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!

We had a tough week accepting the political realities. It made everything seem just that much harder. Starting on election day, Ella went into this funk during the night where she couldn’t sleep and would wake up crying. The weird thing was that she wouldn’t stay lying down. She had to sit up. Even when she was sitting something was bothering her and she was unconsolable (Kerry’s loss perhaps?). It didn’t seem like she was in pain at first, but it took about 2 hours for her to relax enough to go stop crying and nod off. We had to bring her into our bed so she wouldn’t keep everyone up in the house. For about 3 nights, the only way she would fall asleep was sitting up. One night Etan put a pillow for her head against the crib railing and she leaned against it and dosed off. Netta developed a fever after being treated for an ear infection last week, so I took them both to the doctor on Thursday, expecting that Ella had an ear infection or strep throat. Dr. Marcus didn’t find anything. The next suspicion is always the shunt and we decided to give it a few more days b/c during the day she was fine, in good spirits and acting normal. Finally, on Friday she slept the whole night through and I think she’s ok. In retrospetc I think the problem was congestion due to a cold that was causing her discomfort and possibly headaches. Ella had a playdate yesterday with Nathan from her class (he’s dressed as a firefighter in the halloween video). It went very well and I’m encouraged that kids like to be with her. Nate played school with her. He likes being the teacher (a.k.a. Kim) and Ella is the perfect pupil cause she goes along with almost any plan. They also played piano together, sang songs, did puzzles, tossed balls and listened to music. It was really cute…

Progress, progress, progress. Potty training is going very well, although I just don’t get it. Ella’s solution to not wanting to go at school has been: NOT TO PEE AT SCHOOL. The result is that she holds it in (or somehow absorbs it into her body) the whole time she is at school. She was dry all week and they keep reporting to me that she won’t use the toilet. (She still does it when I take her when I come by the school, usually once a week). Otherwise, Ella is going through a clingy phase I think where she doesn’t like to be away from Etan and I. I guess it had to come sometime. Beth reported that yesterday when she woke up from her nap she lead Beth into my office and when she saw I wasn’t there, she started crying. Also, we had a babysitter on Sunday. After Etan and I left, Ella was cranky and stopped eating. She was eating fine before we walked out the door. I hope she’ll continue eating at school. She didn’t eat her snack or lunch yesterday at school. You never know what Ella has up her sleeve. She had a playdate over the weekend with her summer “boyfriend” Tommy. Etan thought she really enjoyed the playdate even though she and Tommy were playing parallel more than together. Ella wanted to hold his hand and swing it. She also likes pulling shirts and hair which didn’t seem to bother Tommy like it bothers Netta. I guess that makes him a more suitable playmate. Tommy, who has downs syndrome, seemed very interested in playing ball with Ella but everytime Ella got the ball from him she threw it off to the side. On Sunday Ella went to a birthday party of a girl in her class. They had one of those big blow up trampoline type rides in the backyard. Ella was scared of it at first but then when her classmates started calling out “E-L-L-A” and she recognized them, and I went in with her to bounce she eventually warmed up to the idea and even enjoyed it. She gets anxious when she losses her balance so it was a delicate situation. The party, for Ella, was a bust. Ella just doesn’t do well with alot of commotion around. She was cranky and only wanted to turn magazine pages.

Everything seems to be down to routine now. Ella is away at school everyday from 8 am to about 2 pm and then she spends afternoons with Beth. Friday is a bit shorter day at school and she gets home at around 12:30. Ella’s been talking, or rather vocalizing more and I’m beginning to think that part of the reason she’s not really saying any words is low muscle tone around of the lips and mouth. She seems like she really wants to say some things but her voice comes out in this high pitched singing sound and it is hard to decipher anything from that. The other problems is that she gets confused easily which I think is a neurological issue. For example, she’ll want to say “bye” and I think she tries but what comes out instead is “all doooonnnneee”. She’s very inconsistent with her responses. The day before yesterday she was pointing to her toes everytime we asked her “Where are your toes?” Then yesterday she wouldn’t do it or couldn’t do it. She may not like performing, which is understandable. Who knows? On the potty front, there has been a big regression in that she doesn’t agree to use the toilet at school with any of the teachers. That’s a big problem. She holds it in and then invariably there is an accident. I went in last Thurs. and Frid. and took her myself. She went just fine. We bought Kim (her teacher) a “Once Upon a Potty” book which in the Hebrew version is her favorite. Maybe that will help. Kim has suggested not going back into diapers anyhow, so we’ll just keep on going. I can’t say that Ella is thrilled with school yet. She seems a bit hesistant to make any judgements. At least now when she gets into the van in the morning she immediately looks over at her traveling companion and classmate, Jide, as if to say, “Let’s be friends”. It’s clear that she’s trying to make contact because he’s on her left side so she has to turn way over see him squarely.

Just when I thought it would never happen, Ella is potty-trained! Today was the second day we sent her to school with undies….. I find this particularly amazing. Maybe because we worked so hard at it for a long time, maybe because there were times when I thought Ella might always be in diapers… but, here we are and that just goes to show: never underestimate Ella! Over the weekend we didn’t use diapers and she even went to the bathroom in completely strange bathrooms and in a port-a-potty at Garden in the Woods. Even some adults can’t go in those things! I was pretty sure it wasn’t going to happen b/c Ella is pretty particular about new places (after all she didn’t use the toilet at school during the summer program), but I thought we’ve got to try. I held her over in the “toilet” in that claustrophobic, smelly, plastic box of a bathroom and she went. We are still using diapers at night and during nap but Ella is not yet 3 and a half. Anyhow, I’m very impressed. Otherwise we had some issues over the weekend when Ella was away from home and at events. We went to a dinner gathering on Saturday and also to a picnic on Sunday. At the picnic Ella had a crying meltdown episode. I think she was incredibly hungry that time but that doesn’t explain the dinner party. She was just out of sorts. Crying and complaining and moaning. She gets obcessive in those situations which is hard. Unless she gets something to flip over and over (or a book to turn pages), she can be unmanageable and downright impossible, almost to the point where we are thinking maybe we should keep her home for those kind of events. She just doesn’t enjoy herself and makes everyone else miserable. We hope it is a phase.

Ella started school on Sept 15th. She was a bit overwhelmed and looked kind of wary of it at first but now she seems to know what is happening when we put her on the van in the morning. I’ve gone to visit her at least twice at the school and have the impression that the program is much more intense on the therapies and structure than was the summer program (as everyone said it would be). Kim, Ella’s teacher, is amazing. She remembers so much about each child and works so well coordinating all the aides, therapists, assistants, etc. Ella seems to be different following the surgery in that she is more alert and somewhat more talkative. She is more exact with her vocalizations. Significant progress is being made on the toileting front. This morning she spent the whole morning without a diaper. The problem is that she uses the “pee-pee” and “kah-ki” (poop) as a weapon. Currently I am in her favor so she goes immediately when I put her on but does so in dribbles so I have to keep praising her over and over until she lets it all out. I finally got her going at school (she refused to go in the toilet over the summer). We did it gradually: first I took her to the toilet, then Kim took her successfully and now apparently she’s ok with others too. (Ugh, so much work…). Walking is a little more stable and now we’ve opened the front wheels on the walker and she is able to control and keep her balance. I still have to help her a bit with a lead (we use one of Chamlo’s old leashes tied attached to the walker), especiall when stearing through doorways and over thresholds. They are still working on getting her an suitable walker at school. Apparently one was never ordered over the summer like we thought. Ella is eating very well and finishes off almost everything (of the 5 accepted food types) we put on her plate.

Ella was amazingly good at the hospital before surgery, watching movies looking at books, listening to music. A real sport (on an empty stomach yet) After a very long wait at the pre-op room and an insistence to meet Dr. Black before surgery we had a meeting with him and he went over the procedure with us. The intention was to replace the malfunctioning part, probably the tube leading from the brain cavity to the valve (because no liquid was making it through). We on the other hand stressed that through two years of fiddling with the settings and checking and rechecking the result was always the same, absolutely no change in the right ventricle size (we want it to shrink) or the left brain hemisphere (we want it to grow). We asked about the possibility of radically changing the pressure to allow that. Dr. Black said it was a good idea and that he will place a lower pressure valve and set it low if what he finds justifies that). The procedure is not a long one (about an hour and a half). It took longer though, almost three hours for logistical reasons, we heard later. Ella emerged yesterday afternoon, very groggy and proceeded to sleep through moving back to the ward and all through the night. She woke up this morning and seems to be fine. She is eating and drinking, yet is still a bit groggy. She will be dismissed this afternoon. We are hoping this will bring good things for Ella in the future (also hoping for no shunt malfunctions). Ella is starting her school program in a few days. I hope she will be up to going. She enjoys it so.

In this day and age with technology where it is, I am surprised at the limitations that exist concerning hydrocephalus and shunts. For example. The shunt setting can be changed from outside (no surgical intervention) using a magnetic device, though once set you never know if the setting actually was received. (you send the message but you don’t know if it was heard). The only way to find out is to take an x-ray and see if the valve setting moved (literally). The biggest problem though is that there is no way of knowing what the pressure is inside the skull. CTs are taken and compared to previous CTs trying to get some circumstantial evidence about the pressure. But what the actual pressure is… no one knows unless you perform some invasive procedure such as sticking in a needle. With all the miniature sensors around you would think this would be easy… (my watch has a pressure sensor, thermometer, compass and altimeter) That is why having a shunt is such a scary proposition?

Yesterday Ella & I spent the whole day at Children’s Hospital and in the end Ella was admitted for an immediate shunt revision. We started first thing in the morning with a routine CT scan. Ok. That went smoothly– she lay still without moving and needed no sedation. We waited more than two hours until our appointment with Dr. Black. He didn’t seem concerned at first but thought it strange that her left ventricle had not decreased in size. (Surprising that he was concerned b/c from looking back in this log I see that I wrote that last time he explained to me: “some people just have large ventricles…”. At that time (last November) the shunt was turned down completely although the tap showed intercranial pressure of 60. Yesterday he sent us to see what the setting of the valve was (via x-ray). For some strange reason, they don’t believe in looking these things up in the chart which never made it to Dr. Black’s office. Dr. Black saw from the x-ray that the setting was completely down and ordered a tap. Tish, the RN, tried sticking the valve twice to get a flow for measurement. A miniscule drop or two made it’s way down the tube and she immediately declared: SHUNT MALFUNCTION. This was reported to Dr. Black who got back to us with two recommended options, admittance to hospital yesterday or today. Since there was a chance that they would have OR yesterday afternoon we opted to stay. Of course, there wasn’t in the end and Ella may be having the surgery right now. Etan’s with her and he didn’t answer his phone. Anyhow, Ella through all of this has been a real trouper. She’s acted fine yesterday the whole day although she did get bored and hungry. She also fell asleep as Tish was preparing the lumbar kit for the tap. Once she got stuck, of course, she woke up with a howl.

I’m certainly not happy about them having to open up the shunt thing, especially since these are prone to so many problems, but I’m glad that there may be some explanation for her slow development. Once everything is functioning properly, and the doctors seem confident that we will get there in due time, we hope her remaining brain will have the best conditions for development.

Believe it or not we made it to Israel and back for Gal’s bar mitzvah. We had a great time although the flights were difficult with the two girls. Ella got into this funk with the noise of the airplane, disruption of sleep and being stuck in a cramped chair for about 14 hours. She became very obsessive with the airline magazines. She had to flip through them without stopping. She would see one from about a meter or two away and then moan/cry until she had it in her lap. That wouldn’t have been too bad except that the magazine would keep falling and then she would moan/cry until we picked it up. And they fell all over the place — between the seats, in the aisle, under the seat in front. So it became unbearable. The solution was to hide all the magazines in the entire row so she couldn’t see a single one. Then I had to forceably get her to sleep with a blanket over our heads for darkness and I had to hold her head down. On the way going, she screamed for about 45 minutes until she finally relaxed enough to fall asleep. (Netta was much easier on the plane.) Apparently when Ella gets fatigued she ruminates and exhibits that repetative behavior. Anyhow, highlights of the trip where “splash, splash” swimming at the hotel on the Dead Sea and general time with Emma/Abba.

Ella did amazingly well on the potty and she ate well too. No problems whatsoever. I think she was very cooperative b/c she loved having no therapy and almost constant parent-time. Since we’ve been home and Beth is back (yay!), Ella has been striking. She’s not cooperating on the potty and refuses to eat her mid-day meal (mush with vitamins).