Ella's Pages

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.

Well… Here we are again, taking Ella for surgery in Chicago … Other families do theme parks, camping or county clubs. We do surgery in Chicago. Others later cannot tell you enough about it ‘we had the greatest time’ . ‘the weather was great’ ,’here look at these pictures’. We are modest. We don’t try to get them envious,. We know it’s not for everyone. Anyway… This time it is only Ella and me. And besides the last part where Ella gets sedated and operated on… It has been great fun. I think both of us enjoyed these few days together alone. No school, work, siblings or anything, Ella has been in the best mood. We flew, drove around, visited Victor, Shoshana and Anabelle, ate out, went to a museum, a doctor’s appointment and slept in a strange room. She took it all in stride, even enthusiasm. She even walked outside on icy sidewalks in temperatures that should be illegal. No complaints and often cheerfully singing. She asked to go to the bathroom and had no accidents. It has really been a pleasure being with her. We are staying in the Ronald McDonald house. This is a wonder of philanthropic achievement. The place is dedicated to providing a place for patients of kids with medical issues being treated at children’s hospital. They have everything you could possibly want. Rooms, kitchens, food, games, laundry, internet and a staff which is at times even too friendly. Today’s challenge was to keep Ella from falling apart while waiting for surgery. She was not to have eaten since last night. We were told to be here at 9 for surgery at 11. (though why they need two hours is beyond me). At the end she only went in at 12:15. Not sure how she did it. I was already nibbling on the oxygen mask they had laying around. In the elapsed time six people came by and asked me the exact same questions. I think it could be useful if they started teaching reading in medical school, now that everyone has gotten such a firm grasp of writing. I am in the waiting-room, anxiously waiting for Ella to emerge.

Well of course, Ella is scheduled for surgery in Chicago next Tuesday, and she has a cold! It’s unbelievable. She must hear us talking about an upcoming surgery and then develops the symptoms. So we’ll see if the surgery actually happens. This one is an ear reduction operation and shouldn’t be too difficult or involved. Otherwise, Ella remains happy and active most of the time. She seems to be getting better all the time with listening comprehension and amazingly seems to know half the letters in the alphabet (according to Beth). The problem is that she is not consistent. Sometimes I’ll ask her where is this letter or that (usually I ask about the letters in her name) and she’ll point right to them. Other times she runs her pointer finger by them and settle on another letter, almost like she wants a different one. I’m happy that she is finally starting to develop some creative play skills. For example, she’ll play with the Little Tikes playground, especially with the swing. Sometimes, I’ll catch her putting one of the dolls on the swing and singing/humming what I think is the nad-ned song. Beth was very impressed the other day when she told Ella mid-afternoon, that she couldn’t do something until evening when Beth left, so Ella immediately beganing singing the “good-bye” song that she sings every night before Beth leaves. Nice try Ella!

Ella is making progress all over the place. Really, her development is taking off in small ways and big ways. She’s very sturdy on her feet most of the time although not walking completely on her own. She holds on to one hand and finally enjoys walking in her walker. Sometimes she’ll “ask” to walk by pointing somewhere and looking like she wants to get up (often by trying to “jump” off the toilet). In her walker, when we take her to the gym at the JCC she just flies and she really seems to enjoy it. She starts her run across the gym with a scream, tilts her head forward and she’s off. The only things to fear are the basketballs flying all around her. Communication skills have also improved. She’s back into saying “A-l-l D-o-n-e” that she confuses sometimes with A-B-A (daddy). She is pointing and nodding when she wants something which makes it harder to control her. From the minute she wakes up she is asking for things in her own way — like that the music be turned on. Then she has this new game with Netta (or against Netta, I should say). She screams “all done” at her and then Netta gets upset and screams back to her, if she doesn’t break out in tears. She says: “Ella don’t scream at me”. Sometimes, Ella yells the word “Aba” at the top of her lungs. Then Netta yells back “Don’t say ABA!” and Ella is even more incentivized to say it. On and on it goes. Ella has also been having some break down trantrums which we are not sure what to do about. She absolutely refuses to cooperate and screams and cries, often for what seems like no clear reason. Today, Kim, her teacher is coming over for a consultation on behavioral techniques. We’ll see what she has to suggest, especially for her antagonizing Netta. It is great that she is fearless and has her own ideas, but it is also hard to discipline her and encourage her development at the same time.