Ryn-newal

In January of this year I set out to transform my life.  I had been feeling tired every morning, Ellie wasn't sleeping at all...again, and I was just sick and tired of being tired and in pain all the time from a variety of things namely osteoarthritis to start.  And I am not even that old to have such a thing which incidentally has my doctors also scratching their heads.   I was also still so wound up from the previous months of finishing my dissertation and hosting a huge family party and dealing with a promotion which brought with it a lot of extra work.  No rest for the weary and I was weary.

Last summer I started exercising and that helped. I road my bike all summer which was a lovely thing. Though I was limited on how much I could ride by time but also Boston traffic which is a killer. The good people have deemed themselves "massholes" and they live up to this reputation and sadly as a result many cyclists are killed each year. So during peak traffic hours I don't ride. Then the bad weather hit...

However, from my bike racing days I had a perfectly good wind trainer collecting dust in my attic. I pulled it out and have been riding away, nearly every day regardless of weather or traffic. Now that it's warm I can do both inside or outside rides but ride every day.

This was a good start. Then I decided to give up meat, dairy, fish, sugar, caffeine, white flour, and gluten...yep it's a big list.   I was inspired by kriscarr.com and her books. Her book Crazy Sexy Diet contains a great deal of information I had heard over the years in various places but not so well explained. It's worth the read. 

As a result I pulled out a champion juicer that Dave had found at a low, low price on Ebay in 2003 that was collecting dust and began to use it every day to make versions of Kris' Make Juice Not War juice. I started drinking 16 to 32 ounces per day as well as blending up green drinks that were originally inspired by whole foods fresh smoothies which now are not nearly as tasty as what I blend myself. Instead of high glycemic fruits I blend up spinach and green apple and cucumber, cilantro and hemp seeds with water and fresh lemon. Yum.  

By doing all of this I lost 18 pounds and no longer wake up in the middle of the night from aching joints.  (Gluten has been linked to arthritis.)  The diet Kris proposes is a low inflammation diet - which is also really important for Ellie. I realized that some of her food is really high in inflammatory food so I changed that. For example I make her a dish called Green Goodness that was avocado, apple sauce, and strawberry coconut yogurt. Very high in sugar.  So I changed it to avocado, cucumber, mint and fresh pear and sometimes some plain coconut yogurt. And she eats it and loves it. I also add in hemp seeds. 

Instead of roasting her sweet potatoes for her puree I cook them at a low temperature so that they don't caramelize (which increases the sugar content). I also started her on 16 ounces of the green juice and got her off dairy.  As a result her nose is not constantly running and she has been sleeping through the night - nearly every night since she started getting the green juice. For those of you who have been following this blog for awhile - you know that is saying something!

I also have had allergies for years starting about 10 years ago that have kept me up hacking away and wiping my nose while I am trying to present.  Not fun. Cutting out dairy has changed all that. And I love cheese so it had to take something big and not having any allergic reaction to the tree pollen etc. is a huge change in my world for the better. 

I have also been meditating and practicing being more mindful.  All of this has turned out to be a way to transform my inner life and in so doing my outer life. I am 18 pounds lighter, way more rested because Ellie is sleeping and I am making a point to make sleep a priority, and so much happier.  I feel like I am finally decompressing from 10 years of really hard times in some ways (good times too).  But let's be honest, when you have a baby early and almost both die in the process then proceed through 134 days in the NICU and through multiple surgeries, illnesses, seizures, dealing with back issues of your own, having the expense of transforming your home to be accessible, and on and on and on - there's a lot to decompress from. And stuff is still going on that is really challenging to do with Cerebral Palsy as Ellie grows, e.g., her muscles and bones not keeping up with her growth, scoliosis, hip displasia, and on and on. 

So how do you get renewal out of that?  From the inside out in my case. I thought - I can't control her not sleeping or the stress of the world but I can control what goes into my mouth and what I think. The first part of that is way easier by the way.  Choices for eating are much more explicit and easy to manage than choices for what I think. But I am working on transforming both to be more positive, hopeful, proactive, abundant and most of all nourishing (for body and soul). And it's working. 

Often preemie blogs end by the time the kid is 8 or so.  I understand that.  But I want to keep going. Ellie's blog has been a way to keep time with myself, reach out to others in hopefully a helpful way, make connections that have taught me loads. There's a lot to report on, on this end.  

I wanted to share some things that have helped.

Pictures:
1. One green juice and one carrot, ginger, beet root juice
2. Ellie on Easter morning finding gifts from the Easter Bunny. Fijit ears to replace the ones that someone pulled out....very exciting indeed!

End Game

It's been a little while since I have been here. This is a quick update. Ellie is not sleeping but growing fast, fast, fast. Her room is built but we are fighting with insurance to get a lift. That part of it all is awful and draining. Ellie says she likes her new room but we have also been struggling with Home Depot get her black out blinds. We ordered them, paid for them, they took three weeks to send the wrong ones that let a ton of light in and then have been not getting back to us for another three weeks. I thought they were supposed to be customer friendly but I seriously wonder if I will ever shop there again. Ellie is not sleeping in her new room though she loves to play in it. However, she is up EVERY night. The room is bright, small but with lots of windows and my Lady Muck is a light sleeper. However, this morning she had breakfast in bed which is a particular thing she likes to do when I am the one getting her up. She is as sweet as ever.

Additionally, every little tiny extra thing to do feels colossal. My dissertation journey is in the end game. I just sent off a completed draft of the entire thing - 278 pages to my committee....

I am tired. Dave is sick and tired of me and my dissertation too. And I am sure Ellie is sick of me being away from her having to work on it every day after working at my job. Thank god I have found amazing people to cover her afternoons. But still, this whole thing, going back and fighting to have this dream of getting my degree feels a bit overwhelming at the moment. Maybe I am just tired but it also feels like a bitter pill that I didn't get this 10 years ago. I wish I had the sanity at that point to fight the school for what my committee did back then. But then again, it was all about Ellie for a long, long time which I am sure saved her life and mine too.

It's just a hard night. Instead of celebrating I am worried about my discussion section - the last chapter where you say what it all means and what it was all for. I am looking forward to feedback. And I wonder if Dave will ever forgive me for taking up so much time. We always feel like we have no time and yet we have things we both want to do and accomplish. Right now those things are at odds with each other and that is a hard place to be. I wonder if our life will ever get any easier. If Ellie will ever sleep, if we will ever get the things we need for her like the bloody lift, her new chair because she has out grown hers, etc.

Not happy at the moment. Am wondering what it's all for and what the end game will turn out to be. I am defending it on May 1. Any good luck or mojo or good vibes you can send me on that day will be much appreciated.

Conversations with Princess Ellie - 3AM Style

Ellie has been getting up at night for about one month now. Almost every night and seriously people I don't know how Dave and I did it for so many years. We have had about a year of her only getting up a few times a month which is like a huge vacation for us after her being up every night and vomiting or being sick and being in pain and before that when she was really little, we would be up with her to keep her breathing...good times.

Her being up again...kinda sucks. She started waking up I think because she is cutting a tooth. She has one really cute adult size front tooth and the other is taking ages to come in but has started to in earnest over the past month. Also, she gets up because she is growing. I was never a night eater as a kid but Dave was - so it's his fault! His gene pool that says, "must have full tummy to sleep!".

So we have been feeding her at night...

Ellie's first Pedi, told us when she was little, if you feed her at night you will train her body to wake up at night to be hungry and need to eat. Now all of you parents out there with kids that are on a continuous drip because your kid needs the calories - this does not apply to you. We have been there and when Ellie was on the drip her reflux was so bad that she woke up every other hour. That is how we spent the first 2.5 or more years of her life. So if you are living that my heart goes out to you.

Now that Ellie is bigger she still wakes up from reflux but also due to hunger and like all well trained NICU parents we get up, feed her, hold her up so the acid goes down and in doing so also end up playing with her. You just feel bad when Ellie is in pain and then she innocently signs "iphone" and you find yourself giving in and before you know it (especially if you are the dad of such an adorable and at times distressed Princess) you have set up her favorite seat and have a video going along with a hot meal all at 3am until 5am...and it starts to get regular.

Gah!

Two nights ago when Ellie was up, I went in to her, because, oh and this is another thing about raising a kid who has been known to have seizures, and is at risk of aspiration and can't sit up on her own, "cry it out" is medically NOT an option. We can't not go in. We have to check. I go in and I hoist her up on my lap - which takes me a try or two because she's heavy now, and I am annoyed and I say, "Ellie, why are you up? What do you want?" And she looks right at me and signs quite confidently, "iphone".

I say, "Ok let me get this straight, you are only up because you want to play?"

She signs, "yes!" Like, well done Mama, that's right!

I then proceed to read her the riot act:

"Ellie, you can't wake up in the middle of the night just to play any more because Mommy and Daddy are old and we need our sleep. You need your sleep too because you are a big girl and go to school. Mommy is working on her dissertation and needs rest to do that well. When you wake up at night from now on we are not going to eat or play. You are going to have to eat enough in the day. We will always come to help you and if you are in pain or sick we will hold you and help you until you feel better. But you can't get up at 3am any more to play. I love you."

I said all of this pacing each word and pausing between sentences. Sometimes between the sentence she would sign, "iphone" but after the third sentence her sign was more of a question, "iphone?" accompanied by a raised eyebrow.

Then I said, "I am going to hold you for 2 more minutes and then you have to go asleep" To which she reached down to touch her pillow to indicate for me to put her back on her bed. I go to lift her off my lap but she says no and holds my arm tight...

Was that a bluff?!

Ellie's got some eight year old chops to be sure! Ha! (This is the part of me that is always routing for her to give me a hard time and show that spirit and intelligence - that part of me LOVES this!)

I say, "Ok one more minute then."

I hold her for one more minute and then put her on her pillow and tuck her in and she grumbles but roles on her side, inserts thumb and still grumbling acquiesces to our new program of sleep through the night.

Wish us luck because the next stop is super nanny!

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

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.

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?

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

I think I'm a freak.

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

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

But...

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

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

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

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

I think I have post-traumatic stress syndrome. 

Will I ever trust sleep again? 

Conclusions and Musings

Ellie is definitely not having the summer break I planned for her to have and I couldn't feel worse about it.  We were going to go swimming every other day, work on eating, the whole house was going to get labeled in a word extravaganza to beat the band and on and on...

All of that has been out the window because of me being stupid and signing up to teach a graduate course in my capacity as an organizational psychologist not realizing how much work that would mean for the month of August when Ellie is out of school. And then of course there is the matter of Dave mutilating his left index finger. Such a bummer on so many levels. 

The good news is, he had the reconstructive surgery on Tuesday and the doc was able to save most of his finger right down to most of the finger nail!  Way more than he expected. I can only attribute that to Dave's generally strong constitution and the hyperbaric that he did every day in the between time when we were waiting for the finger to "declare itself".  That word "declare" brings me right back to the NICU when we were waiting for Ellie to "declare" herself - translation - whether she would live or die and if she lived what sequalea would follow her injury. Other NICU parents may have heard that word too. I don't think I will ever get over that NICU experience when just one little word can take me back. (Did I mention this post was going to be a bit of a ramble...?)  Luckily insurance will pay for most or part of the Hyperbaric oxygen treatments which tells me the actuary science behind all insurance is smarter than doctors in this matter.  Of course the doctor did not believe it about the HBOT helping - but who cares. I know it helped. The bad news is he is in allot of pain still  - percocet dreams for him now.

It's weird seeing him all loopy on the drug but way better than him being in pain. It's so funny after it kicks in I can tell all is right with the world. He'll comment on the beauty of small things he doesn't usually notice. He's such a gentle soul and a sweet person. It's really cute.

The bad news is that he won't be able to lift Ellie for a long time which means he can't look after her - he can't be left alone with her. So just when my career is getting into a higher gear, not sure which gear, but definitely more active than in a long time, he is taken out of the carer picture. It's bad in the sense that when I am working on site with clients I will have to leave sometimes at 6am. What are we going to do?! Sigh. My head is bowed in awe of all single parents, especially those of children with extraordinary needs.  I am in the process of finding people to help us. Not easy finding folks with the ability to deal with a non verbal kid, cute as she is, with CP. Luckily it looks like there are some angels in my corner and I am interviewing a new person tomorrow. Timing really stinks or is really precise from a karmatic perspective - however you want to look for it. At the end of August seems to be when all the people who help us from time to time need  a break. 

So right now when I need to be putting my lectures together and firming up my syllabus, do I take advantage of the fact that Ellie finally went to bed before 10pm? No, of course not! I decide to procrastinate instead. I have all my notes and draft syllabi's in front of me. My computer is set to go with perfectly blank page waiting and ready to absorb the flotsam and jetsam from my mind. But alas, I am writing this post instead -- which is a true sign of the pressure. Procrastination is my MO. All this writing should get me going - right?. Oh and did I mention Ellie has decided that between 2am and 5am is the best time frame to wake up screaming and wanting me and then once the reflux subsides she waits for Dada to come in too. Which of course he doesn't because he's dreaming on percocet. 

It's karma for Dave taking care of me all last summer after my knee surgery. Maybe he needed a break? Maybe it was time for him to have an enforced rest?  Either way, things are crazy. I don't think I am taking this as gracefully as I could. Always something to work on in my own development and unfoldment as a very flawed human being. Yup. And I just heard Ellie now on the monitor tossing and turning. GREAT. I can tell right now it's going to be another hard night where she decides she doesn't want to sleep at all. Is this all about being stretched, what doesn't kill you makes you grow stronger stuff? Or is what doesn't kill me just going to continuously kick my ass for the next little while?

Obviously this post is a rant. Just wanted to check in and let you know we are all still here in various states of consciousness slipping up and down the survival scale as if it were some sort of amusement park ride. 

I truly hope the end of your summer is going way better than ours!

Audaciously Dissing the GNS and Java Boycott Day:...whatever

Quick update on all things Ryn Tales: (in order of importance)

Ellie is kicking butt on ALL dimensions and it has been such a fun couple of weeks with her. Mind you she is always a blast but the last two weeks have been really excellent because of the reasons below:

1. Her oral aversion is GREATLY improved. This is an aversion she has had since the NICU which she overcame enough to eat when she was 3 but then when the seizures kicked in at age four she reverted back to being very aversive. Incidentally she developed seizures after 4 traumatic months of being integrated into the public school down the road. I can't help but think that is all linked. The upshot of this regression was that she would no longer even try to speak or mimic us or let us mimic the sounds she made and even more devastating, she refused to eat by mouth full stop. So that is where we are coming back from since May of 2006. So here we are on the verge of May 2008 and her carers are commenting that she is going to eat. I always have to add, "AGAIN, she used to eat you know!" Because if I don't keep telling myself and everyone else it feels like that will be lost forever - the fact that she ate - and along with it my hope and belief that she will eat again.

So what has she been doing that leads me to believe she is overcoming all of this:

a) on Saturday night when we were showing Dada how Ellie can brush her teeth - she not only let me in her mouth and not by me insisting but by her choosing for me to brush her back teeth (which is incredible for a kid with dysphasia and oral aversiveness and hypotonia that makes holding her head straight for any period of time difficult). I did so and she grimaced but did not gag (it is also amazing that her gag reflex has moved that far back because it used to be at the tip of her tongue) and then....she asked me to brush her teeth 3 more times. Not just a portion of them, but all of them. Being a somewhat disciplined maybe slightly obsessive toothbrusher myself - I totally get that! Sooo go Ellie!!!
b) She will play with food now, sometimes, especially if other kids are.
c) She will watch others eat. She used to get upset or not look or try to go away from eating folks when she decided food was suddenly not her thing way back in May of 06'
d) Saturday when Dave put a little bit of Ranchero (a yummy but disgusting nutritionally speaking puff like a cheese puff only with BBQ flavor (obviously an Irish creation) on her lips she pursed her lips and tasted it and liked it - very cute - very Irish. It would not be outside her gene pool to decide she will only eat crisps until she is 20 or 30...well better leave that alone for now.
e) She will practice sounds with us -right now we are working on M.
It may take a couple of years to get her speaking but in terms of the big picture - who the heck cares?! In two years she will only be 7 and if she were speaking by then I would be so incredibly delighted. When you're 5 you have some time to work on things.

2) Gross Motor and Physical Energy:
Ellie's physical energy seems greatly increased. She is less tired and wants to move all the time now. She wants to roll and will also pick to do her Pony. She hardly every picked it before. The other amazing thing about her in the Pony is that on her own with no coaxing she will take regular steps. She used to push off with both feet or just use the right leg and foot with her left dragging along. But now she is using both in a regular walking motion consistently. Hurray for Ellie!

And rolling - sheesh! the kid is fast and wants to roll up and down our ABC rug 10 to 20 times which is allot for Ellie. Maybe more. It's great to see her so energetic and not have everyone always commenting how tired she looks.

3) SLEEP UPDATE: This one is definitely throwing caution to the winds so in light of that I will bold all the really important parts so they really stand out:

Ellie is typically sleeping through 2 to 3 nights in a row and then will be up the third or fourth night. I have actually been tracking this closely to try to understand why and have realized that if she doesn't get enough calories and the difference can be as little as 20 she will wake. If she is cold she will wake so we have been keeping the house warmer at night in case she kicks her covers off. If she gets her meds too late she will wake. If she eats too late she will reflux in the night and wake. So at least I can try to mitigate a visit from the GNS by watching all these things. Ellie's system is very sensitive so tracking all this is helpful because though she is strong minded she is also a delicate flower.


4) Java Boycott:
The day after my last update I had no coffee and only two cups of caffeinated tea. The next day I had only one cup of caffeinated tea. And today I had none as I have built up my stock of decaf tea BUT I did go have breakfast at Victor's and my plan to head off my thoughtful waitress before she wasted a cup was thwarted in the doorway of the diner by a very pushy woman looking for directions. I gave her directions but only after she had vented all her being lost frustration on me first and when I walked back into the diner there in my favorite spot to sit and practice signing was a small OJ and a steaming cup of Jo. I couldn't tell her, gee don't want that, but thanks! That really is the nicest thing someone has done for me today! So I drank a quarter of it. So barring any pushy lost people hopefully I will be able to tell her next time before she pours. sigh. When people are really nice like that you acknowledge their small kindnesses.

Overall, the no coffee thing is actually getting much easier. I feel less tired, have to pee less, and my body feels less tense. I have been aiming to exercise 5 days per week to increase my energy that way instead of with coffee and it seems to be working.

There's probably more and I have some really cute pictures and videos of Ellie to share but that will have to be next post.

Java Boycott - Day 2

OK - so it turns out that not only do I have to quit caffeine but I have to get everyone else on board. I am wayyyyyyy deep into the coffee culture and that culture is hanging on tight. sniff, sniff....

First of all the Gods of Java are in bed with the Gods of No Sleep and they all got together last night and came over. Yep - I spoke too soon, Ellie was up for half the night and of course it was the night before I had to take the first half of my sign language final exam. I believe the name of this half of the test is titled, "How to look like an idiot in under 2 seconds flat" which is translation for having to sign an entire song in front of the entire class. rrrrr (Actually learning to sign a song is a great way to increase your sign language vocabulary and kind of fun. It's just the having to sign it and act it out in front of others that bites.) I did my main practicing while driving back and forth to pick Ellie up. People are so rude to stare at me like that! Haven't they seen sign language before?! Sheesh.

But I digress. So I was up half the night because even if Dave goes in, I can still hear her and can't sleep the difference is I can at least not get a huge crick in my neck and now I owe him the whole week of nights, which is how I got him to go in and take last night. See the marital dynamics?! It's all one big fat negotiation after the next. Alas, it works and we are happy and if the GNS are here for the rest of the week I am so screwed.

OK, OK - can you tell I have had some caffeine!? So up half the night, big test looming at 10am. But just the same I did gear down and only have a cup of Barry's tea this morning. I get to school just fine and am feeling pretty good. I drop Ellie off and head off to the diner I always go to in the hour I have to cool my heals before class. They have the BEST pancakes in Boston and I can get two strips of beacon, a large pancake, one egg over easy, bottomless cup of coffee and a small OJ for under $7. And they don't mind that I sit there and frantically practice my signs to brush up before class. The waitress is really sweet and one of those people that can call you honey and it is a nice thing. Usually I walk in and I say, "Hi!" to her and the guys behind the breakfast bar at the fryer. She says, "Hi honey." and brings over my coffee and OJ. 5 minutes after that my breakfast appears. You see the problem? So with the hot steaming cup of brown gold right under my nose, I thought, OK, because I have this sign language test I will just drink half a cup. But after my pancake was demolished she came over and filled my cup up again with coffee!

What am I going to do? I am going to have to admit I am jumping off the java bandwagon. Next Tuesday I will have to say, "Hi, just OJ today please, trying to quit." I hope she understands.

Sigh. This might be harder than I thought!

Caffeine Dreams

I wasn’t always a caffeine drinker (a.k.a. caffeine: abuser, holic, covetous imbiber of the brown death). No. Actually for years I shunned all caffeinated drink and food. I could sip warm herbal teas with the best of them. I used to drink orange juice for a pick me up or water.

On the occasional chance that I would accidentally eat something with caffeine it would give me the jitters leaving me tired afterward. I didn’t even like chocolate as a kid (I did like white chocolate Easter bunnies though).

I worked as a barrista in a mom and pop coffee shop that roasted its’ own beans and everything. I loved the aroma but not the drink itself. So what happened? How did I get snared by this non-drug, drug?

It was a trifold curse starting with Graduate school and the allure of Starbucks, seconded by birth of nonsleeping spawn, and thirded by caffeine addicted sibling who bought us a cheapo coffee maker and then spent a week plying us with evil brown morning elixer of life.

In graduate school I chose to write one of the many, many 35 pagers on Starbucks and their unique business model. My paper complete with graphs was a 50 plus page comment on my enthusiasm. Evidence that I had fallen in love with the whole third place to escape to, brown warm fuzzy in a cup, cool to be seen not seeming to be seen, I am finally not such a goodie two shoes non coffee drinking odd ball culture. And little by little I was hooked on latte’s: tall soy vanilla lattes please. The fact that I was working full time and going to graduate school full time did nothing to dissuade the extra mental clarity I would get after my own natural resources were wasted. I became a coffee achiever and devotee. And truly I am grateful for the Starbucks in Redondo Beach where I could sit outside for hours reading through hundreds of pages of required learning and sip a latte and feel the flow of life around me versus being shut up in my room going mad trying to get through all that reading as interesting as it was. For that I will always love Starbucks.

Then Ellie was born and she turned out to be a disciple of the Gods of No Sleep (GNS) for the first four years of her life. (Update on what we will just say is a new sleep pattern coming soon - maybe - you know I am superstitious about that and GNS are petty, vindictive, narcissistic lot - so enough said!) And because she is Ellie and we are attachment parents and her medical needs were intense it was an up all night party and I was still working the big job. Coffee became essential.

But now that Ellie is embarking on a new night time routine involving different gods (sorry to be vague but you know why) I am starting to remember that I really don’t like caffeine. For one it wrecks my skin. I remember that from college when I would accidentally get some caffeine and my skin would look blotchy. Also, after all the trauma and fatigue and STRESS of the last 5 years caffeine with its two stepping dance partner cortisol is the last thing I need. And, let’s face it folks I am getting older. And caffeine and the lack of sleep for the past several years are the main culprits to making me look my age, which I never have and don’t yet but am getting closer. Since I am not one for celebrity age control madness meaning: botox, mechanical fluid injections, leech therapy, Ashton Kutcher therapy (well maybe Ashton Kutcher…) are not in my future I need to cut out the caffeine and the processed suger and the stress... put one foot in front of the other....(see how my mind wanders?!)

I really feel that not having any caffeine will help all my cells take a deep breath and a long exhale which I badly need to relax. Ellie is stronger now and healthier and settled in a GREAT school – so it’s time to abandon the flight/fight/fright approach to life with all its highs and lows and relax into a rhythm that will help me keep a steady pace.

So today I didn’t have any espresso in the morning from our lovely espresso maker. I slogged through the day until 3:30 pm. But there was work to be done and my brain was foggy all day. So I broke down under the selfless, lying auspices of making a latte for a friend (not that I don’t enjoy serving my friends) and made a cuppa the brown death for myself as well. Yep. One, two, three gulps gone just like the old owl discerning how many licks it takes to get to the center of a tootsie pop. That would be three, three gulps to finish a latte and presto! I felt more awake, more alert, and my cells sighed in sadness as the wall came down and my heart began to race. I really don’t know how drug users do it assuming coke and crack are a slight bit more intense than caffeine but then again maybe they aren’t.

Tomorrow is another day and instead of going cold turkey maybe I will just have a cuppa Barry’s tea. Any thoughts out there on how to break this addiction?! Or am I completely batshit insane and should just give up trying to quit as a bad job?

Medical Ju-Jitsu!

Tap Dancing

Fire Walking

Western Cowboy dancing as bullets are fired at his feet

Tightrope Walking

Trapeze Swinging

Plate Spinning

Mind Boggling

Wrestling

What do all these things have in common? Just the mere fact that they describe the labyrinth we are in right now trying to figure out what is best to do for Ellie. I haven’t posted much because I am trying to get information from doctors and as such slave to my unending phone list that continues to shrink and grow like some big fat freakish cyber worm that thrives despite chunks being eaten out of it by little persistent mothers.

Here is the thing, Ellie has reflux. She has seizures. She has massive hypotonia with an overlay of spasticity in her ankles. She has a vision loss that has increased from 20/60 to 20/260 in two years. She has a mild hearing loss. She has strabismus in her eyes that has gotten much more out of control over the last six months. Over the last 3 months she has gained two pounds and 1.5 or more inches to weigh in at 28 pounds and measure at 38 and half inches tall.

She is in a growth explosion.

She is changing cognitively as well as you might have noticed from all our days out where instead of cowering in her stroller she is happily taking in her world in the sponge like way little kids do.

She is a joy – just don’t want you to forget that. My anxiety is high because I want to preserve her life. I want her to live a long time healthily and happily. I don't want any big disease monsters to swallow her up or rip her out of my arms.

But because of reflux and seizures and constipation (the first and last have everything to do with being Hypotonic which includes all the sphincters in her body) she is on a ton of meds. Cisipride, Zantac, Protonix, Myralax, Depakote. She has been on the first three for four years and on the Myralax for 2 and on the Depakote for sadly 1 year. That’s a lot for a little girl's liver to take. We recently got the vision report that told us that she had this HUGE vision loss. Though in going over it with her neurologist yesterday we decided that it wasn’t totally conclusive and have to get her a couple more tests to really know for sure (did you hear that?! My cyberphonelist worm just burped loudly!). That said the whole wandering eye thing is something that is noticeably obviously new and different.

Because of this we started to really research all the meds she is on and look for evidence of drug interactions. Or at least Dave did. He did because I freaked out about the vision loss and was in a panic over it and told him my gut was telling me it had something to do with the Cisipride. So Dave, with his awesome amazing brain that is 2 parts Sherlock Holms, one part Copernicus, and millions of parts amazing computer scientist internet savvy guy found this site that tells you about all the meds in depth including rare side effects.

Guess what we found? A rare side effect of Cisipride is seizures and vision change or loss. A rare side effect of the Depakote (that we are using to treat Ellie’s seizures) is vision loss. So here we are treating Ellie’s reflux with diet and meds. Happily giving her a medication that could be the cause of her seizures though it’s really hard to know and then in turn medicating her for seizures with a med that can negatively effect her vision.

Someone, anyone, please shoot me now.

I am not quick enough for all of this medical Ju-jitsu.

All along we have been adamant about NOT treating her reflux surgically (meaning getting her a fundoplication which I have written about before) because we were sure she would stop eating because it makes it hard to swallow at least according to many adults who have written about it on the Internet. Most of them also reported losing 10% or more body weight, which would be a horrible thing for my Skinny-Minnie girl. Though these days the ribs are not as noticeable (her cheeks have always been quite full despite low weight). How many 3 year olds do you know that weighed in at 22 pounds? Now at 4.5 years old she is whopping 28 pounder.

Ironically and sadly, last May, she stopped eating completely by mouth despite our best efforts.

Most nights she wakes up multiple times for hours at a time due to reflux. I think on the nights she doesn't wake up it's not because she is not refluxing but because she is so exhausted. The Gods of Sleep through the Night are actually the Gods of GERD. F&CK%R$!

What to do?

Here are some options:

1. Continue to treat the reflux with medications that are only minimally effective and will certainly one day in the not too distant future ruin her liver which would be fatal on top of having all kinds of other side effects including seizures and vision loss.

2. Take her off the Cisipride, Zantac, and Myralax and take our chances. Go see the “Witch Doctors” including acupuncturists, herbalists, naturopaths, homeopaths, and on and on to try to find alternative solutions for reflux or diet change even though she is already on a low acid diet that I have written about extensively. I still believe in this diet as she is gaining weight on it, has the most beautiful skin and hair I have ever seen and it has been vetted by a nutritionist who is open minded to not personally supporting Enfamil. She also is much less gassy and vomits less on it. But it's not perfect.

Also, no insult to said Witch Doctors. I have had quite a huge healing of my own tattered first two vertebrae because of Network Chiropractic – which I am huge believer in because it delivered me from years of chronic neck pain. But the problem is, no two WD’s say the same thing about Ellie. In my gut I know to explore with caution and I will. But it all takes time. If we take her off the reflux meds the big, her esophagus is going to disintegrate clock, starts ticking - LOUDLY like in Poe’s Tell Tale Heart (please somebody know that reference!).

3. Realize that her reflux will be here until stem cells can heal her brain which is probably several years away and get her the fundoplication surgery and get her off the meds. A good friend and uber nurse told me that she has seen more than one child stop eating when they develop cognitively enough to realize that when they eat they get painful acid in their throat and mouth – this could certainly be what happened with Ellie last May. And that when they get the fundo and no longer experience that pain, start eating and get rid of their G-tubes. All that said, I still know implicitly we did the right thing not getting Ellie the fundo with her G-tube when she was one month old corrected and under 4 pounds.

G-tubes and fundos are NOT necessitated as some doctors might lead their patients to believe. Also, for the doctor I heard tell this to a mother in the bed next to our, G-tubes are NOT like wearing a wrist watch. I think he needs to get one and see if that analogy still fits. Some Residents are such idiots!

Rant, rant.

But if you follow this link to the description to this surgery you will realize quite quickly why I am not a fan. It just seems so barbaric and awful and God I hate the choices before me for my warrior princess pigtail sporting cutie pie. It’s just not fair.

So there are our options. Sucks doesn’t it?!

Spring meltdown

Today it will get up to 86 degrees Fahrenheit. That’s hot when you combine it with high humidity. We had about one week of lovely Spring between frigid cold Winter and Summer’s cauldron. These extremes are certainly reflective of my mood as well. We are still dealing with our Registry of Motor Vehicles in order to ensure not getting heavily taxed on the vehicle we had to buy to accommodate Ellie’s wheelchair. I wrote about this here. Ok – that was 11 months ago and the saga continues.

On top of all of this, Ellie is not sleeping much, er, at all and I am exhausted. I stress over the not sleeping. I go to bed each night cringing at the thought of having to get up and be coherent at 3am until 5am or 6am or 7am. During that time I have to lift Ellie up. She will want to sit on my lap, which for some reason at that hour really presses on my kidneys and hurts. Then she will want to play because she is so glad to see me. That part is really cute though I tell her, “Ellie, it’s not play time! It’s sleepy time. See how dark it is.”

Then I will try to figure out why she woke up which is really hard because she is non verbal and has her own 4 year old night time agenda. So I start by asking her, “Ellie do you have an aowie?” If she does (this is my translation of her actions from doing this countless times) her answer will be to throw her arms out to the side, swing her head back and forth, smile and squeal! It’s a massive, “Yes, I do! You got it right Mama! Nice Job!” Then I will ask her, “Ellie, where is your aowie?”

Sometimes she will tell me the specific place by putting her hands on it and then placing my hand on it – she does this when it’s her feet/braces/ or casts that I can do nothing about. If it is her AFO’s I will remove them. If she has just had a new cast I will get her Motrin.

Sometimes she will put her hand on the side of her mouth – her sign for yes. When this is the response I say, “How about mama kiss it better?” To this she smiles and gives me a gigantic nuzzle and then holds her face very still so I can kiss her cheek. This is the cutest thing ever even at 4am.

Often, however, her response to the do you have an aowie question is to put her hand just above her forehead where that bad shunt is. She does that a lot and it freaks me out. I stay calm and I say, “Do you have an aowie in your head?” And she will either squeal and do her yes or nuzzle me. Either way I kiss her on her head and then worry about this for the next week. She may be in pain. God knows what it feels like to have shunts. We did read that going from lying to sitting could be quite painful in a head rush sort of way. I hope one day she can tell me

If she looks ok I go on to the next part of the discovery process. Next I may ask her if she is not getting sleepy if she is hungry. Before when we would bring her down stairs when she was hungry she would always say yes to this, just to go downstairs. But now, when she is up at night we don’t reward her by bringing her downstairs so she can play with her toys. Even though this means running up and down stairs for food and pain meds. I also check if she needs a diaper change.

If it is hunger or a new diaper that is needed, once she gets food or changed she settles in somewhat quickly and will snuggle in for a sleep. More often then not however, she just wants me or is in pain. She wants to be in my lap. Even if I won’t play with her or sing to her, she just wants me there. Eventually she gets tired of sitting and will want to lie down. She will snuggle in and clutch a handful of my pajama top and hang on to it for dear life. Then she will proceed to toss and turn. Sometimes I can sneak out of her room and she will actually sleep better. But some nights when she has some unknown pain she will sleep lightly and not want me to leave at all. I don’t blame her. She has bad reflux and can’t sit up on her own. I think it must be scary to be alone, in the dark, and having trouble clearing secretions – so of course I stay.

But gosh I am tired and it makes the rest of the things you have to do all day seem more difficult. I don’t usually write about how hard this has all been. But I have to say, if you know a parent of a kid with brain damage, assume they don’t sleep very well, and if you are in the position to help them, then do help them. Offer to watch their child for an hour or two so they can go take a nap!

Surrendering to the GSTTN

Ellie would have been officially 4 had she made it to her due date on February 4th. I like to point that out to myself every so often in light of her achievements. They told us that most preemies catch up by age 3 but that is about as likely as a bad student, good ol boy, dumbass like George Bush becoming President. Well, ok – it happens sometimes. But with Ellie at 24 pounds and 36 inches and still waking up at night – it’s not our case.

In the spirit of sizing up where I am at I got to thinking about sleep, probably because I haven’t had much lately. Which incidentally makes me forgetful and about as efficient as a carpenter ant on LSD. In an effort to become sanguine with the state of my sleep deficit I decided to tally it up.

Here are my calculations:

In an ideal world where children go to bed at 7:30, sleep through the night and then play quietly and happily in their beds until 9am or 10am needing no assistance I would get 8 hours of sleep per night from roughly midnight or 1am to 9am. You see I am a night owl and the whole get up before nine thing go to bed before midnight thing just continuously messes up all my circadian rhythms. But anyway – in this ideal fantasy land where Al Gore was not cheated out of his popular vote winning Presidency – I would get roughly 2,920 hours of sleep per year. Ah – to dream and sleep and let all my internal organs have a break from the churn of daily life….

In reality where Bush is President, Gore grew a beard and hid out in academia and all hell broke loose in wars and global warming everywhere – I average about 5 hours of sleep per night. That means on my night where I get up with Ellie several times I may get one or two stretches of sleep. On nights where dear sweet husband gets up with her I get more sleep but still wake up because I can never sleep through when I hear her – it’s a mom thing. I think even averaging it out to 5 hours per night is a bit generous. But we’ll leave it at that. Which means that in 4 years time, since Lady Muck arrived, I have racked up a sleep deficit of roughly 4,380 hours.

I have read that to catch up on a sleep deficit it’s an hour to hour ratio meaning you can’t take a 10 minute power nap and think it wipes out a few hours. NO. It’s hour for hour like Hammurabi’s Code – an eye for an eye. Like I said, the Gods of Sleep Through the Night (GSTTN) are ruthless and very exacting being the sons of the Gods of No Sleep (GNS). So in the spirit of staying positive and being proactive in dealing with this deficit I thought I could do these things:

Take a two hour nap every day for the next 12 years – one hour for the current sleep deficit and one hour for the ongoing deficit. After 12 years I would only have to take an hour nap per day to stay sleep deficit free (unless Ellie is sleeping through the night by then- don't read that too loudly ok?)

Take 24 five-minute cat naps per day.

Sleep an extra 12 hours per day for one year.

Sleep an extra 3 hours per night for 4 years.

I don’t think I will ever catch up on my sleep deficit. This is why the GSTTN and the GNS are such a wealthy lot. They already have 4,000+ hours of my sleep. They have shining skin and are very Zen in their approach to torturing parents – unrushed and unperturbed. They are calm and clear minded.

Any suggestions? How are you managing your sleep deficit?

Lessons Learned

Lesson #1: Never name or thank or acknowledge the Gods of Sleep Through The Night (GSTTN) EVER! (Like I did here.) They really don't appreciate it and prefer to stay anonymous and therefore avoid all responsibility and maintain their mysterious ways.

Lesson #2: The GSTTN are a vindictive lot and don't play nice - so refer to Lesson 1.