Charlotte's Journey Home

Just a Regular Kid, Sort Of


1 Comment

One Day Later

“Harlotte wearing Mommy’s sunglasses” (That’s what she calls herself. That or “you.”)

Okay. I know I can’t declare success after just one day. And I certainly can’t declare success when Charlotte drank only about 65% of her Pediasure today.

But, hell, SUCCESS!!!!!!!!!! At dinner tonight Charlotte (1) willingly went to the table (2) ate four ounces of (pureed) refried beans by herself. She took the spoon from me and insisted on feeding herself. And…(3) on the way home from a playdate this afternoon she ate thirty or so Cheerios and three Teddy Grahams. She asked for them.

Yeah, she vomited after/during lunch. She was really congested. But, really, today was a sea-change.

Advertisements


Leave a comment

Reaching Astonishing Heights A Feeding Clinic Update

Charlotte and I made the trek to Milwaukee in time for a 10:00 a.m. appointment this morning. Despite the fact that I thought I would nod off in the car, we made it on time and in one piece.

Of course, the team was running a bit late. But, as they always tell me, their schedule is a “best guess” as they deal with in-patient and out-patient kids.

Get to the astonishing height, already,” you’re thinking, tapping your foot. Here it is, Charlotte measured 37 inches. Yes, 3 feet 1 inch. She had lost about 100 grams, but given her growth no one was worried about it.

The concerns we took to them:
–Mealtimes have turned into mini-battles again. She screams “no eating” and runs from the table when we tell her it is mealtime.

–Her Pediasure consumption seems to have decreased back to 65-75%. (I say “seems” because I haven’t put the amounts into my spreadsheet in a while.)

–We’re seeing at least one large vomit daily.

–Feeding Charlotte four times a day is beginning to take its toll on me. I end up in tears several times a week or I yell at Charlotte. None of this, of course, is good for Charlotte.

The team’s response and strategy:

–We’re reducing Charlotte’s Pediasure intake from 800 mls. to 600 mls. per day. This will allow me to feed her only three times a day. Woo hoo!

–We need to assure that she gets an additional ten to twelve ounces of liquid daily to keep her hydrated.

–We need to get four hundred to five hundred calories of solid food in her each day.

As I have mentioned before, there is still the possibility of Charlotte and I going in-patient for what I call “feeding boot camp.” (I’m sure the Feeding Team calls it something much nicer and more clinical.) She’s been on the wait list for about six months. We’re planning now for a January or February admit depending on the progress Charlotte makes between now and then and, of course, on whether our insurance approves this plan.

In-patient So, I’m imagining a hospital-studio apartment, something a little cozy, with a one-way mirror (for me to watch the clinicians feed her and vice versa). I’m thinking a carpeted floor, playroom, etc.

Here’s the reality: A large, private hospital room with one bed. Mom or Dad get to sleep on the pullout chair (so good for my dysfunctional SI joint and insomnia). I can watch television in the room while she sleeps (yeah, right). There is wifi and a parent resource room. There is Child Life which may have a playgroup. We’re confined to the hospital for two weeks.

If we need to go, we’ll go. Philippe will come up for weekend(s) and, hopefully, we’ll get a room at the Ronald McDonald house so we can alternate who sleeps in hospital. (Or, we’ll get a hotel room.) I teach on Thursdays in the spring, so Philippe would come up on Wednesday and switch with me to the night. I’ll watch DVDs on my laptop and read the three Harry Potter books I haven’t read yet. And maybe War and Peace. Or maybe I’ll get some manuscripts ready for submission. I’ll blog. A LOT.

We’ll work it out. We always do.

Stay tuned. Maybe it will all be a moot point.


Leave a comment

21 Years Ago Today

Twenty-one years ago today I was in Providence, Rhode Island, visiting some friends before our senior year of college began. We went to a movie (Ferris Bueller’s Day Off, I’ll never forget) and when we got back to their apartment there was a note on the door:

“Ilene: You’re an aunt. Julie Samantha was born at….”

(I don’t remember the exact time or her birth weight).

Wow! My first niece, or niecelette as I called her because she was to tiny. By the time I got in the car and drove back to NJ, she was already at home. I remember how scared I was to hold her–she was so tiny, new, and fragile.

And now? Well, now, she’s twenty-one and just back from a summer internship at The Onion in San Francisco. She’s pledge mom at her sorority and president of the public relations club at her college. It seems like just yesterday she was a mop-headed toddler crawling around at my college graduation.

So, from my mop-headed toddler to the original niecelette, by special request:

Happy Birthday, Julie!


Leave a comment

The 52nd Annual Gold Coast Fashion Show


Here it is folks:

52nd Annual Gold Coast FashionAward Show

Friday, October 5, 2007

11:00 a.m. Cocktails

12:00 noon Luncheon

1:00 p.m. Fashion Presentation

Chicago Hilton and TowersInternational Ballroom
720 South Michigan Avenue
Valet parking is available

If you’re in the Chicago area and you can take a long lunch, follow this link to the online invitation to the 52nd Annual Gold Coast Fashion Show, produced by the Children’s Service Board of Children’s Memorial Hospital. (If you’re not in the area, please feel free to make a hotel reservation and join us.)


Leave a comment

Recognizing Talent

I think Charlotte is a musical genius. Okay, maybe I’m engaging in a bit of hyperbole as my college buddy Michael might say (He has a really big vocabulary! I’ve added a link to the definition for my brother who has an equally large vocabulary, but chooses to make fun of big words!).

But, seriously, Charlotte spends a total of thirty to forty minutes a day playing her piano. She makes up tunes, some of which uncanningly resemble a couple of the French nursery songs we sing. More on piano playing later.

What I really want to talk about is Charlotte’s percussion talent. As you can see, she’s a natural. I’m thinking that instead of being a child model, she can be a kiddy street drummer!


1 Comment

Cardiac Update

Charlotte saw Dr. Young on Friday for her 6-month cardiac check up. Dr. Young was delighted with her progress. The short version: nothing has changed since the surgery, meaning that all of her blood flow is adequate, her TR velocities are as expected, and (best of all in my book) there is no regurgitation in the new valve.

She has been officially taken off of Lasix and aspirin. Good thing about the aspirin since I forgot to give it to her most of the time.

Dr. Young sent us home with a halter monitor to get a 24-hour read of Charlotte’s heart. Here is a picture of the halter monitor (or as Charlotte calls it “little monitor”) in it’s “disco bag.” And here is a picture with the 5 leads. Charlotte had to sleep with this. She only complained when we took the leads off because the glue was painful to remove. And she’s still talking about Pauline, the technician who put the little monitor on. We’re not really sure if the reading worked because Philippe noticed on Saturday that Charlotte figured out how to push the only button on the monitor, the on/off button! I guess the hospital will call and let me know. Little urchin.She is 13. 4 kilos and 93 cm., both measurements up enormously since the surgery. Prior to surgery she weighed 11-something kilos. She’s gained 6 pounds since March and grown +2 cms. She’s pretty tall.

Charlotte amazed me at her check up. She did not cry at all. She stuck it out during the EKG, including the tough part of pulling 10 super-sticky tabs off of her chest. She stared at her red glowing toe while we took her pulse ox (measure oxygen in the blood taken through a little monitor affixed to her toe); and she lay perfectly still (seriously) for 45 minutes during her echocardiogram. It was as peaceful and relaxing as a trip to the cardiologist with one’s two-year old might be.

Next visit in six months.