May 31, 1925 to November 20, 2008

Earlier this evening my Dad passed away. Although Daddy had been diagnosed with Alzheimer's disease quite a few years ago, we were very lucky that he knew us all until early this year. Daddy smiled more than anyone else I know, could laugh at himself and was a truly kind and decent man, who never thought of himself first. His was a life well lived.

Daddy was devoted to Eliza and I am grateful that they got to spend so much time together. Eliza will always know who her Papa is. Daddy will be missed more than I can say.

PreSchool

It's that time of year in New York City when parents of two year olds embark on the pre school application and interview process. Yup, your two year has to be interviewed before being accepted to one of these schools. For around $20,000 a year your toddler will spend 3 one-half days (that's about 9 hours a week) hopefully learning to color in the lines (unless it is a more progressive school that encourages individuality and prefers that your child colors outside of the lines). You can learn about their different separation policies which range from the somewhat barbaric drop the toddler off at the very swanky rococo gate (think Rodin's gates) to the more touchy-feely method where you bascially get to stay and attend pre school yourself for the first 6 weeks. This latter drop off method works well for parents who themselves were denied the thrill of attending pre school.

After attending three open houses, I have decided this is not going to be in Eliza's future. (As an aside, attending only three open houses makes me a complete slacker since most of these parents are applying to anywhere from 7 to 14 preschools.) At the schools for "typically developing" children (this is new euphemism we use to differentiate "regular" kids from kids like Eliza who are delayed) people looked at me like I had ten heads when I dared to inquire if they had any children with special needs. One parent asked me "what languages Eliza was working on." I had no earthly idea what she meant and she informed me that her son had a Spanish and French tutor ... at 2.5 years old. Huh. Who knew. I advised I was focusing on English with the hope that Eliza would consistently say her name by the age of three. I also let her know she could get free Spanish tutoring from Dora and Diego. She was not amused.

Then, like Goldilocks, I ventured to the schools with "inclusion" programs. These have a ratio of about 70% "typical" kids and 30% "Eliza-kids." After seeing a coupled of those, it was pretty apparent that they cannot offer the level of services that Eliza needs, particularly in her speech and communication and occupational therapy.

I finally decided to look at a school that services 85% "Eliza-kids" and 15% "typical" kids. It was a beautiful school with wonderful sensory gymnasiums, great community activities for the children, classroom ratios as low as 8 students to 1 special education teacher with 2 teaching assistants. There is a full time registered nurse, and the staff actually knew what a feeding disorder was! The school program is a full day (9 to 2) 12 month program, with various 2 week vacations. Eliza will be eligible for bus service so that will eliminate the concern about getting her to and from school in the bad weather.

So, like Goldilocks, I think I have found a school that is just right. I am a little sad that Eliza will not be in a "typical" school, with a "typical" day. But I am happy that I think I have found a place that is just right for Eliza ... where she can be "typical" in her own special way and where she will be given the opportunity to flourish instead of getting lost in the shuffle of this pre school madness.

Random Photos

Halloween may be over, but who says you can't "re-purpose" your Halloween bucket:



One of the best spots to snooze ... although Bosley has only begrudgingly given up his spot on Nana's lap.



Eliza enjoys a good book like all of us, but her preferred reading spot is this little corner on the end table:

Finally a Decent Report Card

I had a nice surprise today when I got the following email from Eliza's speech-feeding therapist about today's session. Eliza attended with Joyce her new nanny and BFF since I had to work (still waiting for the winning Lotto ticket). I don't think I have ever received such a nice report on a feeding therapy session:

Hi Anne,

Eliza had a great session with me today! She ate 2 goldfish and “crunched” on them with her molars- showing me the bites she took. She took a small bite of a grape, took the skin off of it, and ate the remaining piece. Then she took two licks of the applesauce with her finger. She didn’t particularly like the applesauce (not sure if she likes cinnamon?) but she was interested in it. Also, she took a bite of the cracker and then spit it out because it was too big of a bite. But most importantly, Eliza went through the entire session without ANY tantrums, climbing out of the chair, saying no, or swiping things off the table. It was a great session!! I’m really starting to see a huge difference in her demeanor and it can only mean positive things! I told Joyce that the session went really well and she was happy as well. It’s great that Joyce is on board with helping Eliza!!

Thanks!!

Vanessa

The Best Milestone

Today Eliza said "I wub you Mama" for the first time. Eliza may not be able to say her name or any other three word sentences, but I really don't care since she can say the most important sentence of all.

Just One More Doctor

Today we went to see Eliza's new GI. Her old GI, who I liked, has moved and is now at Yale and an almost 3 hour drive to see him just seems to be a bit much, especially when we live in NYC, land of doctors. But I suppose seeing someone new may not be such an awful thing. I am just not a fan of change particularly when it is a change I haven't asked for or sought out.

At this practice you see a resident first to give some basic updated info and then you see the doctor. The new resident seemed pleasant enough but was a little put off when Eliza decided to pee on the floor. I'm thinking that if a toddler peeing on the floor is alarming, then pediatric GI may not be the specialty for you given how many bodily fluids are involved in that practice.

So as I suspected the new GI asked me no less than half dozen times if I wanted her to put in a G-tube or an NG tube. I explained, no less than a half dozen times that I was not morally opposed to a G-tube if Eliza was being medically or developmentally compromised but that absent that I was not thrilled with the notion. Given the severity of Eliza's sensory issues, in that I can barely wash her face, let alone tape something to her face, the GI conceded that a trial with an NG tube would be useless unless the tube was inserted and removed after each feed. As a single parent with no one to hold Eliza down for the insertion of an NG tube, I just don't see how that would work unless I hired a nurse or Hulk Hogan to come here several times a day to hold Eliza down for the insertion and the subsequent feed. Eliza, I am sure, would be more than helpful in the removal of the tube.

So we have decided to start from scratch to see if we can find a medical reason for Eliza's refusal to eat any kind of solid food and her limited volume intake of formula. I am sure I looked at the doctor like she was nuts when she asked me "are there any foods Eliza consistently pushes away?" Hmmmmm ... other than some yogurt, ice cream and goldfish (tails only) she pushes all food away.

Eliza's prevacid is being increased from 15mg every other day to 30mg a day. Eliza is scheduled to see the allergist to get tested to see if there is something that was missed on that front. If the prevacid doesn't help and if the allergy tests come back negative then we'll look into Delayed Gastric Emptying again and try some out patient sessions at St. Joe's. Eliza will also get another swallow study since she has been choking a bit on anything more "solid" than yogurt or ice cream.

For those of you who have been following our little blog here, you are not crazy nor are you having deja vue. We did all of this 18 months ago. But since Eliza is eating less than she was 18 months ago the thought is that maybe something has happened or developed in the past 18 months that has caused her food refusal to worsen.

And for anyone who has been following Eliza's "stats" she is 23 lbs 8 ozs which is a whopping 4 ounces more than she was in June of this year and she is 33.5 inches long, so virtually no change since June.

I did get a good chuckle a few days ago when someone was telling me how "huge" Eliza was. After me explaining life under the 3d percentile, the person looked at me and said with astonishment "oh, I thought she was one and a half, not two and a half." Great!

Halloween was a bit of a non-holiday once again. Last year Eliza was in the ER with dehydration the day before Halloween and this year trick-or-treating was curtailed by some surgery (me not Eliza). But we dressed up the little miss and got the camera out and once again thanks to Peter, our very favorite photographer, we got some great photos of Eliza. I know she looks like a Medieval barmaid (or the St, Paulie girl according to my friend Ann Marie!), but she is supposed to be Mary Had a Little Lamb. She refused to wear the hat or carry the staff and the lamb was mostly thrown across the lawn. But a fun time was had by all.

This is supposed to be a fun holiday?



Ack! Where did this lamb come from? If you remotely know me then you know I HATE stuffed animals:



Toddler Lamb Toss:



Let me just kill this thing with the utility company flag spike:



Maybe if I just kiss the damn lamb they'll get me out of this "bar wench" costume:

Big Foot

So I guess Eliza's oral aversion does not include sticking her own feet in her mouth. You've got to give her extra points for flexibility. And yes she does have quite the set of boats, which come in very handy when she is walking on the balance beam in PT.