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There are so many ways that Lars now reminds me of Lars in his first ten weeks. I can often get him to settle if I throw all my energy into it & provide constant significant gross motor, vestibular input, singing, games, funny sounds...and it happens to be a combination that works. Then maybe after a half hour of that he'll calm down & have a few good minutes. Then something happens and he arches his back, screams, cries, turns red in the face, stiffens his limbs.

But in his first ten weeks Lars weighed 7 & 8 pounds, and was significantly shorter than he is now. There aren't too many giants like me around who can provide the input that will settle him. And ho ho ho- this giant gets tired & has a significant amount of work she needs to do at home to prepare for teaching two courses, one new to me.

Other times Lars is inconsolable, like he was his first hour of life, and there's nothing that will help. We have prescriptions for morphine & valium--with them we just might get a little bit of calm time so he can actually eat.

It's interesting to me that there have been only three significant times without seizure activity in his life: his first ten weeks, a six week period when he was 4-5 months old, and the six weeks since this past Dec. 20th, when he's been feeling terrible. Occasionally he would go a few days without having a seizure, and I had noticed several times that he seemed to have a high level of irritability after a couple days without a seizure.

What does all this mean?

Where to go from here?

It's my habit to imagine worst-case scenarios, and to figure out how I would deal with them; then what actually happens is usually not quite that bad. However, imagining Lars feeling this bad on a daily basis for the indefinite future is something I haven't been able to wrap my mind around yet. Coping with his loss of vision, intellect, verbal communication, motor abilities was nothing compared with coping with my baby in severe, ongoing pain. This is heartbreak.

With no clear path laid out before us, we're searching for the footprints of those who have gone before us. Are there parents, neurologists, anyone who can describe a similar situation, and what the trajectory looked like?

Is this something--as one of the early GI docs said--that "just happens to neuro kids sometimes"? And if so, for how long?

I haven't been feeling well today. Last night I got a vertigo migraine, and today I've been hungover from that, achy, disheartened, and so exhausted I struggle to keep my eyes open. My system is insisting that I curl up in a silent dark place and rest. For about a month.

Numerous wonderful things that have also happened the past few days. I got to go see Cornell West and Sweet Honey in the Rock at Berklee--and thanks to Karen W & CBT, tix were free, to boot. Both Sweet Honey & Cornell West were breathtakingly moving, deepening, and sublime. Definitely cracked me open.

Grandma continues to be a life-saver, taking turns caring for Lars, Joa, and Abbykyns; going shopping; doing dishes & laundry; cooking food...and tonight she has Larsy overnight in her bed because Andey's working & I'm teaching tomorrow. Let's hope he does well. Grandma needs to leave Monday; we'll miss her so much.

Joa got to go rollerblading this afternoon with Grandma, so that was great fun. He's doing well, considering the amount of screaming his little brother is doing, and how that leaves him feeling agitated.

Jean came to help at Mechanic Street yesterday; Michele came today with majorly delicious food, and rocked Larsman for a while. She was able to elicit six calm moments, and one catnap from him. On Friday afternoon Lars & I spent 2 hours in the wonderful warm Fernald pool with seven friends (4 toddlers & 3 moms), and although Lars cried much of the time (which I've never seen him do in the pool before), we traded kids & passed him around & had a generally grand time.

On the way home from the pool we got to visit our sweet Denise, who is recovering from shoulder surgery, and sweet Kali was there, as well.

Lars did have some semblance of his normal routine Thursday. OT with Sue, and there were joyful reunions with Meredith and Alice. He got his new chair & it's fabulous. A single seat with two different bases, one for rolling around out in the world, and one for home that not only rolls but also moves up and down.

Good long phone conversations with Lisa & Carylbeth, sweet emails. Thank you all.

This week we have appointments with CCS, the Complex Care Service, and with epileptology. Now I have an appointment with my pillow.