Ella is two! It is quite amazing that it went by so quickly. On the other hand if I think of all that we have been through with her… It is surprising that it has only been two years. We had a really nice birthday party for Ella. Our friend Diann, who volunteers as a clown in a hospital brought over two of her clowning companions and they put up a show for all of us. At first Ella took one look at the first clown that came in and burst out crying. She calmed down later and seemed to enjoy all of the commotion. This could be seen as an a good sign, Ella’s recognition that clowns are not a normal thing and that something is wrong here. Her assisted standing is getting better. We prop her up in a variety of ways, against our knees, against the big orange ball, against a sofa back. She then manages to hold herself erect almost by herself for several minutes. It is still very far from standing, but it is very encouraging to see her in that posture and imagine what it will be like when she will actually stand. At times she looks around proud of her accomplishment from her towering hight. Ella’s feeding has both improved and become more frustrating. The improvement is due to the fact that she now feeds herself completely. We place her plate before her. It is a divided plate and each section has a different type of food. She requires no intervention from us and will make that food go away.

Here comes the frustrating part. A large part of how she makes the food go away is in the manner of nutritious projectiles. This we understand is ‘age appropriate’, but since Ella is so special, couldn’t she just skip this phase? The sorting algorithm she uses is beyond modern science. One piece of cheese is examined briefly and then flung across the room. An identical (to our ignorant eyes) piece is then inspected and devoured efficiently. The end of each meal is an Ella no longer hungry and a dining room looking like it just got a distribution of Manna from heaven (some chewed though). Hopefully this phase will be over soon. We are trying to work on getting across the concept of ‘No’ . At this point I am not at all sure that concept is clear. (we suspect it is sometimes interpreted as ‘if I do this then you make that cool NO sound and get all red in the face’) On the medical front, yesterday Ella had her periodical CT scan. This is intended to see any signs of pressure in her brain and try and evaluate whether the shunt is doing its work. Quite amazing that in 2003 there is no way to know what the pressure is and it has to be guessed by circumstantial evidence such as comparing old and new CT scans. Well, even though the shunt was adjusted down every time we went (for the past 9 months) the ventricle has remained the same size. This can indicate that either the shunt is not regulating the pressure to the setting it was set at, or that it is, but Ella needs a lower pressure yet. Following my insistence they will today perform a ‘shunt tap’ to actually measure the intra cranium pressure and find out. I am hoping it will be scenario #2. The shunt is working as expected but Ella needs a lower pressure. Otherwise if it is not the case, something would have to be done to fix the shunt’s operation. We will see today. As far a communications goes. Ella is making progress. She cooperates and tries to say the things we insist on her saying before giving them to her (bottle, swing, music). Her sounds don’t always match our version of the language but who are we to decide which is the real language.

Anyway… Happy Birthday Ella! We are very proud of you.