In contrast to Etan (last entry), I find that Ella is more frequently willing and able to assert her likes and dislikes which she very clearly has. She has perfected her ‘no’ and was practicing last night when I tried to get her to eat some of the broccoli quiche that Netta loved. She was okay with the crust but when I tried to get her to eat the filling she turned every-which-way, pushed me away and said a very strong ‘NO’, ‘NO’, ‘NO’. Also, she certainly doesn’t like to walk in unfamiliar directions (like in most of the time in Spain) and can drive one nuts if the stroller is in sight by having what can only be described as a meltdown. As I often say, she’s learned this technique well from a master (Netta).

Ella’s speech is taking off. She surprises us every day with her ability to say words. Thing is, she often doesn’t repeat them in the subsequent future. The day before yesterday she was saying a perfect ‘button’ and she does very well with a computer game that Bethh has developed for her where she must name the picture before she can move on to the next. She knows so many words but it is clear than they don’t necessarily make it to her lips when she wants them (They may be stuck on the edge of her tongue). Anyhow, now we face the significant milestone of Ella going to kindergarten. She is eligible to start next year but we asked the school to ask the state for a waiver to keep her back a year.

A few months ago I was totally convinced that this was the right thing to do, now I am not so sure because I kind of like the idea of her moving on. But, we haven’t received an answer yet and Etan feels that she should stay back. Obviously, she isn’t up to her peers in development…the thinking is that if she stays back she’ll be just that much more caught up by next year. But, I guess I believe in change and I trust the school system will do a good job either way. She has made so much progress these last two-three months that I think she’d benefit from being in as typical as possible an environment.

Ella handles travel surprisingly well; she adapts easily to the new environments, has no problem sleeping in strange places and loves the airplane. Her travel activity on planes can be very disconcerting to anyone else and it certainly is to us it consists mainly of flipping the in-flight magazine back and forth for hours.
She seems content with it for us it is a reminder of her problems. She seems excited by new places and activities and hardly ever gives us a hard time, maintaining her cheerful disposition. That is still a wonder to me. Ella nearly always wakes up smiling, jabbering cheerfully, very, very differently than everyone else in the house. Things are basically alright for her, if she is complaining there is generally something wrong. Not a whim or a bad mood, Her brace is hurting or she is hungry, when the situation is corrected she is fine again. Lets go.
She has been willing to try more different foods and that also makes it easier to travel with her. Going to restaurants is usually not an issue. She will also walk considerable distances as long as she does not see the stroller. If she does that is it. So we usually have to make a decision ahead of time. Stroller or not.

In our last trip to Spain we discovered gawkers are a universal race, not limited to national borders, age or dietary preferences. Everyone gawks when Ella goes by, you would think this would make us proud as parents. Surprisingly it doesn’t. There are different types of looks, the ‘oh my god did you see her’ type, the ‘I’m going to pretend I am not looking but sneak a peak’ look and the ‘check that out’. Of course there is the outright ‘I will just stand here and look at you’ style mostly adopted by the younger generation.
Ella doesn’t seem to notice or mind, a fact that both comforts and disturbs me.

Ella’s relationship with Netta has become more involved. There is a symbiotic control issue going on with Ella grabbing Netta and Netta playing along by staying close by and allowing it to happen even though she could easily avoid it by either moving away or by swatting Ella which she could easily do. Occasionally they role play by pretending they are both dogs and barking for a while. Then Netta will decide she is the Mommy doggie and take care of Ella. Quite cute. The speed at which Netta learns is an illustration to the contrast with Ella’s abilities. Ella was actually first in knowing most of the alphabet with Netta not really getting it. Then in one week it just snapped into place and Netta could rattle out the whole alphabet and name words for each letter. We are working with Ella still on the pronunciations of the letters, there are some she just cannot do (yet) ‘K’ or ‘G’ are really tough for her which is a pity because she cannot say Gaul’s name. There is such a huge satisfaction when Ella finally overcomes a hurdle. When she says a word or when she takes her first step unaided. There is such enormous pride in her expression too every time that happens. It’s a bit unfair, I guess. Netta achieves such amazing strides almost every day, building complex sentences in two languages or climbing up a jungle gym, or grasping a complex concept. We smile and tell her she is doing a good job. Then when Ella manages to stand 10 seconds alone we nearly explode with pride and encouragement. Maybe that is an advantage of having a special needs child grow with you. The near ecstasy of realizing achievement when it finally arrives (though it takes its sweet time getting here….) with normal (OK, typical as it is politically correct to say) kids there are so many achievements flying by, you nearly don’t notice them and wonder when this or that ability suddenly popped up.

Ella is a picture of contradiction. She is confusing in inconsistencies. Ella knows the alphabet, she recognizes every letter and will point to it when asked, yet she can pronounce only a few. She has been making a lot of progress in her walking, she can tolerate much more of it yet she cannot handle stopping to walk, or know what to do to get up or sit down. She knows perfectly well what is going on, has very specific preferences about what to do next, what food to eat and what activity she likes, yet her playing is very, very basic, something a 9 month old would do, flipping a toy over and over. She enjoys movies and is very specific about the parts that are funny, amusing or boring yet will not specifically tell you that she needs to go to the bathroom and uses only a few basic words for anything she wants (with a lot of ‘all done’ thrown into the mix). In the right mood she will go on and on as if giving a speech, mimicking the melody of speech, hesitating with ‘ums’ and ‘ahs’ and accentuating the important parts (it is quite amusing actually), with only meaning missing, yet is very basic in her communications with others, often scratching or grabbing. She is aware of her environment and reacts to the presence of people around, yet is at times so painfully helpless and often seems zoned out. One of the most difficult things as a parent is seeing is seeing your handicapped child through the eyes of strangers. We are in tune with Ella’s gestures with her nuanced expressions and articulations (and read a lot into every form of communication) yet when seeing her through someone else’s eyes, it is clear how different she is, how handicapped, how limited. How little she can communicate with the outside world. I often have this nightmare of loosing her and her being found by strangers who would not be able to understand her and not know who she is and how to find us. The other most difficult thing as a parent of a handicapped child (ok there might be other points) is realizing her helplessness. A while ago I was reading Ella and Netta a nighttime story and had to go get something from the other room, when I returned I found Ella had leaned to her left (her weak side) and was unable to right herself, she was just stuck there, her head leaning on a table not able to change her position. A parent’s nightmare. I almost cried. I won’t always be there to protect her. What will happen next time? They always say that kids have strengths, they can handle themselves. This isn’t the case. It is very scary.

Ella is making so much progress — in 2 areas: walking and talking! Finally, last weekend (Sunday), Ella did about 5 steps on her own between Etan and me. She was in control, a bit wobbly, but holding her own and staying on her feet without falling. When she finished she had a smirk of pride and seemed to be waiting for the applause and praise which she got. Funny how much like a typical toddler she looked with the same funny gait that a 9th month old would have. This is 3 years late but who cares! The big difference is that Ella can’t really get into the walking position by herself or fall down or get up normally. This makes a big impact on her confidence because she knows this. The frustrating thing for me is that she doesn’t really want to walk at home yet I’ve heard that she is “practicing” at school. On Monday her teaches wrote that she was walking on the black top at recess and took about 30 consecutive steps. I can’t even imagine this. How I wish I could have had a hidden camera. She either doesn’t want us to know she has these capabilities, is too tired to do much walking by the time she gets home, doesn’t trust us like she does her teacher, or doesn’t have a good area to walk about at home (i.e., too many obstacles). Great thing is that she is improving on this whether we see it or not. Ella has been babbling up a storm and is better at mimicking us. She also knows the alphabet and can point out most of the letters when we ask her to pick them out. Finally, Ella had a sleep over last weekend at her cousins’ home last Saturday night. According to her aunt and uncle she was a good girl and enjoyed herself. Only problem was that she didn’t fall asleep until about 11 pm and kept rolling off her mattress while asleep. Hmmmm..

Ella continues to make progress, very steady now, but as always, slow. She is speaking so much more even though I can’t really say that she talks yet. She can make so many more sounds. She loves to hum and sing although usually, none of the words are quite there. It is just so obvious that she knows what she is talking about. There are so many little things that point to great progress. For example, tonight she was willing to talk on the phone. Usually when she holds the phone she is distracted by the buttons so I put it on speaker phone and put it out of reach. But, she knew it was there and gave a few sentences worth of babble. Her intonation is great. The only thing that is missing is diction. Also, Ella is walking much better. She is sturdy on her feet when walking while holding on with one hand. She’s much sturdier when she is being held by the right hand. Now the recommended strategy is to put a hand/arm in front of her chest and NOT to hold her hands. That forces her to get used to using her hands for balance and also to touch things with the right hand as she walks by. Her balance and upper body strength are still not good enough for her to walk completely independently. The other problem is that she probably knows that if she were to fall she’d have no chance of getting up. Ella had her yearly CT scan and appointment with Dr. Black (neurosurgeon) about 3 weeks ago. He was pleased and said that everything is okay and the ventricles are smaller. That’s a good sign meaning that now her cerbral spinal fluid is draining out at the right amount the shunt setting (lowest) is correct for her. I felt that I didn’t need the scan to know that things are relatively okay. All the signs are there. Finally Ella is making substantial progress. That is not to say that the development gap with her peers isn’t widening (I see how fast Netta is growing/developing), but for Ella is seems sometimes like nothing short of a miracle.

Etan and Ella arrived around midnight the night before last (Wednesday). I went to pick them up and was a few minutes late due to a forced highway detour that took me through the scenic route of downtown Boston (Ted Williams tunnel was closed). Ella looked pretty exhausted by the time I got there but she perked up once she was in the warm car and listening to her music. She looked happy (and surprised) to be back. She has to wear a plastic protector over her ear for a week. That has an elastic band that holds it in place with a stretchy net sleeve that goes over her head to hold all that and keep her hair back. She looks like a perfect little Ompa Lompa, as Beth put it, from the television scene in Willy Wonka when they are all dressed in white. Anyhow, she hasn’t seemed to be in pain at all except that she doesn’t like anyone fooling with the dressings and she complained alot when I tried to put bacitracin on. I had to distract her with a movie. The ear looks kind of bloody, swollen but amazingly small now (compared to what was there before). I can’t wait to see what it will look like when the swelling goes down. So far, looks like Dr. Bauer did an amazing job. Ella went right to school yesterday, albeit late. She was fast asleep when I came in after 8 am. I brought her to school around 10 and at first she seemed really tired but then perked up to her usual self once kids were picked for snack. I stayed a bit and when the kids had turns on the indoor swing, Ella gave her characteristic happy scream and I knew she was feeling fine.

Ella is doing fine today. Good mood, no pain, eating and drinking. We have just been discharged from the hospital and we will be beginning our long trek home. It is vey cold outside. Very. 14 degrees Fahrenheit. They don’t have a number for this in Celsius.

First smile from Ella! She woke up in pain and got some morphine. This knocked her out for about an hour. She seemed less in pain when she woke up the second time and was moved to the ward upstairs. For about three hours she was totally out of it, sleeping on and off. Not much complaining though. About an hour ago she woke up, went to the bathroom, ate a bit and when I asked , agreed that what she really needs is to watch ‘The Wiggles’ on the laptop. When it started she let out yelps of glee and got totally absorbed. With a big smile. I hope she will be up to the ordeal of flying home tomorrow. What I realize is that we didn’t think of bringin a button up sweater and the normal one will not fit over her head with the cup she has covering her ear. (also interesting how security at the airport will treat us…). This is what was done this time. – her right and very large ear was reduced in size and shape to resemble the left. – two very ugly scars, one along the jaw and one over the cheek received a concentrated steroid treatment that is supposed to help them soften and flatten. – a little skin tag that Ella always had in (how to say) well… The crack of her butt was removed. This was just an opportunity since she was sedated. So… She is in good spirits. I hope this lasts beyond the end of ‘Wiggles’. Feels like she is angry at me for conspiring with the enemy and allowing them to take her away to surgery. If she only knew to what lengths we go to make it happen, she’d be furious…

Update! Dr. Bauer just came by. Said it couldn’t have gone better! He said he got the ears very close to each other despite the huge difference. She is waking up. I’m going there. More later.