Ella's Pages

Being with Ella is exciting now because she is doing so much more than ever before. New things are happening every day – like holding her little bottles by the handles. Her command over the pacifier is much greater and she is much more interested in all her toys. She can operate her musical Mozart cube and has figured out how to let the cow out of the barn in her little ranch house! We had the long-awaited BBQ last weekend with the families of Haley and Will, two other toddlers who’ve had hemispherectomies at Children’s by Dr. Black within the recent past. I felt encouraged to meet them. Both kids are doing very well – walking and talking now. Each family has traveled their own road, yet there were so many similar junctions. We had so much to talk about. I’m becoming convinced now of what I have heard before: these are happy kids with sweet dispositions. I don’t know why and I have no idea how such a generalization can be made. Maybe, they have no brain left to spare for negative behaviors.

Ella is moving ahead slowly but surely. We would like to see faster development — but no one is asking us. The realization that all she is doing is happening two months after half her brain was removed, is always a source of amazement. Ella recently discovered the joys of water, she sits in our inflatable wading pool, she has already been to the lake, and a swimming pool. The activity there knocks her out but is thoroughly enjoyable. She kicks about, splashes and grabs at floating toys. Michelle takes her to aqua-therapy once a week and there they do slightly more structured exercises. Another recent discovery is that if she flings a toy to the ground we will usually pick it up and bring it to her. Ella is experimenting with this phenomena and is consistently fascinated by it. Progress has also been made in holding a bottle. She has managed (several times now) to hold a bottle (of the smaller variety) and finish its contents with no intervention from us. This is very encouraging. Mind you, it is all done with the right hand, there is no consideration for letting the left take part. Lastly, Ella experiments much more with vocalizing. For some reason the most expressive of these experiments happen while driving in the car. A whole variety of sounds are produced, screeches, yelps, humming. All with a smile on her face. Next week is our test case for real travel. We have been homebound for the past year, not daring to venture out for fear some complication in Ella’s condition would happen when we were away from Children’s Hospital. Well, next week we are going by train to Cleveland and back by air. If this all goes well, it will prove to us that travel is possible, we might try something more adventurous. Our picture of how Ella is doing changes wildly. When we are exposed to other kids we realize very painfully what Ella is not doing. Other times we are impressed with what she is doing. What makes this whole process easy (I am using the term ‘easy’ in a way very different than it is usually used) is that Ella is so wonderful. She is cheerful, accommodating, interactive and entertained which makes it fun to be with her.

Ella is doing a little better every day. There is still much to worry about (for example, Ella’s facial deformity) but she is so much more interactive and just happy! which is always nice to see. We started aqua therapy last Tuesday which was alot of fun — more so for me than Ella, but it’s hard to tell. We went to a therapeutic pool in Waltham. The “therapeutic” piece is the water temperature: 92 degrees. The physical therapist, Donalee, seems very experienced. She showed me some exercises to do with Ella that encourage her to bear weight on her lower body and improve head and neck control.

Ella has a buddy in the session — another girl who is 2 years old. It was interesting to see the interaction of the two. It was minimal, but Ella immediately went pawing after Jamie’s arm when they did the “magic carpet” exercise which is a thin foam mat that Donalee floats on the water and then has them sit on as she pulls it around. The nice thing about the water, is that it gives extra support. Actually, Ella is becoming quite a water baby. We’ve been in our little wading pool every day over the past week and she loves it. She kicks like a maniac and splashes with her right arm. Today I took Ella to Crystal Lake. She enjoyed the sand and water but I think she was a bit in shock with so many new things around. Her movements were a bit subdued. We hope to see Ella rolling soon. She is close to it, but then again, one never knows…

Today we took Ella to visit Ruti & Harel in Rhode Island. We all went to a beach about an hour’s drive from them. All in all we were in the car about 5 hours. Ella was fine with the whole trip. She must have slept about an hour the whole day and is still going strong at 10:30 at night! Usually she has a nap in the morning and one in the afternoon so today was a really crazy day. The great thing about Ella is even when it appears like being fussy is in order, she’s smiling and having a good time. She seemed pretty entertained throughout the day. Ella’s started enjoying the wading pool in our backyard. We’ve taken her in everyday this past week. After the initial entrance into the water she starts splashing and kicking. She loves it. Actually, the splashing takes place only with her right hand. Also, the other day, I heard her grating her teeth together. She has one spot where she has teeth both on the bottom and the top.

Ella had a couple of Ritz crackers today for the first time. She is pretty consistent at flopping down on her back from a sidelying position. So, there are quite a few new developments in the last few days. Still, incremental progress is slow, but steady. Most of the time we are thrilled with these little things. It makes us believe that the surgery has been Ella’s REbirth. Happy Birthday Ella!

Ella is 1! On the one hand it seems like the time just flew by taking maybe five minutes, on the other, with all the dramas, discoveries, consultations, hospitalizations, anxiety, relief, new anxiety and then finally surgery… It seems like we’ve been doing nothing else all of our lives. Ella is 1 chronologically, it isn’t clear where she is developmentally. She lost a lot of time with the seizures, the medication, hospitalizations and surgery. It’s time for her to start catching up. We are noticing progress from time to time, when we realize she is doing something she never did before. Mostly people who see her only periodically notice these changes. They say they can’t believe the changes in her. We are happy to hear that but can’t always see it. One thing is consistent with Ella and that is the lack of consistency in her development. One day we will see her doing something (like swatting with her left hand, trying to grab something), the next day it isn’t repeated. There is no question whatsoever that she is in a better place than she was before surgery. I shutter to think what would have happened if we hadn’t insisted on going ahead with it. The pressure of her right hemisphere might have done permanent damage. It was very close, they say. She’d still be medicated to the max and the risk of seizures just around the corner. We are on our way to totally eliminating her medication. And in general she is much more ‘with it’, connected to what is happening around, recognizing things and reacting to them. She is amazingly good natured and fun to be with. I would have loved for Ella to be born without her restrictions, without the debilitating crippling conditions, to be given a fair chance. But that didn’t happen…

Now that we are here, I can’t wait to see where Ella goes next.

Stay tuned…

Ella continues to improve by very small increments daily. Sometimes she seems very alert, like when I’m feeding her and she is hungry. She can be very interactive then and have good head control and eye contact. At other times she seems subdued and spacey. I assume this is due to the soreness or weakness she may still have from the surgery. In any case, we are taking her out more and it is such a pleasure not to have to worry about the seizures that could have come at any time. Ella is getting more proficient at using her right hand. Her left is lagging far behind now and the therapists say she has some tightness in her left leg that we have to watch out for (and stretch her leg from time to time). This weakness in the left side (hemiparesis) is to be expected and I guess that is where much of the therapy will focus in the next years. In two weeks I will start taking Ella to aquatic therapy. We met yesterday with the therapist — Donalee. She seems very experienced. Also, Ella’s test dermabrasion, to test this method for treatment of her facial nevus (dark patch birthmark) has now been scheduled for August 9th with Dr. Mulliken.

A CAT scan was scheduled for today to find out what the cause of the bulge on Ella’s head. It caused us quite a bit of worry. Our current anxiety has to do with Hydrocephalus which Ella is at risk for, and apparently will always be. The process went smoothly. Ella was sedated orally and the scan was carried out without a hitch. We asked them to include imaging of the whole head. This could prove useful for consults with plastic surgeons later (this took some cajoling and conversations with the plastic surgeon). Right after that we met with Dr. Black the neurosurgeon that performed Ella’s hemispherectomy. He told us everything looks fine! There is no cause for alarm now. This is great news! The lump on Ella’s head has gone down to normal. It might have been caused by the helmet she is still wearing at night to help shape her skull. It isn’t clear. Things Ella is discovering recently include: vocalizing more and more, putting things in her mouth and throwing them on the floor (not always in that order), riding in the car is fun, Barney videos are AMAZING! She is also is doing better at holding herself when she is sat up. We try and stimulate her left arm and hand because left to herself she will do nothing with them. It gets colder and then she uses it even less. We understand this is a long process and are hoping she will gain functionality in time. Ella sleeps less now and is in very good spirits, always ready for a smile.

Ella seems to be progressing a little bit each day but there are still plenty of things to worry about. I called Dr. Mulliken’s office to reschedule the dermabrasion of her nevus. For some reason, that no one seems to want to explain to us, Dr. Mulliken doesn’t want to schedule it (yet). I think he doesn’t want to do anything until the hemispherectomy is well behind us. In the meantime her nevus gets thicker, darker and rougher. I made an appointment for her to see a different pediatric cranio-facial surgeon at Mass General. Maybe he’ll have some insights other than “Well I’ve never seen this before.” It would be nice to have some feeling of being treated but that certainly isn’t the feeling we’ve had so far from the Cranio-facial team at Children’s. In the meantime therapists are coming and going on a daily basis, working on getting Ella to move as much as possible. Next week Ella has an evaluation set up for aquatic therapy. If that is appropriate for her, it might be fun. I hope all this therapy is helping. She seems to be proudly moving her head around from side to side which is new. This morning we noticed that the right side of her head is swollen and I’ve consulted with Dr. Sacco by phone who suggested getting in touch with Dr. Black. He is in clinic and practically completely unreachable. Ella is at least acting normally although this protrusion is worrying us. In short, the worries never end and feel like they never will.

Ella’s EEG was done today. The results are the best that anyone could have expected. There is no seizure activity whatsoever!!. No trace of the old devil. They tested Ella in sleep and awake states and tried to induce seizure activity with strobe light. Nothing, nada, kloom. The right hemisphere showed, as expected, no activity, nothing there. The left, totally normal brain activity. Dr. Duffy whom we met with afterwards was very enthusiastic. His plan is to reduce the remaining medication Ella is taking to nothing in a span of two months. He also remarked that we might see better results than we thought concerning the use of her left hand. He is basing this on the fact that she started moving her left side right after surgery, which isn’t typical. Ella is doing ok. We are waiting for dramatic changes, a move towards turning over or sitting up. This probably won’t happen. It’s going to be a gradual process. As long as it moves forward. That’s fine. The pain she seemed to have when being moved is all but gone. She is quite content most of the time.

I often find unbelievable the changes that are taking place with Ella — and in such a short time after the surgery! Ella is doing so well…. She is eating well and sleeping well and with each day that passes she complains a bit less when moved around.

She is really starting to make some strides (well not on her feet yet, but…). Friday she showed more interest then ever in her Fisher-Price piano when I placed it on the tray of her KitKart. On Saturday, Amanda (Respite Care Babysitter/therapist) was playing with her while helping her with a bit of additional support and Ella was really playing. She was hitting keys with both hands! When I gave her a similar, yet simplier toy that has a few buttons and shapes that light up she hit the buttons so furiously — as if to say “Okay I got this one already.” When Karen, her great aunt, came to visit and saw her piano skills she declared that if she can teach Gaul to play the piano (which she has) she can teach Ella! In short, every day there are new skills gained. Progess is slow, but steady. I’m feeling that things could not have gone better with the surgery — so far.

We still have a few milestones ahead: the EEG this week and CT scan at the end of the month. But we are a very happy bunch these days!