Archive for the ‘Ella’s Log’ Category

Summer program

Today is Ella’s last day in the summer school program. It has been an interesting and fun (I hope) experience. I think Ella enjoyed it although I think for the first couple of weeks she was overwhelmed there – being put on a minivan with other kids she doesn’t know, being bombarded with sensory inputs in the classroom for the whole morning. It must have been like walking into a Sesame Street video for her. Eventually I added a notebook to Ella’s backpack and her teachers (Robin & PT –Cory) wrote about how things went. This was VERY helpful. Almost everyday we got pictures of Ella: at tea parties with other kids, sitting in a police (squadron) car, making projects, reading books, etc. Robin reported that she never agreed to pee while at school even though they continued to put her on the toilet throughout the morning. That’s interesting b/c she peed a long streak everyday when she got home. (Potty training continues). Ella got very tired some days – to the point of falling asleep at lunch. I was able to pop about once a week which was great. Funny, though that Ella’s strategy was usually to ignore me. Except for when I brought Netta one morning and then she almost jumped out of her skin. Ella loved the mixer (making smoothies) and going to the wading pool twice a week. What a real world experience for her! So far, “school” has been great.

Posted by michelle on August 13th, 2004 under Ella's Log  •  No Comments

Last day summer program

Today is Ella’s last day at school for the summer program. She will be going back there in September for the school year program. So far her experience there has been, as far as we could tell, wonderful. The team at the school is very communicative and helpful and seem to be doing a great job with Ella, There is a notebook that travels back and forth with her and through it we get reports of her daily achievements: ‘Ella walked to the pool today’, ‘Ella played make believe phone today talking into a toy phone’ ‘Ella didn’t touch her food today but instead tried to steal food from other kids’. She is always very enthusiastic to go, when we talk about her going on the bus to school she gets excited. Then she returns at 1:30 and she is exhausted. Goes to the bathroom and drops to sleep like a rock. Recently she has been in a consistently good mood, talkative and alert. She has also made progress with the gait trainer and now walks around the house in it with a little less protest than before. She still cannot control the direction properly, we hooked up one of Chamlo’s leashes to it and help her steer with that. Last weekend we took the gait trainer with Ella to the gym and had her walk with it from the car to the building and then round and round in the big basketball courts kicking a ball around. I think she is making cognitive progress, tough it is hard to put my finger on exactly what that entails.

Maybe it is the general feeling of her being more connected and alert with what is happening. After the last visit to the orthopedist Ella was prescribed a new wedge to sleep with. This monstrous contraption sits between her legs as she sleeps and keeps them apart. The thing is the angle is much more extreme than the previous one and seems more appropriate to hold someone while giving birth. I can’t believe she can sleep with that thing on. But she does… Hopefully it will make some positive change in the way her legs meet her hips and she won’t need to use it for very long. (historically our luck doesn’t work that way). On the positive side, we have been phasing out the use of her leg braces and now she is without braces half of the day. Her walking is better with the braces but just a bit and the difference is getting smaller. We get much fewer objections when we walk without the braces (nearly none) and even barefoot sometimes. (that was unheard of just a few months ago). Her bathroom progress is inconsistent. Sometimes it goes well and then there are a few days of no success at all. She has transitioned easily to a new bottle with a straw and uses that exclusively. I have concerns about her eating and mouth structure. As it is only very few teeth touch for chewing on the right side of her mouth. On her left… none at all. So if she wants to chew anything she needs to steer it to the one or two teeth that actually touch. I am wondering if there is something to be done about it, we will bring it up at Ella’s next dentist appointment.

Posted by etan on August 13th, 2004 under Ella's Log  •  No Comments

Routine

Ella’s been having a pretty good time at school apparently and eveything is working out with Belle babysiting her in the afternoons. Ella comes home pretty exhausted and goes to sleep soon after. Often Belle has had to wake her up from her nap so I guess that is a good sign that she is tired from an active morning. Developmental changes/gains have been that she has pretty much transitioned to a juice box. We are now using the Rubbermaid refillable boxes which are great because she gets the benefit of a sucking the straw (the speech therapist from the school told us this is worlds better therapeutically then the sippy cup) yet it doesn’t move around and she should be able to hold the plastic box pretty well. SHOULD I write because she is on this kind of strike — even though she probably realizes that she can hold the thing herself she doesn’t want to which makes me think that she is having dependency issues especially since starting school. A regression since she started school has been the potty training. She doesn’t want to cooperate with me and has urinated very few times in the potty (with me) lately. She has been going with Belle so I guess she remembers what to do. We started doing the massage on her cheek. Dr. Bauer has recommended 3 times a day for 10 minutes. I get up early so I can stretch her and massage before she leaves for school at 7:45. The problem is that it is very uncomfortable for her and she cries throughout the whole 10 minutes. It is hard to tell if it is really painful or just bothersome. In any case, the crying makes it difficult to do. One very positive development related to the surgery has been less drooling. This is absolutely wonderful. Both Etan and I are afraid to jinx the effect by talking about it but compared to before the surgery she hardly drools at all. We can actually consider using the same shirt she wears for the following day!

Posted by michelle on July 29th, 2004 under Ella's Log  •  No Comments

Back home

Ella has been doing pretty well for just coming up to 2 weeks post-surgery. Plus, today was her first day of pre-school. I felt very accomplished today, as if we were sending her off to college. And the house was very quiet. It has been the first time that Ella has been in such a structured environment. Etan followed her transport and stayed with her approximately half an hour at the school. A number of kids were there for the first time so it was crowded. He happily reported that the program looks great and that Ella was very happy there. I was a bit worried that she would be shy or afraid to be surrounded by complete strangers but I guess she was happy to get so much attention and to be able to play interesting games. When Ella arrived home from school she was so exhausted. Belle (her new caregiver for the summer) told me that she took her to the bathroom, she peed right away and that when Belle picked her up Ella tried to fall asleep on her shoulder. I’m going tomorrow for a bit to see what they do there and how she does. We had a nice time in Maine and only once did I think that Ella was in some discomfort from her incisions. I gave her a codeine suppository and it seemed to end with that. Good. This surgery was so much easier than the last. Ella is really doing fine.

Posted by michelle on July 12th, 2004 under Ella's Log  •  No Comments

Leaving the hospital

Leaving the hospital went very quickly and uneventfully. We signed the papers and left. Ella was in a good mood and we started her newfound freedom with a bath as she was smelly and crusty. Since she seemed to be up to it, we put her in the stroller and went out for a walk. Ella enjoyed the outside and especially places with many people or music. We ended up in the wonderful Chicago zoo, but only stayed for a short visit, Ella was getting tired. After spending this time with us at her side always (throughout the hospital stay) it is now difficult for Ella to part with us and going to sleep is a bit traumatic. Hopefully this will go away soon. She is still very swollen and this will probably stay with her for the coming month. At least that is how it was after the previous surgery.

The pain seems to be under control and for now the main challenges are getting her to drink and eat and also getting down the antibiotics that is mixed in with some juice. A few times today she reached out to some food, a cracker, or bread and started bringing it to her mouth. Then, before it could reach her mouth she dropped it, as if afraid of what will happen if she chews it. I wonder what her mouth feels like. Very strange probably. The configuration is all wrong. It is numb in parts and there is a section missing… Tomorrow we fly home.

I am apprehensive of the flight and hope it won’t be too difficult for her (and us). She is planned to start school in a week.

Posted by etan on July 3rd, 2004 under Ella's Log  •  No Comments

Arrived

I arrived yesterday and was very relieved to see that Ella is in pretty good shape. I can’t see much aesthetic improvement because by the time I saw Ella yesterday afternoon, her cheek was big again due to the swelling. That’s to be expected. What surprised me is how ‘normal’ Ella is acting. Full of energy and happy, as usual. I took her on a trip around the hospital in the stroller this morning and she loved it. She was excited as soon as we got down to the lobby with arms flailing and rocking, kicking her legs — the usual Ella excited mode. Now the problem is keeping her entertained. Also, whenever I leave the room for a second she starts to whine about being left alone. Right now she’s asleep so I went down the hall to the family center to use the internet. Yesterday evening, Dr. Bauer did come by even though we had word from his clinic secretary that he wouldn’t be able to. He explained to me some of the next steps and the down side to this surgery is that they didn’t get to do as much as we wanted and thought they would. (We are still not exactly sure why). But the upside of that is that it is less traumatic for Ella. They only downsized her ear lobe and there is still a patch of fatty overgrowth on the side of the face before the ear. She started drinking a little bit last night and now is pretty keen on sucking juice from the syringe. Personally, I think we could leave soon – tomorrow morning at the latest. The only reason they’ve decided to have us stay is to allow her to get enough fluids and to finish intravenously the course of antibiotics she’s on.

Now that she is drinking (and had wet diapers and a poop) there is no reason that we shouldn’t be discharged.

Posted by michelle on July 2nd, 2004 under Ella's Log  •  No Comments

Bandages off

Dramatic changes. Ella’s bandages were removed by Dr. Patel this morning exposing the new Ella face. As we noticed during the night, the swelling has started, right on schedule, so it will take a while till we really see the difference. What is visible is that her lower jaw fits the upper much better, she now has a slight under-bite. It seams like her mouth will be closer to horizontal too. There is a new scar along the jaw bone, up to the ear. The ear lobe has been separated and reduced somewhat. Ella now has much less nevus, the dark abnormal skin, we’ll see how much later. Ella was in a good mood and played, watched videos and didn’t seem to suffer from the pain. Unfortunately, we know the worst pain comes later when the nerves get a chance to think it over. Since she started looking a bit bored, we disconnected her from the tubes, put her in a stroller and we walked around the hospital for an hour. The one thing that isn’t happening is any eating or drinking. She rejects it quite assertively, pushing it aside with her left hand. Strange phenomena is that usually we have to coax any verbalization from her with lots of repetition and when she says it, it is partial and half-hearted. Now when I ask her ‘more food or all done?’ I instantly get a perfectly formed ‘all done!’. Apparently she can do much better when she needs to. Once she can eat we will be discharged. Probably tomorrow.

The staff here all comment about her sweet disposition.

Yes. It’s their job to say that. But it’s true you know.

Posted by etan on July 1st, 2004 under Ella's Log  •  No Comments

Back

This morning I returned from my conference in Canada and I’m exhausted. I am happy I was able to attend but of course it was hard to be so far knowing that Ella was undergoing this surgery. Today has been a day of preparing for the trip to Chicago. I’m leaving tomorrow morning ….I’m looking forward to reuniting with the “new” Ella. We certainly miss Ella’s happy disposition around here although I have a suspicion that Netta is happily basking in the extra attention that she is getting from Gaul, me and anyone else who takes care of her. Can’t wait to get going.

Posted by michelle on June 30th, 2004 under Ella's Log  •  No Comments

Still recovering

Ella’s day went well today. The first half of the day went by dozing and waking alternatively, her pain under control with Morphine. Later on, Ella sat up, watched videos, played a bit, (she can’t really move with the all she is connected to) and responded to singing. She even smiled a bit, though it is tough to identify under the swelling. I was surprised by rapid the change. She still will not accept anything to eat or drink. She also had a surprise visit from her grandparents Shelly and Marion. In the afternoon she was only on Tylenol so hopefully her pain is not too bad. The plan for tomorrow is to remove the bandages and drain, maybe we will be able to walk around a bit if we manage to disconnect from all the tubing. Michelle talked to Ella by phone and that produced the first laugh from Ella. Michelle will be here tomorrow. Ella will be delighted. The nurse’s care as last time is amazing, friendly, efficient and attentive. Ella checks to see that I am still here, by her bed. Then she allows herself to doze off.

Posted by etan on June 30th, 2004 under Ella's Log  •  No Comments

After surgery

Ella’s first night after surgery went well. She slept most of it with brief periods of waking up and crying. Sometimes I can calm her down by talking to her, touching her forehead or playing her music. The Morphine also helps and she is on a constant low dose. They wanted to switch her to an oral painkiller but I told them there is no way we will be able to get it down. Even at normal times it is impossible to get Ella to swallow medicine. I was thinking how lucky Ella has the disposition she has. If it were Netta in her place, merely not having any pain would not justify absence of crying. Other reasons would be found. Why is the kid in the next bed getting more morphine? Why am I here? And why the hell should I not cry? Among others. The challenge today is for Ella to start feeling better, to start drinking some juice and maybe soft foods like yogurt and spending time awake, not in too much pain. Judging from last time, the most pain arrives a few days after surgery. I guess that the nerves are too shocked from the ordeal to generate any serious pain, but once they rest up a bit they can take their responsibilities in a professional way.

Adam and Val who were so nice to me and brought dinner last night said Ella looked much more symmetrical. Dr. Patel said it would be a big functional improvement since her jaws are closer to meeting now.

For me it is hard to judge Ella’s symmetry, she always looks alright to me.

Posted by etan on June 30th, 2004 under Ella's Log  •  No Comments