Ella's Pages

Ella is very happy lately and making some motor progress. On Friday I took her swimming at the Fernault campus pool. This is a therapeutic pool for special needs kids. It’s great advantages are the temperature — about 90 degree water — and it has a long declining ramp so I can sit comfortably on the ramp with Ella and do exercises. I think Ella gets alot of exercise in the pool. While I don’t do anything very structured with her since I’m not quite sure what to do, she gets very excited and kicks and splashes non-stop. The movement is a good thing in any case. Other motor progress I see is in standing. With her AFO’s on and some back ground music Ella can actually stand with minimal support. She can maintain this position for about 15-20 minutes and then needs a rest. It is so amazing to see her stand like that. She still can’t get herself up to a siting position completely by herself from lying on the floor so I can’t imagine what she would do by herself if she fell but this is a start. Hopefully by the time she is able to stand by herself she’ll be able at least get into a sitting position. Funny how normally developing children move so smoothly and effortlessly from sitting to standing to walking in so a short time span. I barely noticed or remember these stages from raising Gaul. Yet with Ella, each stage seems to last forever and demands a concerted effort that goes on for months. So when she does start doing something — like standing — it seems nothing short of a full-blown miracle.

Ella decided to slightly modify the plans we had for the weekend. According to our plans we were to be going on a hiking trip in the White Mountains. A first for Ella. We would stay in a hut managed by the Appalachian Mountain Club. Ella’s plan was a little different, she would get a fever the night before we leave, a 104 degree fever (40 degrees Celsius), we would then spend half the night in the emergency room and cancel our hiking trip. Whose plan do you think got implemented? Actually we compromised. I stayed home with Ella and everyone else (Michelle, Gaul, Ruthie, Harel and Ofer) went on the hike. I got to spend the whole weekend with Ella and only with her (and a fever). The weather was miserable so even if she felt better there really wasn’t anywhere to go. It was actually a lot of fun. The first day we just relaxed because I wanted to let her rest and get over the fever.

At the emergency room they couldn’t tell us anything conclusive. They wanted to rule out the possibility of her Shunt being infected, and try to find some other source of infection to explain the fever. They couldn’t. The second day we did a little more. Some of the exercises she is used to. Her progress, as usual, is very slow but consistent. She is moving ahead in her ability to express herself, feed herself and stand. Tiny steps. But steps all the same. Ella is tolerating the stander better and for longer durations. She will also agree to lay on her tummy propped up on her elbows if you put on a Barney movie. She responds more with imitating words you say and sometimes they come out similar to the ones you said…

Ella has been making progress — mostly in the developing personality area. She seems more interactive with us which is great. She hasn’t started tap dancing yet and she hasn’t began speaking a second language but there are more times when she is clearly “playing” with us and it’s nice to develop more of a relationship. For example, when she is around people she doesn’t know, like at the JCC babysitting or at a friends’ house she turns and grabs on to me like she doesn’t want me to go anywhere. After a long time it is good to feel she acknowledge a special, secure mother-daughter relationship. In the feeding department, Ella is now using a plate, however, for some reason she likes taking all the food out of the plate and putting (or throwing) it on the side and then eating it. We haven’t quite figured out this “sorting” logic. At least she is not throwing the plate. She’s come close a few times and that’s the perfect opportunity for learning “NO!”. She loves pears and wants to eat the pear whole or suck it rather. That’s great. We’re so happy about the independence. Just being able to leave her to eat by herself is great. Ella has these moments when she just gets so excited like when in her gait trainer listening to music or in her hi-chair with all of us having dinner. She just starts kicking her legs and flailing her arms. One can’t help but smile and laugh around her.

Ella’s development like all things Ella has two very different sides to it. On the one hand Ella’s gross motor skills are moving ahead at a glacial pace. Excruciating. We see nearly no progress in that respect. Ella can not bring herself to a sitting position on her own (except when propped up in a very special way), She cannot crawl (and in fact tolerates very little time on her stomach) and of course standing and walking are still in some nearly unimaginable, distant era. The use of her right hand has become more refined, but her left has made no progress whatsoever. In fact I think that as she has improved the use of her right hand, her left hand utilization as actually deteriorated somewhat. On the other hand Ella has made tons of progress in several very important directions. The first is communications. Here she has moved ahead dramatically. The discovery that she can signal ‘more’ by putting her hands together has opened a channel for her to express herself and for us to understand what she wants. She uses it constantly. It is her one all purpose word. It means More, Now, Yes. Basically anything affirmative and is a wonderful thing to have. We can ask her ‘do you want a bottle?’ and she will signal yes (if she does). She tells us to stop standing around and start pushing her around in the supermarket cart and to sing the same song again. It is amazing what one little gesture can do. Her connection to everything that is happening around her as increased. She is aware and she responds more. She finds things interesting and some funny.

I think she is developing a sense of humor. There as specific things that make her laugh consistently. She just finds them funny. There are also a few that it seems like she does because she thinks they are funny for others. One is a particular joke she tells with the bottle nipple. I would tell you that joke but it doesn’t translate well. Another is the head bopping thing. We bring our heads close to her and she will bop it with hers getting a reaction from us and being very amused. She tends to be amused by things she knows are coming. The anticipation is funny and the release (when the thing happens) is hilarious. A new discovery is the swing at the park. She loves being on it. The part she loves best is when you pull her back and she knows that she is going to be swinging in a moment. The anticipation is completely amusing. When you release her, she screeches with glee. A lot of progress has been happening in the feeding department. We have been trying these past few weeks to have Ella feed herself. We placed solid foods in front of her and had her put them in her mouth. Progress there wasn’t linear since we were sucked into helping her (she is very difficult to refuse). But just these past few days as a part of a new regime where we let her do it all, she made huge strides and ate vigorously. The use of the patch on her right eye has borne fruit. In the last ophthalmology exam the doctor found that Ella’s vision is in the normal range and that the wandering of the left eye has been reduced. We still need to continue with the patch to reduce the effects of ‘lazy eye’ for which she has a natural tendency . Her love of music is very much there. There is nothing that gets a reaction from her like music. She has preferences and can recognize her favorites every time. The best parts are the beginnings and ends of songs, not all songs just the really good ones.

Beth had the flu for most of last week so we got to spend more time with Ella than usual. Other than missing out on some work it is great fun being with her. She enjoys most things you do with her (Supermarket, walk with stroller, park, TV) and is unabashedly positive. A true wonder.

Ella has seems to have said her first words or rather her first phrase. Yes, she has been saying: “All done”. Actually, you need a bit of imagination to figure the words out and we’re not completely sure that she understands the meaning, however, she is consistently imitating our saying of the words at the end of a meal. This of course, is very exciting for us and for her as well. She has fun listening to me slowly emphasize each syllable, she laughs and smiles and then gives it a go herself. Otherwise, we are working on trying to get Ella to feed herself. For some reason this is very complicated. Maybe she has just gotten too accustomed to us making up her favorite food – chunks of sweet patotoes, plain yogurt and baby cereal, what we called “mushtt”- and then spoon feeding her. She won’t pick up much more than crackers or cookies herself. But there’s got to be an end to spoon feeding and there’s no question that she is capable of picking up peices and putting them into her mouth. Sometimes, she won’t take anything more than a cracker even if we feed her by hand, unless it is on a spoon! Apparently there is an etiquette to these things in Ella’s mind.

Yesterday we met with Dr. Bruce Bauer at Children’s Memorial Hospital in Chicago.

This was quite a trip because we went to and from Chicago by 24 hour train ride. Last night I slept okay and so did Ella so we’re good. However, on the way going, Ella had a very difficult time going to sleep. She got clearly overtired and at 10 p.m. at night she just started bawling which is very, very unusual for her. We stayed with cousins Val & Adam, and visited cousins Victor and Shoshana too. We saw a lot of Chicago and generally had a good time. Dr. Bauer seemed very knowledgeable and personable. One reason I wanted to meet with him is because, as opposed to all the other doctors we’ve seen (everywhere) he is a top notch doctor who actually corresponded with me by e-mail! Apparently, he has seen a lot of patients with nevus problems (especially big-hairy nevus syndrome). As a matter of fact, we saw him a couple of months ago on The Learning Channel on reconstructive surgery. He treated toddlers with nevus that covered a lot of their face and had to be removed.

What he told us was very hopeful. He seemed to think that laser treatment would work for Ella to some extent and of course, some of the nevus would be cut out anyway during the overgrowth reduction. The other things we liked about him were that he assured us that he himself would be doing with surgery together with two other specialists (one who would be the boney structure specialist). Also, he recommended that we get 3D CT imaging of her head done in Boston and he referred us to a specialist for that. This is the first time a doctor has definitively said that we need that and it makes a ton of sense. So, in short, now we are thinking we might like to have the surgery done in Chicago. So, back to the drawing board with the insurance. In the meantime, the Reconstructive Surgery Institute at NYU is getting flakier by the minute. I’ve been waiting for about two weeks for them to write a letter to Ella’s pediatrician regarding Dr. Delacure doing the surgery and not Dr. McCarthy. Time passes and I find myself just nagging and nagging to get it done. If Dr. Bauer’s clinic is more responsive I’m beginning to think that is the way to go.

Ella is making steady progress now although nothing very specific. She just seems more alert and has more “to say” and is more intent on what she wants. For example, yesterday I tried giving her the sippy cup after she enjoyed sipping water from my glass. The problem was that she didn’t want to drink from the sippy cup but rather turn it every which way to see how the water flows inside. It starting dripping all over the place (this is a modified sippy cup) but she wasn’t willing to give it up. Also, now that she knows the hand sign for “more” works, she uses it all the time and it is so hard to refuse her because….well, we are so happy she is communicating that way and also, she is so cute when she does it. Ella now has AFO’s (ankle-foot-orthodics) which are really pains. They are hard plastic braces that go almost up to her knees. She has to have high socks or tights on underneath. Her PT says she needs those to keep legs aligned so that there is not any pressure in the wrong places. Her PT and OT have picked up on some suspected signs of bruising on her feet and ankles from bearing weight in the wrong way without them. Hopefully these will give her added stability over time and will be less cumbersome as she grows into them.

Finally some very significant progress. Ella has started communicating using sign language. She is signing “more” which is very cute to see her do. She brings her right hand over to her left and pats her left arm and hand. This is as close to the sign as she can get with the weak left hand but even that fact that she is getting her two hands together is progress. She hasn’t really done that up to now. Beth deserves most of the credit for teaching her some signs. Beth has been diligently looking up signs in a coupld of books she brought on the subject. Ella seems to be understanding more and more lately. When I ask her “Where is Pocahantas?” refering to the picture post card over her changing table she looks right at it or tries to reach for it. Also, she knows “Where is kelev Aldo?” refering to a felt picture on her wall of a dog, and also she has learned the names of all her therapists! Now we are working on waving “Bye, Bye” which seems strange that she doesn’t get since she has long understood “high five”.

Oh well, maybe she’s smarter than all of us and just doesn’t want to say goodbye.

At times Ella seems more alert than ever before and she’ll look very much like a normal kid (lack of symetry in her face excluded of course). Like when she’s sitting very tall and very much in control of her movements and expressive. However, often she still seems to be less active and far, far behind developmentally. She’d doing well in the stander. She’ll stay in it for about a half an hour at a time while she’s watching a video or she’ll just be willing to play with her toys while standing in it. It’s amazing how quickly she became accostumed to it. She cried and whined only the first two times!. The gait trainer is still more uncomfortable for her. She doesn’t get mobility idea yet but when she gets excited while in the gait trainer she “tap dances”. She even seems to try to dance some in her stander when her favorite “Buba Matti” songs are played on the VCR. We’ve been taking her swimming every Sunday. She loves that and gets very excited in the water.

Her favorite game is still throwing things on the floor and hearing them drop. She laughs more now so it’s cute when she find something she really likes. All told, the changes are incrementally small but the graph is up. We’re still trying to figure out where to do her plastic surgery and we hope to talk to NYC Institute of Constructive Surgery this week (Dr. Macarthy). We have some questions mostly regarding the timing of any surgery. We are concerned about a letter from Dr. DeLacure who is slated to do the surgery down there. He reported that Ella’s facial nerve is paralyzed on the right side. If anything it is more paralyzed on the left and besides, that’s totally not true. Her right side (the large one) is very expressive! So that is another point that needs to be clarified because the danger with the surgery is the chance of damaging the facial nerve. We certainly don’t want the surgeon to have the attitude that it doesn’t matter what happens to the nerve!

For us, who follow Ella’s development constantly, it is very difficult to see any change. Ella’s development is painfully slow and each step along the way is prolonged and laborious. When friends, who haven’t seen Ella for a while, come over they always remark on the amazing progress she has made. That of course is very encouraging. On a day to day basis though, progress does not always seem part of the picture. Recently, several new things have been added to Ella’s care. She has a new brace to help keep her hand and wrist from constantly contracting as it naturally wants to do. The hope is that if her hands is held open she will use it and her arm more and maybe put some weight on it in helping her support herself.

In a periodical eye exam it was determined that her vision in her right eye has improved, yet her left eye has not. She has also started developing a wandering left eye. This , they say, is fairly typical with kids who have a reduced field of vision. It is a trick to gain a little more field of vision. It does cause the eye to wander however. The result is that Ella now wears a patch on her left eye for 2-4 hours a day. It doesn’t seem to be bothering her all that much and I was pleased to see that she functions ok using only her left eye. Lastly, even though we have been fighting with the insurance, and tackling the bureaucracies, we have yet to see a stander or ‘Gait Trainer’ as has been ordered through them. We have managed to organize through friends and helpful organizations an old (and a bit too big), stander that we can use for the time being. It looks amazingly uncomfortable. We strap Ella in, her movement is restricted in all but the upper part of her body. She isn’t happy. The trick is to distract her. If we put on a movie that she likes we could more or less hang her upside-down by her toes and as long as we don’t obscure the screen… She’s ok. So that is our tactic with the stander. She tolerates it as long as the movie is running. Vocal developments include ‘nuh, duh, luh’ and the biggest is that I actually have a name. It is ‘Click’ Any time I enter the room or she notices me we exchange clicks. This is specifically for me and we concluded that is my name. Ella’s dexterity is improving in handling her toys and her food. She is more accurate and more deliberate. She also wants more attention. This is, as therapists say, ‘Age appropriate’ She wants us around and lets us know it. She has started accepting drinking from a glass. First you need to show her that what is in the glass is something she likes, and not the sulfuric acid we often try to slip her. Once that is ascertained she will gulp it down, though only about 20% actually make it into her. The list of things she is ready to eat has expanded a bit (really just a bit), with chicken and potatoes, sometimes cheese added to the approved list. Some new games were developed recently which she delights in. One is where you bring your head close to hers but not touching. Ella will bring hers closer and touch yours accompanied by giggles. She responds much better to the ‘where is Gaul?’ ‘Where is Chamlo?’ questions and will almost immediately turn to the right direction. Her walking or talking seem to be so far off as to belong to another species. As of now, she isn’t crawling or moving herself around in any way. (Strangely, when she is asleep, she effortlessly turns from one side to the other to snuggle just right, when she is awake, the same motion is much more laborious). On the other hand, I am so amazingly proud of her. Every single thing that she does, she did on her own. She got no shortcuts or easy helpful handouts. In fact she didn’t even get standard capabilities issued to everyone else.

So there!