Some of Her Last Baby Pictures

Oh, this child. The moment she turned ten months old, the toddler came out, and the baby receded into the background. But this birthday tomorrow, as arbitrary as it can be, is the final cut- the coup de grâce of her babyhood. Every day she is doing something new. Today she said, "woof". She blows on her food like she is cooling it down. She does "Twinkle Twinkle Little Star" with her hands and dances and sways to any song she hears. Even car commercials. She stretches her arms up when I ask, "How big is Hazel?" and I say "soooooo big!" and she cracks up. She climbs all over me like I'm her gym. Today I caught her stacking blocks, two at a time! She puts thing in a container, instead of just dumping them out. She talks to herself. She points to her crib when she wants her nap. This child is amazing, beautifulandperfect.

It's hard for me to be sad about my baby disappearing, when this emerging kid is so cool. It's been such a dramatic year for our family and it's impossible not to reflect on everything that has happened. There is so much to look forward to though that I can't contain myself. I'll be printing out this blog thus far into a hardcover book for Hazel very soon. All of your comments are going to be a part of it. Thank you for being a part of our lives. Thank you for loving my daughter like one of your own. Thank you for all of the love and support this year. Thank you for taking an interest in our little life, for checking in on us, and for introducing yourselves and your babies to me. You are all a part of my families life, and will always be a part of Hazel's childhood.

There are so many things coming up in the future- on March 10th Hazel is scheduled to go back to Children's Hospital Boston for another procedure. The scar tissue in her esophagus has formed a stricture, or a narrowing and she has had a lot of difficulty swallowing beyond purees. It's frustrating, because developmentally she wants to feed herself, but physically she can't swallow anything that she might be able to self- feed. They will put her to sleep under general anesthesia and thread a balloon into her esophagus under xray. They will inflate it to a certain pressure that will tear her scar tissue and hopefully open her esophagus. This is a procedure that Hazel may have to have repeated several more times. Can I ask you all one more favor- will you please think of her, and send us your best, strongst, healthiest wishes? There is still the risk of a rupture of the esophagus, but there is also the opportunity to get her swallowing again without choking, regurgitating and aspirating. It would be really nice for us all to be able to relax a bit.

But there are other things to look forward to- spring is coming, and while we are sad to see this snowy winter go, we can't wait for days at the beach, walking along the river, swinging at the playgroud, exploring in the woods, spending time at the lake in Maine, and with our friends in Vermont. This will be Hazel's first year in the Warren, Vermont Fourth of July Parade and at the Tunbridge Vermont World's Fair. Our CSA farm will be opening for the spring season, soon and Hazel can participate in all of the fun things going on there this year. Hazel will be walking any minute and she is ready to explore the larger world. We are so looking forward to everything that is to come. We love you more than anything, Hazel Porkpie.

Ipswich Bonfire & Some Random Cuteness

So when we got our quarterly newsletter from The Trustees, Jamie noticed that a friend of his from college is an ecologist for the nonprofit, and lives in Ipswich. So we got in touch with one another, and he has two little kiddos. They invited us over to their place for a last-minute hot dog roast and bonfire in their back yard.

THIS is their backyard...

A large group of kiddos and parents raosting hot dogs on a chilly October evening.

The most amazing view.

Wow. The salt marshes at high tide and sunset.

I love it when she sits like this, with her stumpy little legs, and her belly hanging over her pants.

Jamie with Hazel and Magnolia.

Magnolia's silly "curious" face.

Best friends! (We like to think so.)

Caterpiller Cowgirl

Hard at work.

Sparkling.

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.

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.