April- A Month of Ups and Downs...

We met with the neurologist this month to discuss Tori's latest EEG.  This time her reading was "messier" than any previous ones, although it is also the first time she slept through an EEG, which could be the cause.  The good news is that neuro does not believe Tori is having seizures due to fact that she is doing so well cognitively. This would not be happenning if she were having enough seizure activity to cause regression.  The bad news is that she still had the regression, most likely due to other changes she was going through at home.

Ok, it was time to take action and get Tori back on track.
Although Tori has much more stability when standing than just a few months ago, it just seems like we should be doing more to get her moving.  We are scheduled to see an orthopedist at the end of the month to decide what type of braces to try next, although we already know they will be larger. . In the meantime, we have been doing everything possible to encourage her to walk more with her walker...including buying her some new shoes! (what girl isn't motivated by shoes!!) This might have done the trick.  In the past two weeks, Tori cannot get enough of her walker.  She will literally spend 45 minutes just walking back and forth through the living room.   Tori totally took to the catwalk last week at daycare when she used her walker and practically ran from one end of the building to the other. Nothing could slow her down!!!  As if that wasn't showing off enough, when we stopped to give her a rest, she showed us that she could stand on her own for 30 seconds without holding on to anything.
Now that she has shown us what she is capable of, look out! Her therapists are starting to work with her more aggressively, which even included putting her on a treadmill at therapy!!

-Tori bookin it at daycare-

-Tori on the treadmill at therapy-

Another area where Tori had regressed was language.  In the beginning of the month she was still not attempting many true words. Yes, we knew Tori did not have the speech that she should for her age, but reading her most recent speech evaluation was disheartening to say the least.  "Tori suffers from a severe language delay and has no true form of communication."  It still feels aweful even to write this.
I guess it is much worse on paper than dealing with Tori in everyday life.  Receptively she is just soaring!  She seems to understand everything you say to her, which is proven by the fact that she will often follow orders (when she wants to!!).  I just can't imagine how frustrated she must be not being able to tell us what she wants, plus I'm wondering just how many times she IS telling us things and we just don't understand what words she is trying to say. It was time to be aggressive and start augmentive communication immediately.
Because Tori's issues with fine motor skills sometimes make it difficult to use sign language, we have decided to use the PECS system, which stands for Picture Exchange Communication System.  We are still in the very early stages of this but have heard great things about it.  We are still very hopeful that Tori will develop speech, but would like her to have a way to communicate until then.

I'd like to end this update on a good note, so I will say again just how Tori's cognitive development has been through the roof!
Here are some examples..

-This is Tori listening to mommy tell to her to the plate on her head- (at that point I wasn't even sure if she knew what a plate or her head was, but she did it on her own!!!)

-Tori feeding her baby- (I literally took the doll and bottle out of the box and handed them both to her- and this is what she did!!)

-As adorable as ever!-