Well… Here we are again, taking Ella for surgery in Chicago … Other families do theme parks, camping or county clubs. We do surgery in Chicago. Others later cannot tell you enough about it ‘we had the greatest time’ . ‘the weather was great’ ,’here look at these pictures’. We are modest. We don’t try to get them envious,. We know it’s not for everyone. Anyway… This time it is only Ella and me. And besides the last part where Ella gets sedated and operated on… It has been great fun. I think both of us enjoyed these few days together alone. No school, work, siblings or anything, Ella has been in the best mood. We flew, drove around, visited Victor, Shoshana and Anabelle, ate out, went to a museum, a doctor’s appointment and slept in a strange room. She took it all in stride, even enthusiasm. She even walked outside on icy sidewalks in temperatures that should be illegal. No complaints and often cheerfully singing. She asked to go to the bathroom and had no accidents. It has really been a pleasure being with her. We are staying in the Ronald McDonald house. This is a wonder of philanthropic achievement. The place is dedicated to providing a place for patients of kids with medical issues being treated at children’s hospital. They have everything you could possibly want. Rooms, kitchens, food, games, laundry, internet and a staff which is at times even too friendly. Today’s challenge was to keep Ella from falling apart while waiting for surgery. She was not to have eaten since last night. We were told to be here at 9 for surgery at 11. (though why they need two hours is beyond me). At the end she only went in at 12:15. Not sure how she did it. I was already nibbling on the oxygen mask they had laying around. In the elapsed time six people came by and asked me the exact same questions. I think it could be useful if they started teaching reading in medical school, now that everyone has gotten such a firm grasp of writing. I am in the waiting-room, anxiously waiting for Ella to emerge.

Well of course, Ella is scheduled for surgery in Chicago next Tuesday, and she has a cold! It’s unbelievable. She must hear us talking about an upcoming surgery and then develops the symptoms. So we’ll see if the surgery actually happens. This one is an ear reduction operation and shouldn’t be too difficult or involved. Otherwise, Ella remains happy and active most of the time. She seems to be getting better all the time with listening comprehension and amazingly seems to know half the letters in the alphabet (according to Beth). The problem is that she is not consistent. Sometimes I’ll ask her where is this letter or that (usually I ask about the letters in her name) and she’ll point right to them. Other times she runs her pointer finger by them and settle on another letter, almost like she wants a different one. I’m happy that she is finally starting to develop some creative play skills. For example, she’ll play with the Little Tikes playground, especially with the swing. Sometimes, I’ll catch her putting one of the dolls on the swing and singing/humming what I think is the nad-ned song. Beth was very impressed the other day when she told Ella mid-afternoon, that she couldn’t do something until evening when Beth left, so Ella immediately beganing singing the “good-bye” song that she sings every night before Beth leaves. Nice try Ella!

Ella is making progress all over the place. Really, her development is taking off in small ways and big ways. She’s very sturdy on her feet most of the time although not walking completely on her own. She holds on to one hand and finally enjoys walking in her walker. Sometimes she’ll “ask” to walk by pointing somewhere and looking like she wants to get up (often by trying to “jump” off the toilet). In her walker, when we take her to the gym at the JCC she just flies and she really seems to enjoy it. She starts her run across the gym with a scream, tilts her head forward and she’s off. The only things to fear are the basketballs flying all around her. Communication skills have also improved. She’s back into saying “A-l-l D-o-n-e” that she confuses sometimes with A-B-A (daddy). She is pointing and nodding when she wants something which makes it harder to control her. From the minute she wakes up she is asking for things in her own way — like that the music be turned on. Then she has this new game with Netta (or against Netta, I should say). She screams “all done” at her and then Netta gets upset and screams back to her, if she doesn’t break out in tears. She says: “Ella don’t scream at me”. Sometimes, Ella yells the word “Aba” at the top of her lungs. Then Netta yells back “Don’t say ABA!” and Ella is even more incentivized to say it. On and on it goes. Ella has also been having some break down trantrums which we are not sure what to do about. She absolutely refuses to cooperate and screams and cries, often for what seems like no clear reason. Today, Kim, her teacher is coming over for a consultation on behavioral techniques. We’ll see what she has to suggest, especially for her antagonizing Netta. It is great that she is fearless and has her own ideas, but it is also hard to discipline her and encourage her development at the same time.

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.