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.

Life Goes On

I just got off the phone with my neurologist, and he confirmed the diagnosis of multiple sclerosis. I had elevation in all three markers for the disease in my spinal fluid. I have a referral to the Harvard MS Clinic at the Brigham in Boston where I'll go for a second opinion. I'm not likely to get in there for months though so until then I'll be doing three days of Solu-Medrol infusions at the hospital, starting tomorrow. Starting Friday I'll be doing daily injections of Copoxone, one of the disease modifying drugs. Some people have really amazing luck with Copoxone, and 10% of folks don't have another relapse of MS for more than five years, so keep your fingers crossed that I'm one of those people. Hazel will be in Kindegarten!

And, since babies don't wait for these stupid grown-up problems to pass before they carry on with their lives, Hazel cut her first tooth today. And what a fine tooth it is! Beautifulandperfect, just like her.

And On We Go

OK, enough of that. It is time to be on with it. I had my lumbar puncture on Thursday and, yes it was horrible. I'll hear from my neurologist as soon as he knows something, but until then, I'm just trying to learn as much as I can about the various disease modifying drugs and so forth. My hands are still pins-and-needles, fingertips are numb and my torso is tingling and there's a real loss of sensation there. The neurologist thinks that this flare will pass without Solu-Medrol infusions and will leave minimal damage in it's wake. Let's hope.

I really need to thank all of the amazing women at Babyfit, who over the last sixteen months have become very close friends, and some of the most supportive women in my life. Also, my amazing sarcastic, laid-back, mama friends (The Momtourage) who I have shared countless margaritas with on Tuesday afternoons, who get my jokes, and who have all offered to help with Hazel at the drop of a hat. This mothering thing would be a totally different experience without you guys. Who would I drink beer with? Probably myself, and that is just sad. Jamie has been home for almost two weeks now and this process would have been intolerable without him, so a big shout out (HOLLA!) to his fabulous coworkers, who I know read this blog and wring their hands right along with us. I promise I will bring Hazel into the office as soon as this most recent project is over so Jamie can pass her around for some Lexecon Lovin'. Especially to Stephanie, Shauna, and Krystine.

Despite all this health bullshit, Hazel has not slowed down one bit. I think having her dad around has accelerated her development. Don't ask me why or how. I don't even know why I said that, but I do know that she is like a new kiddo around him. As of yesterday, she has finally started to crawl forward! For weeks she has been doing her backward Army-crawl and has spent hours stuck under armchairs and ottomans. She has made the connection between pushing off with her little feet and propelling herself towards what she wants instead of away from it.

Hazel, as of two nights ago, has also started laughing at things that she thinks are funny! It's so cool! We used to have to DO something to her (bite her armits, munch on the back of her neck, blow raspberries on her bare belly) in order to hear her shrimpy little laugh, but the other night when the three of us were laying in bed together, she just looked over at her dad and started to crack up. He wasn't doing anything at all, just gazing and smiling at her, but she thought it was the funniest thing! She would look away, and look back and belly-laugh. This morning she was doing it again. I think this is the start of a Sense of Humor.

Last week, Hazel was sitting on her dad's lap on the couch and she just looked up at me and started making chewing motions with her jaw. I sort of stared back at her, curious, and then the sounds started coming out; "dadadadadadadadadada...". Finally, we have a babbler! Since that Thursday evening, she has not shut up and we can't get enough of it. I loved the constant shrieking, and there still is a bit of that, but she has added to her vocabulary all of these speech sounds that she utters with this breathy urgency that we love. I have tried to get as much on tape as I can, but as soon as Hazel sees the video camera, she freezes and stares. Does not make for very exciting movies.

So, we have been visiting with friends and family, sending time with each other, playing witb Hazel, and doing our normal thing (aside from me having a nail jabbed in my spine). Life goes on. I will certainly update about mv health here as I learn things, but until then I am enjoying my daughter, beautifulandperfect and my husband without whom I am but a husk.

Pictures coming soon.

An Update, With No Good News

I hate writing these updates, especially since it is all going downhill for me. But I cannot stop writing, and I cannot stop this blog, as much as I would like to crawl into bed and never come out. I am compelled to record for Hazel the first year of her life, in all its detail. This is something that is going to effect her forever, and will shape her life and personality. I want her to know where it all started. And that it all started on September 11, 2008. And that the first six months of her life were lived in blissful ignorance and all-consuming love. I know she won't remember that, but Hazel, if you are reading this sometime in the far future looking for some kind of insight into me or you or us, know that the first six months of your life were filled with snuggles, naps, giggles, tickles, games, dancing, singing, friends and family. The only thing I ever want for you is for that to continue. Most of it will, certainly you will remain the most loved child there ever was, but things will probably change from here on out. You wont be aware of it though, and whether its a blessing or not I don't know. All I know is that from your perspective, in your memory, you will always have been someone who's mother has multiple sclerosis. But know that you weren't.

About a Month Ago

Hazel shrieking at her dad from amanda donovan on Vimeo.

An Update

I figured I owed everyone an update about whats going on. I had my brain scan, and spoke with my neurologist the following morning. He unfortunately said that my scan is "very abnormal" with "significant non-specific damage to the white matter" in both hemispheres. My brain has scars all over it. My neurologist said that multiple sclerosis is his first thought right now. I am scheduled for a cervical spine MRI on Sunday morning, and I'm in the hospital all day Tuesday for a lumbar puncture. The lumbar puncture will rule out about a billion viruses, and will rule in MS, if in fact that is whats going on. The c-spine scan will survey the extent of the damage to my spinal cord so far.

I'm scared. I'm depressed. I can't stand even looking at Hazel right now. I'm pissed that I only had six healthy months daydreaming about our future together before everything fell apart. I don't really want to talk about it beyond that. I will continue to update here as we find out more information, but this is a very dark time for my family. Thank you to everyone for your continued thoughts, prayers, good vibes, and wishes. Keep sending us strength and health. We need it.

Here's Something Kind of Scary

So, the past week and a half, my family has been dealing with something a little frightening. About nine days ago, I noticed that both my hands had pins and needles. I thought it would go away. Then, my chest and back felt prickly. I thought it was my detergent, but I only wash our clothes in baking soda and white vinegar. I thought it was a new medication, but I stopped that and there was no improvement. I thought it was the way I was sitting, but I changed my postures and nothing improved. Within a week, my whole sternum down to my solar plexus was totally numb in a five inch-wide band. My hands feel like the skin is on too tight. They are burning. They are numb. I got scared.

My PCP left her practice a couple of years ago when she had her second child, and because I was seeing doctors every other day between fertility treatments and pregnancy, I never got a new one. So this past Friday, I called to see if on an off chance the doctor who took over the practice could take me on as a new patient. Oh, and could the doctor see me immediately?

Dr. Ellis took me in that afternoon, and my symptoms stumped her. She spent a long time with me though, dragging out her neurology books, trying new things, looking ideas up on her computer, etc. One thing she did not do is blow me off by telling me it was all in my head. "It's stressful being a new mom, and I'm sure you're sleep deprived. Why don't you try and relax. Here is a pamphlet on Postpartum Depression. See you in 12 months."

Dr. Ellis took a bunch of blood and checked everything from potassium, to Lyme, to arsenic, to inflammation. She told me if things got any worse, over the weekend to go directly to the ER for a neuro consult and MRI. And she told me she would call on Monday.

By Sunday, I felt the worse. So, rather than wait, Jamie and Hazel and I went over to the ER, but the doc I met with there gave me the blow off. "This isn't an emergent situation. You should see a neurologist." No shit. Page him. I can't feel my hands.

Monday morning I talked to Dr. Ellis. Not her secretary, and not her nurse. I talked to her. Several times. She called around to half a dozen neurologists and found one who specializes in paresthesia and peripheral neuropathy. She talked on the phone with him, explained my case and got consultation. He had her set me up with a brain MRI which I am having tomorrow. This will hopefully rule out Multiple Sclerosis, which is the primary concern at this time. He was also able to fit me in this afternoon for a consult because of a cancellation.

All my labs were normal, except for elevated sed which measures inflammatory process and elevated white blood cell count. All of my reflexes and everything are normal, except for my Babinski reflex. Because of this, my neurologist is sending me for an additional cervical spine MRI after my brain scan (unfortunately, this is going to involve a lumbar puncture...shit). He has given me an initial diagnosis of Myelitis and Paresthesia.

My first MRI, the brain scan, is tomorrow afternoon. I'm pretty nervous, but I feel so good knowing that Dr. Ellis and Dr. Kellhier are on my team. I am so thrilled that they are taking this as seriously as I am and treating me with respect. New numbers came out today that say only 2% of new medical school graduates plan on going into Internal Medicine because the pay is too low and insurance paperwork is too high. While as a social worker, I can certainly sympathize with those complaints, I find the numbers cynical and depressing. If Gail Ellis had chosen to go into another speciality, her patients would surely not be getting the quality care that she has provided me. I know my doctors are determined to figure out whats going on, and I am trusting them with my life and the life of my family. Keep your fingers crossed for me, please.

'Cause Babies Don't Keep

Mother, oh Mother, come shake out your cloth
Empty the dustpan, poison the moth,
Hang out the washing and butter the bread,
Sew on a button and make up a bed.
Where is the mother whose house is so shocking?
She's up in the nursery, blissfully rocking.

Oh, I've grown shiftless as Little Boy Blue
(lullaby, rock-a-bye, Lullaby loo).
Dishes are waiting and bills are past due
(pat-a-cake, darling, and peek-peek-a-boo).
The shopping is not done and there's nothing for stew
And out in the yard there is a hullabaloo.
But I'm playing "Kanga" and this is my "Roo."
Look! Aren't his eyes the most wonderful hue?
(lullaby, rock-a-bye, lullaby loo).

The cleaning and scrubbing will wait till tomorrow,
For children grow up, as I've learned to my sorrow.
So quiet down cobwebs. Dust go to sleep.
I'm rocking my baby and babies don't keep.

Ruth Hulburt Hamilton, 1958

Someone was kind enough to share this poem with me after I made this post here. I was just remembering it as I put Hazel down for her nap this morning. Here I am, downstairs, waiting eagerly for her to wake up again so we can go on with our play together. I know that I say it all the time, but it' still never enough: I don't know that I could ever communicate to Hazel how deeply in love with her I am. The thoughts that come in the worst moments, that something could happen to either her or I that would prevent us from living out our days with one another is nauseating, hyperventilating. I remember crying over her little sleeping body the week we brought her home because I realized that the best case scenario is that I will never see her whole life, that I will never get to see Hazel as a little old lady, with her grandchildren, feeding the birds at the park. I just cried and cried because I won't ever see all of Hazel's footsteps on this planet. And if I do, that's even more tragic.

Another time I became inconsolable because I realized that from the moment I pushed her little body out into the air, all of her energy was going to be directed towards separating from me. She already is arching her back and pushing away from me so she can get down on the floor and explore. I clearly remember the last time that she fell asleep on me and we napped with each other, skin to skin. Can you hear my heart breaking? But I so love watching her learn and explore. Nothing gives me greater pleasure that to see her grow into herself. So I let her go, and just force my cuddles on her another time.

I just love seeing the kiddo she is becoming; so different from me, but still familiar. She is probably the most persistent person I know, and so determined. She works so hard, never giving up, to get what she wants. She is precise, too. Always on time, and rigidly scheduled. When I listen to her and satisfy her needs, I am rewarded with the most delightful company! She is funny, spunky, charming and precocious. She smiles at everyone, reaches out towards everything new and different. Hazel is very novelty-seeking and high-sensation seeking. I can tell she is going to be so intelligent with this sort of intense curiosity. She is bored of a new toy within twenty minutes and simply must have something new to figure out. She is adventurous, never afraid of a strange situation and always seeking new people and places. She plays hard, kicking an punching and laughing herself into a lather, and she sleeps like a champ when its all over. I so admire her tenacity and silliness. Her curiosity and physical strength. Her determination and sweetness. And her ability to know when she needs to rest her body and mind. She amazes me. I hope that when she reads this years from now she understands how much I appreciate her as her own person. I also hope that she knows not just how much I like being a mother, but how much I love being her mother. I feel truly honored to be the mother of such a wonderful person, and I'm so lucky that she chose me to settle down with.

Mama and Baby Yoga

A bunch of our mama friends all got our babies together for a mama and baby yoga workshop at Prana in Salem. It was going to be a one time thing, but we had so much fun that Daniela is going to do it every month for us. Of course, it was also another excuse to get together for beer and burgers at Salem Beer Works apres yoga. Because thats what mama-gurus do.

L to R: Nathan, Beatrice, Liam, Lola, Anson and Hazel

ARENT THEY ALL SO DELICIOUS!?!

Right after this picture was taken, Hazel reached over, snatched Ansons pacifier out of his mouth and immediately stuck it in her own. This is her eyeing it and weighing her options.

Anson, Liam and Hazel, eating a plastic bag. That contains a dirty diaper.

Anson, trying to steal Liam's pacifier to replace his own. Lola!

Lola and Tina, who managed to escape her OBGYN residency at BMC for the afternoon.

Me, feeding Hazel.

Anson, delighted with the massage Emily is giving him after class.

Jen with Beatrice, and Erin with Nathan.

Labor Day

I know this is a week late, but this has been a busy time for us, and I just have not had a moment to get this up. For Labor Day weekend, Jamie needed to get the hell out of town and away from his job, which has been consuming every moment of his life lately. We went up to his families lake house in Maine on Sunday morning and just stayed for one night. There were more people already up there than we expected, but we had such a good time eating, cooking, swimming, reading, playing, listening to and playing music, drinking beer and picking blueberries. Here are some pictures!

Uncle Christopher serenading little Hazel, rolling around in her play yard.

Dave and Chris playing guitar for Hazel.

Little Flossie, wet and nervous.

Brave Hector playing fetch with his new friend Dave.

My view from my reading chair.

Hazel and mama, doing what we do best: staring, laughing and tickling each other.

Hazel et Sofie la Girafe

A dip in the lake.
Hazel and her da.

Getting tickled by Uncle Chris

Picking blueberries in the morning with dad for the most delicious pancakes.

They never stop trying to sink this damn float, no matter how many times they fail. They are very persistent. Dave, Jamie, Chris.

Christopher and Dave

Me and my shitty little dog.

Hazel and Cousin Haley.

Hazel with Cousin Tanner and soon-to-be Cousin Gabby. Gabby and Tanner are probably one of the most attractive couples out there, and we cannot wait to get as drunk at their wedding as Tanner got at ours. Gabby is a total natural with kiddos. She is going to be a phenomenal mama when she is ready. They cuddled right up, and she didn't even mind when Hazel barfed all over her cute dress. We love Gabby!