Here is the note that came back with Ella from school today from Danielle:

‘Ella blew us away with her phonics work today, sounding out the words: mud, met, fit, rug, lip, mop. Ella was able to sound out so clearly and confidently.
She has also been doing so well during reading time looking at the books and making connections.
Ella has been awesome with her speech / vocab answering friends and teacher in full complete sentences.
Wow! She is amazing me!
Danielle’

Some days are encouraging.

So much has transpired since the last serious entry. It is tough to know where to begin.
Lets just start with this weekend. There were three firsts this weekend and they were very exciting.

First. on Friday Ella started saying ‘Cool’. now this may sound non impressive or trivial to the uninitiated but to us Ella fans, this is a big deal. Till now all the guttural sounds (K,C,G) were out of Ella’s scope, non existent. They were replaced usually by a ‘t’ sound. This made understanding her a very exacting science reserved only to the inner circle. She would be going to the ‘part’ or telling us that a ‘taow’ makes the sound ‘moo’. Anyway. last week she had an appointment with the optometrist who, wanting to strengthen her weak eye recommended an eye patch. A ‘cool’ eye patch. Ella started saying ‘cool’ and was very proud of this constantly repeating it and some other words with a ‘k’ or ‘c’.

Second. On a walk we were taking while camping, we hiked up to a fire tower at the top of a hill. everyone was tired out from the walk and we just lay on the grass below the tower.
Out of the blue Ella pointed at the tower and said ‘Tower’. Now… This is the first time Ella volunteered a word that we didn’t have to drill out of her (Ella. what is that? who is this? what color? etc.). Also, this is a word we didn’t know she knew. maybe she picked it up from a a book or story or school. Encouraging.

Third. While taking a different walk, Ella suddenly asked to ‘I want Run’. we thought we hadn’t understood so we tried all kinds of permutations (want gum? gun? rug?) no. She really wanted to run. holding her hands we ran with here and she was clearly thrilled. We told her she can say ‘stop’ to stop and for the next half hour we started and stopped running with her.

This independence is a great sign. Ella has been mostly responsive in her communications. It is nice to see her come up with her own ideas and express them.
Looking forward to more of this.

She thoroughly enjoyed camping and didn’t mind sleeping in the tent in a sleeping bag on a hard floor. And it was cold. She was babbling a lot and singing. The fact that there were 4 more kids around really made it fun for her.

So… It has really been a long time since we updated Ella’s pages. This hasn’t happened for lack of things to write about concerning Ella and not because Ella has not been making progress and changing dramatically as time goes by. The reason? not clear. Part laziness, part lots of other things going on. Also for us describing Ella’s progress is somewhat artificial because it is often difficult for us to observe the changes having her as part of our lives. It is a conscious effort to try and reconstruct the changes
So, I’m not going to be writing all that much this time. Just announcing that we are back and will be continuing to tell you about Ella’s adventures.
The big milestones that we past and those that are coming up are: In June Ella turned six. It is quite amazing that she is six already but… go figure.
Next month Ella is going to start first grade. This is truly incredible. First grade!
More in a bit…

Caring for Ella has a built in dichotomy, quite separate from the missing brain hemisphere.
Within Ella’s sphere we have nothing but excitement over her achievements, her joy and the progress she makes in almost all aspects of her life. Measuring this against herself it is always surprising to see what she is doing now. Friends who haven’t seen her in a while always comment how far she has come.
The world however is not Ella’s sphere. Even though ‘everyone is different’ there are certain absolutes. Measuring Ella there gives very different results. As a parent it is always difficult to face that, no matter how excited you are for what Ella is achieving in her own scale. The world however doesn’t care about such things. Kids point at Ella and are taken aback. She cannot do what others can and requires special attention and a different way of doing things for nearly everything.
We are always on her side, in her sphere, accommodating, making it possible, being the ‘interpreters’ of the real world to Ella and of Ella to the real world. You just worry if there will always be someone like that around to perform those functions.
Most of my nights end with a dream with some scenario or another where the answer is … No.

We have been really delinquent about writing since Ella began kindergarten. Here it is past mid-year and now everyone is thinking about next year (especially Netta, who will enter kindergarten). Ella’s progress has been immense. As usual, it has been in small increments and she is still very dependent on us so we tend not to appreciate it all the time, but she really has made so much progress. She is talking much more. She babbles a lot which is incomprehensible but has all the right intonation. She uses language much more to make her needs known. She says: ‘I want…potty/cat/auto/all done/music/Netta/Aba/Ema/hug…’ and much more.
Most of her sentences start with ‘I want’. She says, ‘I want EAT’ a lot lately at the most unexpected times. We are trying to figure that out b/c sometimes she couldn’t possibly be hungry. It is almost as if she wants to say something and that is what she can think of. She almost always goes into a chorus of ‘I want eat’ just as she we are putting her coat on to get her ready to leave for school. Go figure…We don’t know what that is about.
Ella and Netta both have stopped napping during the day (from months ago) and around October/November we stopped using diapers during the night. Ella has had very few accidents which is amazing since she can’t get up by herself during the night if she needs to go. At school, we hear mostly the reports of her teachers, therapists (at team meetings once every 6 weeks or so) and from Amy her aid, who writes just about every day. Amy writes about Ella’s amazing accomplishments. For example, her singing solos in music class, doing pushups and writing and reading some. We get the impression that Ella does a lot more at school than at home. Well, she is probably very motivated by the other kids. Ella continues with horseback, swimming therapy and movement&music on a regular basis during the week.
She also goes to Etgar l’Noar which is a special needs Sunday school. They also report Ella taking part in many aspects of the class, especially singing where I think she really gets excited and shows off. She loves singing the songs she learns with us at home (provided we know what they are…) and gets the melody and some of the words out very clearly.
Ella also goes with me to a special needs music class on Saturdays (sometimes we take Netta along too). She gets so excited when the teacher starts that she shakes uncontrollably and screams a happy scream. This usually gets everyone into a good mood. Ella’s motor skills have improved quite a bit too. She walks very well now holding onto one hand. She can walk for a long time and stand as well. The other day I took her to the mall and she walked around almost the whole time with me without complaining. When she gets tired she’ll say: ‘I want auto’ or ‘I want all done’. We took her for a stroll in the Arboretum the other day and she lasted for about a half hour. This is pretty good considering that a year ago she would have complained after about 5 minutes.
She still is very reluctant to walk completely by herself but she can do it. She is more willing to walk alone when in places she knows well like the JCC or at school. Two weeks ago we were in Jamaica. Ella went to the kids camp with a babysitter. She liked it and had a great time swimming. Still she was happy to get back to Aba & Ema at the end of the day…

Ella continues to do well in kindergarten and at this very moment is being awarded a “principal’s star” in a ceremony in front of the whole school. I’m not sure what she is getting it for but apparently for some outstanding accomplishment. Most of Ella’s accomplishment may be in the sphere of socializing because according to reports and what we can tell at home she has lost interest in working on reading and the re-enforcing the letter sounds. It may be that she is bored with it and hasn’t aquired the maturity, curiousity or discipline to keep it up. When we try to work with her at home on writing skills and the letters she turns her head away in protest. This is usually at the end of the day when she might be tired already. But also Amy has reported a lack of interest on her part at school.
Ella’s strength now is in story-telling. The problem is that no one can really understand the story she tells which usually involves someone saying “noooo” a number of times. Ella was a devil again for Halloween (Netta was a pig for the 3rd time and proud of it!).
The exciting thing was that for the first time Ella was able to walk around to the houses. She didn’t complain and kept right up. There is no doubt in my mind that she wouldn’t have been so enthusiastic if it wasn’t for Netta enthusiasm in running up to everyone’s door and asking for candy. While Netta immediately exclaimed “Trick or treat!”, Ella wanted to step right into everyone’s house — probably looking for the closest chair. She got a little confused about where to put the candy and how many to take but the upside is that she walked about 3 blocks.
Such an improvement over last year! when she couldn’t go at all. Next day she had a great story to tell about in school in which Aba said: “Noooooo!”. (probably b/c he was tired and didn’t want to do much trick or treatin’.)

I’m happy to report that Ella is doing well in kindergarten. The greatest thing is that everyone just seem to treat her as ‘one of the crowd’.

We had her parent-teacher conference a couple of weeks ago and her teacher, Mr. Byers, told us that she transitioned very nicely into the class. She didn’t have any separation issues or extreme shyness. Of course, she has her all-time favorite aid from the past two years by her side. She feels so comfortable with Amy that she often asks to go to the bathroom soon after she gets to school and then poops. That is the ultimate comfort gauge. She hasn’t done a poop with me in weeks! Amy writes us every day a whole page of information about what went on. Granted, I think there is some ‘rosy-ing’ up of the events, but according to what Amy tells us, she is making friends, ‘writing’ stories by choosing letters, singing in choir, playing games in P.E., and more.

I was told there was one first grader who got kind of freaked out by Ella’s appearance. I don’t know who the little girl is but apparently she got over it eventually with some help from staff. I went to talk to the class and read my book about facial differences to them, but they honestly didn’t seem that interested. So, all told things are going very well for Ella in Kindergarten and I am definitely happy she moved on. She was really ready for it.

Ella has made so much progress this summer! She’s saying so many words now. Sometimes they surprise us and we don’t understand them right away. Like yesterday, she hit her head on the table and then looked at me squarely and said “huuuuu”. I thought she was saying “home..” which she says as we approach the house in the car or she wants to leave from somewhere. But Etan figured it out. She asked for a “hug”. That is the cutest. She had her endocrinology appointment last Tuesday. As I figured, they don’t know what the issue is but did seem concerned that her growth, both weight and height, have bottomed out. She’s just about fallen off the growth curve and has put on weight or grown in height since about a year ago. She had blood tests and urine tested.
We should be hearing back from the doctor (Dr. Krauel) within a few days. But the head doctor, Dr. Spack, seemed pretty convinced that is not hormonal or thyroidal b/c if it were that kind of problem, she would continue gaining weight while not gaining in height. He suspects a nutritional problem and recommended seeing a nutritionist.
Maybe she is just not taking in enough calories for the amount of energy she puts out. I don’t know about that theory. To us, she seems to eat quite a bit — much more than Netta. Oh well, it is possible that they won’t find the answer, at least not in the near future. In the meantime, we’ll try to keep her calories up.
Otherwise, Beth is leaving us next week which is a huge change. She took Ella to the movie theater yesterday and Ella was very content (for about 45 min.) to watch a movie and eat popcorn. Then she started saying “home”, “home”.

Ella’s motor skill development seems to be at a stand still. She has new words pretty steadily but her gross motor skills seem to taking forever to develop to the point where she can really walk by herself. Maybe I say that because my body often aches from having to bend over her and get her to move this way and that.
I have to bend over her when she walks and despite the fact that she looks great in the video-clip on the homepage where she is walking at the gym, she really can’t initiate or end such a series of steps by herself b/c she can get up or down from a standing position. She doesn’t want to walk by herself either. A couple of weeks ago at the doctors when we went in for her regular yearly checkup and shots for kindergarten, the doctor (and me) was really surprised that she hadn’t grown at all since she was measured last year. And, she had gone down a point & a half in weight. At first he thought it must be a mis-measurement but I was watching as the nurse weighed and measured her. I couldn’t believe it because we thought she had grown. Clothes seem small on her from time to time. But, the facts remain. The really suspicious thing, that I’ve been wondering about for some time, is that her feet haven’t grown at all in years. I can’t remember when I got her a new pair of shoes. It has been at least 3 years, I’m sure. The Dr. Shulkin, who saw her that day, ordered a bone x-ray to determine something like “bone age”. We did that. Results came back normal. I talked to Dr. Marcus about it who at first didn’t seem concerned but then looked at her growth chart and recommended her seeing an endocrinologist. We’ve made the appointment – which wasn’t easy b/c normally you have to wait about 4-5 months to get one at Children’s Hospital. Dr. Marcus helped and we have one for mid August. I’m hoping that will shed some light on the motor skill development (or rather, lack thereof). Dr. Marcus said, as I suspected, that feet are one of the first parts of the body to grow quickly.
Also, Dvorah (support group Mom whose daughter has growth issues) told me that when her daughter starting getting hormone shots, the first difference she noticed was in muscle tone. Really, no matter how much walking/standing we force Ella to do, there is no growth result. Her endurance has gotten better, that is true, but I’m not sure she has the strength to walk independently which is probably the reason she doesn’t want to try. Otherwise, Beth is leaving at the end of the summer.

We are back in nanny-search mode and it is hard. Beth has been so wonderful. It is going to be a big transition.

We made the decision and Ella is moving on to Kindergarten in September. Tomorrow she will go to orientation at the school for a couple of hours. Although we still haven’t heard back from the state on the waiver, we decided it is best for Ella to move on. When I told her teacher, Kim, she seemed to agree with me that this was the best course of action.

Some of my reasons: to take advantage of the opportunity for her to be with typical peers; as the only child around with significant needs she may get more attention (albeit not focused on her disability); she knows the routine in Kim’s class very well and as Kim says herself, she doesn’t think she can give her much more than she’s already obtained from the curriculum. The change in schedule will be pretty significant which means a lot of re-juggling of therapies and such.

I also have arranged for her to go to after-school care, 2 days a week. She’ll still need an aide and we’ll have to find one… Yes, Bethh is leaving at the end of the summer, unfortunately! So there are lots of transitions coming for Ella. As for the orientation tomorrow, I’m not sure Ella understands what’s coming…it is hard to know if she understand she’ll be starting a new school. I’m apprehensive about the reaction she might cause with some kids. Sometimes they are afraid of her looks. They will probably be on edge to begin with and Ella will be too. I don’t think she minds about stares. If someone breaks down crying…woe is them. Ella will probably laugh her head off at that. In general she is doing well and making steady progress especially in her speech.