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.

moving up from the MINC program...

Originally it was a judgment call between putting Ella into a MINC-T (multiple intense needs class for toddlers), or putting her into the normal special ed toddler class. Ultimately, the MINC was chosen to afford Ella extra therapy time, and a smaller class for her first school.

Recently, the paperwork was done for Ella's school starting this fall. For age reasons, she's going to be moving from toddler class to preschool class. Given how well she's been doing in the classroom, and how well she socializes with other children, the staff recommended that Ella move up from the MINC program to the normal special ed preschool. We've decided to go ahead and do that.

This does mean Ella's one-on-one time with school therapists will be going down, but it also means the class activities will be more challenging for Ella, and provide her with better opportunities to advance on her own or from her peers. With her current progress in motor and social areas, I think this is very important. She's also been babbling back-and-forth with her peers, and this class is also likely to have more students in it for Ella to "talk" to.

This isn't terribly fresh news, as we've known about it for a while, but the paperwork was finalized this past week, so I figured it's past due to put it up on the blog.

Go Ella Go!

Blowing bubbles..

After recently figuring out how to purse her lips to blow on things with a focused stream (instead of just going "Ha" at them) over the weekend, on Tuesday Ella figured out how to use this skill to dip a bubble wand, pull it out and blow bubbles.

It's not a huge step, but it's progress in her oral motor skills, and her application of them. Since that's an area where she's been progressing very slowly, this makes me very happy.

slow but steady progress

I haven't posted in a while, mostly because nothing "unusually exciting" has happened with Ella lately.

Of course there's lots of small cute things she does every day, and perhaps I should make a point to post more of those. Thinking of that, here's one now:

A couple of nights ago, when Ella got in bed after her bath, she started giggling and shaking her head all over the place while laying down. This, of course, made a giant mess of her freshly combed hair, and I commented "Oh, you're going to be fuzzy tomorrow". She immediately stopped, looked at me, and started stroking my beard. "Yes, fuzzy, like daddy's beard". It was immensely cute.

As for progress, Color wise, Ella's starting to get the hang of identifying and signing black and brown, although these are still a bit rough and she'll sometimes label black things as being brown.

Motor wise, Ella's continuing to get more confident and bold climbing on play structures, stepping over things, jumping, etc. It's all very gradual, but looking back at even a month ago, her ability to navigate barriers is much smoother now.

On the speech front, Ella's continuing to babble, and it's still mostly "Da". However we are starting to get her to vary the sounds a bit. She's sometimes distinguishing vowel sounds to make word approximations. Most of the time it's all just "da" or "da da", but sometimes she'll intentionally shift towards "eh-da!" (ella), "die" (bye), and rarely she'll even make a little twist towards "Dahn" (done) although it's still more like "Dahd".

We've also recently seen a return of B and R sounds, although these are rare just like "tooka" "Ha" and "Ga" are.

At any rate, I hope you all are well! Hope to see you all soon.