Ella's Pages

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).

Today is Ella’s last day in the summer school program. It has been an interesting and fun (I hope) experience. I think Ella enjoyed it although I think for the first couple of weeks she was overwhelmed there – being put on a minivan with other kids she doesn’t know, being bombarded with sensory inputs in the classroom for the whole morning. It must have been like walking into a Sesame Street video for her. Eventually I added a notebook to Ella’s backpack and her teachers (Robin & PT –Cory) wrote about how things went. This was VERY helpful. Almost everyday we got pictures of Ella: at tea parties with other kids, sitting in a police (squadron) car, making projects, reading books, etc. Robin reported that she never agreed to pee while at school even though they continued to put her on the toilet throughout the morning. That’s interesting b/c she peed a long streak everyday when she got home. (Potty training continues). Ella got very tired some days – to the point of falling asleep at lunch. I was able to pop about once a week which was great. Funny, though that Ella’s strategy was usually to ignore me. Except for when I brought Netta one morning and then she almost jumped out of her skin. Ella loved the mixer (making smoothies) and going to the wading pool twice a week. What a real world experience for her! So far, “school” has been great.

Today is Ella’s last day at school for the summer program. She will be going back there in September for the school year program. So far her experience there has been, as far as we could tell, wonderful. The team at the school is very communicative and helpful and seem to be doing a great job with Ella, There is a notebook that travels back and forth with her and through it we get reports of her daily achievements: ‘Ella walked to the pool today’, ‘Ella played make believe phone today talking into a toy phone’ ‘Ella didn’t touch her food today but instead tried to steal food from other kids’. She is always very enthusiastic to go, when we talk about her going on the bus to school she gets excited. Then she returns at 1:30 and she is exhausted. Goes to the bathroom and drops to sleep like a rock. Recently she has been in a consistently good mood, talkative and alert. She has also made progress with the gait trainer and now walks around the house in it with a little less protest than before. She still cannot control the direction properly, we hooked up one of Chamlo’s leashes to it and help her steer with that. Last weekend we took the gait trainer with Ella to the gym and had her walk with it from the car to the building and then round and round in the big basketball courts kicking a ball around. I think she is making cognitive progress, tough it is hard to put my finger on exactly what that entails.

Maybe it is the general feeling of her being more connected and alert with what is happening. After the last visit to the orthopedist Ella was prescribed a new wedge to sleep with. This monstrous contraption sits between her legs as she sleeps and keeps them apart. The thing is the angle is much more extreme than the previous one and seems more appropriate to hold someone while giving birth. I can’t believe she can sleep with that thing on. But she does… Hopefully it will make some positive change in the way her legs meet her hips and she won’t need to use it for very long. (historically our luck doesn’t work that way). On the positive side, we have been phasing out the use of her leg braces and now she is without braces half of the day. Her walking is better with the braces but just a bit and the difference is getting smaller. We get much fewer objections when we walk without the braces (nearly none) and even barefoot sometimes. (that was unheard of just a few months ago). Her bathroom progress is inconsistent. Sometimes it goes well and then there are a few days of no success at all. She has transitioned easily to a new bottle with a straw and uses that exclusively. I have concerns about her eating and mouth structure. As it is only very few teeth touch for chewing on the right side of her mouth. On her left… none at all. So if she wants to chew anything she needs to steer it to the one or two teeth that actually touch. I am wondering if there is something to be done about it, we will bring it up at Ella’s next dentist appointment.