Ella's Pages

Today we had the long awaited “conference” at the Institute of Reconstructive Surgery at NYU Medical Center. We made a three-day weekend out of the trip. We stayed with Etan’s brother in Manhattan and made it over to the Institute early this morning. It took us longer than expected to arrive because we couldn’t find an available cab. So, after over an hour’s wait (apparently they had some unexpected delays with families coming from Ireland and Poland) we were called into a room filled with about 20 doctors. Finally, it felt like we have found the sought after “team” approach to Ella’s plastic surgery needs. She was examined, while asleep, by a dentist/orthodontist and we chatted with their neurosurgeon. Dr. Joe McCarthy headed up the team. He was like the NY version of Dr. Mulliken (suit and tie instead of bow tie). They had us sit up at the very front of the room. Dr. McCarthy asked what our main concern was at this point. I thought it was pretty obvious but I think the whole issue of the half missing brain was somehow foremost in their minds. The meeting was intimidating, like we were on trial, until we saw one of the young doctors in the front row nodding off to sleep as we spoke. Anyway…another couple of hours passed in the waiting room and cafeteria. Then Dr. McCarthy with his fellow called us in for a summary and his recommendations following the conference. The most important points were regarding timing and he recommended seeing Dr. DuLacure, a plastic surgeon who deals a lot with the facial nerve in cancer patients. Immediately, the team nurse suggested getting Dr. D. to “pop in” if he was in the hospital. Luckily, very luckily, by the end of the day we had seen him too. Dr. McCarthy thought earlier was better for the surgery since the soft tissue growth may be driving the bone growth. We definetly had more of a feeling of a group effort. The whole day made me feel hopeful about Ella’s craniofacial issues.

I gave Ella her first real haircut (other than getting her head shaved for operations) a few days ago. I tried to straighten it out some because for the shunt operation, her head was shaved only on one side in the back. She looks like such a big girl sometimes. Work and school have kept me away from home so much the last few days that I have barely even seen Ella awake. I’ve heard that the new progress is kneeling. Etan reports that she does that well and is able to balance and straighten up when positioned on her knees. It is hard to imagine. When she falls back from a sitting position she still can’t get up again so it seems that her motor skills are very behind. But I guess she makes progress in some areas and not in others making her development very uneven. Ella is getting better control over chewing and when I sneak small peices of string cheese in with her pureed food, they don’t come back out as before. She chews and swallows them. One thing is for sure, whatever the progress — Ella is almost always happy and smiling with us which makes up for any lack of progress.

Ella had her 15 month appointment with the pediatrician a week ago today. Surprisingly, she hadn’t gained much weight and her head size departed from the charts long ago. Oh well, that’s not surprising. She doesn’t look undernourished and she’s been eating whole bowls of food at every meal so I’m not concerned (and Dr. Becker wasn’t either) about that. She had 3 immunizations, including a vaccine for chicken pox. Since she is allergic to eggs and one of the vaccines is egg based, I had to stay at the pediatrician’s office for an hour so they could observe her reaction. Everything went fine. Of course she screamed bloody murder when immediately after the first shot, two nurses came at her simultaneously with a syringe on each side right into the thigh. But she soon forgot that and was playing happily, covering the examination table with cookie crumbs. Today we went to see an acupuncturist about stimulating her left side. Apparently, acupuncture is successful treatment for hemiparesis, especially for stroke victims. Ella has a congenital problem so it is different, but may be worth a try. The doctor seemed hopeful but was unsure himself how much acupuncture could influence the weakness.

Ella is doing wonderfully, all things considered. Little progress every day is the norm. As Etan said once: it is like seeing baby develop in slow motion. This past weekend, starting almost a week ago, Ella was quite sick. The first night she had a fever of 103.4 F. We kept her on a constant regime of tylenol every four hours; she’d start trembling just as the tylenol lost its effect. And she whined, sometimes didn’t eat well and would fuss alot when picked up, turned or changed. On Friday Beth (nanny) and I took her to the pediatrician’s to make sure it wasn’t an ear infection or urinary tract or worse (i.e., fluid build up in the brain). He saw that she had a sore throat and figured it was viral. By Sunday late afternoon she was better. What a relief that she was able to endure the high fever without seizures! Now she is back to herself. The new achievement is eating graham crackers. She really stuffs them in now. Before she would end up thrusting out with her tongue whatever went in. Now the cracker actually disappears and it’s not on the floor either. Today we got very good reports from Beth on aqua therapy. Next challenge: for Etan and I to get a solid night’s sleep without being awaken by Ella.

Ella is doing very well, with a little progress every day. She is eating like a horse, except for yesterday when Yvette reported that she was very cranky and seemed to have an upset stomach. She is getting heavy to the point where I’m feeling some strain on my back. She is biting and chewing cookies and crackers, plus now she has a new table, courtesy of the Perkins School for the Blind workshop. We’ve been waiting for the table for about a month and a half since Barbara (vision therapist) took measurements for it. Ella looks like a little lawyer or at least like she is ready for school work, when sitting at it. Cognitively Ella seems to be closing the delay gap, however, her gross motor skills are still very far behind. She still gets upset when forced (in therapy) to bear weight on her arms.

Today Etan spent all day in the hospital with Ella. First she had a CT scan, then she saw Dr. Black in the afternoon and he adjusted the shunt setting. Then, she had to get an X-ray to see whether the setting was correct. It was the end of the day already — about 5 pm –when Ella and Etan finally got home. Dr. Black had the shunt pressure turned down from 180 to 140. The x-ray showed a reading of 145 which is fine. Ultimately, Dr. B wants the pressure down to around 100. Ella is doing very well in general although I feel like I’ve only had time to enjoy her progress in snipets because I’ve been so busy lately. New developments are eating crackers and a small part of one of Yvette’s cookies (tonight). Ella is sitting much better and of course there was the exciting event when Ella actually chose the triangular block from among all the block shapes she pulled out of her shape game bucket b/c this is the one she wanted to suck on! Ella seems to be improving greatly in her sitting abilities. Now she is really able to do other things as she sits — like feeding herself and reach far out in front of her. This is definitely an exciting time for us.

Here’s how it is going with Ella… Great! Ella is making progress daily. It is slow but it is constant. Her sitting abilities have improved dramatically, she can sit for prolonged periods of time on her own with no support. This works best when there is something to fascinate her, a movie or a new toy. She is discovering a new type of toy now. Up until now her toys were cause and effect toys, you touch them, they beep. This is endlessly exciting. Now she is slowly learning sorting toys, and putting things in places. Jackie, Ella’s physical therapists reports that Ella has be seen using her left hand to perform a willful action. She placed a toy with beads on Ella’s left side and more than once, Ella grabbed at the beads with her left hand. This is very encouraging. Here is the best news though. On Friday we had our periodic visit with Dr. Duffy. It was the first time he saw her at her awake, aware, post surgery state. He was amazed! He said she has made tremendous progress and was very encouraging. This is just the beginning, he claimed. He said there is a period of about two years where kids (post hemispherectomy) make up their deficit. She has no traces of seizure activity, she is on no medication so our next appointment with him is (get this) …. In one year! Major milestones lay ahead. Ella needs to bear weight on her arms and legs so she can start crawling. (we’ve actually heard of hemisperectomy kids that skipped crawling altogether and started walking. The crawling can be too difficult with the weak side not bearing the weight well), Lots progress needs to be done in vocalizing. And then there is chemistry and creative writing… Beth (Ella’s Nanny) is doing a wonderful job keeping Ella active, interested and challenged throughout the day. Ella is as happy as ever. I worry a lot about Ella’s future, and the hardships that lay ahead of her (and us). Still, it’s nice to get some encouragement from time to time.

Ella is making tons of progress now. Mostly in the way of sitting. She plays with her toys non-stop and is so intent on getting them to do what she wants. This usually can be characterized as making noise and flinging around, often in the direction of the floor. She does everything with the right hand. Sometimes her left arm remains kind of folded up. It is a real challenge to get her to try to use it. This morning Ella threw up violently for no reason. I gave her vitamin syrup (as usual) and she nursed. Then she coughed gagged and threw the whole thing up. She seemed fine after that and is even going with Beth today to aqua therapy after a long break due to the shunt & sickness.

Ella Saw Dr. Black today us a follow-up to surgery. Dr. Black said she was doing great. The pressure is apparently kept at bay by the shunt, the skull seems to be closing gradually and Ella is feeling fine. The plan is to have a CT scan done in two weeks to monitor the pressure and if all is okay to reduce the pressure to something closer to normal. The reason it is done gradually is to allow the skull to slowly come together. If the pressure is reduced quickly, the skull sides might overlap. The bandages are now off, One can see the bulge in the back of the head where the shunt is inserted. It will remain as a little bulge but her hair will cover it. One thing that is disconcerting (yes, right, One thing…) There is currently no way to know what the pressure in Ella’s brain is. The only way doctors know is using circumstantial evidence. They take x-rays and CT scans and compare them, looking for changes in geometry. Hopefully in a few years there will be such a device that won’t leave us guessing about the current risks of hydrocephalus. Ella is making daily progress. She is sitting up by herself (she still needs to be put in that position) and can stay prone for a while. She plays with vigor and concentration. She is amused and laughs a lot. Her appetite returned and she is much less fussy about the food. She is also starting to recognize crackers as food and not only things to be flung to the floor.

We got home from the hospital on Saturday by about noon. Since the surgery Ella’s only improved. Little by little she started feeling better and was able to sit up more in her bed (well that is, be propped up more). By the time she left the hospital, she was back to her old past time of twisting a toy around in front of her face and smiling — and composing on the piano. She remained sore in the back of the head around the bandage and cired when being moved. Today (Monday) is the first day that I haven’t noticed any special sensitivity. The back of her head is unsightly since they shaved a strip of her hair and she has a big bandage over the shunt valve which to our surprise, one can easily feel and see that she has under her skin. The opening in her skull has not closed although the skin is not taut there as it was before due to the build up of cerebral spinal fluid (CSF) causing pressure. Now that is being decreased through use of the shunt. Finally, today Ella ate a big dinner of sweet potatoe and yogurt. She has her appetite back with a vengence and she is happy, expressive, alert and interested in everything again. We are so happy to have her “old” self back. She definetly was in alot of discomfort before they discovered the hydrocephalus. She’s still teething alot but she has almost no complaints!