Ella's Pages

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!

We really are lucky to live in Newton and have Ella be able to go to the Newton school system with their special needs program. I don’t think she would be getting the level of care she does elsewhere. We communicate with the staff via a notebook that travels with Ella back and forth to school. In it we receive nearly daily updates on Ella news. The usual updates such as ‘she finished all her yogurt’ or ‘participated nicely in circle time’ and also the unexpected ‘this week we are learlning about Picasso’ (I am not making this up). The team is attentive, creative and caring. Ella seems to be enjoying it and has gradually learned to trust them (and even go to the bathroom while at school). There has been some progress on the communications front. Ella has been using the communications board more and more. She gestures over to the board, on it are pictures of options she has for food (cheese, bread etc.) and she will point to what it is she wants. Often it is for us to turn on the radio or get her a particular food. She seems to enjoy the fact that she can communicate her requirements to us. It is encouraging to us that she is getting this. Her walking is improving slowly. Now she can be supported by holding on to her shirt in the shoulder area, she nearly manages to keep her balance. She loves being let loose with her walker in a wide open area (such as the basketball court at the gym where she just lets loose runs around with cries of glee. A new development has also happened in the feeding department. She has been slowly improving in picking up her food herself with the fork and just yesterday we got a plate that has a little rim to it. This turned out to be perfect and suddenly she was feeding herself completely using the fork, The rim keeps the food from flying all over the place and we supply the encouragement in the form of loud applause and standing ovations each time she manages to hook something on the fork.

I’m not sure how long we can keep this up…She is very proud.

So are we.

Since I wrote last, we’ve had our ups and downs with the sleeping. Just when we had decided that she was going through some behavioral sleep issues and I was ready to apply the “Dr. Spock method” (you just let the child cry themselves to sleep), she had another really bad night during which she woke up crying after about 3-4 hours of sleep. She was unconsolable and it seemed like she was in pain. It took here a long time to fall asleep. This was already about 10 days ago so I don’t remember if she (or we) got much sleep at all that night. The following day (Veteran’s day) I called Dr. Black, Ella’s neurosurgeon. Thankfully he called back, even though the hospital was officially closed. He thought it a possbility that the lack of drainage of the cerebral-spinal fluid due to her lying flat could actually cause head aches or discomfort. It seems to me strange that there would be an effect in such a short time, in a matter of hours. Anyhow, he suggested that we raise her head up during sleep by about 20%. If that didn’t help, we should bring her in for another CT scan. We have raised her up since then every night which has seemed to work. She had difficulty sleeping only one night since and that might have been due to a soiled diaper. I hope this won’t be an issue forever. We do have a CT scan in little over a month anyway. Other than that, Ella is making steady progress. There are little new things every week. For example, she has added pasta to her very limited repetoire of foods as a result of force feedings at school (they are used to this kind of thing). She also says new sounds, and sometimes words too. She’s not consistent with these though, but it is clear that she means what she is trying to say. I visited her in school today and was suprised by how thrilled she was to get a sticker at the end of the day (with an extra one for using the toilet at school!). She always comes home with a sticker and I figure she doesn’t really care but apparently that’s only b/c I never saw her getting the stick stuck on. I just didn’t get it!