Mental Father

speech progress

2010-08-08T00:28:00.002-04:00

I'm a bit behind here, but Ella's speech has been improving quite a bit. For about 1-2 months she's been favoring word-approximation type speech over sign, although she still uses sign for complex word.

She's still lacking ability to create r, s, sh, ch, th, f, v and several other sounds, and her use of "t" is absent in many words. However, she is willing to try to approximate most simple words.

Her speech is quite broken, and would not be readily understood by many who aren't familiar with early speech. However she still gets her point across to us. Typical examples of things she says now are "I wah mo coh key" (I want more cookies) "hu guh key key" (hug kity kitty). "uh oh pah pee" (uh oh, potty), and of course lots of "yeah" and "no" (both of which are reasonably well formed and most people should understand her).

Intonation is another area we will eventually have to work on. Her current use of pitch is a little strange, and at times humorous. For the most part, she always pronounces a given word with the same pitch pattern. "ma mi" (for mommy) is always pitched low, then exaggeratedly high. "Wheee" is always pronounced in a flat dead-pan tone (this can be quite funny when she sees a slide, and races over to it saying "Whee" in a robotic monotone..)

While this level of speech may not be much, the frequency of her talking is what's really the big difference. 6 months ago she used words only as a last resort, or when specifically asked. Now she is using spoken word on her own to make requests, answer questions, etc.

She's also starting to speak at a much louder volume. Previously everything spoken was very quiet, but she now occasionally speaks loud enough to be heard clearly in the next room over. (talking loud, but not shouting volume).

Anyway, that's my quick update, hope you all are well.

fall school...

2010-06-15T08:27:00.004-04:00

Ok, I should have posted this last week after Ella's meeting, but oh well, I'm catching up now.

In any event, Ella will be going full-day in the fall. She'll attend an am preschool class, spend lunch with a MINC preschool class, then go into an afternoon pre-k.

In addition to all the extra school time, all of Ella's school-based therapists (PT, OT, SLP) are all increasing the amount of individual therapy time they will be giving to Ella.

This is good, as they're trying to really get her ready to go for kindergarten next year. She seems ready for the extra push, so we'll see how it goes.

2010-05-23T23:15:00.001-04:00

Sorry for the lack of posts lately, but life has been a bit busy, and a lot of Ella's progress has been evolutionary, not revolutionary.

On the speech front, we've seen a lot of little things, but there is real progress there. For example her "no" is cleaned up to a point where most people can understand it, as opposed to the broken "nah ooh" (pronounced as two separate words) that she started with. She is also using a crude "yeah" (eYah!), which is good because she can now answer yes and no questions verbally (this is quite handy when driving... quickly glancing in the mirror at a light to read ASL signs is not exactly efficient.) She's also picked up a few more word approximations and is saying things like "I Wah mo ". She's also gotten a lot more willing to make a real effort at pronouncing new words.

On the motor front, her climbing ability (and confidence to try) is vastly improved. She's now handling moderately complex playground obstacles like rope suspended bridges, rope ladders, vertical ladders of a few rungs, etc. She still doesn't have quite the agility of the average child her age, but she's definitely making good progress in motor skills.

When it comes to food, she's recently gotten out of her absolute refusal to try new foods. She's now eating some soft bread products (not just crackers/cereal), and even eating burgers (with the bun).

We've also got a planning meeting coming up in about two weeks for next year's schooling. I'll definitely have more to post about after that.

Speech, Ella's way...

2010-03-22T22:43:00.003-04:00

Ella continues to make good leaps and bounds lately, as we've seen ever since Ella got her glasses. She's speaking more and her motor skills are making good progress.

On the gross motor front, Ella's learned to make small forward jumps in order to hop her way across the floor. Previously she'd only been jumping straight up-and-down. This is good because it takes a lot more confidence and balance skill to jump forward than it does to jump in place. Her climbing is getting a lot better, but she's still behind in this area, but that will come in time with better balance.

Speech-wise, Ella is now up to using a total of 8-12 spoken words and word approximations, which vocabulary wise is more on par with a 16-month old than a 3.75 year old. Her diction is also pretty crude, again like the younger child.

However, one interesting twist is that Ella is already putting these together to make sentences, and also combining them with ASL signs. This is very amusing, because usually children with such a limited vocabulary only use single words. Hearing Ella very roughly say "Hep Meh" (help me) is an interesting contrast. Her speech ability is really basic, but it contrasts with her more comparatively advanced conceptual language abilities.

Of course, we're used to out-of-order development but it continues to amuse me.

Additional speech therapist...

2010-03-03T23:40:00.002-05:00

Last week we started taking Ella to see a private speech therapist, as a supplement to the school-based therapy she gets right now. So far she's had two visits, but these have mostly focused on evaluating Ella's existing speech in detail (using parts of a Kaufman Speech Praxis test).

This isn't to say the school system isn't doing a good job, but the school environment and private therapy settings offer different advantages. The school environment offers a lot of other kids her age to model from, as well as a mixture of both group and one-on-one speech therapy. However, neither of us are present at school, and we do not have frequent interactions with her therapists. This means that our at-home efforts are a little unguided and only sync-up with the school once a month or so.

The private therapy, on the other hand, is all one-on-one and there's no peers to learn from. However, one of us attends each session, and her therapist intends to start giving us plans for at-home therapy tactics.

Adding another therapist now also seems very appropriate. Since she got her glasses she's made a lot of progress in the "raw fundamentals" of speech. This seems to us (and her school therapists agree) to be a very good time to increase the intensity of her therapy and catch her up a bit now that she's starting to pick things up faster.

As for her speech progress, we've recently seen several new bits of speech progress emerge:

-she combines "hi" with a name to form a two-word greeting. (Hi Dada)

-she uses a lot more different letter combinations than before in her babbling.

-she's started jargoning where she's stringing together a stream of different syllables, rather than just repeating the same one or two. ("nabooka dooga aeee!" instead of "booka booka booka")

Of course, there's lots of things she's still having trouble with, such as sounds that involve bringing the tip of your tongue up (t, l, etc.), sounds using the teeth (f, v, th, s) and most sound combinations that involve going from an open jaw to a mostly closed one. But that's what we're all working on.

catching the blog up...

2010-01-31T23:45:00.005-05:00

Ok, first a little oldish news that I haven't relayed to the blog:

At a meeting with Ella's OT, she suggested that Ella may have depth perception issues, and we might want to take her to a developmental optometrist. We took that as good advice and the results were that Ella is severely farsighted (+7.5 d), and can't focus on things close to her. As a "stepping stone" the optometrist suggested getting glasses at +6.5 see how she does with them, and visit for a follow-up (which is coming up in a week or 2 now).

Now for the rest:

Since getting the glasses, Ella has greatly improved in several areas, particularly in motor ability. The ability to focus on things close to her has given her a better ability to traverse stairs, jump, and the confidence to run around. Her general activity level is also up quite a bit. It has also increased her attention span for hands-on activities etc. We also expect this will have a positive impact on her speech, as she'll be able to see the details of how we move our mouths and tongues while speaking. She still has some motor obstacles to speech (i.e.: she cannot curl her tongue upwards yet), but the glasses at least remove one obstacle.

Of course, we recently had her mid-term IEP meeting with her teachers, where we plan her education goals, therapy levels, etc. Unfortunately, all of the review was written before her glasses arrived, and some of her goals are likely to be rather low now that she can see better. On the upside, we've got another meeting to discuss summer semester soon, and her teacher mentioned we may amend her IEP at that meeting if needed.

brief news bits..

2009-12-16T23:29:00.004-05:00

Just a little quickie here:

Ella's been sick for the past week or so with bronchitis. However, she's finishing up a course of antibiotics, and it is clearing out now.

Ella also seems to be working on a speech approximation for "bye bye", although at this point it is little more than "buh buh". On the plus side, she's continuing with the use of ma ma, da da, and og (frog). She also frequently uses a spoken "I" mixed into her signs, and very rarely she says "Hi". All of this is really good news, as it means her spoken vocabulary is growing. In the past we've seen patterns where a new sound replaces an old one.

Ella has also taken to a lot of play activities that are good for balance and strength. Lots of jumping, bouncing, crab walking, etc. She's even starting to work on a broad jump, not just a vertical hop (I think this is her teachers in action, but I have not directly asked them).

Tech-speak device and speech news.

2009-12-02T22:27:00.003-05:00

Again, I'm a bit behind in updating the blog, but the holidays always make life a bit busy. So, with that asside, here's a quick update of what's been going on.

First, Ella's school has sent home a Tech/Speak device. This is essentially a board of buttons with pictures on them, and when Ella pushes the buttons, it speaks words. The hope is that it will make her realize that spoken-word can help her communicate with more people, thus encourage her to work on transitioning from signing to speaking.

As for speech, Ella's had a few new words/word aproximations emerge over the holiday. In addition to "da da" and "og" (frog), she's now using "ma ma" (which she had a long time ago, but disappeared for a year), and "ah ah ooh" (uh-oh). What seems most positive to me is she very quickly started using these words appropriately, because she already has the concepts of how to use language down from her signing. This makes me very hopeful that once we can break through the physical co-ordination of her mouth, she'll fall rapidly into speaking.

In any event, we all had a great Thanksgiving, and I hope you all did too.

Ella's follow-up appointment.

2009-11-15T22:10:00.005-05:00

This is a bit of old news now, but I'm just now getting around to blogging it. Back on Nov 5th, Ella had her post-op follow-up at Hopkins. They performed a fairly detailed check-up of her heart, and the placement of the device using both echo- and electro-cardiograms. The Amplatzer duct occluder is in-place, it's not moving, and it's not obstructing normal blood flow anywhere. To quote the cardiologist that did the procedure "It's hers now, she can keep it."

At this point, we've been given some very minor restrictions (i.e.: no dental work for 4-5 months due to infection risks.) and we're scheduled to follow-up with our local cardiologist in a year.

In general Ella has been doing really well. The day after the procedure (Thursday) she was still pretty sleepy, but she went back to school the day after that (Friday), and had a more-or-less normal day. She had some minor tenderness for a bit over a week at her hip where they inserted the catheters, but this went really well.

All is well.

2009-10-22T11:33:00.002-04:00

Just to let everyone know, Ella is home and doing very well. She's got a good appetite, when we got home last night she immediately spotted a bowl of goldfish crackers, walked over and stuffed a handful in her mouth. She's been sleeping a lot, but when she's up and about she is acting like her usual happy self. She doesn't seem to be in any serious pain, but was a bit fussy about me changing her bandages this morning. Even that was a fairly mild protest; she was whining about it, not crying or screaming.

At this point, I expect she'll be OK to go to school on Friday, although you never know for sure.

Ok so we are going home

2009-10-21T17:41:00.001-04:00

Things went well and the doctor has decided not to keep ella overnight

-- Posted from my iPhone

Proceedure done

2009-10-21T11:00:00.002-04:00

The proceedure is done and went very well. Still not positive she will stay overnight, but it is likely.

-- Posted from my iPhone

They are using the amplatzer

2009-10-21T10:25:00.001-04:00

They have decided to use an amplatzer, which is the larger device and Ella will likely be staying overnight

-- Posted from my iPhone

The are starting

2009-10-21T09:26:00.001-04:00

Ella is fully under and the catheters are in place. Next step they will inject dye into her heart and take xrays to measure the pda and determine what device to use. This will take about 1 hour.

-- Posted from my iPhone

Waiting waiting waiting

2009-10-21T09:07:00.000-04:00

We are now waiting arround the lobby. The nurse will call us 3 times with status updates as they proceed. I'll be posting those as they come.

-- Posted from my iPhone

In anesthesia

2009-10-21T08:36:00.001-04:00

Ella is currently in anesthesia. She is only mildly sedated and will be slowly taken deeper over the next hour or so.

-- Posted from my iPhone

On our way.

2009-10-21T05:48:00.001-04:00

We are on our way to the hospital. Assuming pre-op doesn't show she is getting sick, the heart proceedure will be today.

-- Posted from my iPhone

Surgery on for Weds.

2009-10-18T08:48:00.001-04:00

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..

2009-09-20T21:09:00.005-04:00

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..

2009-09-04T22:22:00.004-04:00

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.

2009-08-13T20:47:00.003-04:00

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..

2009-07-26T23:34:00.002-04:00

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..

2009-07-08T20:51:00.004-04:00

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.

2009-07-07T01:17:00.003-04:00

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...

2009-06-13T13:59:00.004-04:00

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!