Ella's Pages

Ella’s progress continues. The trick seems to be just having her stand as much as possible. It is not easy because she needs constant support. I can put her into the gait trainer (or the laundry basket contraption) but she can sit down in that. The gait trainer is so bulky she can’t go far without running into things and then you have to straighten her out. She hasn’t got the directional piece yet. But she is getting stronger and stronger. Balance will take more time, but just being able to stand her up while you put her coat on makes things much easier. We now have a date for Ella’s surgery in Chicago. It will be on February 10th and we’ll get there a few days before. This is a big deal with three of Children’s Memorial Hospital’s top surgeons: Dr. Bauer for the soft tissue, Dr. Patel for the bone and possibly Dr. Tomita who is head of neurosurgery. I spoke with Dr. Patel at length on Friday. He explained the risks to me and more or less what needs to be done. He will see Ella over the weekend before the surgery and at that time he will show us the skull model and explain things more thoroughly. The main dangers are the loss of teeth, possible damage to one branch of the facial nerve and loss of sensation on inside of the mouth on the enlarged side.

The other important thing that he said was that from previous experience with hemi-hypertrophy patients they always found that they had to be agressive early on with the surgery to make a difference. This is exactly what Dr. McCarthy said in NY. So, its clear. I’m always wondering whether this surgery will work and if it is worth the risks. I have become used to Ella’s assymetry. However, I also know that at puberty things will get much worse if left alone. As it is, we wonder sometimes how Ella can even chew. Even her teeth and tongue on that one side are huge. I can’t say how happy I am that we are working with the team in Chicago. Of all the plastic surgeon teams we’ve met so far, they have been the most personable, available and caring. Makes us feel much better about making the effort to go there and also lucky to have found them.

We’ve been going to holiday parties lately and on the one hand we are happy to see our friends. Many of them haven’t met Ella or Netta yet and many haven’t seen Ella in a long time. Despite Ella’s progress, when we see her together with other kids her age, the developmental delay is really pronounced and that’s hard to face up to. We know Ella is very behind with her gross motor skills (walking, sitting up, standing, etc.) but we tend not to recognize how far behind she is cognitively until we compare her with kids her age (not a good idea, but one can’t help it). Ella does alot of vocalizing, grunting mostly, but rarely is able to get the idea accross of what she wants. It’s frustrating and also, I have the feeling that I never really know what’s going on with her. For example, the potty. Lately, we’ve been putting her on the potty and she invariable does her thing pretty quick. It seems like she really understands the concept. (She also loves hearing the potty training book (hebrew version: Sir HaSirim). Yet I’m thinking: could it be that she really understands the whole thing or is this just all coincidence? Then for eating — no matter how much we yell at her she still throws her food and crumbles it like she just doesn’t get that food is not a toy. She still explores things with her mounth like a very young baby (Netta is far past that stage) yet her concentration when we read books to her and ask her to point to the main character is intense, as if she hangs on every word. Sometimes, she’ll bolt across the living room walking with us only stabilizing her hips. Other times, especially when we aren’t at home, she won’t tolerate a second of standing and just curls up her legs. So go figure? It is frustrating and Etan and I wonder what her cognitive abilties will ultimately be. I guess one can’t really expect to know. We try to take each day at a time but it’s hard when she is so heavy and my back is about to give out. I don’t see the light at the end of the tunnel.

Some days Ella’s condition just gets to me more than others. Today, after a really good walking session, I left Ella on the sofa for a minute with a toy, to fill her sippy cup. I returned to find her laying on her left side, stuck, unable to get up. Not making a sound, just looking around. The sadness of that helplessness was almost too much. The not knowing how self sufficient she will ever be.

I want to always be around to protect her. But I won’t. I try to focus on the progress she is making.

Big breakthrough in Ella’s walking today! Up till now I would have to hold Ella at the hips and help her shift her weight from side to side in order to pretend walking. I also had one of my fingers tickle the back of her left knee to remind her to lift her leg at the right time. Today it was suddenly different. I held Ella somewhere just below her armpits and only provided stability and some help in shifting her weight. The rest of her leg motion was done by her completely. It was very exciting. We practiced for a full hour until I could no longer stand Gidi Gov, the music that was on for her benefit. With Ella progress is inconsistent. She moves forward and then the next day that progress is gone for a while and then back etc. I hope this change is here permanently and she continues to develop her walking. Curios to know how much of an incentive is having Netta running around constantly.

I sometimes can’t help but wonder what would have happened if that stupid event early on in Ella’s development hadn’t happened and that single cell that was later to become the right side of her head wouldn’t have become deformed, wouldn’t effect every other cell that was to grow on the right side of her head. She is so sweet and wonderful now. Without that happening… She would just fly! It is not fair.

Everything seemed to check out okay last Wednesday and Ella is making tons of progress – at her own pace as usual. She’s standing more, and likes walking in the gait trainer. Etan has been working on walking w/o any equipment. She still needs alot of support and one really has to put her legs forward one by one, but at least she is able to move upright. There was a time not long ago when I couldn’t even imagine her supporting weight on her legs. The tap showed intercranial pressure of 60 although her shunt is set at 40. Last time it was 110 when the shunt was set at 80 so the same ratio has remained more or less. Dr. Black concluded that the shunt is working just fine so there is no need to replace it. He didn’t seem concerned about the ventricles not decreasing in size. He said some people just have large ventricles. The important things is that the pressure is not too high. That is what he was worried about. So the pressure was set to its lowest, Ella had another x-ray to make sure that was the correct setting and that’s it. Dr. Black doesn’t need to see us for another six months! I was relieved and reassured. Plus, Ella has been really happy lately and proud of her progress. She even seems happy to have Netta around all the time and seems to have gotten over her

We got some worrisome news yesterday from Dr. Black’s nurse, Nancy. Dr. Black finally reviewed Ella’s CT scan that was done on Nov. 3rd. We were supposed to see him on Nov 12th but believe it or not we missed the appointment. I don’t even know how it happened. Probably with too many things going on around the house, with Netta, etc. etc. We just missed it! There had been some confusion about the date when I scheduled it and I that had something to do with it. As soon as I realized the mistake I called his office and we were told that he would review the scans and then get back to us by phone. That didn’t happen for a whole week although I called everyday. Finally, he did see the films and determined that the ventricles on the left side of the brain had still not gotten smaller even though the shunt was turned down about 2 months ago to near the lowest setting. (It’s set at 40 with 30 being the lowest). So there is suspicion that the shunt is not really set at the setting it reads meaning a possible malfunction. So, this signifies two negative issues: 1) the large ventricles mean that Ella’s brain is not growing enough; and 2) she might need to have the shunt replaced which would require another surgery. So we are worried again. I’m especially worried that Ella’s development has been affected by all this. Although she has made many strides I think her development is alot slower than other hemispherectomy kids that I have seen – namely Will and Haley. Next Wed. Ella will have a tap done again to her shunt. That will determine the true intercranial pressure and if it is not much lower than before I guess the shunt should be replaced. On the other hand, if the pressure is low than that could mean something’s just not growing right. Either way, it’s bad news. I guess I prefer at least having something to work with and the hope that something can be done to reduce the ventricle size and get her brain growing as much as possible.

Ella’s continued to make great progress. She’s now really walking across the living room with the help of the gait trainer. We put one of her favorite toys on her table and have her walk to it, but even if she doesn’t have a toy in front of her she’s willing to go. Now, she’s using her left leg too. Netta and I work as cheerleaders as she trudges past us. I have to keep Netta from rushing up and pushing the gait trainer along. She knows what we want but she doesn’t know that Ella has to do it herself. Also, Ella has pooped twice on the potty! I’m not sure she knows what she is doing yet but it’s good practice. Also, using the sippy cup is old hat. The dynamics between the two girls is very interesting. So far, Netta is consistently imitating Ella — she wants to eat the same food and play with the same toys as Ella and make the same sounds. Unfortunately, the imitating also means throwing the sippy cup on the floor after Ella does. Hopefully, Netta will start imitating some very positive behaviors of Ella — for example, sleeping the whole night and not crying in bed!

Ella made great STRIDES today. Colleen, Ella’s PT, wrote in her notes: “Ella walked today!”. That says it all. We were so excited. Ella has been put into the gait trainer many times since we’ve had it, which is about a year already. She never was able to do more than stand in with it for a very short time. Today she just started moving forward using her right leg. A great milestone for us! Also, Ella’s starting to use a sippy cup and leave the bottle behind. I’ve really had to force it on her though. I think it is just stubborness and habit. There is no reason why she shouldn’t be able to suck a sippy cup. So, we are just not giving her a bottle anymore. She pushes the cup away so its really a fight but I figure if she gets thirsty enough she’ll drink it.