Ella's Pages

Ella started her second year of pre-school today. Everything got off to a slow start b/c there was some kind of gas leak at Newton South (High School) so the bus was very late. Etan ended up driving her over to the school with Netta in tow. He reported that there was alot of action over there as all the parents brought their pre-schoolers in for the first day. I took Ella over to the school for an hour of acclimation a couple of days ago. Ella surprised me by being visibly shy for the first few minutes. All of the “typical” kids are new and the only one who came that day and seemed to be special needs in any way was Shira who Ella doesn’t really know either. (But they had a playdate yesterday and Ella loved Shira’s toys). That was only half the class though on Monday. A couple of kids are continuing. After getting over being shy (with hands in her mouth and everything) Ella loved being in school again. When the kids sat in a circle and Kim read them a story Ella was just screaming with joy and flapping her arms and legs all over the place. Ella seems so much more interactive now. She is just more “with it”. She’s been playing this funny game with Netta. Ella will say a long drawn out and very loud “ABBAHHH!” and then Netta will yell, “Don’t say Aba!” and then Ella will laugh and laugh and then she’ll say it again. It is pretty funny b/c the girls try to outdo themselves. At one point Ella tricked Netta. She didn’t say Aba when Netta told her not to. After a short silence. Netta quipped “Ella, SAY ABA!” All this makes for a pretty noisy dinner. I wouldn’t be surprised if the whole neighborhood hears us.

Ella seems to be making more progress all of a sudden. Last weekend Etan and I confirmed to each other that there were a number of new developments just over the weekend. For example, while sitting with Ella in the bathroom, waiting for Ella to do her thing, we’ve been teaching her words (in Hebrew) by pointing to things telling her what they are called. Then we ask her and she’ll point to the objects by name. Her new words (receptive) are toilet paper, towel, soap, window..etc. Even more exciting is that when we had guests over the weekend, Ella learned their names right away. We’ll ask: Where is Anton? and she’ll point him right out. Ella loves using her pointer-finger and to be honest, there was awhile there when I thought it would she would never get “pointing” so we are thrilled. Amazing how much the ability to point is an essential tool. Ella’s walking is getting stronger and she will lie down from a sitting position or get back up pretty much on command. As for speaking, in that area too, Ella has made significant progress. I can’t say that she “talks” b/c her language is so inconsistent but now there are a few words that seem like they come out whenever she wants them: Aba, Ema, I want and frequently: I’m all done. Tonight we are having Karin, Andrew and Todd over for a barbeque. We met them at the Craniofacial conference. Andrew was born without a jaw…He’s fine cognitively which makes a big difference. We went to see an opthamologist who has some experience with plastic surgery and eyelid reconstruction. She seemed to think that Ella’s eye would be fine for a few years and there is no need to rush to fix it. It made sense to both Etan and I to wait and see what happens in subsequent surgeries. We have another appointment in October at Mass Eye and Ear.

We are now in Las Vegas at the 1st North American Craniofacial Families Conference (a funny name when you think about it). We are having a great time and have learned a few things. Ella’s cranio-facial condition seems mild when compared to some of the other ones here however, she is one of the younger participants and has only had a “chance” to have 3 plastic surgeries. Some of these people have lost count how many surgeries they’ve had. We also learned, what we have come to realize over time, that usually these problems are never ultimately “fixed” only improved. Right off, we saw on one of the vendor tables a picture of a baby that looked like Ella did when she was born. This is a girl named Amber who is now 25. She has what Ella has (called by her “hemi hypertrophy gigantism”) and Dr. Bauer has been her doctor over the years. She’s not at the coference but people know her and she wrote an essay about herself in one of the newsletters. The big difference is that she has no neurological involvement. She’s in college and has been very successful in life. Good to know, but obviously Ella is faced with significant other challenges. In some ways, that makes dealing with the cranio-facial stuff easier b/c we are so focused on Ella’s development. Those people that only have cleft lip to deal with for example, can talk to you for hours about that. Ella’s craniofacial stuff at times seems like a minor side issue. This is not a large conference which makes it easy to get to know everyone. The sessions have been very good and we are looking forward to more today. We also had a great time at the dinner party last night. Ella and Netta rocked the night away!

A lot has happened and there are small new developments with Ella all the time. I emphasize “small”. Ella had her 4th birthday last week. She finished the school year with a super play performed by two of the classes at her school. It was a theatrical version of Eric Carle’s: The Hungry Caterpillar. Ella was one of four oranges. The worm, (played by Nate), came by and picked a velcro-ed picture off an orange of the placard hanging around her neck. Ella loved the whole ordeal. When she made her way into the room packed with parents with all of her classmates she burst out in “movin’ & shakin” as she does when she’s very excited. She stood on the stage with her walker, playing her part, and was so excited she would have gone straight into the audience if Amy hadn’t been holding her back. All in all, it was a fun experience for her. School doesn’t start again until July 11th. Now she is at home with Beth all day and yesterday woke up with a high fever. We rushed her to Dr. Marcus b/c the fever was so high and also b/c she has this lump in her neck under her ear. We noticed it a few days ago but weren’t sure what to do about it. It seemed too much of a coincidence that it wouldn’t have something to do with the surgery but then there have been stranger coincidences before. Anyhow, we wanted to rule out this being related to an infection plus we thought the doctor should see it anyhow. Etan sent off pictures of the area to Drs. Bauer and Patel too. Since then we’ve heard back from them and Ella’s illness turned out to be viral. Sore throat but not strep. Netta just had the same thing starting last Thursday. Wow, this has been a difficult couple of months healthwise.

Ella and I made it back to Boston (we actually flew into Providence) just fine although Ella was cranky on the plane when I wanted her to walk on and off and walk to the lavatory. I decided not to push it too much as she may have been feeling weak and I wanted to spare the rest of the passengers on a full plane her nerve-wrenching whining. By Friday morning Ella was fine. We went to the Children’s Museum at the Chicago Navy Pier. That was jam packed with school kids of all ages, even though the museum is for the younger ages and grades. There wasn’t much Ella was interested in doing until the singer-guitar playing woman started her show. Ella danced incessantly for about half an hour. She was so excited and flapped her arms and shook her legs so enthusiastically I thought she might take off flying. So, I guess, Ella was back to herself. We went over to Victor’s for dinner again (take-out this time). Ella ate well and once she finished she immediately wanted to play with her cousin Annabelle’s toys (Annabelle was fast asleep). It was amazing to me how quickly Ella recovered. She apparently had no pain or discomfort by Friday and I didn’t use the Codein and Tylenol that I got specially flavored (bubblegum/grape) at all. Next time they admit her to the 23 hour observation unit from the start, I’ll trust them on it!

Ella was discharged late afternoon and we are now at Val and Adam’s apartment. There was a question about when Ella would be discharged today although she had her discharge written already when I got to the hospital at 7 am, the nurse didn’t think that she was drinking enough and didn’t want to discharge her. Apparently they have some rules about the amount a child must drink before coming completely off the IV and having it removed. I was a little concerned about Ella taking a million years to get her medication down. She was taking it in and then holding it in her mouth, some eventually got spit out etc., etc. Also she wasn’t acting herself yet and wouldn’t eat much. But finally we decided ‘good enough’ and we left about 4 pm with 3 different medications in hand. It did take me a while to get her last evening dose down but I didn’t give her any of the Codeine with Tylenol. I got some Tylenol suppositories from the supermarket and thought that would be enough. She has done fine since we left the hospital with no Codeine so I’d rather not give that to her since it makes her kind of out-of-it (maybe) and may hinder the medicine taking. Other than antibiotics she is also on steriods for the next couple of days to keep the swelling down. Her face is swollen on both sides, albeit more on the right, giving her a kind of babyface look. She was her happy self this evening. Watched a Sesame St. video, went with me to the supermarket and got excited, used her communication board a chose “singing” twice. Tommorrow we will try to go to the Children’s Museum at the Navy Pier. We are stuck here until Saturday since I wasn’t able to change my ticket without paying more than the price of the ticket itself to make changes. Looking forward to going home.

While I think Ella is doing fine, I’m happy that I just got the word from the resident via the nurse that she has can stay another night in the hospital. She still isn’t eating anything and also she’s not drinking much either. There’s alot of blood and fluid draining out of the back of her head which I would have a hard time dealing with at the Ronald MacDonald House where I’ll be staying tonight. Ella is taking some juice through the syringe but some is also dripping out the corner of her mouth. She’s very swollen around the neck. I can’t tell how swollen she is around her cheek and around the ear where there is apparently the big incision because she is so bandaged up. I wish I had a way to take a picture of her. She’s so cute in her big bandage that looks like a lopsided hat. Her eye looks better and not so droopy but again that is hard to see as well b/c of the swelling and because she is lying down. The resident ordered a dose of steriod to keep the swelling under control — after observing the swelling around her neck. Also, she’s on antibiotics and still the pain medication: codeine w/ tylenol, all given orally now. She’s taking them, slowly, and again, there is some of it she’s drooling out. So far so good….she’s twirling Kofiko around, watching Sesame St. videos non-stop and generally just waiting for time to pass (or I am). Looks like we are going home on Saturday even thought Ella will be discharged tomorrow.

I’m in the family center at Children’s Memorial and Ella is in the Surgical Observation Unit. Valerie is with her. I just went down to check them and they are both asleep. Ella, morphine induced and Val, as a result of being on call all Memorial day weekend till about 9 am this morning and not sleeping nights. I’m taking the opportunity to report that all is okay. Ella has come out of about an 2 hour surgery and she’s bandaged up on one side of her head. She has cried a bit but they’ve being giving her steady doses of pain meds so she’s groggy and been asleep most of that time. As usual it is hard to tell what the result is but going in Dr. Bauer laid out his plan with us for debulking the side of her face and taking out the metal plates that they put in when her bones were cut for the reshaping of her jaws during the last two surgeries. Surprisingly, Dr. Bauer forsees only an overnite stay in the hospital. Our plane tickets are for Sat. unfortunately. We had a great time coming here with lots of adventures. Etan, Gaul and Netta are on their way to the airport right now to go home tonite. More later…..

Well, It looks like we are going. The trip to Ella’s next operation starts tomorrow. The actual surgery will take place on Tuesday. I wish I was less ambivalent about the whole business. I wish the previous operations were a resounding success. That would make placing Ella in a new situation of pain, disorientation and inevitably some regression in the progress she has been making, a bit easier to justify. Does she look a bit better as a result of the previous operations? I would like to think so, but it isn’t conclusive. Also the loss of expressiveness of the right side of her face almost counters the benefits of the more symmetrical structure. Anyway… The plan is to drive there through some places that might make the whole experience not totally surgically inclined, such as Sesame Place, in Pennsylvania, and visiting Becky and Irad in Ohio. Ella has been showing new progress in several areas recently. I hate to put a dent in this trend. Her walking is improved. We now use a bandana to support her. She holds one end, we hold the other. The theory (Kim from Ella’s School is the origin of this) is that one day, down the line, we will be able to let go of our end and Ella will still have the security of the bandana in her hand. It is something like the cartoons where the character runs off the cliff but doesn’t fall so long as he doesn’t notice there is nothing below. Ella has almost consistently been pairing her ‘I Want’ with various (sometimes recognizable) words, such as Abba (which I happen to remember). She is using her communications board more to let us know what activity she is interested in, and in general makes it clearer what she wants. A week or so ago she blew me away when I was playing a puzzle with her. She has this puzzle that has animals in it, when one is removed or put back the puzzle makes the sound for that animal (moo for cow). Well, as she was randomly taking them out and putting them back, I asked her, ‘where is the cow’? She took it out with no hesitation, the right one. Coincidence, I thought. I tried for the cat…. Success. Dog… Ditto. What??? Yes. She knows all of them (about twelve) . We did them all. She gets them right. Both in Hebrew and English. I tried again a few days later and the same. Strangely Michelle didn’t have that success (I mean with Ella. Michelle knows where the cow is…). We’ve noticed that about Ella, she doesn’t like to perform. But she knows them! She gets them right!

Huge progress in communication: Ella is now saying “I want…”. Sometimes she adds a “to” at the end and we almost know what she means. But it is really like having a conversation with her. Last night I listened to the girls’ room once they were in bed with the door closed. Ella kept saying “I want”, “I want” and Netta was responding to her “You can’t have it!” “Somebody else took it…” and such. It was pretty funny. Beth has been working extremely hard on communication & Ella is her test-case for school and the subject of Beth’s research/studies right now. Beth has set up a myriad of different exercises and keeps testing Ella for improvements. This is great. Apparently they are working hard at school too with pointing, and asking, eye contact, choices and all these things. It is exciting although I’m always worried about losing something else when Ella makes a breakthrough in any one direction. For example, since I’ve been hearing the “I want”, I haven’t been hearing any “All done”s. Other than that we are getting ready for our upcoming trip to Chicago for Ella surgery. Hopefully, it will happen this time although I am not looking forward to the pain and suffering that Ella will have to go through. With luck, it will be shortlived like the last time which wasn’t bad at all. However, Ella is more aware of things now and that worries me.