tag:blogger.com,1999:blog-148502292011-09-01T09:49:34.959-07:00With my sincerest apologies to the Dutch.Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.comBlogger301100tag:blogger.com,1999:blog-14850229.post-51536209125609996142011-06-24T11:38:00.000-07:002011-06-24T11:38:22.814-07:00

So, this new study just came out, and it fits dead-on with our experience. Autism linked to hundreds of spontaneous genetic mutations Quote from the article: In 2007, Michael Wigler, a geneticist at Cold Spring Harbor Laboratory in New York, and his colleagues showed that spontaneous mutations — those that arise for the first time in an individual, rather than being inherited — are

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com1tag:blogger.com,1999:blog-14850229.post-54252590608650603202010-01-10T14:38:00.000-08:002010-01-10T14:38:43.663-08:00

Here's my nutshell explanation of genetics for anyone who doesn't already know more than I do and is interested in Susan's medical issues, or in bizarre conditions in general. Keep in mind I'm not a science/medicine person by nature so it's all filtered through my liberal-arts mind. We met with Dr. Dimitri, the geneticist, right after New Year's to talk about the results of some blood tests we

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com2tag:blogger.com,1999:blog-14850229.post-30726816201209855522009-11-11T16:48:00.001-08:002009-11-11T16:51:37.000-08:00

From examiner.com. Study says increased risk of autism for preemies "Pre-eclampsia, a sometimes life-threatening condition for the mother, had almost a 50% increased risk of the baby developing autism." Huh.  Whaddya know?  I've never heard of this link before.  It's funny how things start to make sense years after the fact.

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com0tag:blogger.com,1999:blog-14850229.post-11979045581318694092009-11-01T14:29:00.000-08:002009-11-01T14:29:29.672-08:00

My friend Karen asked about Susan's communication skills, and it just so happens that I got reports from both the speech therapist she sees twice a week at school AND the one she sees once a week at Children's Hospital.    We have always expected that Susan would have speech difficulties by nature of being tube-fed.  The muscles that babies use sucking down bottles and gumming cheerios are the

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com0tag:blogger.com,1999:blog-14850229.post-83072557963825838042009-10-30T14:23:00.000-07:002009-10-30T14:29:23.425-07:00

I'm writing this stuff down for the benefit of family members who want to hear about Susan's health, and for other parents of kids with feeding disorders who are curious about Dr. Paul Hyman's treatment protocol. There is not a lot of information available about feeding issues, so word-of-mouth is pretty much the only way to find out what treatments are even out there. Anyway, if you're

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com0tag:blogger.com,1999:blog-14850229.post-46531571167596822872009-10-19T15:02:00.001-07:002009-10-19T15:27:53.615-07:00

It seems I properly freaked out my family by describing the feeding tube switchout as a surgical procedure without warning everyone in advance. Sorry about that. To be clear, it wasn't really an operation. At least far as I am concerned, if there are no incisions and no stitches, there was no surgery. What Susan had done last week was the replacement of her old feeding tube, which went into

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com1tag:blogger.com,1999:blog-14850229.post-38378360173884727862009-10-15T19:26:00.000-07:002009-10-15T19:47:13.769-07:00

S actually asked for (and received of course), scrambled eggs for dinner. Scrambled-motherfucking-eggs, do you hear me? They have a squishy texture that usually she can't stand. I'm finding it an effort to NOT encourage/remind her to keep eating. I kept my comments limited to complementing her on doing a good job, though, and she fed herself about 10 bites of eggs, and five more of pudding.

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com0tag:blogger.com,1999:blog-14850229.post-38721060678177286572009-10-15T15:21:00.001-07:002009-10-15T15:21:29.156-07:00

We had to be at the hospital by 7:00 a.m. to check Susan in for the procedure. It was done in the short-stay surgery unit, so after we arrived and filled out the requisite forms, Susan was assigned to a semi-private (two bed) room to be seen by the assorted medical staff to get her ready for anesthesia. They gave her a tranquilizer (Versed) via her g-tube so she wouldn't freak out when they put

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com0tag:blogger.com,1999:blog-14850229.post-80036059176987975942007-10-20T07:59:00.000-07:002007-10-20T09:08:59.916-07:00

My family has never qualified for SCHIP, because our income is higher than 200% of the local poverty level. We might qualify if we lived elsewhere, because our city has such an astonishing amount of the population living in extreme poverty, but we've always managed okay without it. I don't think people realize the absolute life and death importance of SCHIP to kids much like my own. When

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com0tag:blogger.com,1999:blog-14850229.post-82953058551861694332007-09-13T08:00:00.000-07:002009-07-16T08:29:12.294-07:00

There was a big story in the news here that on the first day of school for the state-run Recovery district, something like 40% of the registed kids didn't show up. It turns out that many families had registered their kids at more than one school - probably one Orleans Parish and one Recovery, and maybe a private or charter as well, to cover their bases in case their first choice turned out not to

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com0tag:blogger.com,1999:blog-14850229.post-4392469508435054552007-09-11T18:44:00.000-07:002007-09-11T19:05:54.322-07:00

It's the story of my life, I tell ya. I'm just going to copy and paste some posts from the x-treme therapy thread at TableTalk, where I've been chronicling our struggle to get Susan into school. 6-22-07We're still getting bounced around between two school districts and the charter school Susan is supposed to start at in the fall. She hasn't had any state-sponsored services since she aged out of

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com0tag:blogger.com,1999:blog-14850229.post-21194897614579598152007-03-21T07:55:00.000-07:002007-03-21T08:25:16.961-07:00

RE: The comment on my last post where a preemie parent tells of being thrown over the edge when she heard of a 3YO former preemie who was just learning to jump.There are a million of those moments, aren't there?When Susan was still in the NICU, at about 4 months old, I noticed a new mom scrubbing in, so I greeted her and asked about her child. I felt like a veteran at that point, of course, and

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com4tag:blogger.com,1999:blog-14850229.post-283456418628842892007-02-28T12:33:00.000-08:002007-03-08T09:18:50.978-08:00

Another good post on The Preemie Experiment today. There’s some argument about whether new mothers of preemies should be primarily reassured and given hope, or informed and given options on the course of their child’s course of treatment. I am honestly surprised at those who would deny a realistic presentation of the risks involved with premature birth to new parents. In the weeks before and

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com2tag:blogger.com,1999:blog-14850229.post-1169069299857426042007-01-17T13:25:00.000-08:002007-01-17T13:28:19.870-08:00

It’s the time of year when parents in New Orleans start the mad dash for a school for our kids. At schools across the city, parents are lining up to submit forms, pay application fees, and cash in any favors owed us by a friend of a friend of the admission director at the local public charter. This morning Mr. N and I were amongst them, crowding with other parents into a pre-K classroom to

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com4tag:blogger.com,1999:blog-14850229.post-1169009218654570322007-01-16T20:09:00.000-08:002007-01-26T20:42:53.336-08:00

A new blog titled The Preemie Experiment has gotten some posters on the Preemie-L list riled up for acknowledging that 1) preemies tend to have long-term problems and 2) caring for them is hard. Oh boo - mean old bloggers making people sad by acknowledging the truth. Whatever is the world coming to?OK, it's widely known that I'm a big old bitch, but I've always found the Preemie-L list way too

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com4tag:blogger.com,1999:blog-14850229.post-1151630104934103102006-06-29T18:04:00.000-07:002006-08-22T15:46:39.526-07:00

I thought we could use a fresh coat of paint around here. I liked the obnoxiousness of the old, green template, but this one just feels happy.Tomorrow Susan's getting tubes put in her ears to mitigate the repeated ear infection situation. I hate taking the surgical route, but the constant ear and sinus infections were getting to be too much of a problem. The ear, nose and throat doctor

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com4tag:blogger.com,1999:blog-14850229.post-1146374327982108542006-04-29T21:56:00.000-07:002007-01-16T19:34:45.163-08:00

It occurs to me I really need to start using this blog again, not only to help record Susan's progress but also in the hopes of finding useful advice through the blogosphere.We attended your average 50-guest birthday party for a two-year-old today. I have to credit them for their restraint. Aside from the large group, it was a reasonably modest affair with pizza, cake, sodas for adults and

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com2tag:blogger.com,1999:blog-14850229.post-1134582334049052512005-12-14T08:58:00.000-08:002005-12-14T09:45:34.093-08:00

I have to plead guilty to having completely neglected this blog since late August. I think you'll understand. As you might guess from my nom de blog, I live in New Orleans. We lost our house and Katrina and everything has been chaos since. More of that story in my house blog.One of the many lessons learned these months with regard to Susan, is just how important early intervention really is.

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com0tag:blogger.com,1999:blog-14850229.post-1132609747598743212005-11-21T13:49:00.000-08:002005-12-14T08:57:28.570-08:00

Bad Mama

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com0tag:blogger.com,1999:blog-14850229.post-1132609645797602262005-11-21T13:47:00.000-08:002005-12-14T08:55:45.766-08:00

A Preemie's Journey from early birth to special needs

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com0tag:blogger.com,1999:blog-14850229.post-1132103651624972272005-11-15T17:10:00.000-08:002005-11-15T17:14:11.643-08:00

I'm turning the comments off on this account because of the annoying spam I keep getting. On the off chance any of said spammers are actually reading this, I assure you I will not be banking any cord blood because 1) I won't be having any more kids, 2) it's a scam, and 3) you piss me off. I have enough crap to deal with without your phony input.

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com0tag:blogger.com,1999:blog-14850229.post-1125122778567094002005-08-26T23:05:00.000-07:002005-08-26T23:07:06.046-07:00

August 14, 2005New York Times MagazineA Second WombBy PAUL RAEBURNEven before Heidelise Als escorted me into the intensive-care unit for newborns at Children's Hospital in Boston, she began to whisper. Als understands, as much as anyone, that premature infants are fragile creatures and that even the smallest noise or disruption can overload their still-developing plum-size brains. Stepping gently

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com15tag:blogger.com,1999:blog-14850229.post-1124983625400489462005-08-25T07:56:00.000-07:002005-08-25T08:27:05.410-07:00

I'm constantly fiddling with the schedule and amount of food Susan gets through her g-tube. I can dilute or concentrate her formula for less or more calories per ounce, give lots of small feeds or fewer bigger ones, try to get most of her formula in her during the day (so she sleeps better) or during the night (so she eats better orally.) Trial and error is pretty much our only way to tell what

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com1tag:blogger.com,1999:blog-14850229.post-1124725690523793772005-08-22T08:00:00.000-07:002005-08-22T08:48:10.736-07:00

Over the last couple of months I've fallen into the habit of snuggling with Susan in my bed until she goes to sleep and I move her to her crib. Sometimes I just nap with her, since our night sleep is frequently interrupted and I can use the rest. But as much as I enjoy the snuggle time, she's been taking longer and longer to fall asleep, and it's impossible for anyone but me to get her down

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com1tag:blogger.com,1999:blog-14850229.post-1124646887878861182005-08-21T10:35:00.000-07:002005-08-21T10:54:47.883-07:00

Just about everybody who blogs about parenting has talked about Susan Torres, the 26-year-old Virginia woman who suffered a stroke while pregnant, and was kept alive on life support so that her baby would have a chance to survive.Naturally, I've been rooting for this baby. As terrible as the family's loss is, they have Susan's last great gift to the world to remember her by. My own Susan, as

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com0tag:blogger.com,1999:blog-14850229.post-1122692009188002492005-07-29T19:25:00.000-07:002005-07-29T19:55:56.906-07:00

Did you see this story about the T-Ball coach bribing a kid to bean a disabled kid on the team, so he wouldn't be able to play? Oh, where to begin. Obviously this guy is a total failure as a human being to place winning a T-Ball playoff game over the safety of a child, any child. I'm ever more bothered that the league has NOT suspended him from coaching pending investigation. Only if he's

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com1tag:blogger.com,1999:blog-14850229.post-1122573697993143312005-07-28T10:34:00.000-07:002005-07-29T20:04:40.820-07:00

Wow. Two days after starting this blog, an internet buddy pointed me to THIS ARTICLE in Brainchild Magazine about the exact.same.thing.The author's pregnancy and NICU experience were very much like mine. To the extent that I thought, damn, I wish I wrote that! Her son is older and has different issues than Susan, but her feelings about the stress of a sick child and the lameness of the Holland

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com1tag:blogger.com,1999:blog-14850229.post-1122517483174139062005-07-27T19:16:00.000-07:002005-07-29T20:03:28.466-07:00

Ha! After yesterday's bitch-fest about Susan's digestive problems, the Google Ad Generator is putting up links for Mylicon and Enfamil AR. Gee, why didn't I think of that? Mylicon, that will solve everything!When Susan starting eating from the bottle in the hospital she pretty much immediately had trouble. She'd take half the amount she was usually fed by tube and refused any more. Mylicon

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com0tag:blogger.com,1999:blog-14850229.post-1122432670126586412005-07-26T19:31:00.000-07:002005-07-29T20:02:33.670-07:00

Earlier tonight I was sitting on the couch, head in hands, crying in exhausted frustration as my daughter wailed through the monitor from her bedroom. Her dad was putting her down, as she was just as tired and miserable as we were, and even though she goes to sleep easier if I hold her, at the moment I just could.not.deal. The poor kid's been sick all day. I've been trying to introduce new

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com1tag:blogger.com,1999:blog-14850229.post-1122434698798447642005-07-26T08:53:00.000-07:002007-09-11T19:28:15.736-07:00

Susan E. came into the world in November of 2003, 12 weeks premature and weighing 15 ounces. Unbeknownst to me at the time, I had a pregnancy complication called pre-eclampsia that caused the blood flow through the umbilical cord to be restricted, limiting the baby's growth. The pre-eclampsia turned into a condition called HELLP Syndrome, where my internal organs began to swell and my blood

Nolahttp://www.blogger.com/profile/17132283871006639098noreply@blogger.com1