Woah

I'm so embarrassed!  I am shocked that I have not updated here in so long.  I sort of put this blog on the back burner while other things took over our life and felt slightly guilty but nothing more.  Until I started getting the emails.  Thank you all for your concern- I guess I never realized how many people followed our lives.  Just to reassure you all; Hazel is OK!  In fact, she is more than OK.  She is totally nutso.  I think that since she started walking last month, our energy has been sapped.  I find myself napping when she naps almost every morning.  Part of this is because of the multiple sclerosis making me feel like I'm constantly operating on two hours of sleep.  Part of it is because Hazel is so busy that it takes every ounce of strength to keep up with her.  Luckily she is still a big sleeper, as she has always been.  She still takes a three hour nap in the morning, then a two hour nap in the afternoon, and continues to sleep a solid eleven to twelve hours at night.  When she is awake though...look out!  She is almost running now, and it looks so funny because she is still such a shrimpy little thing.  She just hit 21 pounds and is about 28 inches tall.  Little and chunky!  Perfect!  

She is also a little jet setter.  She has been to DC now twice, just this month; once for a quick family get away, and once to visit friends and do the MS Walk in Reston, VA.  She also did the Newburyport MS Walk up here in Massachusetts where we raised a whopping $3,800.00 for the Central Mass MS Society!  She is very proud of herself.

Hazel also survived her first stomach flu, and survived having the TV as a babysitter for two straight days while mama tried to survive the stomach flu.  We all got through it.  Jamie also managed to get through the most hellish project deadline at work that had him loving at his office for two weeks.  He billed 360 hours in three and a half weeks, and is long overdue for more of a break.  So am I.  

Our other big news is that Hazel had her post-op follow-up with her doctor at Children's Hospital and we got the best news we could hope for; she is doing great.  She has been eating and swallowing so well and has only gagged/chocked/regurgitated food on a few occasions.  She looks so healthy and happy, and there are no plans to do another esophageal dilatation anytime soon.  For now, they don't even want to see her for six more months!  It's just what we have been wanting to hear since November.  It feels so good.

So, life has been hectic.  I swear I have a TON of pictures to upload as soon as I have the time, but this child turned from a baby into a toddler overnight and I can't turn my back on her and her fiery emotions for a second.  She is talking, too.  I think she has about 7-10 words now, and has even used two words strung together to say, "Hi, dada."  That is probably the most heart warming thing you have ever heard, in that silly, croaky little voice.  She takes my cell phone and puts it to her ear and has whole conversations that sound like, "HHHHIIiiiiiiiii, dada!  Hi, dada!  Hi!  HHHiiiiiiieeeeeee! *insert some bubbly giggling as if dada just said something really funny*"  It's pretty hilarious.  She also "woofs" at every animal she sees, points and demands "THAT." at every single object, and screams, "NAI NAI NAI!" for "no no no".  Also, right before she does something that she knows I don't want her to do, like feed her food to the dogs, she looks at me with a very serious face and very earnestly shakes her head "no".  As if to tell me, "This is something very bad that I'm about to do."  It's damn near impossible not to laugh.  Every day she has a new dance, she is absolutely obsessed with her Legos and will sit in my lap, focused as hell, and play with them for a whole hour.  She has developed picky toddler eating habits overnight and now isn't really interested in anything but berries and cheese with the occasional spinach-artichoke nugget or tofu cube.  She also, as all toddlers seem to do, has developed a fine crust over her face, hands and throughout her hair.  She always seems to be dirty from head to toe.  She is just as opinionated, stubborn, funny, happy, bright, healthy, smart, silly, flirtatious, outgoing, laid-back, adaptable, flexible, curious, interested, silly, and adorable as she has ever been.  You won't believe how much she has grown up, if I ever can get these pictures up...

Thank you all for your concern, and for continuing to check in on us.  We have been out and about, seeing friends, happy as Ipswich clams and looking forward to the nice weather hitting our little corner of paradise!  Stay tuned.

Hi there friends,

As most of you probably know, I was diagnosed with multiple sclerosis back in September, when Hazel was just six months old (though my neurologists think that I have had it for much longer). It was a very difficult time for us, as the future is so uncertain with this disease.  It is easy to imagine all sorts of terrifying scenarios.  I have been on daily injections of the disease modifying drug Copaxone since my diagnosis, as well as taking advantage of many complimentary and alternative treatments.  I'm glad to say that I am in remission right now, but the next flare always is looming on the horizon.  At some point you just have to stop thinking about what the future could possibly hold and start to take action.  I'm still scared for the future, but I'm very hopeful that the cure is right around the corner.  Research is ongoing, and the past decade has seen amazing advances in treatment of the disease.  The MS of today is not the MS of fifteen years ago. 

So, that said, I figured it had been a while since I hit you all up for money and you were probably wondering what I've been doing with myself.  On April 4th, I'm leading a team in the MS Walk in Newburyport, Massachusetts.  Please help by making a donation - large or small - to create a world free of MS. Or, why not join me on the day of the walk?  Become a walker, and as teammates we can work together to raise the funds to make a difference.  Whatever you can give will help! I greatly appreciate your support and will keep you posted on my progress.

Click here to make a secure, online donation on my personal page or to join me, Jamie and Hazel on the day of the walk in beautiful Newburyport! 

Thank you!

National MS Society

Central New England Chapter

1-800-344-4867

http://www.msnewengland.org/

Working

I am plugging away at getting back to blogging! I have a half-ton of holiday pictures that I have to crop myself out of and de-red eye before I post them. I know it has been centuries since I updated here, but here is an abridged version of our holiday. Tune in later for details!

Langford Christmas Swap in Maine with a lot of "I'm not drunk! You're drunk!". We look forward to this Yankee Swap every year, and can't wait for the long standing family tradition of making the legal-to-drive-but-not-legal-to-drink kids drive us home at the end of the night.

Hazel's scary encounter with a giant stuffed giraffe on Christmas morning!

Chaotic Christmas Eve with Hazel's four cousins, Annabelle, Cecelia, Owen and Lorna- all under the age of two! Holy moley.

Photo-op with Santa in a bar in Jamaica Plain! (Yes, we took Hazel to a bar in Boston on her first Christmas. Meet my family.)

Donabed Christmas party where Hazel's every move was shadowed by a gaggle of tween cousins.

Christmas morning drive to Vermont with a car full of dogs and babies.

Christmas weekend with Grammy and Grampy trying ice cream for the first time, playing with her fifth cousin Oliver (also under 2!), opening lots of presents, and getting serenaded by the uncles.

A tandem Christening.

A double ear infection and blizzard that shut down our New Years Eve plans with friends in Wilbraham, Massachusetts, birthplace of Friendly's Restaurant.

Mama's emotional breakdown and subsequent four day silent yoga and meditation retreat at an ashram in the Berkshires.

Now we're back and trying to gain the upper-hand on life again! Hazel is still having a hard time swallowing certain foods, and we are still being followed by her surgeon. We will be for a long time. The new year promises to offer her some nutrition and speech/swallow therapy. I have been having some pretty annoying vertigo from my multiple sclerosis, and a three week head cold. So life has been going on... While we were happy to see certain events of 2008 go, I was also sad to see the year that Hazel was born blow right through. She is almost a year old, and I'm having a hard time watching my baby go! I had always heard how terrible being a mother can be; oh the sacrifice! Oh the loss of identity! Oh the lack of independence! Well, none of that bothered me in the slightest. I was so scared for motherhood, having spent my life internalizing these negative messages and instead found myself one of the luckiest women in the world. I know I'm a good mama (despite having my baby in a bar on her first Christmas) because I love it so much and was one of the lucky women who fell deeply, unreasonably in love with her the moment I saw her! Being Hazel's mother is a thousand times over the most incredible adventure and blessing I ever could have received. I'm so fortunate that she chose me to be her mama. I can't say it enough, and I don't know that anything I could say could ever communicate what I feel. I just spend every moment trying to make Hazel feel the love that we have for her. The world would be such a dark place without her. I only wish that I had not listened to the ugly, negative voices around me and had decided to bring babies into my family earlier. I think that because of my age, and because of multiple sclerosis, there will only be time for one more. Oh! But the world could use a thousand more Hazels!

Medical Updates for Everyone!

As you can imagine, I'm sure, this has been a pretty wild week.  We are still trying to process everything that we went through while trying to get back into real life.  Jamie and I have been working hard to get the word out about the dangers of button batteries with the help of the media relations folks at Children's Hospital and the Ipswich Birth to Three Center.  We are going to be drafting letters to Parents and Parenting magazines, the Boston Globe and some other local papers.  We also may be meeting with our state representative and we certainly aren't going to let it drop with the original hospital that didn't x-ray Hazel or believe us when she was coughing up blood.  But that's all I'm going to say about that craziness...

While Hazel was in the hospital, I had my first appointment with the Partners Multiple Sclerosis Center at Brigham and Women's Hospital.  My doctor there confirmed the diagnosis of MS, as expected.  She also said that she believes that I have had it for quite some time as there are several "black holes" on the MRI of my brain meaning areas of dead tissue.  She pointed out all of the lesions in my brain but had a hard time determining which ones were active because of the contrast dye being administered at the wrong time when I had my scan.  She thinks that the brain lesions happen to be in areas that don't effect my every day functioning so that I may not have noticed any symptoms until I developed this most recent lesion in my cervical spine.  The lesion on my spinal cord has caused all of the troubles that brought me to the doctor last September, and seems to cause the majority of my perceptual symptoms.  MS is really aggravated by stress and lack of sleep, and when Hazel was in ICU I had a couple of days of pretty bad vertigo, but after some rest it went away.  Symptoms that come and go like that are called pseudoexaserbations, and are not true flares.  All of this together can explain my pretty extreme fatigue over the last few years.  Sometimes in the morning my muscles don't even work.  Sometimes it takes all my strength and determination to stand up.  

So, that's that.  I'm going to be going down to Boston every six months for a brain, cervical spine and thoracic spine MRI and to meet with my new doctor.  She also thinks that the regimen of Copaxone injections, alternative therapies (acupuncture, cupping, chiropractic, massage, cranio-sacral therapy, yoga) and supplements (turmeric oil, vitamin D, evening primrose oil, and milk thistle) is good the way it is.  I'm really looking forward to my three-hour MRI.  I bet it's going to be just delightful.

Hazel came home from the hospital no worse for the wear herself.  She has this raging addiction to morphine, so we have been working on that at home with a very detailed plan from the pain management team at Children's Hospital.  We are doing an excruciatingly slow tapper off of Ativan, then we start chipping away at her methodone, and by Christmas we should have a totally drug-free baby!  Last Wednesday we met with Hazel's surgeon at Children's who will be providing her with the follow-up care as long as it is needed.  Because she has been taking bottles and fine purees so well, he said that we could start on some finger foods.  I was so excited because making Hazel's food is something I love doing, and introducing her to table foods had been so much fun before this all started.  

When we got home that afternoon, I put Hazel in her booster and put some Cheerios on her tray while I made some curried potato and peas for her.  When I looked over at her, her eyes were watering like crazy and she was having a hard time swallowing.  I took the Cheerios away thinking that maybe they were too dry or big to start with.  I cut up some really soft pears into tiny bits to give her next, and she shoved them in her mouth.   A moment later, I heard a loud gurgling high in her throat and saw her choking.  Everything that happened over the last month came rushing back; watching her stop breathing, coughing up blood, the wheezing and strider, breathing and swallowing problems.  I ripped her out of her seat so fast and threw her over my shoulder, whacking her on the back.  She coughed up a bunch of saliva, Cheerios and pear bits.  It had never reached her stomach.  

I called her surgeon and he told me to stop feeding her, and that he wanted her to come in for another barium swallow study as soon as possible.  Clearly there is a narrowing of her esophagus, likely due to scar tissue.  It's frustrating to take a step back, but I keep reminding myself that it isn't life threatening now and that Hazel is going to be okay.  We may have a lot of doctors appointments, a lot of tests, a lot of procedures over the next few years, but this is not going to kill her.  This last incident also made me realize how close to the surface my trauma still is, too.  I need to find a way to deal with this.  Soon.  We were ripped from the ICU into the middle of Christmas madness and it's so easy to just pretend to move on with life.  I just can't freak out every time Hazel coughs.  It isn't fair to any of us.

On a positive note, Jamie is still healthy!  He better stay that way, too.

Harvest Day at the Farm & and MS Update

OK, so now that I have the camera-computer thing all figured out, it's time that I started to catch up on picture posting. Despite the fact that I have not been posting regularly does not mean that life has come to a standstill here. We have, as usual, been busy with friends and family, taking Hazel out and showing her the world.

For those wanting an update on my MS, there isn't really much to say. I started my daily Copaxone injections a couple of weeks ago. I really don't enjoy them at all, as they burn badly for about half an hour after the injection, and they leave these welts and bruises. I have to rotate injection sites, so I'm covered with the welts and have to keep track of where my last injection was so that I don't inject to close to it. It's kind of a pain. But the reason I chose this drug instead of one of the other three is because Copaxone has no side effects other than the injection site stuff. That allows me to maintain a fairly normal life, other than sneaking off to inject every night after Hazel goes to bed and watching the evening news with an ice pack. Oh, and the big ugly bright red sharps container that now lives on my counter with the big orange BIOHAZARD sticker on it. It does not go with the decor.

I will have to do these injections for the rest of my life, or until a better treatment comes along. The drugs don't make me "feel" any better, or affect my symptoms, or cure the MS. What they do is modify my immune system in order to extend remission time. Remission in MS is not "true" remission because demylenation is still occurring, and I still experience symptoms and exacerbations of those symptoms, brought on by stress, heat, lack of sleep, viral illness, and other triggers. Right now, I still have some mild pins-and-needles tingling in my fingers, occasional moments of vertigo, some mild memory loss and other minor cognitive dysfunction, weird electric shock feelings in my lower back, muscle spacticity in my legs and cramping in my calves and general malaise. By far the most prominent symptom is the fatigue. It's a killer, and I wander through the day fantasizing about when and where I can take my next nap. My muscles are tired, and my batteries are drained all the time. There is no other way to describe it.

So, you might see me walking down the street or through the grocery store, or you may see me running out to catch the mail carrier, and say, "Oh, Amanda is doing fine!" While I really do not want any pity, I also don't want this illness to be minimized, a common complaint among so many of the folks with MS that I have spoken to lately. Most people's image of MS is an outdated one, an image of young people severely and obviously disabled, an image that was developed prior to the advent of disease modifying drugs like Copaxone. While it is not the norm for someone with MS to be in a wheelchair any longer, there are silent symptoms, like the ones I have described, that allow for a fairly invisible disease but one that is very real for the person experiencing it. So, I'm not doing fine, I have multiple sclerosis. But I am dealing with it the best I can and today I'm doing that pretty well.

So on with the pictures! We took Hazel down to the harvest celebration at our farm and she had a blast, mostly because there were people there with guitars! Playing bluegrass!! Guitars and bluegrass are two of her favorite things ever, and the pictures of her watching the band play are priceless.

A perfect frittata for breakfast, made with eggs, potatos, garlic and arugula, all from the farm.

Getting psyched!

One of our laying hens. The poor things were forced to get chased by kids all afternoon. I couldn't make a fritatta without them.

Hanging with mama, waiting for the band to play.

"Mama, you're not funny anymore."

The band starts to play...

...and Hazel starts to shake it.

"Are those...GUITARS??"

"...and BLUEGRASS???"

"This is the best day of my life!!!"

Entranced.

The happiest girl in the world.

Old Men

...but first I just wanted to share that my most heart wrenching and honest blog entry about multiple sclerosis was posted on Brass and Ivory, a blog that discusses "health policy and big pharma are sprinkled with a little multiple sclerosis and music." Lisa is an MS blogger extraordinaire and send me super kind and informative emails when I was first diagnosed. Just wanted to share. Someone likes me!

So, since this camera problem has me operating about two weeks behind schedule, I'm just getting around to updating with pictures from our trip to Middlebury for the Old Boys Rugby Reunion. Jamie, and the other old men from rugby teams past whooped the young 'uns who currently play for the college. They taught those kids a lesson in Newtonian physics; force equals mass times acceleration. Roughly translated- you get fat when you get old, and though you may not be able to run as fast because your knees hurt and you have angina and so forth, it don't matter when what you're hitting is a third your size. The Old Boys beat the kids 38-14.

Getting ready to leave for Vermont

It's a long drive!

Grumpolina watching the game

Group picture of the Old Boys Middlebury Alumni Rugby Team

There's your dad, Hazel!

Look how old they are!

Hazel was stunned seeing all the old men in their tiny shorts.

This is my friend William Taylor. He was kind enough to let me stay at his house with Hazel since the boys went out to the rugby drink up and slept in a trailer in the parking lot after the game. His sister Emma who is five was also nice enough to let me sleep in her princess bed. We made cupcakes for their brother John's first birthday. Their mama Danielle certainly has her hands full.

The next night we stayed with Hazels grandparents in St. Johnsbury. Hazel was kind enough to lick Hectors tags clean for him.

Hector didn't mind.

Watching the game.

Keeping the pesky Vermont mid-October mosquitoes off.

And here are some funny pictures of Hazel over the past couple of weeks. This is Hazel's imp-y, troublemaker face.

She gets these teething cookies stuck in her mouth every time and we can't pry them out, so we just wait for them to dissolve in there.

Hilarious pacifier #1

Hilarious pacifier #2

Ketchup

Wow. OK. Just because I have not been blogging very much, does not mean I have been laying around doing nothing. I have been taking lots of pictures, but never enough. All month we have been busy with things other than multiple sclerosis. I have used this diagnosis to change my life. I have no plans to go back to work anytime in the near future. I'm getting back into yoga, acupuncture, massage, chiropractic medicine, etc. I have unfortunately been forced to yet again reevaluate my relationships, as it becomes even more clear who really supports me and my family when this happened. I am focusing my energy on my friends and family who care and show it, and I have moved others to the back burner. They can wait. My priorities are those around me who have been there for me and my family, rain and shine. I'm not listening to people who try to tell me how I should be feeling, and spending time with people who allow me to be pissed off and depressed and respond by pouring another glass of wine, making a really bad joke, or just crying with me.

How to annoy me? Tell me how great multiple sclerosis can be. Tell me to "just not think about it". Tell me to just "look on the bright side". Or better yet, just ignore me when I disclose to you that I have been diagnosed. Really want to get under my skin? Offer to help me before slowly backing away when I call your bluff. I'm not going to let people use me to make themselves feel better. Now is the time to call in favors. Now is the time I need help and not slogans. Now is the time for those who care sincerely and genuinely to step up. I don't have time for games. I'm leaving all of it in the dust. Want to be my best friend forever? Say what one friend recently did, and it melted my heart. "I don't know what to say, so I'm not going to pretend to, but I'm thinking about you all the time. Anything you need, just ask, but I'm just going to follow your lead. Are you free for lunch?" How refreshing.

Or, this is pretty awesome: my friend Ale and her son Joaquin sent hugs to my family all the way from Mexico. If you ever find yourself in Cabo, please buy this woman a drink on me!!! And hug her delicious son, Hazel's betrothed.

So, I received my final diagnosis of Probable Relapsing-Remitting Multiple Sclerosis (RRMS) last Monday when the results of my spinal fluid came back with all three markers for MS elevated. They will take the "Probable" off of there after I have a second flare under my belt. I will be going for a second opinon, of course, but I'm starting treatment in the meantime. I had three days of IV Solu-Medrol infusions at the hospital to try and end this flare with minimal permenent damage. That stuff is horrible. Jamie stayed out of work to care for Hazel and drive me around. I felt so awful, tired, anxious, racing heart, short of breath, craving carbs, retaining water, sore, pressured speech, totally unable to sleep. Ugh. I hope I don't have to do that again. I'll be starting Copaxone injections at home as soon as the nurse comes to train me and I'll be doing those every day for the rest of my life or until a better treatment comes long. Come on, stem cells! And so it goes...

I have been taking a ton of pictures this month, so here are the highlights of Hazel Porkpie in her Life Continues Series. She continues to grow and change every day and amaze even the most jaded part of me. She is crwling all over the place, into everything, grabby, novelty-seeking, laughing, smiling, so happy...

Getting help cleaning off the peaches.

Hazel loves eating peaches, right off the pit. We peel the skin off with out teeth, and strip her down naked and she just goes to town! It's messy business.

We picked FORTY-FOUR POUNDS of peaches at Cider Hill Farm!

The classic Stink Eye.

The Perfect Peach

An old picture of Hazel from way back at the beginning of the month when she could only crawl backwards and got stuck under the furniture all the time. She has come so far!

A playdate with Anson, Hazel's bud.

Playing with Anson's fringe.

The first attempt at a sippy cup! Note some of the peaches in the background. Also, note the beautiful sunfowers in the dining room that Jaymee sent.

Hazel opening her very first present by herself! She loves this bunny puppet from Ani.

Ani tempting Hazel with the bunny puppet.

Trying to pick the polka-dots off of the bag.

Sippy Cup Angst!

We went to the annual Harvest Party at our farm and met up with friends there. I'm so in love with these little tight leggings on Hazel...

Laurie and Magnolia took Hazel out for a spin while we all danced to the bluegrass band.

Tina and Lola with Jamie and Hazel

Mike using Magnolia's stroller to make a run to the beer tent for us.

God, I love this onsie.

Yay! Eating finger-food for the first time! We tried crumbled tofu, and Hazel enjoyed smashing it all over herself.

I love this. The day that Hazel started really crawling forward, she went right through the kitchen to the back door to stare wistfully at Flossie through the screen. Or maybe she was taunting her.

I'm so in love with this impish little face! Right after I took this picture, Hazel pulled herself up to standing! We both sort of froze and stared at each other in shock before she toppled right over again. But she got a taste of power and is thirsting for more.

Hazel in her new owl jammies playing her new piano. She loves banging on this thing! I got it for one dollar at the Birth to Three Family Center yardsale.

Jamie took this picture of Hazel chewing on one of my old dime-store pulp novels. I love it.

Hazel's first adventure into the foyer under her own steam. Hector Fishstick stayed close to make sure she was safe in foreign lands.