Surgery on for Weds.

As of this morning Ella is healthy and not sick in any way, so we have begun her pre-op asprin therapy (as directed by her surgeon). Assuming she stays cold-free we'll be on for Weds am.

I am also testing the Iphone app I'll be using to post from the hospital.


-- Posted from my iPhone

Surgery delay, potty training, and general updates..

Ok, first, Ella's surgery (that was supposed to go off last Weds) got rescheduled for October. Earlier last week she came down with a cold, and that added unnecessary risk to the surgery. (mostly because they need to put a tube in her throat during the procedure, and that doesn't mix so well with coughs and inflamed throats).

On the progress front, this weekend Ella spent all of her awake time in regular underwear, and had no accidents all weekend! She's actually very happy to be in underwear now, so it looks we're breaking through the PT barrier that the flu put in our way last winter. (we almost had her daytime PTed, but then a flu or flu-like illness struck, and Ella became afraid of underwear.)

On the speech front, Ella continues to chatter babbles at us, and continues to be quite prolific in it. She'll now say "I" and "Hi", although the distinction between the two is blurred. She'll also occasionally form "Doga" for Dog. Her babbles include "Da", "Dooga", "Tka/Tooka", "Ga", "Ra", "P", "Ba", "Ha", along with all (or nearly all...) the vowel sounds.

Anyway, just wanted to get a little news up on the blog, hope you're all well!

Oh the many sundry things..

It's been a long time since I've updated how Ella's doing, so here's some quick general bits..

Talking - Ella now occasionally uses a few crudely formed words with purpose. However, she's more inclined to use them as general bables than with any purpose. The most notable exception to this is saying "I" in the middle of signing "may I be excused".

Eating - Ella is doing really good with self feeding, and can now spoon her own cereal out of a bowl. She'll also pick up and bite chunks out of food that she strongly likes, such as fries and nuggets, although less favored foods still need to be cut up for her.

Motor - Ella's gotten pretty good at jumping (over, and over and over again) in-place in little short hops, and getting on and off her tricycle. Her motor is generally doing pretty good, although she is a little bit behind her peers in more ambitious climbing and balance adventures.

School - Ella went back school this past Thursday. She's now in a preschool class instead of a toddler class (higher age group) and is now in a regular early-childhood special ed program, not a MINC (higher development level). The later means that she's not with any of her former classmates, which is unfortunate, but she's doing fine with it.

Potty - Well, we're still working on this one. Ella does pretty well at using the potty, but her enthusiasm for wearing underwear instead of diapers varies wildly (often very resistant to wearing one or the other, usually wanting the exact opposite of what works for the planned day)

Anyway, hope you're all well, I just wanted to get a quick update of how things are going.

Heart procedure - scheduled for Sept.

MentalMother, in a bit of role reversal, posted a very lengthy and detailed description of all this, so to continue the reversal, I'm going to post a brief note.

Ella is now scheduled for a procedure to correct her PDA. As heart procedures go, this is a relatively minor one, and overall is similar to the way they put in stents for heart disease, but this is closing an artery near the heart rather than opening one.

The whole thing will take place as a non-surgical cardiac catheterization type of procedure on September 16th. She will be under general anesthesia for this (good luck getting a 3 year old to lay still on a table for 3 hours, much less while poking around the heart!). During the procedure they will perform some detailed x-rays with contrast enhancers, and decide what size or type of device to place in her heart to close the ductus. If the ductus is small enough, they will use an embolyzation coil to close it, in which case she will likely go home late the same day as an outpatient. If it is larger they will use an Amplatzer duct occluder, in which case she will say overnight for observation. (note: neat videos on the Amplatzer).

Either way she should be back in action after a couple of days.

Overall, it's good news for us that we can use the catheter procedure, as this eliminates the potential need for conventional heart surgery.

Eating progress..

Recently, we've had some progress getting Ella to eat new foods. A lot of this has just been overcoming her toddler instinct to reject any food that is unfamiliar to her, which is pretty typical at her age.

However, some of this is due to her texture aversions. Ella really doesn't like to eat bread products very much, but recently she's started eating sandwiches if they're cut up and put on a fork. Her teachers have a theory that the texture aversion is actually not liking the rough feel of bread against her lips, which is what lead them to try putting it on a fork. This weekend, I took that a bit further, and got her to eat the top of a corn muffin by breaking it up into pieces she could pick up and stuff in her mouth.

yay for new frontiers in cuisine for Ella!

Cardiologist results..

As her mother already mentioned, Ella visited the cardiologist today.

Again they did an EKG (which she screamed at me through because she did not want to lay still) and an echocardiogram (which she was fairly good for). The results are fairly good, or at least as expected. (edit - fixed electrocardiogram to echocardiogram)

Her PDA is still present, but her left ventricle is now a tiny bit enlarged, but there is no damage to her heart or lungs. The enlargement is too slight to be harmful anytime soon, but it is a sign she's going to need a procedure to close the PDA at some point. We've been referred to the doctor that performs the cauterization, and he'll take a look at her. If he deems she's a good candidate for the catheter procedure, she'll have it this year, or the next, depending on how he feels about her size. If she's for some unusual reason not a good candidate, she'll have conventional surgery sometime this year.

This is all pretty much what we expected based on last year's visit.

Anyway, just wanted to share the news that Ella's still doing OK, but will be getting a procedure sometime in the next 18 months or so.

signs and a heart full of love.

I've updated Ella's list of sign language signs (google docs link in links section), and we're now up to 141 signs that I've documented. She's also getting pretty reasonable at 2 new colors, black and brown.

Also this Wednesday, Ella has a cardiologist visit to check on her PDA, and to see if she's going to need a corrective procedure for that. Last time she saw the cardiologist, they told us it was likely to be necessary at some point, but it wasn't anything significant, but that was a year ago. Fortunately it is likely to be a catheter procedure, not a surgical one, if it is necessary at all.

Regardless, wish us luck.