Day 2

Dave stayed with Ellie last night after she was admitted at 11pm. We are in a single private room under "precautions" because of Ellie's fever which seems to have subsided for the moment. It's definitely nice to have our own space and it's south facing. We expected to have the MRI this morning, but because of the fact that Children's has limited number of machines (still trying to assess the exact number) and limited hours of operation....Ellie is in a long line of pre-op brain tumor patients. No argument there, I agree with that prioritization. But it means that we are here until tomorrow. I spoke with Ellie's wonderful pediatrician, Dr. Cloherty, just now. He thinks it's her shunt malfunctioning and discussed all the options with me. There are the considerations at hand (this kind of thinking is very like the logic "if/then" trees I did in my undergrad philosophy courses):

IF the MRI shows enlarged ventricles, THEN shunt revision brain surgery. The good news is the Dr. Gumnerova, superwoman and neurosurgeon all in one, is in town. That said, I hate brain surgery. We have lived through so many of them with our little miss and they terrify me, even with superwoman at the helm.

IF the MRI shows no change (it could still be the shunt, because someone with Ellie's level of brain trauma and brain atrophy, it takes a lot of pressure to expand the ventricles) THEN Dr. Cloherty will ask Dr. Gumnerova to tap the shunt. In doing that she would flush the shunt which can get it working optimally and/or will show it is definitely not working...

IF Dr. Gumnerova refuses to do that, we THEN continue down the Migraine route with the Periactin

OR

Try Periactin and a small dose of Depakote - the logic there being to try to go back to the medication balance Ellie had this summer before these episodes began. IF that works (the two meds together) we THEN go for a month or two and IF she is symptom free we THEN pull one of the meds to figure out which one it was that was working...

He again, speaking for all the GI doctors in the world (not really, but it feels that way) suggested we reconsider doing a fundoplication, which he said could get her off all the reflux meds and ensure that she keep down her food. I have written extensively about the fundo...but seeing her lose all this weight and the effect all these meds have on her, I am once again looking for the lesser of two evils. That might be another new name for my blog "Ryn Tales: Looking for the lesser of two evils".

Here we are, waiting and watching and thinking in IF/THEN scenarios. Through it all my dear Ellie continues to shine brightly with a light from within that sustains us all.

***Image description: Ellie sitting on the fence of the Safari Exhibit at the Dublin Zoo in early August, held up by Dave.

In hospital...again

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

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

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

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

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.

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."

;-)

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.  

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?

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!

Never a dull moment

OK, OK, I'll say it, UNCLE!

Yesterday morning Dave went very early to his hyperbaric oxygen treatment. Ellie had been up again at 3:47am until after 5am. She wanted to come down at 5 but I didn't let her because I was worried about how little sleep she was getting. I had fed her and changed her diaper and held her and tried to coax her back to sleep getting more and more frustrated. Finally she lay down and scooted her way close to me. And then alternatively had reached out to grab a fist full of my t-shirt and then push me away. I decided that maybe my presence was too distracting so I put the blanket on her and stood by her bed until she fell asleep. Around 8am I heard her peep. I was so tired I let her peep a few times. She does that - makes a sound and then you go in and she has turned over again on her side, thumb in mouth, asleep. But then I heard an odd gurgle and ran in there. She was seizing. She wouldn't look at me when I called. I tried a few times. Nothing. She wasn't in there. Her eyes deviated to the left. I turned her on her side and gave her the Diastat kit and called 911. I kept calling to her, telling her mama was here and that she was a brave girl and that it was all going to be ok. This was a weird seizure because she grabbed my finger and held on with her little fist. Her color was good but the gurgling did not stop. I was worried about her choking but her color stayed pink if not a bit pale.

The EMT's were there within 4 minutes. They must know me on the 911 call because I called and the woman on the line said something like what is the problem. I said, my daughter is having a seizure. She said, what's your address. I told her and she said, we're on our way. I hung up after the 15 seconds all that took and went back to Ellie. I have since put a phone right by her bed because running into my room to make that call was excruciating.

She seized for around 40 minutes. Luckily they didn't have to give her as many meds as they did last time - just a 2.5 more milligrams of Valium. Last time it was three doses of ativan and one of fosfentoyn or something like that. It's in the post I wrote about that over a year ago, under the seizures tab. For some reason I don't want to commit the gory details to long term memory.

We were home again by 5pm because after Ellie had slept off the Valium she perked up and it was good to be able to care for her at home.

I'm sad. She was so bright and had just gotten her energy back. Her depakote level was 68 which is in the therapeutic range but apparently not for Ellie. My hope that she would out grow the seizures any time soon is gone. Her dose is upped by 125 milligrams now so we will see how her energy level is after two weeks when she adjusts. If it is low I am going to talk to the neurologist about trying some other drug. God I HATE giving her all these drugs - but if I don't the consequences are just as bad. The neurologist thought her latest bout of no-sleep and sleep being off might be due to subliminal seizure like activity that had been going on.

Sigh.

I'm tired. I'm sorry. I feel like I am a bad mother. I feel like if I had gotten up with her at 5am like she had wanted versus trying to help her back to sleep maybe she would not have seized. I feel like my bad mood over Dave's finger and the stress of dealing with it all brought her seizure on. I feel bad that she has to be on a drug that deadens her brain activity at all. She's so brilliant and we got to see that more and more over the past couple of weeks. She seemed fine today if not tired. I worked hard to make sure she was hydrated and getting her meds at precisely the right time and not letting her nap too much in the day so that she can get on a regular sleep cycle. I have set my alarm for 6:30am so that even if she is up at 3:47am I will wake her early and get the sun on her face to try to reset her internal rhythms.

She was practicing her finger spelling today again. That made me happy. I always worry she will lose something after a seizure. Her latest words are Mama, Santa, Dada as well as signing the ASL numbers 1-5. She is working on the letter's B and I and R - the open hand ones are harder for her. She even went in her pony for about half the time she normally does but it's a start. She's such a little sweetie and she is growing fast. She has really taken a stretch over the last couple of months getting longer all the time. I wonder if her brain is changing too and more prone to these fire storms when she is in a growth spurt.

Not much more to say, am still feeling a bit numb.

Neurological Status

I got Ellie's Depakote level checked again today. It was 95 after 13 hours. This is called the trough. The therapeutic level is between 50-100 - meaning when the drug is doing what it is supposed to do - which is prevent seizures.

95 at the trough.

What the heck is it at the peak?

She is still really, really dragging. Really dragging.

And I had an interesting conversation with her new neurologist, whom I still am really pleased with, even more so probably after the straight up conversation he had with me this afternoon.

Basically he told me that Ellie's EEG results showed that she had "very abnormal" EEG but no electrographic seizures. Very abnormal activity in multiple areas of her brain.

Believe it or not, but he is the first neurologist out of 5 who have ever used the word "very abnormal" when it came to Ellie's EEG results. We have heard "abnormal" to "only slightly abnormal" and I am quoting descriptions. So to hear "very abnormal" was a bit of a blow. I asked him about the other results which seemed to fluctuate. He said he looked at all the EEGs they had on record (which may not include the work done out in Cedar Sinai, LA) and said he couldn't account for what other Doctors told us, but that all of them were very abnormal. He continued on saying that if we wanted to take her off seizure meds he would want us to sign a waiver that we were doing so with informed consent and against doctor's recommendations because she would be at such high risk.

See, straight up.

I am not really surprised, just struggling with the hope I had that one day she might get off those damn meds that make her so tired. And I will hold hope still, like Dave does that some day they will find a way to help the damaged areas of her brain to recover.

But for now we have to find the right tempo between seizures and fatigue. The plan moving forward is to see if she is still dragging in one more week. If she is we will lower the dose slightly.

I am also lobbying (and it is like lobbying because I have made 3 calls already to this effect) to get neuro doc to chat with GI doc who says the Cisipride effects the levels of her Depakote...easier said than done.

Some days I hate all of this. Ellie is a bright shining light. Curious all the time and never misses a thing. She always has an opinion and wants to play and move, move, move. So to see her wanting to sleep all the time, have continuous dark circles under her eyes and be half hearted about play just plain sucks and sucks some more.

But as always with Ellie the gentlest approach works the best because like I said before, she's sensitive.

So we wait and see and hope that at the right level she can be her active, inquisitive self while keeping the electrical storms away.

Dream Child

I definitely have a creationist view of the world, meaning that it is as you create it. And yes this also sits in contradiction with my also deeply held belief that we sign up for some things just to get the experience as soul. As within myself, such is the world, filled with startling contradictions coexisting comfortably side by side throughout eternity.

All of this ruminating has been sparked by a recent visit to our new neurologist. I hadn't intended on finding a new neurologist for Ellie, because we have one, had one, kind of. I was not so happy with him. But as life would have it - way, way back here when we lost our first Boston neurologist, Dr. Janet Soul, whom we loved, I had made an appointment with Dr. Michael Rivkin. Because it took a year to get the appointment, I double downed and also met with the other neurologist Dr. Soul had recommended but whom turned out to be so nonplussed by us and so flip... ugh don't get me started, you can read about the dog and pony show dada had to put on to get him to even listen here, though that meeting resulted in no conclusions or actions. After all this time, however, I completely forgot about the other appointment.

Last week we got a reminder call to meet with Dr. Rivkin. Our long ago made appointment was for this Tuesday at 11am. I almost didn't go because this week has been a rough and tumble stressor of a week. Here's why - I'll just list the crap we all had to contend with:

• Ellie's IEP was Wednesday
• Ellie's 3 Year Re-eval was also Wednesday
• Ellie had to get Botox in her lower legs Thursday morning and of course that takes all day (more on that in another post)
• Ellie and I had to meet with our case worker from Mass Health for reevaluation for the nursing hours we get (nursing hours which save us from complete insanity as well as being quite handy when Ellie is sick or having surgery's or procedures).
• Our water heater sprang a leak...

Now on the other side of it, nursing hours intact, the best IEP ever, and Ellie knocking the ball off the charts in her evaluation testing (yes am pretty proud of her) I have time to take a breath and ponder it all (except the water heater - I can't ponder that at all - I will implode if I do - I have handed that off to Dave, hubby of the year).

You can see why I almost cancelled the meeting. But I took Ellie anyway, pulled her out of classes and got us down to Boston Children's. When I met Dr. Rivkin it was definitely one of those watershed moments when I breathed a great sigh of relief that I hadn't blown off the appointment. Like one walking on the edge of a cliff and catching themselves from falling over the edge at the last moment. I can only describe the events so you know why this was a very different meeting for us than our last two visits to the other neurologist.

Ellie and I are in the waiting room having only been 4 minutes late which is saying something and I hear her name called. (This was after they weighed her and checked her height. By the way she has grown 4 inches over the last year and gained 10 pounds! Go Ellie!).

I call back, "Yep, we're here, just a sec!" because I have to extract Ellie from my lap, which is no easy thing to get her and all her toys back into her stroller. As I am putting her in I hear someone nearby say, "Hi, I'm Dr. Rivkin!" I get Ellie in and take his outstretched hand. He's smiling a big smile like we have made his day by coming to our appointment. I shake his hand and he has a good strong, but not too strong as to bruise your hand, shake. The kind of handshake that always means sincerity to me. He is wearing a funky bow tie which is also a good sign of a nonconformist free thinker type. Better still he bends right down to get at Ellie's eye level, and says, "Hello there! Nice to meet you!" And the big smile again. Then he offers to carry Ellie's nap sac which I let him do.

We go in his office and he very thoroughly, taking notes, gets our history, asks a ton of questions that range from birth to my history to Ellie's current abilities and medical status. He listens to me when I tell him she can read , understand sign language, and understand all of what we say if she can hear us. He listens and believes me. There is no eye rolling just direct gaze and appropriate questions. He has opinions too because he has read her records (before we turned up).

He was really clear that he did not think we should take Ellie off her seizure meds. He had read her past EEG reports and told us that her EEG is really abnormal, not just abnormal for someone with type of brain injury she has, but really abnormal. So we stay on the meds a bit longer as much as I hate that. Her last seizure lasted an hour and seemed like it would never stop and is something we can't let happen again as you can see here.

He asked me why I was there, since he didn't think Ellie needed two neurologists. I told him that she needed one good one and we were still keeping our options open since leaving Dr. Soul. He said, "Fair enough."

The great thing was that I didn't need to bring someone with me who has a, you know, the appendage that makes a man a man. He listened to me without any pretense or bias. When I told him that within two weeks of starting the seizure meds Ellie quit eating full stop, he said, "Well, that is very concerning." YES! IT IS! Finally someone with a MD in their title who is taking me seriously!!!

He was also proactive. He noted that Ellie hadn't had an EEG in 2 years and that he wanted her to have one straight away so we can revisit the med question and see if we can't get her eating again. He inquired if she had a trunk orthosis and hippo therapy. He gave me an inside line to call once the EEG results are in so we can discuss meds. He wants to see her again in 6 months (not a year like the other guy). He even introduced us to his team so we would know who to call for what. 3/4 way through the appointment I had told him we definitely wanted to switch to him. I didn't tell him all the reasons why but they are below. I wanted him as Ellie's neurologist because he is:

Proactive,
Thorough,
Open minded,
Detail oriented,
Big picture sensitive,
Good listener,
Straight talker,
Positive attitude,
Interested,
Engaged,
Relationship builder,
Down to earth, (versus the, I think I am a god realm and know everything, attitude many doctors seem to carefully cultivate)
Knows his stuff medically speaking

These are the things that differentiate between a good doctor and a great one.
He was gracious and said the other guy was really smart. And I said, "You are all really smart but we need someone who is more than smart." I think he was kind of chuffed by that but trying not to show it. But he agreed to be Ellie's neurologist.

Toward the end of our visit, I asked him, "Considering all that Ellie can do, the reading, her language acquisition, etc. have you seen other kids with similar issues like her?" I was really hoping he would say, yes, many of the kids with traumatic brain injury and PVL go on to do quite well, or something like that. But instead he said, "No, she is definitely and outlier."

An outlier is a statistical term for a data point that is at either end of a bell curve or when looking at a scatter plot a distant dot far from the other data points. Ellie is such an outlier.

I am glad that she is doing so well considering that. I also felt sad because that means she is rare, which means there is not allot of data on what to expect. There are not a great many books to take pointers from on what to do to help her (though the Doman stuff and Linda Scotson have been true role models). There is no beaten path to go down to help her heal.

Then again, with my creationist view of the world, I wonder if Dave and I didn't dream her up. And I mean that in this sense, from the second she was conceived we loved her and were thrilled by her presence in our life. This great excitement and love was not dampened at all by what happened, no just the opposite. It was strengthened and grew fierce. It informed all we do and did from day one. It fueled and solidified our hope, our partnership to bring the world to Ellie, to see her beyond her ravaged brain, to find her in the catacombs of all that was destroyed and pull her to us. I really feel sometimes that we did pull her out of it all. We have been constant in our attempts to work with her and keep her brain active. We are still pulling her out into the world though we have allot more help in that she goes to a school that meets our standards for miracle making.

In all of this I think Ellie is our dream child. I think there is an argument to ere on the side of hope and intelligence and love. We never held back from her or this challenge, instead we dove in head first without looking back or fearing the depths. I have but to think that in that sort of environment Ellie could do no other than build her neurological pathways that were not there yet (because she was born before the 28 week gestational marker)and others that were destroyed by the anoxic event and forge new ways of neurological function so that she could come out and play with us. She is OUR outlier, our dream child and we will just go on bushwhacking through the wilderness that is our life.

Details of the Aftermath

Since Ellie did not have meningitis the seizure was most likely caused by an ear infection we did not know she had. She did spike a fever the moment we entered the hospital and her white blood cells were very slightly eleveated. What this also means is that her pain tolerance is so high, a really bad ear infection did not reduce her to tears but only made her a bit grumpy. The implication for me is that I need to print out picture symbols of body parts and work hard with her on understanding pain and get her to start identifying where, exactly, it hurts. Ellie knows all her body parts but she often has head pain so if the pain is in her head, ears included, she just puts her hand on her forehead. She is usually good for only one round of where's your aowie before she gets bored and wants to "play" something else so I need to get streamlined about my process.

So why the much elevated protein levels in her cerebral spinal fluid? This is the scary answer from her Neurologist - she may have constant irritation from all of her shunts - three in all in her brain. Implications - no one knows. Effect on her - pain. Effect on me - scared shitless.

This is, like some of the CP moms have said, one case of poor baby. Ellie has been really shaky all day. It must be not only fatigue because she has been sleeping allot between meals but from the narcotics leaving her system. I checked her eyes tonight and they were dilating fine at least.

The upshot for me is a massive migraine and chest pains because I can't sleep worrying that she will be in her room, alone seizing. I might just start sleeping in there on her therapy table or beside her in the bed. It's better than crutching in there at ever single slight noise which was about 10 times last night - hence my migraine.

I wish I had more answers about how to help heal and soothe her irritated brain. I am her mother. It's my job to keep her pain free and happy. So what can I do to soothe the pain from thin bits of plastic in her brain? What a bizzarro, twilight zone type of question that is for any mom to have to ask themselves, is it not? Bizarre but truly asked.

I am seriously wondering about things like acupressure, reiki, cranial sacral, hyperbaric - which we know has helped lots of kids reduce seizures, and any other alternative therapy that might help Ellie. Because medicine doesn't have any help for this except to up her seizure medication dose, which I gladly did after this last one, or give her a new shunt, which she doesn't at the moment need, thank all the angels in heaven.

Any thoughts on alternative treatments that might help Ellie's irritated brain heal will be totally appreciated (though I have to say I don't think the whole stem cell thing is safe enough yet to try). Also, any thoughts on how she can safely cleanse the toxins left over by the narcotics they had to give her for this last seizure which included one dose of valium, and three doses of Adivan (not sure how to spell that) and a huge does of Fossfentinal? She is shaking and her head control is worse than it was. She is playing and responding to things as she did before. She is still reading and herself congnitively just very shaky and a bit pale physically.

Can I just hold her forever and never let go - would that work - would that be enough?

Rainy days are in hospital days for Ellie-luv

Why is it that the rain seems to always accompany me and my family at the darkest moments? Sometimes I think it is God's way of assuring us that we don't shed tears alone. Sometimes I think it might be spirits way of making sure the smiling sun doesn't mock us when we are most afraid. Maybe the rain symbolizes the cleansing effect that the crucible has on the soul. Either way, it was raining today and today has been tough.

Last night Ellie was up from 3 to 4:30am. Dave was with her. First trying to calm her then he fed her and played with her. I heard the whole thing but was trying to sleep because I knew that he would be tired in the morning and I thought at least one of us should try for some coherence. I couldn't sleep though until I heard them both laughing and "reading the box" which is another story.

But my gut kept telling me to go in. It was a tug of war gut versus brain.

At 6:42am, I awoke to Dave's voice on the monitor saying, "Bebe, come in here somethings wrong with Ellie."

I quickly crutch in there and there she is in full on seizure very much like the last one. She is laying on her back, arms straight down her sides and legs straight out. Her eyes are deviating painfully to the right this time and just bobbing there. I turn her on her side and reach for the Diastat kit on her bedside table and give it to her. It's 6:46am at this point. Dave went to call 911 while I gave her the Diastat. He is back pulling out the oxygen and we get the cannula on her. The medics, cops and fire crew are all at our house on our tiny street by 7:51am. I recognize them. They all know about us as they have been here 3 times in the last 6 months.

The seizure is still going on. For the first time the Diastat seems to have no effect. I am calling to Ellie to come back. Telling her "mama's here, sweet pea." "come on back to mama".
The medic decides to give her some Adivan. He does and nothing changes. She is still seizing.

They get her into the ambulance as I quickly change into street clothes. We head toward the nearest hospital. They give her two more doses of Adivan in the ambulance and nothing seems to change. We get to the hospital and she is in a quiet emergency room as it is only 7:30am at this point though time seems like it is in slow motion. Why is she still seizing?

Her eye stops deviating and come to the middle a few minutes after we get there. But Ellie is neither sleeping nor awake. Just lying there. They decide the seizure has stopped but I know this is not yet the postictal stage.

So they decide to give her a loading dose of Fossfentinal in order to allow her to make it to Boston Children's hospital without seizing again. They do and she is knocked out of it. We get in another ambulance and the Children's transport team takes us in. The new medic looks in Ellie's eyes and they are not dilating. In fact the right one gets larger than it already is - and it's huge. The left stays huge with no change when they shine a light in it to check (which by the way is a great thing to do if you think your kid is seizing - if they are their eyes won't dilate properly to light). This is bad.

We get to Children's and they wheel Ellie straight into the CT scanner. Things are moving in that fast slow motion way where seconds feel like minutes because so much is packed into each moment. Finally we are in a room in the Boston Children's ER and the doctors start to come. They did bloods at the other hospital and her Depakote dose is in the middle of the therapeutic range. Her white blood cell count is not elevated. But she now has a fever. She does have an ear infection in her left ear.

They decide to do a lumbar puncture to make sure her cerebral spinal fluid is OK. We agree as her eyes are still not dilating. The CT results have come back and her ventricles are looking smaller than before so we will be able to avoid shunt revision brain surgery that would be needed if she had increased inter cranial pressure. Ellie is being a very brave girl.

They use Emla cream to numb the skin and then put in a shot of Lidocane. That shot really hurts Ellie and I silently question it's effectiveness. There is a guy named Wally holding Ellie on her side in the fetal position to make sure the vertebrae between which the doctor is going to thread the needle stays open. Ellie wiggles though, very strongly then goes limp and keeps doing this. Wally has to be very strong. The Lidocane is in and she proceeds with the lumbar puncture, I am holding my breath and Ellie's hand. Dave is there telling Ellie she is a brave girl and that she is doing well.

This procedure takes 10 minutes with the needle in Ellie's spine while her CSF drips maddeningly slow into 4 different vials, 4 cc's in all. Then it's over, band aid on her back and Ellie checks out and thumb in mouth goes straight to sleep. The results come back and hour later and one doctor tells us that the white blood cell count is low but the protein levels are somewhat elevated. Whoever taught this doc comes from the "cushion the blow" school of thought because when we finally talk to the Neurologist he tells us her protein level in her CSF is 268. Normal protein in the CSF is 40. So the words "slightly elevated" don't come to mind. "Freaking through the damn roof" would have probably been a more accurate description. They decide that though her white blood cell count does not confirm it, they want to treat her as if she has meningitis - viral or bacterial. The scary part here is that if she does have meningitis she will have to have all her shunts removed and replaced. Removing some of her shunts could easily cause her more brain damage.

They also decide to up her seizure meds and give her a loading dose which knocks her out even more. Then they give her two huge doses of antibiotics. I feel like my little family is in some sort of pharmaceutical hell. But what can we say? She does have a fever, she had a seizure that lasted almost one hour and her CSF protein levels are through the roof.

It's 10:13pm as I write this. I just got home from the hospital. Dave will take this shift tonight. I will take tomorrow night because he has a training to attend on Monday morning. I am happy to say that for a couple of hours before I left Ellie finally started to pull out of it. She wanted her videos, and for me to sing the 5 little duckling song, and she started chewing her thumb and making her hungry sound. When we were finally allowed to feed her she kept all her cereal down then went promptly to sleep again.

Please keep her in your heart tonight and wish her a speedy recovery. She needs some angels tonight to guide her through this storm.

I will keep you posted.

Breakthrough Seizures Do Happen...

...and they suck.

Tiffany and I are sitting down to potentially the last lunch we will have together for a long time as she is moving away. I hear a guttural sound on the monitor and I know something is wrong. It was a tiny sound that sent me running up to Ellie's room where she is having her nap.

She has thrown up on the bed. She is all wet. Tiffany comes up to see Ellie. She is one of Ellie's best friends as well as mine. Tiffany is an RN.

I get Ellie out of her wet shirt. She is very floppy. Not holding her head up at all. I think it is because she is so tired from being up between 2 and 6 am last night. I get her into a clean shirt, remove the soiled pillow, replace it with a new one and put Ellie down on it. She is silent.

For one split second she recognizes Tiffany who is one of her favorite people. A flicker of recognition passes on her face and she smiles a small smile. Then she looks at me. Her eyes dart to the left. The smile freezes. I say, "Ellie, say hello to your Tiffy!" She is looking at me. It looks like that should hurt her eyes to be that far to the left eventhough I am sitting to her left.

I pick her up and put her on my left knee because then she will have to look Right to see me. Her eyes don't move. Tiffany says, "She's having a seizure, put her on her side." I do and then we get the emergency diastate and give her a dose. She vomits. She is still seizing, floppy, eyes twitching and still deviated to the left. Then her breathing is choked sounding. I call 911 yelling back to Tiffany, "You know CPR, Right?!"

Tiffany rubs Ellie's back, listens to her heartbeat, counts her pulse and times her seizure. It's great being friends with a nurse - especially at times like this. I am trying not to cry. The tears are there in my eyes, hot and stinging.

The ambulance crew and fire team come just as the seizure stops and Ellie puts her thumb in her mouth and wants to go to sleep. A good sign. Post ictal - the brain reoranizing after the storm.

There's and ambulance and fire truck on our tiny street. They give her oxygen though her color is good. They take down the details. They pack us onto the ambulance and rush us to children's. Kerry the EMT gets the IV in - no small feat on Ellie's tattered preemie veins. Ellie is still out of it and satting at 85. More oxygen and quick conversation about giving her more diastat. Then her sats rise. She wasn't dusky but very ice white with bright red cheeks. I didn't know that satting at 85 could look like that.

The driver uses the siren on and off because I tell him about her auditory defensiveness. The closer we get to the hospital the more Ellie is coming out of it. I am there with her. They let me sit by her. I am telling her she is a brave girl and that she will get to rest soon. We get to Children's Hospital, Tiffany is there, dada is there. They do a scan. Her ventricles are fine - no surgery today for anxious surgical interns. Her depakane level is 72. 3 points less than it was a month ago - still in the therapeutic range.

7 hours and after telling 10 people our whole bloody history to current status we are home on a new med regime and Ellie wants her videos, food and to play with her toys. Mama wants to have a good long cry.

Different Points of View

Phone rings

Me: Hello

Caller: It’s Neuro Nurse from Neuro Doc’s office. I have the results of Ellie’s Depakane level. It’s at 75 which Neuro Doc is satisfied with as long as she is not having any symptoms.

Me: She is not having seizures but she refuses to eat.

NN: When did she stop eating?

Me: (thinking: ok this is the 3rd time I have reiterated these same details) She stopped eating shortly after she started the Depakane last May.

NN: Depakane is given to people who have weight gain issues.

Me: Yes, I know. Initially for the first two weeks Ellie at a little more than usual but after that then she refused to eat full stop. Are there any other seizure meds we can try or is there something natural I can give her to increase her appetite? I think the Depakane is taking away her appetite.

NN: Doesn’t she have a g-tube?

Me: Yes, but she used to eat all her pureed foods. She would eat 1.5 cups in 10 to 15 minutes. She even used to make a little mmm, mmm sound as she ate. She liked her food.

NN: (long silent pause) Why was the g-tube placed?

Me: When she was in the NICU because they wanted to send her home. I regret that decision because it masked neurological pressure symptoms later on and greatly increased her reflux.

NN: If she is keeping the food down and is symptom free we wouldn’t want to change the medication.

Me: She is not symptom free. She’s stopped eating. It’s a quality of life issue. She CAN eat but won’t at this point and all of that coincided with her taking Depakane. Her dysphasia is so much better at this point. She had a swallow study and was cleared from thin liquids. We don’t always want her to have a g-tube because I know she can eat. I know she used to enjoy eating.

NN: Well, sometimes Depakane can affect the palate. I will run this by Neuro Doc.

Me: Thanks.

Home

Home at last

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

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

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

Many beautiful things all about Ellie – an update

Ever since I found Clare’s blog about thinking of three beautiful things, I have been inspired to do that each day. Clare is way better at actually sharing those things with the world and hence the popularity of her website. But since so many things have built up from this daily practice I wanted to give all the people who love Ellie an update – a bit over due I know.

Seizure Update
She is tired because we upped her dose of Depakane but still very active. It usually takes a week or more for her body to address. We will get her levels tested next Wednesday and if it’s high call her doctor and discuss lowering the dose. We met with Ellie’s neurologist last Wednesday and she was really pleased to see Ellie doing so well. I asked her about getting oxygen in the home in case Ellie had another seizure and she said that would only be necessary if Ellie had a prolonged seizure. I asked what “prolonged” meant and she said one hour with the child turning blue. Honestly, I think I would die first if that ever happened. Ellie certainly was pale but not blue and her 10 minute seizure was the most excruciating 10 minutes I have experienced since her birth. Of course the nagging question in the back of my mind regarding all that is - so you have to wait until someone, my child, is actually having an anoxic event to give oxygen? Something. Does. Not. Compute. Just the same, Ellie has been seizure free since our incident on New Year’s Eve and that is a beautiful thing.

Gross Motor Skills
Ellie is rolling all the time now to get things. She was doing this before the seizures started to mess with her last May and then stopped. But now she is a powerhouse again and we are having to move stuff and take the child proofing to a new level. She is also spending some time in her stander which you can see here. She doesn’t complain though the thing is hard to get her in to and I worry every minute she is in it what it is doing to her spine. I worry so much about that, that I don’t put her in it. Dave does once in awhile and I think that is enough. I have been doing as much tummy time as possible to compensate for the stress on her spine. The great thing is that she is fighting me less on the tummy time – which I have to say she readily does for everyone else. But when it comes to me it’s Mama’s lap only please. I guess I should enjoy that while it lasts ;-)

The Scotson Technique (TST) Therapy: reality check
I thought when we got back from England that I would be doing 3 hours of therapy with Ellie per day. But after really understanding the exercises it will work out to 2 hours per day. This is a relief, especially since she will be starting school. Currently we are on our third week of doing them as we took time off because she had the pneumonia. I am doing them with her one hour a day and on Monday will be ramping up to two hours per day. I wanted to start slow and at first Ellie was a bit pale. I am breaking them up into half hour segments. I am finding innovative ways to be able to do them without needing someone else to spot my wiggle girl who does not prefer to stay still before 8pm. One way is to put a soft pillow over my legs and let her lay over the pillow on her tummy. This way she can’t fall over and I can do the exercises on her. That said, 6 mornings per week, Dave and I get up with her and do exercises for 30 minutes. In truth, I really love our mornings. Ellie is happy because she has Mama’s and Dada’s full attention and we all start our day together connected and focused on helping Ellie’s brain heal. Throw in a little Pete’s Arabian Mocha Java and I can even temporarily negate debt I just paid to the GSTTN – ha!

Nutrition and Diet
We met with Ellie’s GI doc and he was thrilled because she gained 11 kilos in 3 months time. I have detailed her diet and my approach to nutrition here and here and here and here. I have been experimenting with adding a little more variety into her diet. I tried making dark meat turkey soup and could smell the acid on Ellie’s breath right away after a couple of days of this. I tried her on avocado and again she was acidic. When I say acidic, I mean that her voice gets hoarse and I can actually smell acid on her breath – like when you have indigestion. I will try to give her a little avocado from time to time but only in teaspoon portion sizes. There are so many GREAT nutrients in avocado – but it is an incredibly rich food as well, which is hard on Ellie’s system.

The whey protein we bought while at Advance is still proving to be easy for her to digest and I wonder if it is what is behind the increased rolling and energy. I also am giving her two cooked egg yolks 2-3 times per week and that does not seem to be causing her any trouble either. I am too chicken at the moment to try the whites…

I tried her on banana allured by it’s naturally high potassium and other nutrients. Ellie communicated to me before I gave it to her that she did not want it – even in her g-tube. See how she is developing?! I gave it to her anyway, being the horrible, nasty mother I am, and she did not do well digesting it. I really believe the body has an innate intelligence about what is good for it. I know a few people who do muscle testing to tap into this innate intelligence. But how do you do that on a child with hypotonia? And, as any mother knows, it’s hard to get a straight answer out of a 4 year old, especially my Ellie who tries daily to convince me her nanny lives at the North Pole. Sigh. But in this case, it was her body’s innate intelligence telling her, no banana please – too rich. I should have listened.

In my unending quest to get live enzymes into her (she whose sensory issues make her gag on hard foods and who is currently refusing all food by mouth) I am going to try organic grapes. Tomorrow I am going to blend up 3-4 in water and give her those (And yes, I will probably peel them – go-ahead roll your eyes. Mine are rolling as I write this.) She continues to get the fresh carrot; beat; ginger juice cut with a lot of water and that is going down fine- plenty of great enzymes there but a bit of a PITA (pain in the ass) to deal with the juicer every day. (If you juicing fresh vegetables you need to drink the juice right away as enzymes die with each minute that ticks by after the juicing process. This is why I don’t juice up a bunch of veggies and pop them in the fridge and hope for the same benefits for those of you who might have thought of this as a solution.)

Interestingly, the Nanny Goat formula we have been giving her has started to make her sneeze and get a little runny nose every time I give it to her. I think this is a sign of lactose intolerance but I am wondering why it just suddenly came on. Solving this mystery will involve learning something new about the body, which is always good. If anyone has any insights about this – do share them and thanks in advance.

In sum, Ellie’s blood results came back (CBC) showing that she is not vitamin deficient and she is gaining weight and growing at a good pace. I am happy to see her energy levels rising slowly despite the increased seizure med.

Eating by Mouth
She is still refusing to eat for me full stop, though she can and will just a little for her beloved Bonnie. The beautiful thing is that Dr. Soul (how cool a name is that?) when I told her this noted that Ellie was asserting her independence. This was a great realization for me and is exactly what Ellie should be doing at this age. I basically stopped sizing Ellie up against where child development specialists say she “should be” because it just doesn’t apply and got to be a bit painful. I find it more useful to understand her for where she is at and work from there only comparing to where she was. But still, it’s nice every now and then when I discover she is on target or even ahead in some small way. I’m not sure a parent of a typically developing child can truly understand how such a small thing as this revelation delivered to me via Dr. Soul is such a ray of hope and will keep me going for a long while. But there it is, Ellie asserting her independence. Hurray!

School Update: best for last
We heard back from the school (I mentioned here) and that I wrote an essay for and spent hours on the phone with and sent stacks of paperwork to and finally visited…. Drum roll please…..

They ACCEPTED her! For those of you who actually heard screaming 2 Fridays ago round 6ish, yes, that was me after I received this incredible news. We met with them the Tuesday before and it was obvious to us that they totally get it. The teachers and therapists we met were clearly there because they are passionate about the kids. They communicated with Ellie in such a way that gave Ellie time to process and respond – without us telling them what she needed. Ellie even reached out to touch one of the other kids. The school was clean and bright and calm. We were there for 3 hours and left with no concern other than hoping they would accept her. I am measuring my high hopes with a dose of wait and see. She is to start in March and a lot of details have to be worked out with our school district, which is why I was hesitant to report his great news. But now that a little time has passed and all is still a go – time to share our good news. It’s always excellent to have something good happen for someone you love especially when she has been through so much. In fact, it’s a beautiful thing.

What a long strange trip it has been

We arrived back from England and Advance on Thursday – exhausted. Our trip had two key purposes. 1 – Go to Advance for more therapy for Ellie. 2- Attend Dave’s mother’s wedding in Dublin where I was also the photographer. (Obviously his mom and step dad are a bit nuts but the pics actually turned out well). Ellie, is normally a great traveler. On this trip she was her usual self - happy and excited to get Mama and Dada in close proximity for hours at a time. She is even able to catch some z’s on planes and in her stroller which reclines back. This is definitely something she inherited from her father. But for the first time, we flew to Ireland via Heathrow to save money and use up the last of my road warrior air miles on American Airlines. Usually we fly straight to Dublin. This leg to Heathrow made our trip 6 hours longer than it normally is and the high winds caused even more delays. By the time we were on the flight from England to Dublin we were all exhausted – especially Ellie. We arrived at Dave’s mom’s house, gave Ellie a meal and then Ellie and Dave lay down for a nap. I joined them about 30 minutes into it after a bit of organizing. As I lay down beside Ellie, she turned to me and tried to sit up. She was pale gray and her right arm was pumping, hand fisted and hitting her head. She was trying to get to me. She was having the worst seizure she has had since her time in the NICU.

After a couple of minutes of this, I got the emergency seizure kit (Diastat) and gave it to her. The kit says you are supposed to wait for 5 minutes but this was a big seizure for Ellie so I did not wait. For another 7 minutes she was seizing. Dave’s mom called the ambulance. Ellie finally stopped seizing after a total of 10 minutes. I had her on her side as the folks on the emergency medical line instructed. I was talking to her and crying at the same time. She was reaching out and grabbing my hand. And gently reaching for her Nanny’s necklace. It was as if to reassure us that she was going to be ok. The ambulance arrived very quickly and they gave her oxygen and rushed her and us to the hospital. While the ER team was a little disorganized and had trouble getting an IV in, once we were on the floor in the ward the doctor there was excellent. She got all the right tests ordered when the ER folks said they could not be done on New Years eve. Ellie’s aunt later told us that she heard that same doctor telling off the technicians to kick them into high gear to get things done.

Ellie and I spent New Year’s Eve in the hospital. Ellie was monitored and slept on and off. Dave’s brother and sister-in-law insisted on staying the night in the room with us. They had us in a closed off room with two beds and a cot. It was different and nice to have help when Ellie is in the hospital. We haven’t had that since we moved to the East coast. Usually we are there by ourselves the entire time and taking shifts to manage work.

The Irish doctors conferred with our Boston neuro team and they both agreed. The scans came out fine.

Seizures are scary things. When Ellie was first diagnosed with them in May her neurologist stressed to us the importance of putting her on medication for them. In May her seizures were way less severe and we were concerned that the meds would keep her in a zombie like state. We were under the impression that the brain was only effected adversely from a seizure if there was a lack of oxygen. Our neurologist disabused us of this notion stating that in a developing child short term memory is erased randomly during a seizure. So seizures effect and delay the child’s development. I had noticed that Ellie would “forget” some things I thought she knew at this time and I think that was from the seizures.

The reason the doctors surmised that Ellie had this seizure was that her med dose had just been lowered by our Boston doctors (because Ellie had been symptom free since May). We wanted her on the lowest dose possible because she is only 4 and her liver is being asked to process a lot of meds already due to her reflux. We tried a drop of her seizure med, Depakote, and the stuff burns the tongue. I worry what it does to her insides. This lower dose combined with the stress of being tired may have just been too much for her.

Also, for the record, all the decisions we make for Ellie are never black and white. Someone recently said to me that “clearly you have a lot of guilt” over choices we have had to make for Ellie. This is not quite right. We are always choosing between two evils and hoping we picked the lesser one. There are always shades of gray especially when dealing with the brain. So it’s not guilt, but the difficulty of having to live in the gray area and always hoping you did the right thing, which does not always bear out right away but over time. Don’t get me wrong, I know we have done very well by Ellie and worked very hard and used all of our god given gifts and energy to do so. For me, I can’t really go to the place where I might feel proud or comfortable with all of this because I worry that I will become less vigilant. Maybe that’s posttraumatic stress talking. But I do not want to ever relax my vigilance over my daughter and her needs. I will probably never think, ok I have done enough. No, that is not in the cards for me this lifetime. I will be working to help Ellie until I die and that is that and that is ok. It’s a good problem to have because I have become a better person in doing so.

The scariest thing during the seizure was wondering when it would stop and thinking Ellie might die. And then when it did stop wondering if it took some of Ellie with it. We would not know this for a couple of days because she had to readjust to her new med dose and rest. Now that we are back she has remembered all the games we played before the trip and her language has come on even more. She is starting to make word approximations and this is very exciting stuff.

Just the same, seizures suck. I felt really bad for Ellie and what it must have been like for her which I can’t even imagine never having had a seizure. And I did feel guilt about dragging her tiny self across the Atlantic. Though she has done this twice a year for 2 years and never had an issue I still feel bad that she had a hard time of it. We are moving forward on a more formalized schedule of testing her Depakote levels. The entire trip after that we let her rest a lot. Usually I wake her up in the morning each day a little earlier to help her adjust to the time change. I didn’t do that this time so we spent the entire trip being up with her from about midnight to 4am. Ellie had multiple naps during the day though we did not.

We made the decision to continue on to England for the therapy and Ellie was fine for the rest of the trip.

The therapy session at Advance went very well. The picture you see is Ellie in the Hyperbaric Oxygen chamber with Dave. The Hyperbaric O2 Therapy is used to give her diaphragm a work out to adjust to the new therapy regimen. We were given double the amount of exercises we had before which is going to require twice the commitment we had. We are on for it. It’s encouraging to look at Ellie’s recent photos from this session and see all the progress she has made. Her head control is so much better. She is more solid in general and can sit up straighter and is so much stronger. Her coloring too has noticeably improved where she used to be so pale. Her reflux has also improved greatly which is a wonderful thing.

Regarding nutrition. The turkey I mentioned trying was only making Ellie more acidic and reflux more as well. Linda has discovered whey protein that is not sweetened. We took some home with us and it’s excellent so far. I am trying it out myself as well. It is mixed with water and is very mild. You can find it at myprotein.co.uk. We are starting slowly and so far so good. Ellie usually shows adverse effects to foods either right away or over a few days so I will keep you posted. We are also going to add some live enzymes to her diet by juicing vegetables and grapes. Grapes are also very good for increasing motility. We tried Ellie on both before but she was too sick to handle them a year ago. So I am hoping she will be able to tolerate them now.

We are back and moving on from the trip and the Ashley mailstorm. To borrow a phrase from Jacqui and apply it to trying to discuss the whole thing somewhat rationally – you are damned if you do and damned if you don’t. I am tired too. Uncle!