December 2004

Dear Friends and Family,

Happy New Year and many greetings from the Kynvi family! We hope you all are having a wonderful holiday season. It has been great to hear from so many of you.

We weren't able to get holiday cards into the mail this year, so we hope you will bear with us as we attempt to keep in touch in this rather odd, but extremely handy, virtual way. You all mean so much to us, and I wish I could sit and write a long, juicy, personal letter to each of you.

[You can click any of these photos to enlarge it, if you'd like.]

2004 has been quite a year for us. It began with the end of my pregnancy , and the happy anticipation of Lars' birth. He finally arrived on March 8th, born at the Birthplace at Wellesley. I did manage to make the web page of his first few weeks (although that's the only one I've gotten done so far!), so you can check out the beautiful newborn , if you'd like. It was a wonderful, intense first few weeks as Lars adjusted to being on and of this earth. He didn't sleep lying down for the first nine weeks...

When Lars was ten weeks old (May 19th), he started having seizures. He was in the hospital until June 8th (3 days in Worcester and the rest at Boston Children's)     . It turns out that I had an undetermined virus during my pregnancy (I think it was connected to the terrible pneumonia I was hospitalized with in November, but we'll never know) that came at exactly the wrong moment for unborn Lars. He has ended up with prenatal brain injuries, and a whole laundry list of problems resulting from this, including periventricular calcifications, microcephaly, seizure disorder (epilepsy), cerebral visual impairment (also known as cortical visual impairment or CVI), optic nerve hyploplasia, and general developmental delay. We were able to bring his initial seizures under control by the summer solstice (June 21st) with a medication called Topamax. However, he began having a second kind of seizure called Infantile Spasms on August 30th, and we only have partial control of these with the Topamax, vitamin B6, and a drug called Vigabatrin, which we purchase from a pharmacy Canada because it's not FDA approved.

Lars is dealing gracefully with all that is on his plate, and he is a wonderful, charming, sweet, cuddly, delightful little guy. We are all madly in love with him, of course. Joa had a difficult time when Lars first started having seizures, but he has adjusted to and accepted who is brother is with remarkable sensitivity, candor, and openness. He adores Lars and is very gentle and sweet with him.

Lars is continuing to develop; he is learning to sit alone, and is working on rolling over. He has good head control, and can grasp and release toys, and bring them to his mouth. He loves to chew on everything, but mostly on fingers. (Mama is the only reliable source of fingers, otherwise known as the only one willing to subject her fingers to his six teeth on a regular basis.) Part of CVI is a lack of facial expressions, but if you watch closely, Lars will show you an array of sweet, subtle expressions. He is smiling and laughing more readily now that we have almost weaned him off of the first seizure med they tried, phenobarbital (it never worked, but it took us a long time to get him off of it). He is understanding cause and effect, and how he can have an impact on what happens around him. He loves to stand (supported) and bounce, and he loves his big brother.

Lars' vision is a great mysterious puzzle that some of the most brilliant people in the field are working to understand. He is essentially functionally blind at this point, but we think perhaps he is seeing a little more lately. One of the characteristics of Cortical Visual Impairment is that it changes as the brain changes and grows, because it affects how the brain processes images. We recently found out that--contrary to what we were told at three months--his visual problems do not reside only in his brain. Even without the CVI, his vision measures as nearly legally blind in terms of what is getting from the eye to the primary visual cortex. He got his first pair of glasses Dec. 23rd .

His ophthalmologist and functional vision specialist at Children's are the best, and we are blessed to be a part of the Perkins School for the Blind Infant-Toddler program. Lars has his own fantastic vision teacher who sees him twice a month, and every Tuesday he and I go to vision group at Perkins. He is with seven other little ones--each of them has their own volunteer, plus there are two vision teachers who rotate amongst the children. We are all together at the beginning and the end of group time, and in the middle the parents meet with a Perkins social worker in a vision education / support group setting. It is a fantastic (free!) program. This is Lars with his volunteer, Allie: .

Lars receives early intervention services, and has an occupational therapist who comes to the house once weekly to see him, as well as a physical therapist twice monthly. He also receives, funded by early intervention, CranioSacral therapy twice weekly. Lars loves music, and the highlight of my week is his individual music therapy time. I see Lars more available, interactive, attentive, and making more connections in music therapy than anywhere else. We are blessed with a highly skilled, thoughtful, and loving music therapist for Lars. Of course I knew what I wanted!

The things we're struggling with most with Lars right now are sleeping and eating. He is awake every night for from two to six hours between 11 p.m. and 6 a.m. Most of the time (~90%) he's fairly content, just wide awake. Some of the time he's fussy, and other times he's downright miserable. In terms of eating, he's a good-sized guy (20 pounds, 30 inches at 9 months) and nurses well (although he's prone to biting...). But he is not interested in food at all. A few months ago he was willing to eat several different foods, had favorites (avocado), and was feeding himself with a spoon. But now he basically won't open his mouth for any food. We think it's connected with the awful tasting meds he has to take orally three times a day. We're trying lots of ideas, and have an appointment with the feeding team at Children's in March.

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The following was written by Joa:

We went camping this summer with Griffin, Lisa, John, Little Tucker, Zane, Cary, and John O . We were in Vermont, and the funny thing is when we got home, apparently some time we listened to A Prairie Home Companion that had this thing with pepper spray that someone went camping and the gate person said to carry pepper spray to get bears away. He also said, "You may find pepper spray cans in bear poop." And that was meaning the pepper spray didn't work. That was pretty funny.

We were at Ricker Pond State Park where we go every year, and we heard loons singing on the lake. When I turned six years old, I got a loon for my birthday, and it makes a real loon sound.

Lars has been doing good. .Here is a picture of my brother and me in front of our tree. I like to roll around with him on the bed and kiss him. I always say to my moms, "Can I see Lars?" The best thing in my life is school [Joa goes to Sudbury Valley School]. And the second best thing in my life is playing with Lars. Dance class is the third best thing in my life.

Abby is doing well, too. She got a new toy for Christmas: it's a lasso rope. She is starting to say, "I don't want to go outside! My feet will get cold!" She is such a funny short dog .
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Joa is full of energy, ideas, plans, and imagination. He's a very busy guy, and very healthy. He's interested in the American Revolution right now, and dressed as a minuteman for Halloween . He enjoyed participating in our legal wedding this summer. After twelve years together, we pulled off planning the legal wedding about a week and a half after Lars got out of the hospital! Friends really came through with music, and it was a beautiful service at our Unitarian Church, with a party hosted by dear friends who live in Concord. We are incredibly grateful to live in Massachusetts and have this important option, even if it's not recognized nationally.

Andey and I are working at different times so someone can always be with Lars. Andey is still teaching Music Together, although she is cutting back on her teaching and administrative responsibilities and doing more home hospice nursing. I am doing music therapy with developmentally delayed children and adolescents two days a week at Mercy Centre, where I've been for the past four years.

We've had a rough year in terms of the house. We're on our third set of tenants for 2004, and have been threatened with a ridiculous law suit, among other unpleasantries. The house needs a huge amount of work, and money, to maintain it. The layout of the rooms is not working well for us, and we're not happy being on the second and third floors. However, our current tenants are great, and the rail trail directly behind our house has just been finished, so those are plusses. We are starting to look at single-family, single-level homes. The market here is outrageous, though.

We were lucky to have visits from both grandmothers this year, as well as my sister Eva and niece Jenna . Joa and Andey got to go to Oregon (this was Joa's birthday gift from my mother) in August, and Lars and I used a leftover plane ticket to go to Nebraska to visit my dear friends from high school. We visited friends in Vermont for Thanksgiving, and went to Andey's family reunion in New Hampshire this summer .

We are very saddened by many national and international events this year, and continue to hope for a more peaceful, understanding, and humane world. We feel blessed with our two wonderful boys, and with many friends and family. We wish you all the best for 2005. Let's keep in touch!

With love,

Lisa, Andey, Joa & Lars

(The above graphics are from my favorite winter holiday site, Candlegrove.)