I've got the espresso maker warmed up and can make you a decaf latte, cap, macchiato, mocha, you name it!
and bundlefishmama, I'm a pretty anti-soy person, but for you I'd make a soy latte. We've even got the vanilla syrup!
Well, Mr. E was snoozing quite contentedly on my arm but I was hoping for juuuuust a bit of me time since Jo and T are out of the house running errands, so I put him in his bouncy chair and hoped he'd stay asleep. It's not the heater that mama is, but I did cover him with his sheepskin so hopefully he'll stay cozy and sleepy enough to let me use the computer and make myself another cup o' joe...
He is doing well and I'm kind of starting to feel like digging my heels in against all of the "proactive intervention". I KNOW in my brain that it's good to have all of the appointments and make sure that everything is all right because if it isn't, tending to it early can lead to better outcomes and a higher quality of life, but another part of me wants to tell everyone to just leave my kid alone to be a baby.
This week he had an eye exam, for which he had his eyes dilated and then she had to really forcibly hold his eyelids open to examine them. He hated it, and who can blame him? And they kept trying to get his attention with flashy lights, noisy toys, etc and I finally said "if you want to see him focus, just look at him. Make eye contact. He wants to look at YOU." Which is totally in keeping with something I read in a book - omg, I actually read a book written for GROWN-UPS cover to cover - called Expecting Adam
by Martha Beck. Her son (who also has Down syndrome) couldn't get the hang of letters and reading until it was tied to the names of his family members. They stopped trying to teach him that E is for egg when he told them that E is for 'wizbet' (Elizabeth, his sister). His life *is* those who love him. I think that's true for my guy too - toys, bleah, let me interact with these goofballs who talk to me, feed me and make silly faces at me.
Next week he has a follow-up echocardiogram to make sure that the murmur he had is gone, as well as a follow-up hearing screen because he only passed on one ear in the hospital. I think they'll both be fine but I will be VERY HAPPY when we are done with all of those appointments.
In addition to those, I (*grimace*) will have an appointment for WIC. I don't love the idea, really, and I don't eat WIC foods anyway, but my partner definitely does, and if the government wants to give them to us, well, then, great. I have my own issues about WIC and the fact that they disallow organic foods and free-range eggs but the fact is that Jo will drink non-organic rGBH free milk and we can use the $30 a month to fund something else. T and I will continue to drink our wonderful whole organic raw milk and eat our free-range all-natural eggs from a local farm's content cows and happy hens.
The week after we get to brave even more bureaucratic happiness as we apply for E's supplemental security income. Ah, lovely, the social security office. Never before have I seen so many unhappy people gathered in one place.
Hopefully wedged somewhere in all of these appointments will be our date in juvenile court when jo gets to legally adopt E. If the county would finally send us our birth certificate, we'd be all set. Grr.
E continues to charm us. He has gained about 2 lbs since birth and is probably around 9 lbs right now. He is less hypotonic (= fancy word for lacking in muscle tone, or 'floppy') than most DS babies, and loves to kick and hold on to peoples' shirts when they're holding him. He also is adamant about holding up his head but it leads to him ramming his face down into my shoulder or collarbone, which makes him cry. It's sad but it's also hard to not laugh at him when he does it because the pouty face he makes is so precious.
We've been told that his strength and body tone bodes well for him reaching some of the physical milestones at a rate closer to on par with typically-abled children.
We went to an ECFE 'Parenting the Child with Down Syndrome' group this week and met a bunch of fabulous parents. Slowly I am coming to realize that I can still be the old 'me' even though I am also a new 'me' as his parent. (My specific epiphany was: even moms of disabled children can still be die-hard roller derby fans. In fact, when he's old enough, why not take him to a bout? If ever I have experienced a group of people that is accepting of any kind of difference, it's the derby scene. No kidding.) I find myself looking forward to introducing him to people instead of dreading what they'll think. If they have a problem, it's their problem, not mine or my son's.
Nursing was a complete bust (haha nice pun, jen) with his poor suction and tongue thrust and my lack of milk. I'm trying to sell all of my herbs locally but not finding any takers, feh. It was much easier to forgive myself this time around but I will state for the record that I
ing hate bottles.
OK, that's enough of a novel for now. Hugs and coffee all around, j.