For us, who follow Ella’s development constantly, it is very difficult to see any change. Ella’s development is painfully slow and each step along the way is prolonged and laborious. When friends, who haven’t seen Ella for a while, come over they always remark on the amazing progress she has made. That of course is very encouraging. On a day to day basis though, progress does not always seem part of the picture. Recently, several new things have been added to Ella’s care. She has a new brace to help keep her hand and wrist from constantly contracting as it naturally wants to do. The hope is that if her hands is held open she will use it and her arm more and maybe put some weight on it in helping her support herself.

In a periodical eye exam it was determined that her vision in her right eye has improved, yet her left eye has not. She has also started developing a wandering left eye. This , they say, is fairly typical with kids who have a reduced field of vision. It is a trick to gain a little more field of vision. It does cause the eye to wander however. The result is that Ella now wears a patch on her left eye for 2-4 hours a day. It doesn’t seem to be bothering her all that much and I was pleased to see that she functions ok using only her left eye. Lastly, even though we have been fighting with the insurance, and tackling the bureaucracies, we have yet to see a stander or ‘Gait Trainer’ as has been ordered through them. We have managed to organize through friends and helpful organizations an old (and a bit too big), stander that we can use for the time being. It looks amazingly uncomfortable. We strap Ella in, her movement is restricted in all but the upper part of her body. She isn’t happy. The trick is to distract her. If we put on a movie that she likes we could more or less hang her upside-down by her toes and as long as we don’t obscure the screen… She’s ok. So that is our tactic with the stander. She tolerates it as long as the movie is running. Vocal developments include ‘nuh, duh, luh’ and the biggest is that I actually have a name. It is ‘Click’ Any time I enter the room or she notices me we exchange clicks. This is specifically for me and we concluded that is my name. Ella’s dexterity is improving in handling her toys and her food. She is more accurate and more deliberate. She also wants more attention. This is, as therapists say, ‘Age appropriate’ She wants us around and lets us know it. She has started accepting drinking from a glass. First you need to show her that what is in the glass is something she likes, and not the sulfuric acid we often try to slip her. Once that is ascertained she will gulp it down, though only about 20% actually make it into her. The list of things she is ready to eat has expanded a bit (really just a bit), with chicken and potatoes, sometimes cheese added to the approved list. Some new games were developed recently which she delights in. One is where you bring your head close to hers but not touching. Ella will bring hers closer and touch yours accompanied by giggles. She responds much better to the ‘where is Gaul?’ ‘Where is Chamlo?’ questions and will almost immediately turn to the right direction. Her walking or talking seem to be so far off as to belong to another species. As of now, she isn’t crawling or moving herself around in any way. (Strangely, when she is asleep, she effortlessly turns from one side to the other to snuggle just right, when she is awake, the same motion is much more laborious). On the other hand, I am so amazingly proud of her. Every single thing that she does, she did on her own. She got no shortcuts or easy helpful handouts. In fact she didn’t even get standard capabilities issued to everyone else.

So there!