Monday, February 25, 2008

Inspired by the Academy Awards

Over the weekend I was inspired to throw a small Oscar's party. I wanted to cook food items that were thematically tied to the nominees. Surprisingly, I found enough energy to pull it off. I made a palette cleansing blueberry-lime granita in honor of the blue slushies in JUNO. The main course consisted of a One-Pan Ratatouille in honor of the Academy Award Winning animated film bearing the same name and warm french bread in honor of the loaves of bread in Michael Clayton. Dessert was a shout out to There Will Be Blood with a banana-caramel milkshake. The centerpiece in the middle of the dining room table was scattered with past Academy Award Winning films and several boxes of orange tic-tacs ~ again with a shout out to JUNO.

This year, I felt pretty prepared for the Academy Awards ~ I had seen all nominated films with the exception of No Country for Old Men ~ which I have no interest or intention of watching. Just this past weekend I finally watched Eastern Promises and Michael Clayton. After the results of the Golden Globes were revealed it was pretty obvious who the favorites were going to be at the Oscars. I had already accepted the fact the No Country For Old Men was going to win best picture and probably scoop up a handful of the coveted gold statues, but I had my favorites for other categories.

After seeing Viggo Mortensen's incredible performance as a Russian mobster in Eastern Promises he became my favorite for Best Actor. I was hoping that there would be a big upset with the Best Actress going to Ellen Page (JUNO). A girl can dream, right? I would have loved to see Cate Blanchett win in the supporting actress category ~ I felt very strongly against the fact that Tilda Swinton was nominated also. So ~ I was disappointed with several of the winners that were chosen and I was elated with a few wins ~ like Best Musical Score (Atonement) ~ Song (Slowly Falling from ONCE), Writing for Original Screenplay (JUNO) ~ Best Animated Film (Ratatouille) Best Actor (Daniel Day-Lewis) ~ and kudos to the Bourne Ultimatum for picking up three Oscars!

There are still some Oscar nominated films for actor/actress performances that I still want to watch ~ I am hoping for more up lifting/thought provoking films for next year and less blood and violence.

Friday, February 22, 2008

Solo Drive

Funny how I type in 'solo' into Google images and it brings up Han Solo ~ I just couldn't resist ~ I am such a child of the 80's! I digress ~ I have been plagued with insomnia the past couple of nights ~ I am blaming the lunar eclipse. So, since I am currently on disability and busy recovering and resting I rolled out of bed around 10:30 this morning. After grabbing a strong mug of coffee I sat down at the kitchen table and put down on paper the long 'to do list' I had been compiling in my mind while tossing and turning all night long. Ahh ~ instant relief to have dumped all that data.

I made several phone calls, crossed off at least half the items on my list. I looked out the window at the sunshine and thought for the first time in three weeks that things are beginning to get back to 'normal'. On a whim, I called to make a hair cut appointment and was elated to secure an appointment 2 hours after I made the call. My first solo driving outing was about to commence.

You see ~ my recovery instructions have been pretty vague. Don't do anything that hurts ~ duh ~ and you can't go back to work until 3 months after your surgery. OK ~ well what about when can I drive? I answered that question this afternoon ~ about three weeks. Backing out of the driveway almost felt like when you are a teenager and you are giddy with the idea of borrowing your parents car to drive around the block! To my surprise, it didn't exactly hurt my back to drive, but I did feel a little tired and slow to react to my surroundings.

So ~ mission accomplished ~ I re-established faith in myself today that I can drive ~ even if it's just a couple of miles down the road. Having that freedom is priceless to me since I have pretty much had to be chauffeured for the past 3 weeks. Also ~ as a bonus had my hair cut for the first time since December. Nothing drastic yet ~ at least not until I am officially cleared by TCI of the potential for brain surgery any time in the near future.

Tuesday, February 19, 2008

One and Two Weeks Post Op

I have had many a request for pictures of my surgery site ~ so here they are! I have posted the photo towards the bottom of the post for those of you who are squeamish ~ I promise ~ all things considered the pics aren't bad at all! My question is how long is it going to take to wash off the pen mark they made on my back???

Just in case you are not quite sure what you are looking at, the photos are of my mid and lower back. Even after all the links and lengthy info regarding the surgery many of you still thought that the surgery site was in my neck ~ true story! I am amazed how the detethering has alleviated almost all of my symptoms ~ and I am still in awe of the brilliance of the TCI docs. My next step is figuring out how to tactfully write a letter to my four local neuro-surgeons to let them know the outcome of my surgery. Mostly I want to educate them on the correlation between the tethered spine and the brain so that other Chiarians like me might avoid brain surgery!

I am still trying to ease into the whole 'recovery ' mode of resting and relaxing. I am off all pain/muscle relaxant meds and yet every night I am having these uber intense dreams with intricate and complex plots. I wake up exhausted from my dream journeys. At first I attributed the dreams to the Morphine ~ but now that I am not taking it anymore I am perplexed. Maybe since my brain tail has plenty of CSF it's going into overdrive ~ anyone out there have similar experiences?

Wednesday, February 13, 2008

Walk By Faith

I was under the impression that after surgery the path would be clear ~ I was so wrong. Just a little reminder to me that Christ is in charge of my life and not me. I couldn't be more confused ~ it may be because of the haze of morphine ~ but still ~ what am I supposed to be doing right now?

TCI told me yesterday that I should expect to be out of work for a total of THREE MONTHS! Are you kidding me? I am already frustrated to be trapped inside of a weak body ~ my mind getting more clear every day and I have delusions of grandour of me running again ~ just going to have to hold onto that dream for a while. Meanwhile ~ I have to keep reminding myself that I have to continue to walk by faith and my path will be revealed.

Walk By Faith ~ Jeremy Camp

Will I believe you when you say
Your hand will guide my every way
Will I receive the words You say
Every moment of every day

Well I will walk by faith
Even when I cannot see
because this broken road
Prepares Your will for me

Help me to RID my endless fears
You've been so faithful for all my years
With the one breath You make me new
Your grace covers all I do

yeah, yeah , yeah, yeah, ya

well i will walk by faith
even when i cannot see
because this broken road
prepares your will for me

Well I'm broken- but I still see Your face
Well You've spoken- pouring Your words of grace

Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me
Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me

Hallelujah, hallelu

I will walk by faith, I will walk by faith,
I will walk by faith
I will walk by faith, I will walk by faith,
I will walk by faith
I will walk by faith, I will walk by faith,
I will walk by faith
I will walk by faith
I will walk,I will walk
I will walk, I will walk by faith

This broken road bears your will for me ~

Saturday, February 9, 2008


I am finding myself shaking my head from time to time during the day ~ where am I? Did I really just have spinal detethering surgery a little over a week ago? Did the Giants really win the Super Bowl? Maybe it's the effect of Morphine and muscle relaxants that are warping my mind.

The first couple of days after surgery were really tough ~ but sage advice from fellow Chiarians who have been detethering ~ the more you move the better you will feel ~ proved to be absolutely true. I am really looking forward to getting my stitches removed tomorrow morning ~ I am giddy with the idea of taking a shower on Wednesday, February 13th ~ maybe that will help me feel more human and grounded.

I may be pushing my luck ~ and I am known to do that from time to time ~ but today is my first day without morphine. I am hoping I can substitute Tylenol or Advil and get the same relative pain relief.

I feel like I am in this weird time warp vortex right now. I still have brain decompression surgery for March 7th on the calendar. I am supposed to be in Long Island a couple of days before surgery for MRI's, doc appointments and invasive cervical traction ~ sounds like an awesome vacation ~ right?!? But, wait, Dr. M told me to wait three or four months and let's see what happens. What do I do with that information? Can I have that in writing!! I fear that I will be forced to go ahead with the next surgery even though I might not need it.

My plan is to wait another week and then call TCI and see what my next step should be. So far, I haven't had one Chiari symptom since my surgery ~ I believe in miracles ~ If my brain tail decides to crawl back up into it's cranial compartment this could be the biggest miracle of my lifetime!

Thursday, February 7, 2008

All Things Work Together For Good

So ~ last night I got to sleep in my own house ~ albeit on the Futon and not my bed ~ still slept like a baby all night long! It feels great being home and almost a week post-op. John washed my super dirty hair last night ~ feel so much more human! Still can't take a real shower until Feb 13th. Getting my stitches out on Feb 11th.

The drive home was pretty uneventful and relatively quick. I was pretty drugged up with pain killers and muscle relaxants which made the ride bearable. I don't really know what to do with myself now. I don't do the whole rest and relaxation thing very well. I am exhausted tonight ~ missed my afternoon nap ~ hoping for an early bedtime.

I don't want to get my hopes up too much, but seriously, I haven't had any headaches since surgery ~ my neck and shoulders don't feel as tense ~ my neck looks longer ~ could I be cured just by one surgery??? I will give it a couple of weeks and hope to get off the pain meds before completely weighing in on how different I feel.

Tuesday, February 5, 2008

Pain Management and Hoping to be Discharged Today

Well ~ the word around here is that I am going to be discharged today! We will probably bunk at the Variety House tonight and head on home on Wednesday so that I am sure I can manage my pain.

They took the pain pump away yesterday ~ what a difference it had made. Nice not to be hooked up to anything anymore, but I am missing the constant flow of pain medication.  So ~ I am using the breathing techniques I learned in lamaze classes ~ taking baby steps in the hospital halls ~ drinking lots of fluids.  

I am looking forward to going home soon ~ will be nice to have all the creature comforts of home.  I feel so relieved that the girls have been well taken care of by my Mom ~ she has kept them busy with activities and has been helping them to understand that I will not be up to full mommy strength for a while.  (Holy heat ~ the hospital zamboni went by my room a second time!)

Back to Mom ~ as an adult, it's hard to admit that I still need my Mom there for support ~ need her to hold my hand when I am nervous in the pre-op holding room ~ you get the picture. Just having Mom around makes me feel better.  The problem with that this time is that I didn't realize my need until it was too late for her to drove down to Long Island. So Mom ~ I definately want you to be here with me for the next surgery.

So ~ here we sit ~ John and I ~ waiting for the surgeons to make their rounds ~ the ticker tape parade will be in full swing by 11 am this morning in Manhattan.  Thanks again to everyone for your prayers and support ~ they have really meant a lot to me and have helped me to push forward and through the pain.  Especially thanks to John ~ you are my Knight in shining armor ~ true story ~ Thanks for keeping me hydrated and waiting on me hand and foot. Love you 

Monday, February 4, 2008

Giant Steps

(John:) I can't count how many times I have read or heard that headline, "Giant Steps." Never before has it had more meaning. Yesterday, Sunday, was quite a day. After a pretty awful Saturday, Lace really turned the corner Sunday morning. I arrived at the hospital around 10 a.m. and she was already out of bed and sitting up in a chair. Shortly after that, she got up and took her first walk down the hall of the hospital. By the end of the day, she had been up several times and done a good half dozen laps around the 4th floor of the hospital. 

After lunch, I departed to pick up Lacie's sister Sarah from Brooklyn so she could pay Lacie a brief visit during the afternoon (see photo). 

Sunday night we watched the big game. SO HOW 'BOUT THEM GIANTS!!! Amazing game. That pass from Manning to Tyree was incredible. Lace had forecasted all along the Giants were going to win the Super Bowl. Now that her brain tail is going to start shrinking, her prognostication days may be over, but it was quite a run while it lasted. A lot of the Giants young players have shown a lot of promise so maybe this run will last a while longer.

Today has born more good news. A PA from her neurosurgeon's office dropped by this morning and all is looking good. Her surgical drain was removed and she should have her IV removed later today as well. Surgical scar is healing well. The PA said there is no reason we shouldn't expect to be discharged tomorrow by noon. We'll probably stay at least one extra night at the Variety House across the street to make sure everything continues to heal okay. So if all goes to plan, we'll be returning home to the capital district maybe Wednesday, probably Thursday.

That's about it from here. Lacie is well enough to do her own postings now, so this will be my last post. It's been fun. Keep checking daily for Lacie's updates. In closing, I'd like to thank everyone – family, friends, co-workers and our church community – for all your support. Special thanks to Lacie's mom for all her help with taking care of and supporting the kids while we were away. It has been such a relief to know they are in her loving care. Thanks be to God for all of you. John

Sunday, February 3, 2008

Speed Bump From Hell

What was I thinking when I referred to this spinal surgery as a 'speed bump'.  Today is day three after surgery and I have been either sitting up in a chair or walking through the hospital halls ~ IV in tow.  Let me go back a couple of days ~ I will warn you now ~ I just got a full dose of morphine so I am sure that half of my post will make no sense at all!

On Friday, February 1st, I awoke at 5am to get dressed and head over to the Hospital.  I was tossing and turning all night with a horrible migraine headache.  By the time I had put all of my belongings in a plastic sack and put on the oh so fashionable hospital gowns, I was in tears from my headache. I could barely even open my eyes the pain was so bad. When they came to get me for surgery it was 6:45am.  They parked me outside of the OR while they got all prepared ~ it was noisy and I couldn't keep the florescent lights out of my eyes. AND they didn't give me any type of sedative before going into the OR.  

When they were ready for me, they wheeled my right into the OR ~ got the IV in and then since I was in a lot of pain already from the headache they decided to go ahead and knock me out. I remember breathing in the anesthesia and thinking "It's not working ~ I'm not falling asleep!" Next thing I remembered was waking up in the recover room and thinking ~ "My headache is completely gone and for the first time in my life I was totally nausea free!"

The scoop on the results of my surgery ~ Dr. M said that I was tethered really tight ~ like a bow.  He also believes that my tethered cord was the cause of my Chiari. Then he said something that totally blew my away.  He said that he wanted to wait 3-4 months and see what happens. He was pretty certain that my herniation would shrink a lot now.  WOW ~ SERIOUSLY!! So ~ now I might be good to go in a couple of months and then maybe skip the whole brain surgery thing would be awesome! 

So you are probably wondering ~ how's the pain ~ hurts bad ~ really bad ~ but I've got some good drugs to combat the pain. I have muscles in my back that I never knew I had! I am going to sign off for now ~ morphine is kicking in and it's getting harder to type. Thanks so much for all of your comments ~ John has been reading them to me when he comes to visit me. Keep the prayers coming for healing and less pain.

Two Days In; and the Request

Wow. Tough blog to start. Hi, I'm Lacie's friend Erica. She's written about me, I've blogged about her a few times. I wanted to tell you all I hacked in to Little Lacie's site, inciting marvel and admiration for my sleek and felonious computer skills. Truth is, Little Lace gave me Guest Blogger rights so I could entertain you while she's laying around drinking water and eating rolls all day.

I can't tell you all how thankful I am to God that Little Lacie of the Enormous Brain has gotten through the first of her three procedures. I can't tell you how thankful I am for this medium so that John can just type updates, load 'em in, and - magic - we all know how our friend is doing.

We have all been privileged to read and be part of this tiny little woman's incredible journey. Out of her generosity, and let's face it, her need to make sense of this whole process, she let us in. I've known her for, I don't know, maybe 8 years and the way she has carried herself throughout has been an inspiration to me. Me, I'm too big a baby. I recently experienced a debilitating karaoke injury (I will write about this on my own site later) and do nothing but hobble around wincing at the pain in my calf. I have considered going to the doctor to try to get some oxycotin for the pain. Not sure if it's gonna fly.

Today's request/plea though is this: I want us to buy Lacie some fun wigs. She has resoundingly approved of this idea and fully intends to wear whatever we buy her. We can get some lovely things here at a very reasonable price, or you can be more conservative here, but slightly more expensive. While I may look for something in a Scully fashion, I might decide to pander to the extreme geek inside of Lacie and get The Matrix Twins Wig. :) I even considered a skull cap so she could pretend to be Gollum, but didn't think that would be very comfortable.

Here's what I would like you to do: if you want in, if you want to in some small way, help support this beautiful woman who has inspired and moved us, email me at I will coordinate the types of wigs so there is no duplication, tell you where to ship them to make sure they get to Lacie so she can smile and feel your love. If you can't afford a wig, which is cool, email me and I'll collect cards, letters, emails, and love for her and deliver them in a happy package to her door.

Cards and words of encouragement for John would be a great idea too. I know what it's like to have a spouse in the hospital. I know what its like to manage the load at home, caring for the kids, working, rushing to the hospital, sitting by your loved one's side, and worrying all the time and trying not to show it.

Let's show Lacie and her family how much she has touched our lives, while she Lives Loves and Laughs.

Saturday, February 2, 2008

The Day After

The day after is supposed to be the toughest day, and it sure was. Lacie told me she wanted some time to rest up in the morning so I arrived at the hospital around noon to join her for lunch. Unfortunately, she was not very hungry. She's been having bouts of nausea off and on all day. She had a little bit of a roll with some water and that was about it. After that we watched some of a movie while we tried to ignore the family next to us who had been making a ruckus since they arrived. The woman seems to have been in and out of treatment for some time and the daughter was showing signs of being fed up with it all. Lots of complaining to the nurses and so forth. They finally got an early discharge around 3:00 and the tension level has been much better since!

24 hours after the surgery Lacie was supposed to start making an effort to sit up and walk around. She was able to sit up in bed and around 3:30 she got out of bed and took a few assisted steps over to a chair where she sat for a couple hours. So this was some good progress. I had hoped she might walk a bit more but the nausea set in again and they had to add some drips to her IV to get her blood pressure back up again. Around 6:30 she moved back over to the bed and is now resting. She's been pretty pooped all day and the movement took a lot out of her. She did not eat any dinner at all. I bought her a Coke which she did drink most of.

So that's about all the news for today. Sarah is supposed to visit from Brooklyn tomorrow. I hope she is up for it. 

Please pray for Lacie that:
1) She will be rested and have more energy tomorrow
2) She will walk more tomorrow
3) Her nausea will have passed

And what the heck, you can also pray that the NY Giants get a good nights sleep and play well tomorrow in the Super Bowl!

Thanks be to God for today's blessings.

Go Giants!!!

Friday, February 1, 2008

In a White Room, with long curtains, near the station...

Isn't that how the lyrics go (or something like that)? So she's in her room. She got moved upstairs around 5:30 and is now somewhat settled in and feeling much better than earlier. Sluggish, but she has regained some personality, which is encouraging. Before I forget, the room information is:

Room 474
North Shore University Hospital
300 Community Dr.
Manhasset, NY

Her allergies have been driving her nuts this week and she's specifically asked for everyone to NOT send flowers! (I hear she's really into Jeeps and the Giants these days ~ oh, wait that's me, sorry!)

So she's feeling pretty decent all considered. Resting comfortably, morphine clicker firmly in hand! Although she's not using it as much as she could, which is a good sign.

Interesting news, Dr. Milhorat of TCI told her after the surgery that there was enough evidence of strong/tense tethering that he thinks it may now be in her best interest to wait 3-4 months to re-evaluate before jumping into the next surgery. Dr. Milhorat and Dr. Bolognese performed the surgery together. He is also convinced that her tethered cord caused her chiari. Although this kind of messes up the master plan, it is a good sign that she may require less surgery next time around, or maybe no surgery at all if she is really fortunate. This is purely hopeful speculation, but a possibility nonetheless. Perhaps we got some bonus answered prayers today?!?

Thank God for all these blessings we have received. And thank you all again for all your thoughts and prayers. I'm closing it out for tonight. I'll post again sometime tomorrow late afternoon or evening with an update.

The Dr. B Report

So I hung around for about an hour before going to lunch, hoping to catch Dr. Bolognese with his report on Lacie. Of course, immediately after I departed he showed up! When I returned from lunch downstairs, they directed me up to the 9th floor neuro dept to speak with him.

The report was very good. The surgery went to plan with no complications or surprises. He said there was indeed a "fair amount" of tethering that was easily detectible once they had her opened up. He mentioned that her dura was a little thinner than normal, but not nearly as thin as some other patients he has seen with EDS. Thin, delicate tissue is a common side effect of EDS and it can create complications with the healing process, such as cerebral spinal fluid leaks in this case. The dura, by the way, is the thin membrane that encases the spinal cord, allowing the spinal fluid to flow from the brain on down and back up again. So, nothing unexpected, and I think maybe even additional good news in that her dura is not as thin as it could have been.

Hoping to see her in her room in the next hour or two. I'll post another update this evening when I get her room number and so forth as I know some of you have asked.

Out of the Darkness

1 p.m. Friday - All is well! Just got back from seeing Lacie for 5 mins. at the Surgical ICU. This is where they put all the surgical patients to recover immediately after surgery so they can keep a close watch on them. They said she'll be in there for about 4 hours before being given a room assignment. She was still fairly groggy and very puffy. I'm guessing she may have had a bit of an allergic reaction to something they gave her. They said yesterday that they are now giving patients botox to help with the healing process but it sometimes can cause a mild allergic reaction. I was supposed to see her surgeon for an update before seeing her, but that didn't happen, so I really don't know much other than she looks okay and all must be well. They had a LOT of patients in surgery this morning so I can imagine they are very busy. 

So that's the update. Thank you everyone this morning for your continued thoughts, prayers and well wishes. And with that, I'm getting some lunch!

Cuts like a knife

Hi. John (the husband) here. Typing from the surgical waiting room. It's 7:37 a.m. and her tethered cord surgery was supposed to start at 7:30, so I imagine she's under the knife right about now. I've said my prayers (a few times!) and now it is time to sit and wait. "Hunker down" as Lace would say. Surgery is expected to take around 4 hours so I figured I'd have plenty of time for my first blog post. She hasn't posted in a few days, so I'll give you the recap of what we've been up to in the meantime:

Wednesday: We departed the Albany area around 10 a.m. after packing, gassing up and taking care of a few loose strings at my office. Very smooth trip to/through NYC. We made it to Brooklyn where Lacie's sister lives in about 3 hours, which is about as good as it gets. We had a little time in the afternoon for some R&R before her sister and brother-in-law got home for the evening. Lacie spent a little time with her nephew Will. I took a nice run through Brooklyn just before dark. We had a very nice dinner at their home and turned in early. Lacie had a pretty bad day fighting her cold and was pretty well shot by 8:30 or 9.

Thursday: We got up at 6 a.m. (argh!) to get over to Long Island for the first of a series of pre-op appointments throughout the day. First to the North Shore University Hospital for radiology (MRIs). Next to another dept there for Pre-Admission Screening. Had lunch at the hospital. They have a really nice cafe and cafeteria. We couldn't believe all the fresh and healthy options. Next to The Chiari Institute for 1 p.m. neurology exam and 3 p.m. neurosurgeon appt. We waited from about 2 p.m. until 6:30 before the neurosurgeon saw us. Apparently one of the surgeons was out sick and the one who was in the office was doing double duty all day. Long wait. My butt hurts just thinking back about it! Thank God for reruns of Friends!

Thursday night: We checked in at the Variety House across the street from the hospital around 7:45. We almost missed our reservation. There was a miscommunication and the owner thought we were going to be there "at 4" not "after 4." And with the delay at TCI, we were much later than expected, regardless. Fortunately, he was still holding our room. We unloaded, ordered some Italian delivery, and settled in to watch the premiere of "Lost" on TV, much anticipated by both of us, but especially Lacie. I don't know that we were really able to fully enjoy it due to the circumstances, but it was good to take our mind off things. We can watch it again later on the DVR and analyze all the details of the show we missed.
Get this(!): Chiari "spokesperson" Julie Carter, who was featured this fall on ABC's Extreme Home Makeover, is staying at the Variety House with us!!! We came upstairs to the living room area and there she was, and we were like... "don't we know you from somewhere?" It was very surreal initially, but she is so down to earth about everything and it was an incredible experience for us to sit down with her for a little while and share our stories. She is an amazing and kind person. She has been up here to TCI and this hospital 11 times now to assist others in their Chiari surgical journeys, which is also what she is doing now. I thought it was fantastic to see how she has taken her gift from ABC and continued to ratchet up her efforts after the show was done. She also told us she has met all the most renowned Chiari surgeons in the country at one time or another, including some conference they hold every year and she said Dr. Bolognese is clearly the leader in the Chiari community and that we are in the best hands anywhere. It was so great to hear that.

So. Here we are. Tough morning. We were up at 5 a.m. Lacie had a raging headache with the low pressure coming in. She said it was about an 8 out of 10 on the pain scale. She cried a little before going in. Not sure if it was the pain or fear. Maybe both. I'm glad she let go a bit. She's such a fighter but maybe it will help her relax a little to release some. That's about all the news. I'll try to post again sometime after lunch once she is out of surgery and I've had some time with her. There is open wireless throughout the hospital, making this pretty easy.

Thanks be to God for getting us this far.