Ella's Pages

Something we have been noticing recently and are not sure if we should be worried about yet is a certain behavior Ella has been exhibiting lately. While she is alert and interested in her surroundings, smiling and looking about, she will, every now and again suddenly lock her gaze, usually directly upwards, or to the left. She isn’t frozen, she keeps on sucking on her pacifier, moving her hands and her eyes are not locked to their absolute position. If you move her around she will keep tracking that imaginary point. Her eyes will move to compensate for her new location. But she isn’t actually looking at anything because if you obstruct her view with your hand so she can’t see anything beyond, she still goes on with this behavior.
This usually lasts a minute or so and then she is back to normal. We don’t know if this is a form of seizure, some other phenomena or nothing at all.
We plan to ask the Neurologist in a day or so.

We think Ella is a bit slow in lifting her head. It could be due to the fact that her head is large (in the 98th percentile) or she might just be slow in controlling it. Her left to right control has improved dramatically, it looks like she positions it where she intends to. Her cooing is becoming more expressive with a larger range of vocabulary. She has especially developed the ‘complaining while being given my medicine’ vocabulary. It is quite elaborate. We are thinking of seeing if the medicine is available in some other flavor, this one is becoming an ordeal to get down.

Last week we left for West Virginia for the family reunion. It was Ella’s first big trip and all of our’s first trip in an RV camper. We rented one for the weekend. Ella was a pretty good traveler. She sat contently in her car seat and only cried when she was hungry at which point we’d stop and I would nurse her. Ella is suddenly touching her face alot. She rubs her eyes and nose with the back of her hands and grabs onto her big ear on the right side and pulls and rubs it.

She still looks off to the right most of the time which is worrisome but maybe to be expected since the right side is controlled by the left side of the brain which is Ella’s good side. She is still not holding her head up completely but she does have good control to turn it from side to side. I went to a “parent support group” yesterday at Early Intervention which turned out to be more of a Mom-baby group. Ella was much younger than all the kids there. Also, her situation seems different. I still don’t know where parents of kids with birth defects get together, if at all.

We met with the neurosurgeon last week, Dr. Madsen. There was some kind of a mixup which was extremely frustrating. We got there and no one in the dept. knew of our appointment and referral. After spending an hour getting that straightened out, we finally met with Madsen who apparently has dealt with hemimegalencephaly (he usually does epilepsy surgery).

He told us more about hemisperectomies, but told us that at this point the discussion is hypothetical because Ella’s seizures are under control with medication. However, if she does need radical brain surgery it is better to have it done before the age of six so that the other half of the brain will have the best chance to compensate for any functions lost. He also told us something new about Ella. Her right lateral ventricle is overly large which is atypical even for HME. He suggests having this monitored by ultrasound and frequent head measurement. She may need a shunt for this or some other treatment. Tomorrow we have an appointment with a geneticist who will check Ella.

We are a bit worried about the fact that Ella doesn’t seem to be tracking things she is looking at. I have very little comparative experience so I am not sure at what age this is supposed to be happening. Ella will look at you very closely and interactively if you enter her field of view, but it is very rare that you will be able to get her attention by calling her or making noises, and make her turn and face you. Also, if you move away sideways, she will usually not track your movement. It is as if the connection between sound and spatial location hasn’t been made yet. On the other hand she is cooing more and more and if you talk to her she will take part in the conversation. What is also uncanny is how content she is. You have never seen a being so happy with her current condition, unless she is hungry; she has a satisfied, happy look on her face. It makes it very easy to be with her.

We had our meeting with Early Intervention today. This was to be the meeting where they would present us with a plan for the continuing involvement of Early Intervention with Ella’s development. I found ‘the plan’ to be a bit bland and derived a little too much from our input rather than from their expertise and knowledge. Somehow I expected them to go away, research Ella’s condition a bit and then return with some very specific things that needed attention, plus suggestions about the way that they need to be addressed. Instead, the goals were dictated by us, namely ‘we want to make sure Ella’s development is as close to normal as possible’.
Still, I am happy that they (Early Intervention) exist and that an external pair of eyes will come and evaluate how she is doing once in a while. The end result is that an Early Intervention worker will come and work with Ella once every two weeks.
We’ll see.

First thing this morning I called to ask why we were rescheduled by the plastic surgeon’s office to see a different surgeon tomorrow who I found out by looking her up on the web is actually a neurosurgeon. Strange. They only told us after the appointment was cancelled because of the power shortage that Dr. Mulliken (big name in cranio-facial surgery) thought this other surgeon more apropriate. As it turns out we were referred to this neurosurgeon because “Dr. Mulliken is concerned about the back of her skull”. That is news to us and we don’t know what is going on.

I’m starting to get really worn out by all this calling around to different doctors and everyone of them needs a referral from the Primary Care Physician! Otherwise, Mary, our part-time nanny is working out well (like a dream actually). She seems very good with Ella – especially at giving her baths and cleaning her neck rash. This apparently comes from sweating between the folds in her skin there. It is very red and oozes. Apparently this is baby stuff common between 2 and 4 months.

Our periodic checkup with Dr. Duplessis went as well as could be expected. The goal of controlling Ella’s seizures was, for now, accomplished. Ella hasn’t had any since her release from the hospital. We were worried about her medication dosage since she has been growing a lot. The doctor confirmed, and raised the dosage.
It is getting more difficult to give her the medicine (even though it seems she is getting better at swallowing it), The dose at night has now been doubled and that means we have to give her two syringes full of the yucky red stuff. I think it is more painful for us than for her. All the rest of our questions for the doctor were answered in more or less the same fashion. ‘we will just have to wait and see’.

Some little things to be happy about, and we latch on to any one of these with zeal. Ella’s skin has mostly cleared up, for the past two weeks she had what is called cradle cap, a scaly kind of skin appearing in various places on her head. Not dangerous, just ugly. Also she is finding the black and white patterns that we are hanging all over for her benefit, fascinating, and stares at them with visible pleasure. Today Nicole, a physical therapist from Early Intervention is coming over for her first session with Ella. There isn’t any particular weakness that they are addressing at this time; it is basically to get started with the routine. Also, moving Ella to her room for the night has done wonders all around. Last night she slept nearly 8 hours till being fed at 6:00AM. I guess our presence made it difficult for her to sleep, or maybe it is a reciprocal effect, we worry about her and she senses it. The short story is that in her room she sleeps better.

Of course, no live person is around at Children’s Hospital to reschedule for the plastic surgeon! Ella slept in her room for the first time last night. She was making too many noises — gurgling and cooing — for me to sleep well between feedings, so she graduated to her own room. That seemed to work well. She is sleeping now consistently for four hour stretches.

A strange phenomenon occurs when I look at her in a mirror. Her face seems completely distorted much more so than when I look at her straight on. It’s uncanny but Etan says it is usual optical occurence with anyone’s face. He also suggested that I stop looking at her in the mirror.