Truce

Tonight, the kids and I returned home to find a huge basket of cookies waiting at our door with the following note:

Dear Meg, Family, and Dogs,
Welcome to the neighborhood.
I hope you like cookies.

Kind Regards,
First Lady of the home owners association**

________________________________

Back when Ellen was having 100 seizures a day and we were facing Rasmussen’s as the very likely diagnosis and looming hemispherectomy (so, you know, like two weeks ago), a colleague of mine and I were talking and I said to her, “The world has stopped making sense.”

And while I was there, the tide bringing those terrible things to my family, it felt very true.  It felt like I was drowning.  But the world was still making sense then.  I can see that now.  I can see it in the little gifts that kept arriving for Ellen and Harry.  From the texts and calls and emails.  From the people stopping by my office and taking me to lunch and helping us pack and making us dinner and fixing our furnace.  From everyone that held my hand and listened to me explain and cry.  From everyone who said “I’m sorry” or “What the fuck??”  From everyone that read updates here and posted kindnesses and support.

You never forget those things.  Just like you never forget the people who came to your wedding, or the people who called or sent a note after your miscarriage.  I don’t, anyway.

Things are still hard and uncertain.  Things may get very dark again.  But just now, buoyed by our good news and as we settle in to our new home, in honor of all the many large and small kindnesses we have been shown, it’s probably a good idea for me to call a truce with the First Lady.  The bitch did send cookies.

**I’m fairly certain that the note belies the true givers, a certain family whose members’ names rhyme with “Clamber”, “Fawn”, “Chillin”, “Pollen”, and “Shin-jewel-uh” (sorry “Shin”, nothing rhymes with you but Aunt “Peggie” loves you anyway.)

I think I just pulled a hamstring on my virtual run

The results from our LTM stay were that the hemispherectomy is no longer on the table for us.  Whatever Ellen’s future challenges are, hemispherectomy is not likely to be one of them.

However, for the past few months we have been sitting with this possibility on the table, and we got to know an amazing organization called The Hemispherectomy Foundation.  They support children and families who are impacted by hemispherectomy at all stages of the process.  There are several conditions (including Rasmussen’s, Pediatric Stroke, Sturge-Weber Syndrome, Cortical Dysplasia, Hemimegalencephaly, and others) that indicate hemispherectomy, but still only 50 or so of the surgeries are done every year.  It is a dramatic and irreversible surgery.  There are many success stories, but the surgery itself requires a lengthy recovery and extensive rehabilitation.  It takes an emotional and financial toll on the families who experience it, and the Hemispherectomy Foundation helps to offset those tolls through community building, information sharing, and financial support.

We were connected with an amazing group of supportive families through this Foundation as we waited to learn about Ellen’s diagnosis, and we were so moved by the stories of families who had survived and thrived, families who shared their ongoing struggle, and families who waited for their own results along with us.  We won’t have to progress past the initial waiting/hoping stage of hemispherectomy research, but many families each year will.  The kind support we received moved us, and we want to continue to support this Foundation that does such amazing work.

The Hemispherectomy Foundation holds one big fundraiser every year:  The Dreams on Wings 5k.  It is held in Weatherford, TX, and we’re unable to go this year.  However, we registered a “virtual team” called “The Winderbombers”  You don’t have to run to join our virtual team.  You get a free t-shirt just for registering (registration is $30) by April 15^th!  You can register here , whether you feel like running or not (just click on the “Virtual Runner” tab up near the top of the registration form, and don’t forget to put our team name in there!)

However, we are going to hold a fun run on May 26^th and anyone who registers as a virtual runner and will be in Boston that day is welcome to join us!  We’re going to do a (casual, untimed, likely extremely unprofessional) 5k on the esplanade on May 26^th in the morning, probably around 10am.  If enough people want to join us, maybe we’ll have a picnic afterward.  If you don’t want to run but register as a virtual runner, you can just come for the picnic.   If you register, shoot me an email or leave a comment and let me know if you want to run or come and hang out while I/we run (still trying to convince Jbone.)  If you are fast, be prepared to do a lot of picnicking, as I am very slow.  I’ll make extra cookies.  🙂

Right Now

So, right now, we’re just waiting.  We have an appointment on April 5, and we’ll talk to Ellen’s doctor then about which medication we’ll be adding next.

He still wants to do the spinal tap, but the neuroimmunologist said that given the fact that the seizures are now on both sides and Rasmussen’s isn’t the leading diagnosis, it isn’t urgent.  He even said that in his opinion it was an “optional procedure.”  He did defer to Ellen’s doctor, but I’m not really that interested in putting her through that right now.  They called to schedule it a few days ago and I told them we’d call them when we were ready.  I guess we’ll talk to him about it at the next appointment.  If there is some very concrete information he is looking to gather, I guess we’ll think about it, but if it is just for curiosity’s sake, I’m not in any rush.

John and I both realized a couple days ago that the hemispherectomy is off the table indefinitely.  It’s unlikely that she has Rasmussen’s now, but even if she did, the hemi wouldn’t be an effective treatment anyway.  It is nice to know we won’t have to go down that particular path.  It does still feel overwhelming that so many paths are still open.  But none of the treatment plans on the table right now are on the same scale as that irreversible surgery, so we feel very lucky.  It is still possible that she will require surgery at some point, but everything after considering hemispherectomy seems like a relief.

Otherwise, we’re hanging in there.  I have the distinct feeling that all of this would be easier if I could sleep.  I remember sleep so fondly.  I think I really enjoyed it.  Come back, old friend!  Unfortunately, our sweetie boy continues to have trouble.  He actually slept pretty successfully last night from about 1am-5:45am, so that’s something.  Unfortunately, it took 45 minutes of nursing/rocking/patting/shushing/tylenol to get him down without screaming, and I’m up at 5am, so that’s not exactly the best night’s sleep I’ve ever had.  I’m not sure if he’s getting sick, or a tooth, or just having allergies like I am, or maybe has some water in his ears from the bath, or what.  But he’s snorfly and ear-rubby.  I gave him tylenol at 12:30 last night because I wasn’t sure if something was hurting and that may have been the reason for the good sleep.   Coffee, my sweet, sweet mistress.

Pretty Cool

So, something pretty cool happened while we were at the hospital.

When we checked in to our room, we noticed that our view was not of the Boston skyline, but instead of the interworkings of the construction of an addition that they are building on the hospital.  Our nurse (and several after her) apologized about our crappy view, but we didn’t mind.  Ellen loves construction, and frankly, I do too.  We were up on the ninth floor, so we got to see the elevator they use to bring up supplies and the huge encased ladder that the workers use to climb up the crane (which is at least 12 stories tall!  Can you imagine climbing a ladder in the open air that is 12 stories tall?)

On the day that we checked in, I noticed that there were some names painted on the steel girders framing the new addition out our window.  ‘Janell’, ‘Roberto’, ‘Shriya’, and ‘Ryan Doyle’ were all painted on the 9th floor girders.  For a few minutes, I imagined Janell (and the others’) friends climbing into the building in the night (probably on that super scary ladder!)  How brave they must be.  How much they must want to brighten her day.  What it must mean to her when she wakes in the morning and sees.

At some point the first day, Sam (the Child Life Specialist) mentioned that if we wrote Ellen’s name on the window, actually the construction workers themselves might paint her name on a girder.  That seemed pretty awesome, but we were pretty well occupied with the goings on of Ellen’s monitoring.  Add to that, they didn’t really like her moving around too much (as it makes following her with the camera difficult.)  So, we just didn’t do it.

There was already a painting on our window:  a house that someone had painted and an American flag.  We just left them there.

On the third day, Ellen had a ton of seizures in the morning, so I was finally not worried that they wouldn’t have adequate events to study.  Ellen was so bored by that point.  It was hard to engage her in anything.  We would flip from one to another activity spending only a moment or two on each.  She was antsy.  She just didn’t want to be sitting in bed any longer.

I got up and began to wash the window with a paper towel.  She watched me curiously and asked what I was doing.  I explained that I was thinking of making a sign for the construction workers and needed to clean off some of the paint so they could see it.  She was interested.  She asked for her own paper towel, and the two of us went to work.  We wiped and scrubbed for over an hour.  We just took our time, as it was the first thing she had been truly interested in in a few days.  As we wiped and rinsed, we talked about what the workers were doing, what machines they were using, what materials they worked with.  A welder was working up on the 10th floor and we could see some flashes and some sparks.  I explained what he was doing and I told her that I knew how to weld.  She was incredulous.  “Does Daddy know how to weld too?”, she asked.  “Nope”, I said.  “Just me.  It’s pretty hard.  You have to wear those special glasses and stuff.  Not many people know how to do it.  But maybe you can learn someday.” 🙂  (I learned in a sculpture class in undergrad and I liked it so much that pretty much every sculpture I made all term was welded.)

Along the way, as we worked, our counterparts on the other side noticed us, just as we noticed them.  All of the workmen waved and smiled at Ellen, giving her the thumbs up and holding up their tools and materials for her to see.  Ellen and I both enjoyed it so much.

We got about half of the window cleaned off and we put up our quick construction paper sign.

Ellen got her vitals taken and we called down to Sam to see if there was any way we could get our hands on that window paint.  She was busy, but instead brought Ellen two (!) cupcakes to decorate.

After the cupcakes, we convened at the window again, just looking around.  Most of the workers were now in a different part of the building, but one of the biggest, grizzliest guys (a welder) held up his torch and mouthed “I have to weld” and then made a motion of pulling down the window shade.  All of the welding that had gone on previously had been small torches or far enough away that the arcs hadn’t been dangerous to watch.  But he was pretty close to us, probably only 10 or 15 feet away, so I smiled and we waved goodbye and pulled down the shade.

A few minutes later, our lunch came, so we ate and chatted.  After we were done eating, I peeked out under the shade to see if the welding was finished.  The workers were no longer there (I think they were probably on lunch.)  But a surprise greeted us.

We were both very excited.  It appears that the welder even knew that Ellen’s favorite color was green!  I don’t know if he actually did any welding or if he asked us to lower the shade just so that he could paint her name.  But it was pretty spectacular.  It made me cry some very quiet tears in that moment and then again when I told John about it and again now as I type up the story.

Very soon after that, Steve (our EEG tech) came to remove Ellen’s leads.  I told him that they had painted Ellen’s name on the girder just outside our window.  He talked about how amazing they are, always smiling and waving at the kids in the windows, and painting their names.  “They don’t have to do that, you know”, Steve said.  It’s a good way to put it.  They are brave and hardworking.  Doing their work up high, in the wind and the cold.  Asking mothers to lower sunshades so that they can work for a few minutes on a surprise for her child.

After her leads were off, we cleaned the rest of the window and together painted a Happy St. Patrick’s Day message for the workers.  They were excited to come back from lunch and see us putting the finishing touches on it.  A bunch of them stood by the edge of the building together, watching us work and sending Ellen encouraging smiles and lots of thumbs up.  She was so proud of our message and seeing her name in green, painted there, where it will stay even after that building is built up around that girder.  For a very, very long time.  Forever, even.

LTM Findings

One of the findings from long term monitoring is that Ellen really loves chocolate milk.  And juice.  In the interest of keeping her hydrated for the iv, we pretty much let her have whatever she wanted to drink.  We don’t really do juice at home, and chocolate milk is pretty new, and she’s probably only had it a grand total of 5 times before now.  Her tally jumped significantly after these few days.

On our way home, I asked Ellen what she wanted for dinner.  Her answer, “some chocolate milk.”  A few minutes later she said, “Mama, I feel really hungry for juice.”  Cue me explaining that the rules at the hospital are special rules and they aren’t the same as at home rules.

There is so much that happened over the past 60 or so hours, but the bottom line is this:  We met with an attending physician on the epilepsy team and two separate physicians on the neuroimmunology team and all of them think that Ellen does not have Rasmussen’s.  The main impetus for that thought is the fact that several of her seizures over this visit involved both hemispheres of her brain.  It’s not 100%, but that (isolated to one hemisphere) is one of the main markers for Rasmussen’s and it seems this EEG shows that some of her seizures are involving both.  There are a very small number of cases where both sides of the brain are involved, but the chief neuroimmunologist told me that in those cases, the patient is usually very young; younger than Ellen was at the onset of her seizures.  So, if she does have Rasmussen’s, she is a completely isolated case.  The only child of her age to ever present in this way.  That seems like it should be reassuring, but the sample size is so small (around 200 cases of diagnosed Rasmussen’s worldwide) that even though they told us that they don’t think she has it, it is not off the table.

The alternative is also not particularly reassuring.  Our discussion with the attending this morning was that indeed, her seizures are not being controlled by Trileptal (her “regular” medicine.)  We’re going to “max out” the dose (we’re almost there already) and then add a second, and perhaps a third medication, depending on how she responds.  All of our fear about her activity being slowed down and this visit being a bust was assuaged.  She had plenty of seizures, including 20 in an hour this morning that provided a good study for the doctors.  I don’t know what comes after her not responding to those three medications.  I didn’t ask.  It feels scary, but for now we just have to hope that we can find a combination of medications that works for Ellen and go from there.

She is unusual.  Her presentation is unusual.  But for right now our worst case scenario seems to be muted far in the background.  It’s not off the table yet, and what is on the table isn’t exactly awesome, thumbs up, home free, let’s start pricing bouncy houses.  But it’s more information than we had before, and Jbone and I are both feeling confident that we have a good team working on Ellen’s case.  We have a follow up meeting in a couple of weeks, we increased her dosage tonight.  We’ll see what happens.

Quick Update

I am heading over to pay our water bill so we can (hopefully) close on Monday (we found the document that proved that we had bought the extended coverage title insurance–phew!–and then they resolved it anyway.)  Then I’ll pick up Harry and we’ll head in to the hospital.

It appears that they are going to put off the spinal tap, but that it is definitely going to happen.  They have to sedate her (not fully, I don’t think) and they don’t want that to interfere with the EEG study.  So, we’ll be going back soon for that, it appears.  She had bloodwork done this morning and even though we have been hydrating her to within an inch of her life to prepare for it, it still hurt.  I don’t know if it actually hurt or if it is just residual anxiety from the MRI where she got stuck so many times.  Either way, it sounds like it sucked (I wasn’t there.)

John said Ellen mentioned she might want me to stay with her tonight.  So, I’m bringing the pump and some jamjams with me.  John can bottle feed Harry tonight at home if that is what Ellen wants.  We’ll see.

He says she’s having a tougher time today but still seems good.  They had to fiddle around with some of her leads as it appears that some of them weren’t collecting data properly.  Anyhow, that’s all for now.  Must run…

Long Term Monitoring

I’m home for the night.  Harry and I came home and John stayed with Ellen.  I had to walk the dogs and as Harry still nurses overnight it didn’t make sense for me to stay with Ellen (since he would have to stay too.)  I am beat and having a hard time.

The good news is that she is the best little girl.  She had so much fun at rock star day where she played the guitar and the drums and sang “music songs” on the microphone.  We went from there to one of my favorite lunch places near the hospital, Souper Salad.  I told Ellen all about how when she (and Harry) lived in my belly they used to tell me all the time that I had to go to Souper Salad after my doctor’s appointments and have a tuna sandwich.  Sometimes soup too.  Ellen really liked the salad bar and had some popchips and a big plate with many of her favorite things:  tomatoes, black olives, cheese, baby corn, watermelon, mandarin oranges, and pineapple.  And a smoothie and some blueberries that I brought from home.  I had a tuna sandwich (it is really, really not broke so I am not going to try to fix it.)

From there we got all of our stuff together and checked in.  We got to our room pretty quickly, and it didn’t take more than five minutes for our team to start everything up.  She was so brave the whole time.  She really liked the child life specialist (Sam), who showed her the photo diary of the EEG while I consulted with the NP.  Sam had an iPad and she and Ellen played about 40 different games while the leads were placed.  The guy who did it was realllly slow.  He probably took about twice as long as the woman who placed them for Ellen’s ambulatory (take home) 48-hour EEG.  But, she seemed a lot more comfortable at the end of it.  She did not complain at all about the hat being too tight or hurting or anything, where she mentioned it about 100 times last time.

From there we chilled in the room.  Colored with her colorwonder stuff (thanks, ADL!) and colored a big velvet poster from Sam, and played with magnetic paper dolls (also from Sam) and then watched Cars.  She fell asleep around 4:30, and she slept for about 15-20 minutes until the doctors came in to talk to me again.

An ADL friend stopped by and we chatted and soon after she left John and Harry arrived.  We did family band with some instruments from the playroom on our floor and had a pizza party and then Harry and I came home.  Ellen was in great spirits the entire time.  She was bummed that she isn’t able to leave the room, but she was psyched with the cupcake that came with dinner, all the juice we let her have, and all the prizes/presents/new toys.  All in all, she seemed fine.

The bad news is that my chat with the NP did not go particularly well.  She talked about some atypical “white spots” (or maybe “bright spots”?) on Ellen’s MRI, and the fact that her MRI did not look like what we would expect to see in someone having so many seizures.  I get it.  She’s very unusual.  She also broke the news that they want to do a spinal tap on her tomorrow, as well as some extensive lab work.  I found this out when I said something like this to Ellen, “But it won’t hurt!  Nothing that will happen this time will hurt!”  At that, the NP kind of cleared her throat in a way that made me say “Fuuuuuuuucccccckkkk” internally.  Yeah, really wish we could have been given a heads up on this one.

Basically there is a neuroimmunologist that has looked at Ellen’s case that wants to rule something out.  I have no idea what that is, and this is the first we’ve heard of this.  The NP may have shared it with me if there hadn’t been so much else going on at the time.  The whole thing felt really rushed.  They were trying to get the EEG crackalackin and Ellen was needing some of my attention, so I was a little scattered.

So, more scary unknowns.  What the fuck is this that is hurting my child?

A Fine How Do You Do

Today I got an email from our landlord.  He’s so nice.  He really is.

When we moved in, he mentioned that the president of the condo association lives on the other end of our strip (there are four units in each strip, he’s on one end, we’re on the other.)  There are probably 30 or so strips of townhouses in the whole complex, so it’s a biggish job to manage, I would guess.  Vlad had mentioned that he and his wife were very very nice.  Great!

Yesterday I was home and I cleaned out the car in the driveway.  It was such a nice day that I brought out Harry’s jumperoo and put it up near the garage and Ellen sat on the steps with her MobiGo while I cleaned.  I brought out a bunch of stuff and brought most everything in save for a small pile of random things (John’s snowboarding pants, a couple of pairs of gloves, a couple of winter hats.)  They were up near the garage, next to the jumperoo.  It got hectic, and we never brought any of it in last night.

It was so beautiful out yesterday that we spent much of the day with our front sliding doors open.  They look out over a front deck, which looks out over the street.  A woman walked by about midday to get her mail and Roxie and Gertie barked at her.  They barked a few other times too.  They’re dogs.  Sometimes they bark.

The woman looked up at the sliding doors with what seemed to me in the moment to be a pretty sour look.  It was bright sunshine out and dark inside, so she couldn’t see that I was sitting there.

In the email today from Vlad, he (very sweetly, honestly) said he had been talking to the condo association president and the guy told him we left some toys out and that he had had a complaint that our dogs were barking at passersby.  To be fair, both of those things are completely true.  To add context, this entire complex is full of dogs.  I know this because they have been barking at me as I walked by whilst simultaneously attempting to avoid the huge steaming piles of their shit for the last three days.

I thought to myself, “Apparently ‘mr. president’ is a real cowboy.  Gathering complaints already.”  I arrived home with the kids tonight and the condo association president’s wife was outside.  She happens to be the same lady who was scowling up at the window when the dogs barked at her.  My mother taught me that sometimes the most effective tool you can use is kindness.  I called to her cheerily, “Hello!  How are you doing?”  She literally looked away from me before answering in a pouty voice, “Fine.”  As I walked the dogs I noticed (she was still outside) her chatting with one of the (very nice, I met her the other day) ladies that lives in one of the middle units on our strip.  That lady has a dog.  A ginormous Boxer who barks his head off on the reg.

I told John that I bet she’s the kind of person that loves to throw her weight around to feel important.  I also told him that at this juncture she is barking up the wrong tree.  (See what I did there?)

Save for the gloves and jumperoo in the driveway, we’re tidy people who pay our rent/mortgage on time.  We’re actually really friendly and helpful neighbors.  We knew every single family on our old block.  We liked every single family on our old block.  But I am not currently in ego stroking mode.  Pardonnez-moi but the first lady of this condo association can go fuck herself.

I plan to say that over and over in my head as I smile inanely at her for the rest of the time that we live here.  Unless she brings by cookies.  You know I’m a sucker for cookies.

Update

So, we made it!  So much to say, I’ll try to run through it in categories.

The Move–It went really well.  Our movers were amazing.  If anyone ever needs a recommendation for Boston area movers, I can not say enough good things about these guys.  In the morning as the boxes were all packed up, Ellen said, “These people moving our boxes are going to have to be Yeeeeeeaaaaaalllly strong!”  Then, at some point in the day at the new house, as the movers were ferrying boxes this way and that she said, incredulous, “How strong are these guys?”  Pretty funny.  But they did a great job and were super kind and helpful throughout.

New House–There are a lot of things to like about the new house.  The good news is:  The kids have their very own playroom (which is huge…like 12×18.)  Most of their toys fit down there, and it’s like a wonderland.  Kid-safe and full of toys.  What could be better?  I like the washer a lot.  The capacity is better than my old washer, and the cycles are shorter.  Plus the water is hot so I feel like it’s getting clothes cleaner.  We are IN LOVE with the tub.  Between the crappy tankless hot water heater (which cycled through warm/cool/freezing cold water) that could not fill a tub with hot water and the fact that our old tub was miniscule, I took a bath at our old house precisely once.  The kids always bathed in an Ikea tub that Kieu and Alex got for Ellen when she was born (since we didn’t have enough warm water to fill the regular tub.)  But we have lived in the house for just over 60 hours and I have taken two baths already.  Last night I took one with both kids and it was awesome.  The house has about 800 closets.  Our old house had precisely two closets.  Let that sink in for a second.  Two.  They were not large.  Many, many things had no home.  Once we get through all of these boxes, most of our things will have a place, which is great.  In not so stellar news: I don’t love the dryer or the dishwasher.  The top rack in the dishwasher has weird spacing and it doesn’t seem to fit any of our cups/kids stuff.  A lot of stuff flipped over in the first load and I had to wash it by hand anyway.  The dryer just takes a long time.  I washed our duvet on Sunday and I went down there three times to get it, expecting it to be done, and I had to keep resetting it.  We have some (and by some I mean a lot) of babyproofing to do.  I feel like there are hazards everywhere.  People in the condo complex don’t pick up their dog shit.  There are a lot of nice green spaces, but I took the dogs for a long-ish walk on Sunday and explored a bit and there was dog shit everywhere.  Pretty gross.  I went down to the downstairs bathroom this morning to blowdry my hair (so I wouldn’t wake anyone) and there is not one outlet in the whole bathroom.  Strange.  It’s a split level, but our strip (it’s a townhouse) is kind of built into a hill, so the downstairs is partly underground.  Basically, the windows (so, 3 feet up) start at ground level.  And it smells a bit subterranean down there.  It’s not offensive, and I’ll get used to it, but I think that may have been the reason for all of the aggressive Yankee Candling.  It’s got that slightly sweet damp smell.  Basement-y.  Basement-ish.  I had a cousin growing up that lived in a split level and her bedroom was on the first floor and I could always smell this same smell on her.  It feels comfortable, but it doesn’t feel like home yet.  I’m not sure it ever will.  It’s serviceable, but I don’t feel as if I’m home.  I felt that way from the very first day with our old house.  Before we bought it, even.  Obviously, I’ll get over it, and I’ll find another place I love someday, but it’s a little sad.

New Town–Honestly, I think I am having more trouble with the location change than the house change.  We’re just in the next town over, but it’s just a lot different.  Not to belabor the point, but I’m used to walking to things, taking meandering walks, taking runs with Roxie in the nice weather, taking a walk with the kids when we we’re bored.  When we walked, there was a destination in mind since we could get to pretty much anything we could think of.  Besides our complex (which, as I mentioned, is kind of dog-shitty), there are no sidewalks in the immediate vicinity.  To get to the center of town, we would have to walk on a main road with no sidewalk and then up a very big hill.  It’s about a mile straight uphill.  Once there, the center of town is really quaint but not quite usable.  For instance, there is a general store.  Its hours of operation are M-F 9:30am-5pm.  Uh, ok.  There is also a wine shop, whose hours are similar (except it opens later.)  I mean, I don’t want to be picky, but in general I start thinking about having a glass of wine after 5pm.  If I run out for wine, it’s not usually in the early afternoon.  I’m just not that organized.  There is a deli, but, like a mirage, it appears to never be open at all.  So, we’ll be driving everywhere.  Not the end of the world.  I know that most people drive everywhere.  It’s just an adjustment.  We did find a great park just off the center of town.  I took the kids there on Sunday and yesterday afternoon.  It is busy and people were really friendly, and both Ellen and Harry enjoyed it.  So, that’s good.

Kids’ Transition–Surprisingly, it’s going really well so far.  Ellen just seems psyched and she didn’t really get anxious at all.  They have transitioned well to sharing a room, too.  They have woken each other up a few times, but I assume that they will get used to each others’ noises.  Harry is not sleeping well, but I think he might be getting a tooth.  Also, he never sleeps well, so I can’t really blame it on the new setup.  Their room looks great and is pretty much finished.  It’s a nice space.

Ellen--Either her seizure cluster has subsided or the medications are working much better or some combination of the two.  I think it’s a combination.  But, she’s having very few seizures now (less than 10 a day, but more like 4 or 5, and they are mostly short.)  Obviously, that’s good, but I am worried that our hospital stay is going to be a bust.  I really wish we could have scheduled it for the middle of her cluster.  They just would have gotten so much more information about what is going on in her brain.  We went to the library yesterday and chose four movies and two new books.  Miss Chris got her a MobiGo (which is a more age appropriate gaming system that you only need one hand for), which she loves and is excited to bring with her.  Members of my mom’s group sent over about 10 presents for Ellen to open and use while there.  She’s excited about the pizza party (we are going to get pizza for dinner tomorrow night and we have billed it as a ‘pizza party’.)  She had a lot of questions yesterday about who was staying with her overnight (Daddy) and where everyone would sleep (they have beds, it’s like a hotel), but she seems pretty fine with it.  She’s excited about Chuck E. Cheese (we’ll do that on Friday after she is released.)  I think it will ultimately be tough for her to get to sleep both nights.  She’ll be wearing her ‘hat’ (a tight dressing they put over the EEG leads), and for all of her Daddy preferences, she really does best when I’m nearby at night.  But, I’m going to make her a photo book tomorrow morning if I can find the time, and we’ll get through it.

Harry–He’s really cute.

The End.

Moving Day

This is the room where I rocked you

These are the four walls that held us
after we came home
while we drew a map for our new life
with you as our Compass Rose

This is the place where I patted
and shushed
fell asleep standing up
leaning into your crib
my hand heavy on your back

This is the board that creaks

This is where we shared our meals
this is where your small spoon would sit
this is the place where the dogs would lay
with their mouths open

This is the cupboard
where I kept your bowl
your plate
your cup

This is the blue tub that I filled with water
where the bubbles overflowed the sides
and trickled down into this drain

This is the room that we laid in
when your fever was high
where you nursed in the darkness
where I pressed your chest
against my chest
where I held the heels of your feet
in the palm of each warm hand

This is the place where you fell
and split your lip open

These are the stairs that you
first learned to climb
as I held my breath

This is the home that we made for you

This is the day that we will fold it all up
and carry it with us