I’m in the family center at Children’s Memorial and Ella is in the Surgical Observation Unit. Valerie is with her. I just went down to check them and they are both asleep. Ella, morphine induced and Val, as a result of being on call all Memorial day weekend till about 9 am this morning and not sleeping nights. I’m taking the opportunity to report that all is okay. Ella has come out of about an 2 hour surgery and she’s bandaged up on one side of her head. She has cried a bit but they’ve being giving her steady doses of pain meds so she’s groggy and been asleep most of that time. As usual it is hard to tell what the result is but going in Dr. Bauer laid out his plan with us for debulking the side of her face and taking out the metal plates that they put in when her bones were cut for the reshaping of her jaws during the last two surgeries. Surprisingly, Dr. Bauer forsees only an overnite stay in the hospital. Our plane tickets are for Sat. unfortunately. We had a great time coming here with lots of adventures. Etan, Gaul and Netta are on their way to the airport right now to go home tonite. More later…..

Well, It looks like we are going. The trip to Ella’s next operation starts tomorrow. The actual surgery will take place on Tuesday. I wish I was less ambivalent about the whole business. I wish the previous operations were a resounding success. That would make placing Ella in a new situation of pain, disorientation and inevitably some regression in the progress she has been making, a bit easier to justify. Does she look a bit better as a result of the previous operations? I would like to think so, but it isn’t conclusive. Also the loss of expressiveness of the right side of her face almost counters the benefits of the more symmetrical structure. Anyway… The plan is to drive there through some places that might make the whole experience not totally surgically inclined, such as Sesame Place, in Pennsylvania, and visiting Becky and Irad in Ohio. Ella has been showing new progress in several areas recently. I hate to put a dent in this trend. Her walking is improved. We now use a bandana to support her. She holds one end, we hold the other. The theory (Kim from Ella’s School is the origin of this) is that one day, down the line, we will be able to let go of our end and Ella will still have the security of the bandana in her hand. It is something like the cartoons where the character runs off the cliff but doesn’t fall so long as he doesn’t notice there is nothing below. Ella has almost consistently been pairing her ‘I Want’ with various (sometimes recognizable) words, such as Abba (which I happen to remember). She is using her communications board more to let us know what activity she is interested in, and in general makes it clearer what she wants. A week or so ago she blew me away when I was playing a puzzle with her. She has this puzzle that has animals in it, when one is removed or put back the puzzle makes the sound for that animal (moo for cow). Well, as she was randomly taking them out and putting them back, I asked her, ‘where is the cow’? She took it out with no hesitation, the right one. Coincidence, I thought. I tried for the cat…. Success. Dog… Ditto. What??? Yes. She knows all of them (about twelve) . We did them all. She gets them right. Both in Hebrew and English. I tried again a few days later and the same. Strangely Michelle didn’t have that success (I mean with Ella. Michelle knows where the cow is…). We’ve noticed that about Ella, she doesn’t like to perform. But she knows them! She gets them right!

Huge progress in communication: Ella is now saying “I want…”. Sometimes she adds a “to” at the end and we almost know what she means. But it is really like having a conversation with her. Last night I listened to the girls’ room once they were in bed with the door closed. Ella kept saying “I want”, “I want” and Netta was responding to her “You can’t have it!” “Somebody else took it…” and such. It was pretty funny. Beth has been working extremely hard on communication & Ella is her test-case for school and the subject of Beth’s research/studies right now. Beth has set up a myriad of different exercises and keeps testing Ella for improvements. This is great. Apparently they are working hard at school too with pointing, and asking, eye contact, choices and all these things. It is exciting although I’m always worried about losing something else when Ella makes a breakthrough in any one direction. For example, since I’ve been hearing the “I want”, I haven’t been hearing any “All done”s. Other than that we are getting ready for our upcoming trip to Chicago for Ella surgery. Hopefully, it will happen this time although I am not looking forward to the pain and suffering that Ella will have to go through. With luck, it will be shortlived like the last time which wasn’t bad at all. However, Ella is more aware of things now and that worries me.

Whew! Alot of time has passed and Ella has made steady progress in small increments. It seems like every weekend brings something new for her…in her special, unusual way. Yesterday (Sunday) she walked to the park and back holding on to Etan & my hands. (This is a 15-20 minute walk each way! at her pace.) Her walking is going well. She is reasonably stable on her feet but is scared of losing her balance and holds tight onto an adult hand, so much so that she’d surely topple over if she didn’t have it. Ella needs alot of incentives to get her going so we proceed the walk with a good dose of “We’ll do nad-ned [swinging] at the park”. That really gets her going and then she laughs and shouts for a bit just imagining the swinging yet to come. Ella is like that. You can mention something she loves (nad-ned probably takes the top of the list, a favorite movie, singing songs…etc.) and she’ll start wriggling and crooning with uncontrollable joy. It is really uncontrollable with Ella. It is as if her funny bone is connected directly to the synapses in the brain. Her comando crawl is getting better too. She uses a bent left arm to propel herself forward while reaching with the right hand & arm. She doesn’t use her legs much but does lift her behind now which is more of a crawl than we she first started doing this. She needs incentive– which is usually an annoying battery operated button toy. She had a great playdate yesterday with Nate (see picture). We played school again and Ella was really into it. She almost blasted off when we took out the song folder. Speech is advancing, if one counts appropriate unintelligible vocalizations. She is trying. She seems to try to take part in conversations using a high pitched gibberish. The interesting thing is that sometime she’ll come out with a word that is absolutely on target: “All-done”, “more”, “Ella”, “no” but then she won’t be able to use it again. Apparently, consistent inconsistency is typical for kids with neurological problems, so she’s right on target!

After our ill-fated trip to Chicago, Ella got a bad cold. She was ok on the way back (Tuesday) but on Wednesday she was wheezing and coughing and her nose was constantly running. Good thing they didn’t do the surgery! New tentative date: May 31st. Now Ella is doing fine. She’s making daily progress which is amazing. I don’t think we’ve ever been able to say that and Etan and I wonder again if it has to do with the last shunt adjustment when Dr. Black had the valve turned down to its lowest setting. Among Ella’s new tricks are dragging herself accross the floor and moving along the sofa to get to a toy while standing up. The dragging is the closest movement yet to crawling. She isn’t using her legs to push but she is able to pull herself while propped up on her arms. This is exciting. We remember the days when Ella wouldn’t tolerate more than a minute or two on her stomach. Now she’s motivated enough to get toys and work hard. I imagine that takes alot of upper body strength. Ella’s strong and balanced enough on her feet to be able to move sideways along the couch. She only goes leftwards for now but that is independent movement. Otherwise, she just seems more aware and responsive in almost every way. We do a game of Sounds where she’ll make some sound and I’ll copy it. Then she’ll make a different sound. As I echo her, she keeps trying to make new sounds. Thats fun and a good exercise. Another development is that last week when Ella had no school and no Beth, Gaul took care of her one morning. He did a great job. He did exercises with her and even took her to the toilet despite him swearing he would never deal with that. Kudos to Gaul!

Bad luck… Ella’s surgery has been canceled for now, she woke up with a cough and a cold and Dr. Bauer and the anesthesiologist decided that it wasn’t worth the risk of complications. Michelle, Ella and Gaul are returning home. We will have to find another date. This is very dissapointing.

Ella’s parent-teachers conference a couple of weeks ago went well. We were very pleased to hear just about everything that was said. A couple of physical therapy goals have turned out to be unrealistic (“high-kneeling” for long periods of time comes to mind) but everything else was good. Some of her goals she has surpassed — for example, potty skills and also using utensils for eating. The best thing of course was how positively everyone feels about Ella and especially, Kim mentioned that she is the most popular girl in the class! So, in short, Etan and I were happy parents. Some other things that I still remember include the great relationship that Ella has with one of the aides: Amy. She is using the comunication board consistently, especially during meals. We asked about toys that Ella likes that could be challenging for her and they showed us a couple of ideas. One was an animal puzzle that makes noise when the peices are put in. I bought that the next day and Ella loves it. In a way, it is one of those noisy, annoying toys but I’ve noticed that it has convinced Ella that puzzles are worth doing so that she’ll even do the ones that don’t make noises now. Regarding her play– while we are still challenged to find the right toys for her, she is branching out now. She’ll kiss stuffed animals that she likes and also in the bath tub we have this Winnie the Pooh toy with little figures that go down a slide. She consistently puts the figures at the top of the slide to watch them slide down. Ella’s doing more standing all the time. She’s still suppporting herself on something but at least she is able to stand with nothing around her. Now I put her on the outside of the laundry-basket stander and she holds on for almost a whole Seasame St. movie. Everything is set for next week when Ella will have another plastic surgery in Chicago on Tuesday. We’re just hoping there are no cold symptoms, snow storms or cancellations on their part! On Monday, Gaul, Ella and I will fly to Chicago.

Things are somewhat status quo right now. Ella continues to go to school every morning and her teacher reports that she is more alert and letting loose more as she becomes used to the class and the routine. We have a teacher-parent evaluation meeting next Monday at which time we will learn alot more. Finally Ella will be able to start hippotherapy however, the time slot they gave us gives us just enough time to get Ella from swimming at the JCC to the riding stable. She’s been very tired latley so I hope this is going to work out. Beth is in Jamaica for a 4 day weekend. (She won the trip on from a radio station.) I took Ella to swimming yesterday and she didn’t seem that tired when we got home. She even put up a fuss about getting into bed and clearly preferred to play. I did put her down and she slept about an hour. Walking is going well, slow, but she is steady now walking while holding on to one hand. I am very determined to always have her walk that way from place to place — no carryng unless we are in a hurry. The walker is good too but the problem with that is that she doesn’t steer well and always hits the walls and stays there. Independent Walking seems a long way down the road….

We survived the Christmas/New Year’s break without going bezerk. We were in Vermont for a couple of days in the beginning of the week, then 2 days home and then were in NYC for New Years. Ella got sick in between the two trips. She had a stomach flu and spent Wednesday night vomiting. She had diarrehia on Thurs. which made our departure for NYC somewhat ‘iffy’ until the last moment. Since her attack the illness has moved on to Etan, and now Gaul. Netta and I are still holding out. Ella’s orthopedics appointment was somewhat uneventful. Dr. Kasser, at Children’s pointed out that Dr. Zimbler if on the far of end of being a believer in braces. The advantage to them, based on data, is not so clear. Dr. Kasser suggested using the brace for her hip condition as long as it is not too much of a burden. He thought her situation wasn’t bad and doesn’t warrant surgery at this point. It should be followed. So we’ll continue with the current brace at night as long as it doesn’t become too much of a hassle. Problem is, Ella does Houdini acts at night and is usually out of the brace by morning. She’s making good progress on walking and continues to walk some steps holding on to my one hand. She’s becoming more verbal too and is trying to say some words. This is BIG progress, unbelievable progress. It is cute and funny too. Usually the word is barely discernable but it is clear she is trying. Ella is more aware and alert. What a pleasure! She just started enjoying chasing Netta around. She “runs” after her (I hold her hands for support) with a little smile on her face. It is wonderful to see her being motivated to walk/run.

Ella is making vast strides in the walking department and this is huge. She can now take a few steps while just holding on to my hand with her right hand. She still needs spotting on the left side (shoulder) b/c her balance isn’t good, but there is clear progress. Ella is also more vocal and sometimes just bursts into a cacophony of sounds – undecipherable though. She does this funny laughing thing especially when Abba’s around or has just walked into a room. She pushes air out and tries to force a laugh. It is pretty funny. Ella had another playdate with her school buddy Nate. The teachers have told me that he wrote a song for Ella that goes something like: “Ella, Ella, Sweet Ella… I love you.”. Nate is 5 and quite the big boy around Ella. He loves playing school which is perfect for Ella b/c she just plays along. I think Ella is a little overwhelmed by Nate’s attention. Ella has been sleeping much better with her new brace (for the hip displacement problem). We have an appointment at the orthopedist this Thursday; this is for a second opinion with the top guy at Children’s. I don’t want to be wasting time with these braces if there is no way to influence the situation. Worst case scenario, in our opinion, is the need for surgery to correct this problem when Ella is older. Apparently it is a nasty ordeal requiring a body caste for some period. We certainly want to avoid that!