Happy New Year!

Ellie just ate 60 cc's of Earth's Best Baby Carrots

BY MOUTH!!!!!!

OK! This is the BEST gift EVER!!! I had to tell you all because you're the only ones who will really understand how significant that is. Thanks especially to Erin and Lauren at school who made eating fun, hip and cool again for Ellie by patiently and persistently getting her beyond a very serious oral aversion of the last 2 years. I am also thankful to the PCA who had to cancel tonight such that Dave and I ate our New Year's Eve meal with Ellie while she was having a foot soak, watching Signing Time and getting her carrots. She's a social eater and wanted to eat with Dada by mouth and take bites when he did at first, then she just started opening her mouth and waiting for me to feed her like she had been eating all along and had never taken a three year hiatus!!!

Brought tears to my eyes to see her eating and swallowing and intermittently using the spoon herself. Not one cough or gag and not much on her clothes. Just beautiful chewing, lip pursing and swallowing! Where did this precise and head controlled princess of eaters come from? Ahhhh the things that make life grand.

Happy New Year Everyone! I really hope that this is the shape of things to come in 2010!!!

Abdominal Migraines and Santa

It might be that the Periactin is working. Maybe. Ellie has had a slightly elevated temp on and off for the last three days. It has ranged from 99.4 to 100.6. She has not vomited. She was given motrin and she is not totally herself in that she has been tired and has dark circles under her eyes and is very pale. I need to get a script for an oximeter because I want to know better how much pain she is in. My rational is that if her heart rate is elevated then she probably has some pain. Also, she is pale. One time when she had a seizure she was pale but flushed at the same time and the O2 saturation in her blood as taken by the EMTs was 78. So, I kinda want to know how she is doing when this is going on. It's hard though. Instead of a week between not it's a couple of days. If this becomes everyday that is an untenable situation.

Picture description: Ellie at her school's jubilee. She signed "I love you" to Santa.

Update

Ellie's migraine lasted for about 8-10 hours. She didn't vomit this time and I kept giving her all her food so that on top of a sore head, she was not also hungry or dehydrated. It's hard to say because she, sadly, has a very high pain tolerance. I gave her Tylenol and Motrin and she went to sleep that evening and slept through (that was Monday). Tuesday we were getting buckets of snow so she stayed home, which was good so I could watch her. Though she looked tired she played all day and was in good spirits. She had a low grade temp on Tuesday morning as well which goes along with what we are learning about abdominal migraines. I think she was in a little pain still on Tuesday. However, it is clear to me now that migraines mess with, you guessed it, her sleep cycles. She fell asleep on Tuesday around 9pm. She woke up a couple of times in the night and was still tired the next day. On Wednesday she was up until 9pm and then again at midnight and was not easily persuaded back to sleep and tossed and turned. At 4am on Thursday she was UP. And I mean wide awake and wanting to play and sign and any suggestion of going back to sleep was met with a howl. She also told me she was hungry and the aowie in her head was gone.

I brought her down stairs and gave her breakfast and we played until it was time to got to school. I was expecting a call around noon saying she was crashing and to come and get her. No such call. I picked her up at 3pm and her teachers reported she was in good form, totally engaged all day and not wanting to nap at all. She finally got sleepy around 8:30pm Thursday night and slept through.

Migraines, yet another thing to learn about.

The Why question is still on the table. Root causes the doctors are saying are anything from cyclical vomiting, abdominal migraines, to deep brain seizures.

What they are not considering, at least verbally to us, is the withdrawal issue. Withdrawal from Protonix and Depakote, which is still not off the table in my mind. They in fact are saying if Ellie's symptoms are bad to put her back on the Depakote, which for many reasons discussed in prior posts I don't want to do.

If this is hereditary migraines, thanks to my side, then we have to treat them with the Periactin and pain killers. If this is withdrawal, hopefully they will end as soon as her liver has a chance to process all the toxins.

Neurology is difficult because there is so much they don't know about the brain. I am glad that this time Ellie's symptoms were less severe, no vomiting or nausea that I could tell, and a shorter time of head pain (either that or she is getting used to it - which really upsets me).

The question is, what is acceptable in terms of her symptoms? And this time instead of being a week in between symptoms, there was only a few days. What if she starts having these episodes every few days? What if, what if, what if? I have more what ifs and whys than I have answers. I wonder if it the answer is staring me in the face and I just can't see it. I want to see it, I want to do what is right for Ellie. I don't want her to be in pain. What am I missing?

**picture description: Ellie laughing in her tent this summer in Carmel-by-the-Sea

Migraines Suck.

After 2 great days at school, Ellie is down for the count again. She was having her dinner and very suddenly went into pain. She was rubbing the back of her head and in fact the whole right side of her head and started to cry. Then she wanted just to bury her face in Marla's shoulder (Marla is a PCA extrodinaire). Then Ellie spiked a fever of 101.1. After a dose of Tylenol the fever went down to 99.7 but she was still in pain. After 2 hours I gave her some Motrin as well. I gave her some homeopathic stuff to no avail inbetween. Right now she is sitting in a darkened room alternating between crying out in pain and trying to rest. She hasn't vomited up her dinner.

This is hard, for the record, very hard. Hard to see her in pain. Hard because Tylenol and Motrin seem to have no effect. Hard because she was doing so very well and having such a great day. Hard because it looks like she will miss out on a very cool field trip to a 4D version of the Polar Express. Hard because when she screams it drives out all other thoughts from my brain.

Hard because she has experienced so much physical pain in her life already. Who do we call "uncle" to? Who? I am calling, "uncle, uncle, uncle!"

Migraines Suck.

Home Again

Ellie came home last night. We did get the MRI. They tried it with her awake. There is the quickie MRI like I mentioned. Ellie didn't like it one bit and ended up getting upset even with Mama in there with her. They had to put a cage like contraption over her face. I don't blame her for hating it. But they managed to get a few images of her ventricles that will establish a baseline for this new imaging going forward so we can avoid CT scans. The good news is that there was no change in her ventricles. Dr. Gumnerova is out of town so the neurosurgery team and Ellie's amazing pediatrician did not want to tap the shunt. Ellie's shunt system is so complicated that it's like balancing a dime. No one wants to mess with it.

The other thing was that instead of being lethargic, in pain, sleepy, and nauseous for 2 - 3 days Ellie felt better after 12 hours. I am not sure this was the fact that they gave her Zofran or IV hydration and electrolytes or that the Periactin was kicking in. Ellie's pediatrician in the Thanksgiving week had time to reconsider the Diamox trial and that is off the table - thankfully.

After all that we came home last night late with a script for Zofran (anti-nausea) to give Ellie at the onset of any symptoms and a whole list of follow up appointments to make: New neurologist who is a clinician versus a researcher and who runs a headache clinic - yay for engaged neurologists as it has been a long time since we have had one, GI doc check in on the weight loss, GI surgeon rescheduled appointment to see if Ellie's G-tube site needs to be closed and a new one put in, checkin with Dr. Gumnerova, follow up with pedi. Lots of calls to make and scheduling. Did I mention I could really use an administrative assistant?

It's a lot to manage.

Her pediatrician also convinced me to give Ellie the non-live version of the H1N1 vaccination. I thought I would come clean with that. We had been holding off with NO intention of giving it to her. He made a good case for her getting it though. And she has lost so much weight and her reserves are so low, and Dr. C, who is NOT inclined towards sensationalism in any direction said that 400 children have died this year of it already. He thought the consequences for Ellie would be "devastating". Dave and I discussed it and chose what we assessed to be the lesser of two evils. The child in me is complaining, "I don't like the Two Evils game!" and I have to agree. I know for a fact that I would like even less to lose my little one, my sweet girl. This is in no way advice or recommendation to anyone reading this regarding H1N1 vaccinations. We have been giving her vaccinations slowly over 7 years. She still has not had pertussis. We are very cautious about them and have given her more than we would have, had she not been in a train wreck at birth and so compromised.

The advice I would give ALL parents is to think for yourself. The doctors are "practicing" medicine. They are troubleshooting with a flashlight fueled by the power of their huge education, experience and knowledge. You as a parent are troubleshooting with a flashlight fueled by your HUGE daily observational data of your child combined with intuition and love (doctors, like Dr. Cloherty, add love to their flashlight too).

The fact of the matter is, that the best treatments and courses of action can only be found through a collaboration of these two lights.

Ellie went to school today after receiving her full breakfast without one burp. She looks pale and has dark circles under her eyes. She is very thin. I sent her in with all kinds of bulked up food with gracious amounts of organic real maple syrup as well as green food supplements. Dr. Cloherty, who is the best pediatrician anyone could ever have, said, "Let her go to school and take off the kid gloves with feeding her. She needs to live her life." He's right. If she has to be so restricted in her activities - it's more data and more cause for tests and exploration. But until then we need to get back to our normal.

***Image description: Ellie at her 7th birthday party opening gifts with Mama. This is a Tinker Bell toy that says a great many phrases and lights up as a lantern. Ellie's favorite is when Tinker Bell says, "Hi little Tinker!" Very perky indeed.

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.

It's a Mystery

Sometimes I think my blog should be called something like "All the Gory Details" or "A life to make you grateful for yours" or something like that. It's the outside in thing. I have stopped hoping for people outside my world to understand. Those that will, will, and those that won't never will no matter what I write or what they see in pictures. How's that for a cynical view of prejudice? It's true of my students as well. Some are there in the Master's program to learn, some are there just to get a degree. I have trouble with the latter since I love my profession and take a personal approach to teaching such that I still care if they get it or not. That hasn't been driven out of me yet...this is turning into a cynical post and I digress.

What this post is really about -back to the gory details part- is the last few months and the conclusions we have come to. Ellie has been having a very hard time on a few fronts since August. 2009 has been the year to get off meds. Lots of calculated risks and believing in my understanding of my Ellie versus what the medical community has to say. Since January she is off: Cisipride for Reflux, Depakote for Seizures, Protonix for Reflux, and mostly off her Zantac. That's a lot of change.

Since August she has not been sleeping well as you may have heard. We thought it was her brain adjusting off the Depakote- and so it may have been initially. Then when we had the mishap with pharmacy we pulled the protonix - which is a proton pump inhibitor. Then we realized that she was growing out of her g-tube and the bad pool water at her school and possibly some sand from all the beach going in the summer just made it worse. We tried two different sizes of G-tube and nothing worked. Then she started to have these episodes - one in August, two in September, two in October and then a week later in November where she would vomit and then not want to eat and not hold much down and be very sensitive to light and sound and irritable and exhausted. She has missed more school because of this than not. The whole episode would last for 4 days. The last day and a half where she would be doing better but just exhausted from the first two and a half days.

She missed a lot of school. I missed a lot of work. The world keeps moving forward at the most unforgiving pace.

She also turned 7. I need to do her annual montage but that will have to wait until I catch up a little more and until she gets on track.

The day after her birthday on November 10, she vomited, was exhausted, would want to play with her musical toy but the minute she held it would push it away and bury her face in my chest. Holding her didn't help. She didn't want to eat - but unlike a stomach virus - was able to hold down small volumes of rich food- avocado and coconut kefir to be exact. She would vomit up anything else. So the tummy bug / back to school virus was not holding water any more.

Then on Tuesday night she was up all night - screaming. Why we didn't bring her to the hospital at 2am when the worst of it was going on I have no idea. We did check her eyes and they dilated fine and evenly. She wasn't vomiting. She was just in pain. At 8am I brought her to her pediatrician. We realized that this was not a situation we could handle at home anymore. It wasn't some sort of repeated virus and it wasn't her g-tube - which was still in rag order because her stoma for the first time in six years was not healing as it should. But this was something else.

The pediatrician looked in her ears, eyes, throat (making her vomit) and looked concerned when I reported Ellie's weight loss which was roughly 5 pounds since August from so many weeks of these episodes. She had, had a little roll around the waist and some meat on her arms but now she was very thin.

Upon discerning that there was no ear, throat infection, no swollen glands no rashes and all the usual suspects he sent us across the street to Children's ER. In the ER they put in an IV (God bless all Nurses who are good at IV's on an ex-preemie's veins) did a shunt series and a head CT. They are very efficient there and got Ellie in a small dark room right away which was good considering she was still in a lot of pain. I chose not to giver her Tylenol (which I had been giving her when she was having these episodes) because I didn't want to mask any symptoms - because at this point we thought it was her shunt.

They gave her Zofran for nausea and this allowed her to sleep. We saw the neurology team, the neuro surgery team, the pediatric attending. The scans came back showing nothing. Theories were thrown around. The attending pediatrician said Migraines. I called Dave who was at work and asked him to search migraines. He did and found many, many reports of people who were long time users of proton pump inhibitors (prilosec and protonix) developing migraines either after quitting the drug or if they were over 3 hours late in taking their dose.

The problem was that because of Ellie's history and complex shunt system, no one wanted to believe the migraine diagnosis. The young Neurology resident was annoyed at the Neuro Surgery team for writing Ellie off so quickly, he was sure it was intercranial pressure.

They admitted her Wednesday night after 10 hours in the ER. I said I did not want to take her home with all of this going on. It was beyond our ability to help her because we were trying all the things we usually did and she was in pain and not eating and the weight loss had to stop.

They were reluctant to feed her if she was facing a brain surgery, so they kept her on IV fluids with some sugars in them and electrolytes. Dave and I took turns staying with her. She was there to be observed, hydrated, and tested. All her blood tests came back normal. White blood cell count was normal and not elevated which ruled out infection. They did a 24 hour EEG that came back normal - which was excellent because it ruled subliminal seizures. The nutritionist took away my print out of Ellie's diet with all the proportions and exactly what Ellie is given each day and gave it a full analysis. The very cool news is that Ellie, when she isn't sick, is getting 1,700 calories a day, enough fat, vitamins, and protein. Go figure and not any synthetic formula doing any of that. I have to say nutrition has come a long way since we first went to them at Children's in 2003. Then they thought we were nuts to go on whole foods. They had us try every formula in the book and when those formulas made Ellie more sick they said we were administering them incorrectly. It was Linda Scotson who gave me the guts and the know how to transition Ellie on to whole foods.

But this time the nutritionist looked at Ellie's diet and didn't bat an eye. She knew what coconut kefir was, shared the same concerns about Hemp and did the research on that for me. She was awesome. She respected our values. AND she gave me a great resource I have on order about homemade blended formula. She had a few suggestions and then she put in writing her results such that I had medical proof I could give to Ellie's doctors to show them that I wasn't starving her of protein and nutrition because she wasn't on pediasure or meat. By the way turns out that Hemp milk is very low allergen and one of the most bioavailable proteins out there. I put Ellie on it to replace some of her rice milk and she is doing beautifully. It was easily the best experience I have ever had with a nutritionist. And it was very validating. Dave when I showed him her report said, "Oh thank god! That's a relief!" I think now he might actually believe I knew what I was doing...

Our hospital stint did garner these two good findings - the normal EEG and the blessing on Ellie's whole foods, food combined diet. But it still did not answer what the heck was causing Ellie so much pain.

It came down to two camps. The migraine camp and the sub-optimally working shunt camp. The test they wanted to do to prove it was the shunt periodically malfunctioning was to put Ellie on Diamox which would reduce her body's production of Cerebral Spinal Fluid, such that if she was having intercranial pressure her symptoms would stop. The doctors who wanted to do this said there were hardly any side effects to the Diamox, but if you Google it you will see that is wrong. AND what if it isn't her shunt? What if messing with the amount of precious CSF bathing and protecting her brain could make the shunt clog? It was so difficult to get Ellie's shunt system working to begin with (4 surgeries) that I was very leery of this. Dr. Lillianna Gumnerova, who is Ellie's neurosurgeon and an attending at Children's, came down and examined Ellie and looked at all her scans and was very clear that if it was Ellie's shunt her symptoms in between episodes would not totally abate. Malfunctioning shunts just get worse. Since this is where she lives, we were inclined to believe her. She was also the only doctor out of all the others who was able to get Ellie's CSF to drain properly to begin with so she looms large in our world.

The other path was to try a drug called Periactin for migraines. A friend and a mother of one of Ellie's school friends told me about it. Turns out that antihistomines are great for migraines and this one especially. Also, it's a really old drug - tried and tested and the side effects are minimal. Ellie's pediatrician was coming by a few times a day to check on Ellie, which is how concerned he was and he's awesome! He is the only doctor that crossed all the teams. And they listen to him there. He wanted to go the Diamox route and knowing him and trusting him as I do and respecting him too, I asked him about the Periactin and couldn't we give that a try first? It takes a week to kick in, which will be this Sunday. He agreed with the understanding that if she had any symptoms - vomiting or the massive fatigue that we were to bring her straight in. This was the plan when we left on Friday night. So instead of driving to Virginia for Thanksgiving with my family we stayed put. My same friend who recommended the Periactin also invited us over for the holiday and it turns out she could give Martha Stewart and any Iron Chef a run for their money. Definitely one of the best Thanksgiving Day meals ever!

Ellie has seemed a little tired which is one of the two side effects they said she would have. The other is greater appetite. She has both. From Saturday till Wednesday Ellie slept better than she has in months. She is keeping all her food down. She was up Thursday at 4am because she was hungry so I gladly fed her. And she has been playing like there is no tomorrow. It's like she has to catch up. She wanted to sit in her princess couch and play with every toy she owns. She is not quite back to herself yet. She still is slightly irritable and the overhead lights bother her a lot. This Sunday it will be one week so we will see if the symptoms abate with the Periactin at its full effect. If that does not work we will either try the Diamox which still worries me or I will push for an MRI. That's invasive for sure because they have to give her anesthesia and intubate but much less invasive than exploratory shunt surgery and might weigh equally with the Diamox trial...maybe - putting a kid under is hugely hard on the body...ugh. I hate these choices we have to make. In the mean time I am working to feed Ellie as much as she can take. Her little feet even lost weight such that her AFO's are too big and she went down a diaper size. It was a year's worth of weight gain and all the moms of preemies out there know what a bummer that is.

That is how it's all going these days. We are feeding her, watching her, staying close to home and hoping for migraines. How crazy is that? Wishing that it was a migraine.... This whole experience is about picking the lesser of two evils. If it is migraines then hopefully in a few months they will abate if they are from the protonix withdrawal though migraines do run on my side of the family. And for the doctor that said that migraines don't last as long as 48-72 hours - you are so wrong.

All of the above is why I think I may change Ryn Tales to "All the Gory Details" (you never wanted to know).

At the end of the day I am very thankful that Ellie is here and that for now it looks like her shunt may be ok. At least we have a game plan or two and thank god for the wonderful medical community that does disagree in a healthy way and especially thank god for all those doctors that do listen to parents (nutritionists too). Ellie is better because of all of them. I am grateful too for my friend Holly who is so smart and gives me verbal and moral ammunition when I am out to push back when I need to, because it seems like I need to a lot sometimes, much more than I would prefer.

Ellie turned 7 this November 9th. She it still learning and growing and developing and the sweetest little girl. I am thankful I get to be her Mama.

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."

;-)