Took longer than I thought, but it is over.

Five hours after leaving her, Dr. Patel came out to report. It went well he said. No nerves were cut (my big concern). The lower jaw was shortened and brought in line with the upper jaw (two teeth were lost in the process), bulk was removed from the soft tissue and some of her nevus removed. Ella was taken to post surgery room not intensive care unit and she looks much better than after the previous operation. She was awake and looking at me, but now is asleep after getting painkillers.

It’s awful seeing her in pain, not getting what is going on. I can already see a difference in the way her jaws meet. The rest is under bandages. Poor sweet Ella.

Ella woke up in a great mood this morning. She thinks this ‘vacation with dad’ is cool. Even though we woke up at five thirty and she was not allowed to eat anything before surgery she was fine. At the pre op she was measure, weighed, prodded and questioned. It is amazing that after three surgeries, dozens of doctor visits, multiple hospitalizations and medical records the size of a Boeing 737 repair manual, they still ask if Ella was born after a full term pregnancy and whether she has allergies to medication. My theory is that medical records are write only and that it might actually be illegal to read them or at least forbidden by the union. We went over the list I had prepared of what they were going to in surgery. Dr. Bauer said he would not reduce the size of Ella’s ear this time since it would be risky with the reduction of bulk around the ear. This wasn’t consistent with what we understood or what Dr. Bauer had said after the previous surgery, (in fact during the first surgery) . But.. He is doing the surgery. You cannot argue with ‘risky’ but I wish they would give us a consistent plan so our expectations aren’t changed from time to time. I am in the surgical waiting room now waiting for Ella to come out. A familiar, hated situation.

Today, strangely enough was a wonderful day for Ella and me. We were heading to Chicago for Ella’s reconstructive plastic surgery again. Hoping that this time it will actually happen. That in itself is not an occasion for joy. However… We had a great day. Ella was in a good mood, didn’t mind the traveling, the plane delays and the two taxi rides. She just flowed with it and seemed like she had a good time. Maybe like me she was enjoying the rare occasion of the two of us being together alone. We did walking exercises in the terminal and sat in the plane for an hour and a half until it took off and yet, she was fine. By the time we reached Chicago and were riding a taxi into town, Ella had falled completely and totally asleep. I guess this drained her. I was able to open the stroller, move her into it, cross the street, carry the stroller up the stairs get the key, carry her to bed with absolutely no reaction. Tomorrow we start the day very early, we need to show up at the hospital at 6:00 AM and start the process of admitting her into the pre-op. I am worried about tomorrow and about the surgery.

Still… was a great day.

Today Ella is three! That in itself is quite amazing. It has gone by so quickly yet… So much as happened since she arrived! It is a significant milestone not only in regards to her age, many changes are approaching and we are facing the coming days with trepidations. At her birthday all aid from Early Intervention stops. All the therapists Ella (and us) have gotten to know and like, who worked with her since she was just a few days old, are coming no more. Ella will start receiving all her therapy as part of the city school system when she starts going there next month. Another big change is the fact that Beth, Ella’s beloved nanny is going to be leaving in a few days. She is practically part of the family and she played a huge part in Ella’s routine and care. We might just have to have her kidnapped and brought back to us (we are looking into the legal aspects). And another huge one. Next week Ella and I will be going to Chicago to attempt her reconstructive plastic surgery again. The previous date was canceled due to a cold and we are hoping to be able to go through with it this time (even though there is a massive amount of worrying going on simultaneously). Once Ella is feeling better, a few weeks after surgery she will start attending school every day. A bus will pick her up in the morning and return her at 1:30. We are hoping this will bring productive stimulation for her along with a lot of progress. The school seems very nice and the staff energetic and attentive. But what a change for Ella! These past few weeks Ella has been making consistent progress in several areas. Her walking is getting stronger and more willful. She agrees to walk without her braces and we have taken to removing them in the afternoon and doing walking drills without them. She seems wanting to even go up stairs and makes the motions as we help her up. Her walking is still very heavily assisted by us and requires supporting her with both hands while bending forward; it is an activity that completely demolishes your back. We dream of the day we can support her by just holding her hand. Ella’s verbal skills are slowly (yes, very slowly) moving forward, she uses sounds ever slightly more consistently, asking for things and letting us know that she is ‘all done’. Ella’s toilet training is going well (generally speaking). If we get her to the toilet on a regular schedule we can get along with just one diaper a day. The next step of her letting us know when the right time arrives is still a ways off. She is as happy as ever and seems a bit more aware of what is going on and responding to it. When I go and look at her asleep and she is laying there with her eyes closed and her asymmetry less pronounced I can’t help thinking once in a while why couldn’t we be worrying about Ella’s schedule, school choice or rash near her armpit, you know, normal stuff, instead of worrying whether she will ever walk on her own, be able to communicate or who will look after her when she is grown up and will she always be pointed at when she enters a room.

‘Why’ is the most difficult question at these times. There is no why. There can be no answer. There is only Ella.

Happy Birthday Ella! I am so curious to see you in a year.

Life goes on and we have fallen back into routine since returning from Chicago except for this week Ella has no therapies, no play group because everything was cancelled in anticipation of the surgery. Ella is pretty much over that disastrous cold which thankfully never developed into anything more than just a bad cold/cough. Ella’s walking is getting stronger and sometimes when she’s going somewhere she wants to go, she can really push ahead with force (of course she has to be helped with two hands which is pretty hard on our backs). Ella seems to be making some progress with verbalizing some sounds and words although it is very inconsistent. One day she’ll say the perfect “Aba” or “all done” at the perfectly appropriate time and then she won’t repeat that for awhile. The surgery is still scheduled for June 29th and we arranged our plane tickets yesterday. We are keeping our fingers crossed that this time it will happen!

Chicago, IL. Unfortunately, very unfortunately, here Ella and I are in Chicago and the surgery was cancelled this morning. Ella has a cold and a cough and the anesthesiologist and Dr. Patel together convinced us it would be advisable not to go ahead under those circumstances. So that was very disappointing. Ella started developing a cold on Sunday but it was slight. By yesterday she was coughing and sneezing but didn’t have a consistently runny nose. I was hoping that it would be gone by today but actually the cough got worse. It’s a very wet, loose cough that the anesthetstisiologist said he could hear raspiness in her lungs. I relied on Dr. Patel to put the final spin on it – whether he thought we should go ahead. After a consultation between the two in the hallway, he was convinced against it. So now we have the big mess of plane tickets and re-doing all our arrangements which makes me think that I’m not sure this whole shlep to Chicago is worth it. Too late of course, as we’re in the middle right now between surgeries but I see how incredibly disruptive this is. I’d feel differently if Ella’s development was not as delayed as it is — it is unclear to me how aggressive we need to be.

So now the date has been rescheduled tentatively for June 29th. That is right in the middle of my conference in Canada. What a mess. No other dates work before we change insurance companies at the end of the month. I’m sure we could work it out for later with the new insurance I just don’t want to have to go through that whole negotiation nightmare again. So, I see ahead countless hours on the telephone, rescheduling therapies and coverage for Netta and Gaul while we are gone. Ella and I are flying back to Boston tomorrow morning. Ella was cranky yesterday and it was hard to deal with her after a while on the plane. She got bored — how many time can you flip over a book? She also wasn’t feeling so hot probably.

When I got to Val’s Ella was very cranky, unconsolable and wouldn’t let me leave her sight for a minute. Today we went to the beach and she fell asleep on the way back to Val’s in the stroller. At least she enjoyed herself this afternoon.

Today we celebrated Ella & Netta’s birthdays – both of them early because of Ella’s upcoming surgery — with a big party. We had a nice setup on our side yard and there were about 10 kids. Although I’ve been at times disappointed with Ella’s progress lately and with her level of alertness, today she seemed to be having a great time with all the kids around and with the party atmosphere. She babbled alot, always wanting to be part of the conversation and made eye contact with everyone that looked her way. On Monday Ella and I are flying to Chicago for her surgery – part two of the operation she had in February which is scheduled for Tuesday. Although I was anticipating another round of problems with the insurance at the last moment, they actually called me last Friday and told me that everything was set. I got a call from Dr. Bauer’s office in Chicago and also from our insurance person (Tufts) here. When I answered the phone I was expecting the worst but was very relieved to understand everything was arranged and the surgery is on. On the one hand, of course, I’m not looking forward to dealing with the pain and discomfort and difficulties that are part of this surgery (judging from the last). On the other hand, I want to get it over with and I’m hoping Ella’s appearance will be greatly improved by it.

Another significant milestone is that we had Ella’s IEP (Individual Education Plan)meeting last Thursday. This is the big meeting with all Ella’s current therapists and future therapists to discuss her development, needs and our goals for her education for the next year. She’ll be starting the public pre-school program on July 12th (summer “camp”). This is a big step for her. She’ll be going by bus every morning and coming back after lunch. The meeting went well. The staff seemed very dedicated, very professional and serious about helping Ella as much as they can. We are excited for her to start but first we’ve got to get thru this surgery….

Ella went to the dentist for the first time. I discovered that MassHealth pays for dentist appointments so we went to the only dentist in Newton that accepts MassHealth. I was pleased to see that he deals with many disabled patients (as I observed in the waiting room) so treating Ella was no surprise I guess. Her teeth are pretty abnormal being all large (like adult teeth) on the bigger side. She cried and struggled the whole time she was lying on me in the dentist chair. Dr. Sheff said she was alot better than many other 3 year olds he’s seen. He found crevases in her back teeth that collect alot of food (not surprising) so it may be a good idea to get those teeth sealed eventually. Other than that, we need to keep brushing well and ‘watch her diet’. No problem with that, after all she never eats sweets and regularly only eats 4 foods at all meals: chicken nuggets, bread, cheese & pears! B-O-R-I-N-G but maybe good for her teeth. No cavities yet.

Ella continues to make progress with potty training. She’s holding it in and although doesn’t really ask to go, she’ll sometimes make her way over to the toilet when we are walking her. A few days ago she had an almost completely dry diaper all day for two days in a row. Yesterday Etan told me that Netta made it over to the toilet for a pee (holding her diaper & saying “pee,pee”). This was the first time she’s gone on the toilet since we’ve brought her home. Ella looked on and once Netta had finished, Ella wanted to pee as well and being the big sister that she is, she promptly showed Netta how it is done professionally.

May 1st was Ella’s two year anniversary, or rebirthday, as many families call the yearly hemispherectomy date. It really is in a sense the day that Ella was born because until the operation she really wasn’t there at all. Even so, that doesn’t change the overall feelings we have of sometimes being very positive about Ella’s progress and sometimes, being frustrated with it. I really find myself oscillating between being very worried about Ella’s future and just letting things run their course and being so thankful that something could be done for her condition. Right now I think Ella’s development is going well. I think she looks pretty good. The swelling from the plastic surgery has gone down a lot (but not completely). Her eyes are really open now which is such a pleasure. She’s also in such a good mood most of the time which makes it hard to think of her going through another period of pain and discomfort following her next surgery. Progress is being made almost on a daily basis (ALMOST). The latest accomplishments are on the potty – Ella almost always goes to the bathroom on the potty during the day – also she is starting to use a fork. She has trouble getting the food on the fork but she’ll eat it off the fork if we put it on there. She seems to like eating with utensils (the fork more than the spoon). We can also sing together. When we sing and leave off words she’ll try to fill them in. Well you can’t make the words out yet but she tries. So these are kind of exciting developments. Walking is getting better but I think it will be a long time until we’ll see completely independent walking.

We now have graduated from the gait trainer to a real walker. Ella’s had the walker (on loan from EI) for about a week. She does well with it although she can’t manage on her own with it. Her balance is not good enough and she would just topple over. Also, she doesn’t hold on with her left hand so we end up bending over her and keeping her left hand on the handle. She also leans into the left and at times ends up kind of on the outside of the walker. This makes it still a cumbersome ordeal and usually it’s easier to just bend over her, not worry about equipment and lead her with two hands. Either way, with or without the walker it’s a killer on the back. Still, when I think that 6 months ago she just learned to put one foot in front of the other, it is impressive and we are thrilled that she is as steady as she is.

We were at the orthopedist this past wednesday. There was good news: her scoliosis has gotten better. The curvature in her spine went from 15 degrees to 13 (I think 7-8 is considered in the normal range). The bad news was that the x-ray of her hip joints showed a worsening situation. Apparently her hip joints are not lining up right so she’ll have to sleep with a wedge between her legs to push them in. We ordered the wedge which should arrive to NOPCO in about 2 weeks. We also meet with physical therapists at the Children’s hospital equipment clinic. They helped us order a home walker for Ella which will be hers (as opposed to a loaned one). I really waivered there between a model with hip guides and one without. The one that had that option was a bit more clunky and it seems that we should try to keep the heavy machinery down to a minimum. The other reason I decided against that walker was that I’m not sure she’ll need the hip supports in 3-4 months which is probably how long it will take to get the thing approved by our insurance(s). Judging from the struggle to get the gait trainer, she’ll be riding a bike before the walker gets approved. We were able to get a gait trainer on loan from a friend long before we got the insurance approval and in the end I just told them to forget it. Hopefully, although I can’t imagine why, this will go faster.