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(no subject)
Feb. 27th, 2007 09:49 amDrug helps mice with Down's. As the friend who sent this to me noted, regardless of what this study ends up showing, it's nice to see the research being done.
Friday Night
Feb. 22nd, 2007 03:57 pmAnn Viviano and I have a gig tomorrow night, Friday, at Betsy's Back Porch Coffee Shop at Diamond Lake and Nicollete, 7:30-9:30.
http://www.betsysbackporchcoffee.com/.
Michael Matheny will be joining us for a few songs here and there, and both my son and my sister will be in the audience, as of course will the girl and the usual suspects. Please come.
In other news, Nicholas can hear somewhat, but we've still no idea of the extent of his hearing ability. He probably has fluid behind the eardrums that will have to be dealt with in a few months if it doesn't get better by itself. He also weighs a whopping 10 lbs 13.5 oz.
http://www.betsysbackporchcoffee.com/.
Michael Matheny will be joining us for a few songs here and there, and both my son and my sister will be in the audience, as of course will the girl and the usual suspects. Please come.
In other news, Nicholas can hear somewhat, but we've still no idea of the extent of his hearing ability. He probably has fluid behind the eardrums that will have to be dealt with in a few months if it doesn't get better by itself. He also weighs a whopping 10 lbs 13.5 oz.
Viking Game
Feb. 12th, 2007 06:11 pmI played this Viking Game this morning with my students. A great way to open the class, although the collective wisdom of the students didn't do very well. Fortunately, their mediocre score inspired some of them to keep playing throughout the day and email me their high scores (1091 is the highest).
Good luck!
Good luck!
(no subject)
Feb. 1st, 2007 09:30 am"Did you have any genetic testing done?"
"I'm not sure. I know Health Partners did a lot of tests, but we weren't told anything."
"Well, he has a number of characteristics indicative of Down's Syndrome."
From that moment, life has changed a lot. Sure, every parent's life changes when their child is born, but those words at that moment (perhaps two minutes after birth), broke me for a few moments. I thought horrible thoughts - adoption, abortion, will the child live, if he doesn't, will it be easier, what does it mean for him, what does it mean for me - truly horrible thoughts. Then I had to tell his mother.
It's really not welcome to Holland. Holland may be where we are at now, or at least where we are going, but at that moment, it was a lot more like Hell. But since then, things have been getting better and better, seemingly by the hour.
( Read more... )
"I'm not sure. I know Health Partners did a lot of tests, but we weren't told anything."
"Well, he has a number of characteristics indicative of Down's Syndrome."
From that moment, life has changed a lot. Sure, every parent's life changes when their child is born, but those words at that moment (perhaps two minutes after birth), broke me for a few moments. I thought horrible thoughts - adoption, abortion, will the child live, if he doesn't, will it be easier, what does it mean for him, what does it mean for me - truly horrible thoughts. Then I had to tell his mother.
It's really not welcome to Holland. Holland may be where we are at now, or at least where we are going, but at that moment, it was a lot more like Hell. But since then, things have been getting better and better, seemingly by the hour.
( Read more... )
See the show, see the baby
Jan. 29th, 2007 07:52 pmAnn Viviano and I are doing a show this Friday (2/2) at Betsy's Back Porch coffee shop in Minneapolis.
The show is from 7:30-9:30
My son will be there (no, I'm not above using his cuteness to drum up interest).
It's at 5447 Nicollet Ave. S.
The show is from 7:30-9:30
My son will be there (no, I'm not above using his cuteness to drum up interest).
It's at 5447 Nicollet Ave. S.
Tummy Time
Jan. 28th, 2007 10:13 am
Nicholas is doing very well. He's nursing fabulously, growing (back over his birth weight), has lost his umbilical chord stump, and has charmed my parents who are visiting this week. Shannon and I are doing pretty well, too!
(no subject)
Jan. 23rd, 2007 07:19 amThis Baby Bjorn thing is great!
Though there is baby drool on my shirt.
Though there is baby drool on my shirt.
About Quillen
Jan. 22nd, 2007 11:39 amMy son, Nicholas Quillen Perry's middle name comes from my granddad, Albert Quillen Perry. Al's obituary is in the middle of this page (search for Perry). He was named after Quillen Shinn, a 19th-century Universalist missionary. Shinn founded Ferry Beach, where my granddad used to go, and near where he and his wife lived at the end of their lives. Their ashes are scattered at Ferry Beach.
So that's Quillen.
So that's Quillen.
(no subject)
Jan. 20th, 2007 10:44 amIt's been over a week since Nicholas was born and we're all doing well. There are inumberable moments of tremendous joy - he was a little chilly after a sponge bath so I held him on my chest, under my bathrobe, and we cuddled until Mamma was ready to nurse. His little fingers played with my chest hair and he tried to figure out why my chest was so much less useful than his mother's. There are a few moments, still, of sadness. Shannon, of course, is dealing with the fun of post-partum hormones, which can't make it any easier. But both of us still encounter grief. We grieve for the loss of something that we only imagined, we worry about the future, and when needed we take turns being strong. I suspect these emotions may never completely fade, and that's alright. They don't stand between our love for our son, or our determination to make sure the world is as beautiful a place as he thinks it is. I still, however, cannot really listen to the song that Kurt wrote for Nicholas. Looking back at your comments from those first few days also make me tear up. Overall, though, having our healthy, happy, sweet, boy with us overrides everything else.
I've now been doing some reading, mostly following links left to us by some of you in comments. I find This .pdf from the UK Down's Syndrome Association to be good. There's still so much information to absorb.
At home, Nicholas has begun to adapt very well. Nursing has become relatively easy once again (for the last 24 hours. We'll see what the next one's bring). Nursing means less gas, happier mama, happier baby, daddy gets to sleep, it's better for everyone (although I missed my 3-5 feeding last night, I enjoyed the sleep). I have to get back to work now, too, so a little more sleep can lead to a lot more productivity. For a while yet, Daddy needs to bring home the bacon, so I better get to it.
We're more or less happy to receive visitors from friends now, but please understand that we are still not highly functional. Call or email directly, suggest a time when you might come over, and if you can please bring some prepared food for our freezer (preferably in portions. Huge vats of frozen stuff are less useful than three dinner's worth in three separate freezable containers). If you smoke, please change into something not laden with toxins before you come over.
Thanks to everyone for everything.
I've now been doing some reading, mostly following links left to us by some of you in comments. I find This .pdf from the UK Down's Syndrome Association to be good. There's still so much information to absorb.
At home, Nicholas has begun to adapt very well. Nursing has become relatively easy once again (for the last 24 hours. We'll see what the next one's bring). Nursing means less gas, happier mama, happier baby, daddy gets to sleep, it's better for everyone (although I missed my 3-5 feeding last night, I enjoyed the sleep). I have to get back to work now, too, so a little more sleep can lead to a lot more productivity. For a while yet, Daddy needs to bring home the bacon, so I better get to it.
We're more or less happy to receive visitors from friends now, but please understand that we are still not highly functional. Call or email directly, suggest a time when you might come over, and if you can please bring some prepared food for our freezer (preferably in portions. Huge vats of frozen stuff are less useful than three dinner's worth in three separate freezable containers). If you smoke, please change into something not laden with toxins before you come over.
Thanks to everyone for everything.
(no subject)
Jan. 17th, 2007 01:59 pmPhotos: Nico is home.
Note: The last three of Nico and Dad are there because Nico is wearing a nightie that I wore in the first weeks of my life. The wife of my godfather and namesake (her name is Toni) batiked it and gave it to my mother, and for all these years mom could just never throw it away or give it to anyone. So it moved from Buffalo to Indiana to Nashville to St. Louis, and now to me. My son sleeps in it at the moment.
Note: The last three of Nico and Dad are there because Nico is wearing a nightie that I wore in the first weeks of my life. The wife of my godfather and namesake (her name is Toni) batiked it and gave it to my mother, and for all these years mom could just never throw it away or give it to anyone. So it moved from Buffalo to Indiana to Nashville to St. Louis, and now to me. My son sleeps in it at the moment.
Home, we hope
Jan. 15th, 2007 02:53 pmOur doctor's plan: Take Nico off the "grow lamps" at midnight tonight. Check his jaundice in the morning. If it looks good, circumcise him, have us do our final meetings (we need to talk to a social worker about what we qualify for with Nicholas), then SEND HIM HOME WITH US!!!!!
Tomorrow. We hope. If not, then very soon. He's thriving.
Tomorrow. We hope. If not, then very soon. He's thriving.
Nico is off his IV and oxygen monitor. This is huge news, because it means that they believe he can breathe on his own, doesn't need antibiotics, and feed himself. It also means that he's not getting glucose. We just fed him, he was hungry, and he ate more than he ever has before. This is important because feeding + no jaundice = home! Also, the nurse was pretty sure he wouldn't be able to feed because of the way he likes to poke out his tongue (typical of Downs babies). She watched us this time, beaming, saying that she didn't believe it, but that he's a superstar. Hear that? A superstar! A health-care professional said so.
Lost in this, at least for me sometimes, is the fact that Shannon has gone through a major physical ordeal in the labor/delivery. She is as healthy as could be really, looks fantastic, and is recovering more quickly than I ever expected.
Such a good day. Hope the next feeding is as good.
P.S. Yes, I'm becoming one of those parents who trumpet every little milestone. But milestones keep him alive and get him home. They /are/ major.
Lost in this, at least for me sometimes, is the fact that Shannon has gone through a major physical ordeal in the labor/delivery. She is as healthy as could be really, looks fantastic, and is recovering more quickly than I ever expected.
Such a good day. Hope the next feeding is as good.
P.S. Yes, I'm becoming one of those parents who trumpet every little milestone. But milestones keep him alive and get him home. They /are/ major.
Holland also has chocolates.
Jan. 13th, 2007 11:54 pm![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif){kind=small}
mia_mcdavid used the phase "welcome to Holland" in a very sweet email to us. We didn't get it. My mother, though, got the story in an email from a friend (historian Linda Kerber, interesting woman), who went to highschool with the author. Emily Kingsley helped create Sesame Street and her Downs child appeared on the show from time to time. Anyway ... I /love/ this metaphor. I speak Italian, ironically enough. Not Dutch.
( Read more... )
Update again
Jan. 13th, 2007 05:23 pmHi all. Here's the story: Nico is still having trouble with temperature regulation. This means it will take some days for him to come home, as hopefully having more nourishment and time outside the womb takes care of that problem. No one has expressed any real concern about this taking anything more than time.
So we'll be coming and going from home to hospital, being there from 7 AM to 8 or 11 PM. If you have any questions, I'll try to respond to any that are posted in comments to this post. I've read everything, but won't be going back and responding to all that much. Thanks for all the support.
Anticipating answers:
We don't really know what we need, but we'll speak up when we need something. I'm not shy about asking for help.
Everyone who wants to meet him will, but we're taking it very very slow. We'll hear you if you ask for the chance to come to the hospital, but please, please, pease, don't be offended if we don't get back to you right away. We'll also try to get him out to public events in February, if all goes well.
So we'll be coming and going from home to hospital, being there from 7 AM to 8 or 11 PM. If you have any questions, I'll try to respond to any that are posted in comments to this post. I've read everything, but won't be going back and responding to all that much. Thanks for all the support.
Anticipating answers:
We don't really know what we need, but we'll speak up when we need something. I'm not shy about asking for help.
Everyone who wants to meet him will, but we're taking it very very slow. We'll hear you if you ask for the chance to come to the hospital, but please, please, pease, don't be offended if we don't get back to you right away. We'll also try to get him out to public events in February, if all goes well.
