trust the trusted so well as to leave Ellie in a new situation without sitting in and checking once, and twice and again and so on.  Two new classrooms instead of one. One new teacher and one old to share the split level needs of my aware, eager to learn child who happens to be quadriplegic and whose spine is always in danger of contortion. Positioning is important. 

But she's tired my little one. She's growing. She's off her Cisipride. We ran out, the manufacturer took it's time and then when we got it 2 days ago we asked ourselves if we should put her back on. Ellie's GI doc told me of a new study about it that showed Cisipride is linked (in rare cases of course) to increased seizures. Great. What if it was the Cisipride that brought on the seizures in the first place? What if she goes off it and the seizures go away? What if we can get her off the seizure med that saps her energy? What if? 

Ellie does have a cold and cough. What to do? Put her back on it and see if the cough goes away? Keep her off it and trust her cold is the cause of her cough, the same cough we all have. She hasn't had a temp so no aspiration -right? Her nurse listened to her lungs today and confirmed her cough is all in her throat. These are the type of considerations I face - every day. Her life is precious to me. My experience dealing with the medical issues she has is always a weighing of short term gains against long term consequences.  My experience as a mother is all highs and lows and fear and wonder and sadness about what is not and thankfulness and joy about what is. Ease seems to be the missing part of the potion, testing my ability to be happy and carry on.  I wonder if the moon goddess knows anything of that and is trying to provide a time to rest and reflect with her constant night?

No Safe Place

Since Ellie left the preschool at her school and "moved up" things have been off, slipping. I am disappointed. All this talk about moving her up to work with kids that are closer to where she is at cognitively was not realistic nor has it come to pass in the ways promised. The programming in the classroom is so much less which equates to a lot of down time for Ellie. There are just less activities, less variety, less attention for all of them. And her physical needs, which are substantial, are NOT being met. The teacher and the two aids in the classroom are great people and all love Ellie, there's just not enough happening. All the stuff Ellie was doing has not progressed forward in any way except in Oral Motor where things are rockin. But classroom time has too much down time. Ellie is a nerd - she needs more academics, more activities, more learning.

Why? Why? Why? Why couldn't she have stayed in her old classroom for another year? I know she just turned 6 in November, but technically she would not be 6 until February 2009 had she not been born 3 months early.  Why? What did we do wrong? What didn't we do right? I am upset.

Yesterday Dave came home and told me that Ellie was in a stander with the tray in a vertical position so close to her face that she could barely turn her head. I was livid.

What is up with that? How dare anyone do that to Ellie?! If they were trying to get her to look up the better way would have been to use a book or sing a song or get her attention another way. It's dangerous. What if she sneezes and smashes her head against the tray and tweaks her spine? What if her muscles get tight and that tweaks her spine? Some times in the new setting I feel like she is being treated like she has less going on in her brain than she does. There is an old school quality to it like stories I have heard of things happening to the disabled when they were labeled less pleasant things. It doesn't feel good that Ellie being in a position like that is ok to all those looking on and who put her in it. It doesn't feel safe.

I feel guilty. I was working, teaching, trying to be a consultant again and Ellie has been bored and in pain from no one regularly checking and giving her a break from her afo's. We did have a team meeting to address these things in October. But it some of the issues I have now are the same ones. That is frustrating. 

Ellie has taken to folding over forward when she is in her chair. She NEVER does this at home. It's a bad sign. They think she does it because she is cold. She NEVER does that when we are outside with her in her chair when she is with us. I think she is bending forward because she is either try to get someone to notice to take her AFO's off and / or there is nothing to see -she's BORED. She is also sleepy all the time at school, but the minute she gets in the car and we start doing her songs and video she perks right up. Ellie's modus operandi from day one when she is bored has always been to check out via sleep. She is doing that at school. Lately too in the mornings she doesn't want to leave my lap, Dave has to literally tear her away. She used to love school.

Gone for 30 Seconds

Ellie had a 30 second seizure today at school. 

30 seconds. 

I will take it over the last couple that have lasted for nearly an hour and only came under control after multiple doses of anticonvulsants.

30 seconds. Her lip was twitching and she was staring out into space, non responsive, and then she slept for 30 minutes.

Sigh. She has been fighting a cold. She did not have a fever. She has gained about 3 pounds and a few inches in height. We also started doing cranial sacral therapy again which has helped her tremendously in the past and is sure to get the CSF flowing and bathing her brain optimally. 

I went down to the school after I heard. She seemed tired but fine. When it was time to go to computer class she nearly jumped out of my arms, all four limbs in full extension she was so excited. That's a good sign. She was able to show her teachers how she is able to add and subtract. She wanted to sign all the letters to that wonderful song "A, You're Adorable" on the ride home -which is what we do every ride home. 

She was gone for 30 seconds and back again. I'm glad it was a short trip this time but sad she had to go at all. I am perplexed. I am not wanting to go and have a level drawn because she just had blood taken 10 days ago and because she hates that and because I hate her being on seizure meds. She's just not as bright on them as off. And it was 30 seconds. If all her seizures were like that I wouldn't medicate her at all and there is an argument out there that her seizures might have become more intense because I medicated her in the first place. Her initial seizures lasted 30 seconds followed by 30-40 minute post-ictal naps. The problem was she was having a few in a row around naps and upon waking, your typical between a rock and a hard place situation.

I am on a cleaning binge now. I clean when I am upset. It's a little more productive than losing it or crying. I save the crying part for quiet moments when I'm alone. I do some of my best thinking while tidying. What to do? Never a dull moment. 

Picture Description: Ellie wearing the BEAUTIFUl sweater that Maureen knitted for her on her 5th birthday. It fits perfectly now and is oh so warm. Thanks again Maureen!

Just a little green, like the colors when the spring is born

I think I'm a freak.

Ellie has a cold and a runny nose but even with that is sleeping pretty well. Of course now that I write this the mokas are going to come all the way from Jacqui's house in Australia to mine to mess that up. And maybe I don't mind so much. She was up last night, but for the past month she has been sleeping through most nights. 

That's pretty good right, after 6 years of interrupted sleep? 

But...

It freaks me out when she sleeps so well. I wake up in a cold sweat thinking she has died. I go in her room and in my head see her cold and blue as my heart goes tachycardic.  It's not a conscious thing. I want her to sleep - god do I ever want her to sleep through the night every night for the rest of her life and mine with all my tired sleep deprived heart. The sleep of children is precious, warm and peaceful as their brain develops and their bodies grow and they dream their dreams. And Ellie has taken a stretch over the last month - a couple of centimeters that make a difference in how her clothes fit. And she is cognitively coming along great due to all this sleep. 

But, when it comes to sleep, I can't help but remember other kids I have read about that didn't wake after a nap or a night and my nervous system can't forget the first two years of Ellie's life where she slept beside us in her Arms Reach. When, if I heard her breathing catch, she was choking on secretions, or her body was so relaxed in sleep her tongue would slide back and block her airway and then later after she turned four, seizure. Always around sleep all the badness, and scariness of death, reaching out to snatch her away from us, me and Dave swatting it back with a small blue bulb suction or diastat and 911 or repositioning and a gentle pound on the back to stop the choking and help her produce a cough. Constant visits to the ER. Fear of her dying. 

Maybe that's why it's hard to trust this sleep through the night. I don't trust it. It scares the crap out of me. I thought about putting her back in the room with us, but she is such a light sleeper and we are tossers and turners and snorers who will wake her up. Which is why she has been in her own room, own bed for a few years now, tyranny of the monitor and all it's sounds or no.

Still, there are many times when I hear her stuffy nosed breathing and go in and make sure. Or the nights when I don't hear anything on the monitor, nights when she is not stuffed up her breathing is so still it's hard to see her chest rise and fall. I gently put my hand on hers, fearing hers will be cold, and of course it's not, it's warm, the way kids are little furnaces when they sleep. Then I just wait till I am able to hear her catch a breath feeling self conscious that is she wakes and catches me listening so close it will disturb her. Once I do hear her breathing I go back to bed with this heavy feeling of guilt like I should just sit in the chair by her bed for the night, just in case. 

I think I have post-traumatic stress syndrome. 

Will I ever trust sleep again? 

Lots to be grateful for

 Picture description: Ellie, with pigtails flying high, signing butterfly, which she makes fly over her head. Like I said, so much to be grateful for.  Happy Thanksgiving Blogosphere!

Yesterday a child came out to wonder...

Ellie turned 6 yesterday.

I can't believe that much time has gone by since that rainy, scary Saturday when she was born in 2002. She has come so far and I have learned so much about love. My heart always get choked up on her birthday because images of her birth and that day are still so very vivid in my mind. Like flashbacks they were popping up throughout the day as I watched my daughter, my beautiful Ellie as she is today I couldn't help but see the tiny blue body lifted out of me 3 months too soon. Dave pacing outside the door of my recovery room tears streaming, and frantic as I massaged my legs trying to get the feeling to come back into them quicker so I could go see her as he raved outside the door into the abyss as our lives changed forever. Not feeling the pain of the emergency C-section and the adrenalin to get to my baby.

And that first moment seeing her in the incubator with 3 wires coming out of her belly button, breathing tube down, IV's in each leg, raw fragile skin, baby white hair on her perfect round head. The on the spot breakdown, feeling that I had failed her horribly. Pain. She was in pain. I could feel it. My poor baby thrown into the world too soon, too fast without air. I don't think I will ever really get over that. I think that's just the way it is. It servers as a dark contrast to all the good that has gone after. A reminder to appreciate everything and anything that is good in the moment and know that everything she accomplishes is against the odds and a blessing.

We choose to celebrate her birthday each year with gusto. Celebrate her life and the fact that she is still here with us. We like to have a party for all her friends, teachers, therapists, nurses and care givers, family, and other parents from whom we have learned so much, to say thank you. Without all of these wonderful people we would be lost.

Ellie, who started with so many challenges has achieved so much and there is no stopping her. She reads, she dances, she sings, she signs, she laughs and tickles, and does subtraction and addition, and loves and loves some more. I am so lucky to have her in my life as she brings me so much joy. This birthday I was really struck by how many people love Ellie and us and who are in our lives supporting us and taking us along. We have our village and it's a great one. We are truly blessed and grateful.

Too all of you who called and could not be there yesterday, we missed you and love you and had the vanilla cake with the vanilla icing, and it wasn't the same without you. ;-) Scroll down and see the montage for more pictures of the day.

Special thank you to Carla, the lovely lady by the key board in the picture above, who volunteers every day at Ellie's school to conduct music classes for the children. Thank you for coming to Ellie's birthday party and playing all her favorite songs. Ellie LOVES music more than anything in the world and your being there to play the songs that she knows and loves made a huge difference. Seeing all her classmates and their siblings dancing and rocking out together was pure joy and could not have happened without you. Thank you doesn't even cover it!

Thank you too to Bonnie whose help in the morning and during the party allowed us to keep our sanity and get all ready and for doing Ellie's hair. The french braids were perfect with the flower crown. Ellie looked lovely. Thanks for all your help and love you give Ellie on a regular basis (and for "hiding guy" and new and improved Bear Hunt both of which she won't put down!)  

Thank you as well to Liz and Marla for all the balloons and signing and "water bottle smiley" and keeping more than one child from near immanent self destruction with all our open shelving as well as all the love you give Ellie regularly. I still can't believe you found a new "raggedy" which is a feat beyond OTT and Ellie has not put her down since. Between Raggedy, "hiding guy" and new and improved Bear Hunt (the last two thanks to Bonnie) we had trouble getting Ellie to stop playing and go to sleep last night! 

Thanks to everyone who attended and for all the gifts for Ellie. It was great to share with you this happy day.  

Happy 6th Birthday Ellie-luv!!!!

Photo and video editing at www.OneTrueMedia.com

Get out and Vote!

I am away again in the great state of Wisconsin. It's very dry here as the bad lands are not far away and all moisture gets sucked into them like a big burning dry vortex. I will be here all week. I was worried about how to vote. I called my town hall and they said come on down, but of course, not in as friendly a tone. Did I mention I live in Eastern Massachusetts where people are all business all the time? They don't feel the need for friendliness and niceness is something that was lost on the Mayflower. Maybe they are still feeling the repressive effects of the Puritans?

It took me all of 12 minutes to vote (see all that time saved by foregoing all the niceties). 12 minutes. In and out. I had to draw a line between two boxes with a special felt tipped pen. There were five other people voting at the same time and a steady stream of people coming and going for the same purpose. The atmosphere was brisk and efficient - a thing I do love about doing business in New England. There is none of the languid carelessness found in LA. 

I handed my ballot to the poker faced lady at the counter and said, "No hanging chads with that!" 

She brightened and said, "No they've made it a lot easier this year." 

"Thanks!" I said leaving. It never fails to make a person feel good by noticing their work. 

I think I just may have to vote early every election. No waiting, no lines, no stress - just exercising my constitutional privilege.  

Go exercise yours! It's important. 

If you suspect that things are not as they seem and your vote is in jeopardy - report the town clerk who may be violating the constitution and all that our nation was built on. CNN has a hotline you can find on their site. 

I want my candidate to win but even more than that I want everyones' vote to be counted. I want our system to not be as broken as it is. 

Hard to leave

I am leaving today for Minneapolis and will be gone until Sunday. I will be doing some work for a client as well as meeting some old friends. In the planning stage I was excited to go. But now, as I wait for the cab to take me to the airport I am sad. I always feel this way when it comes to travelling alone. At first excited for the adventure and then upon the point of departure, really sad. They are very hard to leave, Ellie and Dave.

I tried to tell Ellie about it this morning but it just didn't compute. Time is a weird thing to communicate about in general then try to do it with a 5 year old. She didn't want to leave me when Dave came to take her to the car and I feel really, really bad that when she get's home I won't be there. When she wants to snuggle in to go asleep on my lap like she does most nights, I won't be there. I am worried about Dave too. What if she is up every night like she has been for the last week? What if he is so tired he falls as he is carrying her down the stairs in the morning? What if she gets sick? She was a little not herself yesterday, and here I am leaving.

I guess it's a good problem to have, two people that it tears your heart out to leave. There's my cab. Can I not go? Just say never mind? Nope. Sigh.

*picture is of Ellie sitting independently on the couch playing with her farm toy in her jammies.

It Doesn't Take a Saint

I was having lunch with a colleague of mine. We started talking about our kids. I mentioned that Ellie was doing really well in school and that we were really happy about it because she has come so far. They agreed and nodded and then said, "You're a saint."

I said, "No, NO! Definitely not. Ellie's a great kid, probably a lot easier to deal with than a lot of kids."

But ya know, I wish I had said something more to the point like, 

"Do you really think you have to be a saint to love your own child if they happen to be disabled?"

And then, in an ideal world, I would have quietly waited for their answer. I am sorry I didn't have it together to say that instead of babbling like I did.

Because isn't that what that comment means? You're a saint because only a saint could love someone who is imperfect or drools or is just basically in that other category most people don't like to think about. Like you have to be Mother Theresa or something (no offense to Mother T.) but jeez!

I remember one of the other mom bloggers writing about that. But this is the first time it was ever said to me. It just seemed so out of context. One minute we were talking about our kids, the next I was defending my child's loveableness.

So for the record - it doesn't take a saint to love Ellie. Not even close.

Beautiful Ellie and Beautiful B.

There is a little girl who moved in a couple of houses down from us several months ago. Her name is B. She looks to be around 6 ish. She is shy and just stares at me whenever I say hello to her.

She loves Ellie.

Two days ago, Ellie was out for a walk. Whenever Ellie goes out, if the neighborhood kids are around they always come up to her. And when I say that I mean they come up really close to her and say hi and want to push or explore her Kid cart/wheelchair. They are alway so enthusiastic to see Ellie. I know they wonder where she is when she is not out and about. I think sometimes they worry about her but like kids do in that totally pure, nonjudgemental, your life is hard kind of way, but more so in relation to her place with them, whatever that is.

Ellie used to not really pay too much attention. But lately she stops doing whatever she was doing like reading signs or playing with her Raggedy Ann doll who always likes to go for walks too and she will look at the kids and sign hi. She is rivetted by them. This is such a nice indicator that she is maturing.

Two days ago B. asked Ellie what she would be for Halloween. Ellie didn't answer. Undeterred by this B. suggested that Ellie be a fairy princess. Then B's eyes lit up and she exclaimed, "No! You should be a Rainbow Fairy Princess because you are more beautiful than just a fairy princess!"

WARNING! This Video is Censored. If the F word offends you and John McCain does not - skip this video. Regular blogging resumes tomorrow.

See more Hayden Panettiere videos at Funny or Die

Long over due, but for those of you who couldn't make it...enjoy! It was a great day.

Make video montages at www.OneTrueMedia.com

Reality Check: Still between a rock and a hard place

We had to start Ellie up on the Cisipride last night. And ya know, I am sad about that. The doctors said she had to discontinue it on the 5th for the surgery on the 8th. We did and found her to be none the worse. But Thursday she was a little gaggy and up all night, not vomiting, but refluxing and in pain. Last night and Friday, more of the same. Such a bummer. I was really hoping to get her off the Cisipride.

So in truth, it's the meds AND the food combining no sugar, low acid diet AND the Slippery Elm that are keeping her esophagus safe and healthy. Which also tells me that her reflux is THAT bad that she needs all of that still. The small bubble of hope exists in the fact that we have not upped her medication dosages on the Cisipride, Protonix, or Zantac in over one year. Will she grow out of needing them some day? That' s a question that can only be answered by looking at her brain damage and believing and brain plasticity and hoping that some of the alternative therapies we do with her help heal her brain. Hoping too that stem cell research will continue and find a cure for brain damage that is with out the risk it is today.

Signing off, from Earth, feet on the ground, trying to see it how it really is.

So much to catch up on, so little time

Ahoy thar me harties!

Can you tell who I have been spending a lot of time with?  Ellie loves it when she plays that song on her Wiggles guitar and we go along.  

Ellie has been home today because of her surgery yesterday. Who ever said there are no side effects to ear tubes got that dead wrong. Just like ALL other child medicine decisions there are crappy trade offs. CRAPPY. We had ear tubes placed when Ellie was 18 months due to chronic ear infections. I think her mild hearing loss is due to those infections. So we had to do it. I do believe we made the right choice. 

Fast forward to 4 years plus later - (sorry not in the mood to do the math) and we get to learn about yet another medical condition - Cholesteatoma. Where the pocket left by the long since fallen out ear tube has become an area of negative pressure and is creating a keratin build up in her ear (basically dead tissue) which becomes a tumor of sorts that will eventually grow to a size that can destroy those three lovely little delicate ear bones that allow us to hear. Great. 

Hence yesterday's surgery to remove the Cholesteatoma which is a very involved thing because they have to remove the keratin build up -which is simple - but then cut a little bit of cartilage from her ear and put it where the negative pressure pocket is - like a little wall that will stay straight versus concave and keep dead cells from building up again - roughly a 2-3 hour surgery.

Her G.I. doctor, whom I adore for the record, jumped in on this and scheduled an endoscopy too. He has wanted to do this for some time, but I have been holding it off because you have to go under general anesthesia to do it, and general anesthesia, as well as elective surgeries are two things we scrupulously avoid.

Yesterday was the day. We went in at 10 and Ellie was prepped with us. She was starting to get upset by 11am because she was hungry and because she understands almost everything that a normal 5 year old would and she knew something was coming. I was very pleased when the anesthesiologist asked if he could give her some Versed through her g-tube to help her relax and not be traumatized by the mask they would put over her face to put her out. With in 10 minutes of getting the Versed, Ellie was smiling and would allow us to put her on the bed and she had a lovely stretch. Cute in a weird, this is wrong, kinda way seeing your 5 year old on drugs. But she's a happy drunk. I was glad that she was relaxed going into the operating room.  I walked her to the door of it, as far as they would let me go.  Ellie was sleepy at this point, and I kissed her and they wheeled her in. After the door closed behind her I burst into tears. I felt out of practice. Things have been going so well. I still, like any parent, HATE seeing my kid being wheeled on a gurney to the operating room. It's an awful, horrible pain in the heart.

I went back to Dave who was gathering up all our stuff (Ellie's stroller, toys, clothes, etc.) and I was still crying but trying to hold it in. It wasn't like I was wailing or anything, just looking hard at the floor and I could feel the blood in my face and the tears were streaming. A really nice nurse closed the curtains and I took a minute to get it together.

We went to the waiting area and  - waited. That wait. It's a particular kind of waiting I will never, ever miss if I never have to do it again. Every time the nurse would come out all the other parents would look up hopeful and fearful at the same time for news.

Then, abruptly, 45 minutes in, Ellie's ENT surgeon came out. Dr. Trevor McGill. He's from Ireland and has a Dublin accent. He's older, gray haired but spry and energetic. He looks 10 years younger in his scrubs and cartoon character surgical cap than he does in his street garb, which frankly is rather Irish priest-like gear. But he comes out with a picture of Ellie's inner ear.  They had removed the Keratin to find that the pocket of negative pressure left from the initial ear tubes was not as concave / deep as they feared. His proposal was, instead of doing the full on Cholesteatoma, which is a 6-8 week recovery time, they would instead place a new ear tube next to the pocket which would even out the pressure and basically buy Ellie some growing time. The theory being that adults don't get Cholesteatomas...

After a short discussion, because we were very conscious that while we were discussing, Ellie was unconscious on the table, we signed the consent form to do this. However, writing this now I almost wish we had said no. No to both the  Cholesteatoma surgery and the new tube placement. No because if the Cholesteatoma has not gotten any worse - maybe it never would have gotten worse. No because what if when the new tube falls out the same damn thing happens? No because - it just sucks to have to make these crappy, invasive, put silicon tubes in my daughter's head choices....

I hope we did the right thing. I really do. But that's the thing about being a parent in this situation, I at least, am not 100 percent sure, 100 percent of the time that the choices I have made are the absolute best that I could have for Ellie. And that is with trying my hardest and doing my homework. It's just the awful nature of it.

The good news is that her recovery time is much less and the whole tumor growing in her ear is gone. 

About 45 minutes later the G.I. surgeon came out to give us the news of Ellie's endoscopy. An endoscopy in this case is when they put a scope (small camera) down Ellie's esophagus into her stomach and into the first part of her intestines to take a look as well as some tissue samples. The really good news here is that Dr. Fox, head of GI at Children's Hospital Boston, said that he didn't see any irritation. That her whole tract  as far has he could see looked great. Better than most peoples'. To all the doctors who have scoffed at her diet and even to my GI doc whom I really like but has still been so worried that Ellie's esophagus was rotting away because we never got her the Nissen Fundoplication - I really do have to take a entirely, smug, poor form human moment and shout     HA! 

I also, when I get off my scales of justice have to think it is the Slippery Elm - that no one seems to understand but the herbal folks and health food store junkies. Slippery Elm has to have been the thing that has helped Ellie's digestive track heal and be healthy. That and her no sugar, low acid, food combining diet. It's all working - really well. So HA HA HA!

OK - yep rather a few human moments there. 

The great thing was too that instead of having to stay over night on serious pain meds Ellie got to go home with us. Today she wanted to watch videos and snuggle and was tired but kept all her food down and wanted to play. We have been controlling the pain with Tylenol and she has been a pretty happy, if not tired, little cutie pie.

I am almost done grading papers etc. and I need to post pictures of Ellie belly. She is now 36 pounds! 36. I can't believe it. She is growing and there is so much of her to hug these days. And when she is not having to deal with surgeries she is doing great. We have come a long, long way and I am thankful. There's nothing like seeing your kid wheeled into the operating room to make you feel 1,000 times more grateful for their existence in your life than you were before - even if it's hard to believe that is possible.

See for yourself.

Tina Fey IS a comic genius, but in the case of spoofing Sarah Palin, she has a lot to work with.
Check it out:
The actual Couric / Palin interview
Jack Cafferty - outraged and RIGHT!

Is the average life expectancy of white males still 73? 

Sarah Palin, Republican Vice Presidential Candidate, Tina Fey, Genius

Out of my comfort zone

Hi Everyone. Life has been crazy for me this month due to the course I am teaching. It's been a great experience teaching but a huge time commitment.

Ellie is doing well in her new classroom this year. They are definitely feeding her brain. We are a little concerned with her positioning needs and it feels a little bit like we have traded some things for others. That's not a good feeling. I sometimes think I am the only one who remembers that she is really just 5. Though she will be 6 in November she should have been turning 6 in February. I am worried about her emotional needs. Because though she is wowing everyone with her spelling and reading and finger spelling and computer work at school, I am asking myself, questions like:

When I was 5 in kindergarten we did crafts and music and colored and had naps. It was all play based learning. And then in first grade it was table work, group work on academics. But when I did it I was 6. Not 5. So is this ok to have put her in that environment and ask her to give up so many things she loved about being in preschool?  Instead of swimming twice a week she does it once. Instead of getting to roll on the jumpoline (this huge blow up trampoline) she goes on field trips  - meaning more sitting and more sitting versus stretching out.

It just seemed like the pre-school was more fun for her. I do know that there were times when the rest of the class would be doing some play type learning activity and Ellie would pick to read a book. She did get the reputation there as being a bit of a nerd. So there is evidence that she needed a more academic approach. But I'm worried. 

I want her to be happy. I want to protect her spine from curving which is why Dave and I are both worried about making sure she is allowed to stretch out  - throughout the day - not just in the afternoon and not just once. I am worried that her AFO's are not being checked enough and she will get another pressure sore. I am worried that some of the basic goals like working on potty training have fallen off the radar. 

What really sucks is the guilt I feel because I am away from her. And I won't be able to sit in with her at school until next week. That is three weeks of just dropping her at the door and letting her fend for herself in a new situation that I am finding it very hard to get any insight into. It's like pulling teeth to get information from the new crew in the new class.  I am sure my lack of comfort with the new situation is due to the imbalance of information I have about her day compared to the huge number of questions I have. 

I guess I am learning what I am teaching my class and what I talk to my clients about all the time - people will support change that they help to create. I see how this works in reverse. We were told that Ellie would be moving up. It definitely was not our idea. It didn't feel like we had any say. We could have fought it but any parent knows how stressful fighting their kid's school is.  And we trust her new school. They have been so good for her and good to us. That is also part of the reason we were caught off guard with by having concerns about a situation that seemed flawless for the past year and a half. 

So maybe I am just resisting the change because I can no longer imagine every bit of Ellie's day and feel that she is safe?  I have lost that competency for now and have to make new relationships with the new crew - which seems really difficult when I am working so much and their personalities are so different from the old crew who were markedly outgoing and information giving.

The good news is, I think Ellie is managing well.  She has not been exhibiting any of the behaviors she does when things are really bad. She doesn't wake up screaming. She is not extra clingy. She did cry the first week each day at points. I assume out of frustration in the process of having to get to know new people and being exposed to new things. And fair play to the new team for letting us know. I assume she has not cried since.   I think too I am extra protective of her because of her rough start in life. I think she has suffered enough and I want her days, every day to be good - really good. I know that is not realistic but I will certainly try to realize that goal for her as long as I am breathing. 

On the up side she has taken to working on the school's computers - which she would not touch last year (though she would touch our laptops at home the big ones at school made her upset) and that is huge progress. She seems really attached to the new teacher and teacher's aids. She seems happy.  And she is tired at the end of her day - which I hope is a good kind of tired - the kind of tired you get when you have been engaged in interesting activities and fun. But I just am not 100% sure - and that bugs me!

Still trying to find the balance and looking for the new comfort zone in all this change.

First Day In New Class...ummm... two days ago

I screwed up. I didn't take a picture of her on her first day in her new grade/class/etc. She was so cute too in her new stretchy/comfy jeans and pink Lucky Peace and Love t-shirt and pig tails. I cut her hair just a bit  - it was down to her bum. I asked her if she liked her long hair and she said no (alright, I asked her about 5 times to be sure and each time no, no, no). So I cut 4 inches off. He hair is now down to her shoulder blades and allot lighter on her head such that her cutie-pie pigtails are back. 

By the end of her first day she was making the Peace sign to all who would see (using her right hand to hold up her two fingers on her left) - yes that is way too heartbreaking cute. I am sure someone there read her shirt and showed her how to make the peace sign which made the peace sign way too cool to be ignored and there you have it. 

Overall she is doing great with the transition. It's been a slower start than we expected. And the first day Ellie communicated via picture symbols that overall she was bored. And there have been a few bumps like the fact that her new classroom is about the size of my closet (which is way too small for a kid that needs to be on the floor to stretch out and roll, etc.) and not very wheelchair accessible. But in true "new school" style they are fixing it by this Friday with parental help. Yes, new school still rocks, still listens to us, and still cares about our Little Miss.

Today Ellie's new teacher surprised me. She showed me a sheet of images and words that Ellie had created by herself on the computer. She said, "Ellie worked on the computer today." And I replied, "Oh, did she actually touch the computer?"  Teacher looked at me like I was daft and said, "Yes! She loved it, she did this!" Showing me the sheet again.

I was happily amazed. Ellie loves my computer and Dave's. We have the missing keys to prove it. But last year when various people attempted to get her to work on "their" computers, school computers she acted like touching them was the scariest thing you could ever ask a person to do. There was, let's just say, a great deal of resistance to that idea.

So get over me why don't you. Once again warrior princess make a giant leap forward without telling me! That is such a good problem to have (not really a problem even if I appear idiotic to people who only know the latest version of Ellie and don't remember all the other versions because they weren't there).

We are on Ellie 007 I think! She is like a bond girl these days. This morning before school she insisted on going in her Pony. She immediately went over to the chair with Dave's (turned off lap top) and wanted to open it. Right, because if she's in the Pony her videos should be playing on the lap top in that room and on the TV in the other. It's a party to be in the Pony after all and the right atmosphere is necessary. She is very inspired to take big steps for kisses and hugs when she reaches me. That is the cutest thing ever, other than the other cutest thing ever I just told you about. 

I am impressed by how she is taking consecutive steps. She really understands the whole one foot in front of the other thing. She is such a hard worker and so determined. It seems like with all this activity and all these new brain waves, as they say in Ireland for epiphanies, she is having that we finally have the med balance right. One that allows her brain to relax so she can sleep which she has for two nights in a row (yes calling the Mockas...) and having enough energy during the day to rock out in her Pony and impress everyone with her vocabulary.

I can't promise any pics for the next 3 days. Tomorrow I teach my first live graduate school class and again on Saturday and Sunday and the rest of September is going to be a blur between the teaching all month and my consulting days. I love my work but I miss Ellie when work takes me a way from her either mentally, physically or both. I wish we were independently wealthy and all I had to do was take care of her. And I feel bad that she is in this big transition without me right there by her side as much as I was last year. I just miss her in general. It's been awhile since I have been flat out with this #$%^& course. What was I thinking? It's a love / hate thing for sure with my work. Sigh. Time for sleep.