Ella's Pages

Ella’s appointment with the orthopedist today went well. For one, it was a very efficient visit, Ella was examined and her x-rays taken. Secondly, the news was pretty good. The doctor said that she is doing ok, and that there is nothing to worry about at this time. He encouraged us to continue with the standing Ella does in any possible way, stander, free standing, you name it. If she can tolerate it, do it. The x-ray showed that Ella has slight scoliosis (curvature of the spine), It is very slight and nothing to worry about now, though we will have it checked in a few months. The doctor said she seems to be supporting her spine nicely now so there is no reason to intervene. The other thing he stressed is stretching. Ella’s low muscle tone in her left side causes her left limbs to tend to scrunch up and stretching does a lot to relieve it. We are all waiting to see Ella’s reaction to Netta. We are hoping that this will bring new stimulation to both of them and that they will both learn from each other. Ella responds well to having children around her. She loves playing with her cousins and she enjoys her playgroups. I just hope she won’t feel anxiety over loss of attention. (this is probably inevitable to some extent). My big worry, however, is that Ella, in the long run, will feel like the underdog, the problematic kid, the underachiever. She will have a younger sister that is not disabled, is symmetrical and (from what we can tell) pretty smart. I am hoping we can make Ella understand how unique and wonderful she is. I am off to Moscow today to pick Netta up and bring her home. Being away from Ella is difficult and we miss her terribly when we are away. Hold on Ella, we’ll be right back.

I am getting ready for the two week trip to Russia to adopt Netta. This is a long one — almost 2 weeks during which time I won’t see Ella. I’m going to miss her. She had a playdate this past week with Nate (Betsy’s son) who is about a year older. It was cute and I think interesting for Ella. She was fascinated by Nate’s playing school and singing all the songs he knows from school even though Ella was most interested in stealing away the pupils (TellaTubbies) lined up against the wall so she wasn’t being that cooperative. This caused Nate to call out to her: E-L-L_A! E-L-L-A! But his reprimanding didn’t have much effect as Ella was intent on doing her own thing. For me it was nice to see some interaction. I see that as time goes by, Ella is more interested in the company of other children as a motivating factor.

At the Friday playgroup though most of the previous group has moved on and now Ella is with alot of younger kids. I’m not quite sure that this is the appropriate group but in the meantime she likes circle time, the swing, the equipment and toys. The structure is probably good for her too. I just wish Anna, the Early Intervention leader would learn the traditional playgroup songs!

Ella is inching ahead in several areas. Since we have increased the time we restrict the use of her right hand, there has been a marked improvement in the use of her left. It is still much cruder and less accurate than the right, but, still is better than before. The movements used to be restricted to swatting through use mostly of her shoulder, now more of the movement is done from the elbow and she can direct her movements better. When placed with a collection of her noise making toys and her right hand restrained, she will make continuous noise through use of her left in manipulating the toys. It gives us hope that the use of her left can be even further refined. Maybe she will one day be able to grasp things with it, which will make a huge difference in her functioning. Another area of progress is in her standing. Ella is now more accepting of casual standing. That means just putting her down for a minute to do something. She will stand there, holding on to something for a few minutes before complaining. A huge step forward was done with her ability to go from sitting in a chair to standing. This still requires you to hold her hands but she will do all the work on cue. At the beginning of this exercise she will even be excited about it and will want to stand and then sit. Later the enthusiasm wanes. She has moved from her high chair when eating to a normal chair with a booster thingi. This makes her much more part of things when we sit down to eat. It also seems like her understanding has taken a big step forward. She responds to more things when we describe what is going to happen next, and she makes know what she feels about it. Her disposition remains a source of amazement for me. Ella is almost always in a good mood, up for doing things and accepting cheerfully.

There are times when I wonder if we are doing enough for Ella. What if we missed the one thing that will make that big difference. Yes she is getting physical therapy, and occupational therapy and speech therapy; there is a developmental specialist that comes to see her once a week as well as an expert from the Perkins school for the blind. Ella is starting aqua therapy next week and also attends a group at the Early Intervention office. (once you write all these things down it really looks like an impressive list). A while ago we also took her for acupuncture treatment for a few months. The therapist was the only one whose condition seemed to be improving. Ella stands in her stander when watching a movie, has her right hand tied up for an hour and a half a day, and wears an eye patch three hours a day. She spends 8 hours a day with Beth who activates her in ways of which only some are known to modern science. She is living the life of therapy.

My fear is that one day we will meet someone who will say to us, “surely you’ve tried ‘Soup Therapy’ Right?”, Soup therapy being the one thing we didn’t try. “It is known”, they will continue, “to have excellent results in conditions such as Ella’s…

We had our meeting with Dr. Duffy, Ella’s epileptologist, yesterday. We hadn’t seen him in a year. He seemed pleased with Ella’s progress although I came away with somewhat mixed feelings. As I suspected, very slow development would indicate something is wrong with the remaing half of the brain. That’s something of course, that we don’t want to hear or consider. And if there is something wrong then there is nothing to be done anyway as it is the only part of the brain Ella has, right? Dr. Duffy did point out that if we were to know more about the remaining hemisphere it would give us a sense of what to expect. In any case, whether we want to know or not, he recommended getting a current MRI and a “beam” EEG. At least the MRI will tell us if there is anything up with the cyst that Ella still has in the brain that was not removed by Dr. Black.

Ella’s progress on standing remains to be slow moving (at about the speed of glacial advance these days) but I think in alertness, vocalizing and certainly in eating there is more. Ella is starting to drink from a juice box with a straw! She is eating like a horse so the nurishment must be going someone. Hopefully, it’s going to the brain.

Ella continues to progress with standing. She is just a littlle bit stronger and more willing to stand from time to time without so much intense diversion. Independent standing still seems a way off though. But she is just more “there” and more alert almost all the time. She makes her needs known somehow — although we have to remind her to try to use words and not grunts and whining. She has a whole slew of sounds: g, l, m, n, k, b. She often just babbles and seems to think she is taking part in the conversation. The funny thing is that she finally has a favorite book that she likes for more than just the mechanical turning of the pages. She gets very excited when I read the story “HaKfitzah” (in Hebrew). She follows the story and the pictures and points out the main character: a little boy called “Shelev”. This is big deal because her understanding seems almost age appropriate. It also makes it a lot more fun to read her a story. With most books it is fight to keep her from obcessively turning the pages.

Last weekend we were up in New Hampshire and did some hiking in the White Mtns. Ella was a real trouper. She had her lunch on a big huge rock overlooking a good-size pond. She thoroughly enjoys the outdoors. It certainly encourages her appetite.

Well it is time for Ella’s CT scan and examination by Dr. Black. This time only a month past since the previous one. The reason was that it turned out that the shunt wasn’t functioning the way we were thinking. It was keeping the pressure in Ella’s head higher than the shunt setting said it was. The process went pretty smoothly. Ella had the CT with no anesthetics, and it showed that the situation was ok though, Dr. Black wanted to reduce the pressure further to let Ella’s brain have room for growth. Next CT in three months. At the same opportunity we had her leg braces (AFOs) adjusted. They seem much more comfortable for her now and since we spent the day in the hospital she was standing around in waiting rooms with me playing her favorite music on my little PDA to keep her interested. Ella is becoming noticeably more vocal. She accompanies nearly everything with a constant chatter. There are certain sounds that identify ‘bottle’, ‘swing’, ‘more’. It is pretty encouraging.

Her standing is getting better as well. The key is distracting her. Well distracted she can stand for about 20 minutes straight. The minute the distraction ends (song is over, video comes to an end) she remembers to complain and ‘can’t take this anymore’. We are a long way off for her to stand up on her own. But there is no denying that she is getting better at it (and we have no intention of denying it). The turnaround with Ella’s therapists is quite incredible, and at the moment she is seeing no one that she saw a month ago. Jackie and Amy left, much to our chagrin and Nicole is on medical leave (Nicole, If you are reading this, Get better already, we need you). Our saving grace is Beth. She is amazing with Ella and we are really lucky to have her. She is the one keeping the continuity going and introducing new ideas and routines. The latest is trying to get Ella to use a sippy cup instead of a bottle. A lot of juice had to be cleaned off the floor… but we will get there yet. One example we think of when we feel things are moving very slowly is that a few months ago (about three) it seemed like we will be spoon feeding Ella mush and yogurt for ever. Now, however her meals are handled exclusively by her. We place a plate with her food in front of her and she takes it from there. Hardly any hits the floor any more. So there!

Ella did so much standing yesterday that I’m really encouraged about her progress. Again, her attention needs to be diverted to something else but I think being able to use a toy to get her standing instead of music is progress. When I got home, Beth was having her stand up to her little table placed at about eye-level with her pop-up Disney figure toy on it. She was so involved in turning the knobs to get the figures to pop up that she probably forgot she was standing. Later, I took her over to watch a Barney video while standing and I was eventually just holding her hands. We did that for almost the entire video (about 20 minutes). She is so tall and straight when she stands! Her left leg is significantly weaker than the right but she does put weight on it. Just when I was getting so dissapointed by her progress, I’m suddenly encouraged!

On the plastic surgery front, Dr. Bauer in Chicago evaluated Ella’s 3-D CT scan films and has asked us to aquire the information digitally so they can build a model of her skull. I don’t think we can have too much information on her cranio-facial abnormalities so I am glad he is requesting this. We have another CT scan at Children’s to check on her shunt on July 30th. We will make the request for the digital information at that time.

I’m thankful things are moving along so well for Ella and for us.

Keep up the good work Ella!

Even when you are two years old and you are Ella, there are CT scans and appointments with the neurosurgeon. The shunt “tap” was performed a week ago today and the pressure was determined to be 110. The shunt was set at 80 so that means that while Dr. Black (who was called in the OR with the tap results) doesn’t think that the shunt is malfunctioning, it is clearly not accurately maintaining the pressure of the setting. 110 is a high setting for a toddler, so on Dr. Black’s orders, the nurse turned the setting down again and Ella needs to have another CT scan at the end of July. I’m glad we got all this done now but I’m not too thrilled with the possibility that the shunt is not working completely right. Hopefully we will see some reduction of the ventricle size in a month following the (hopefully) reduced pressure. Ella continues to make slow progress but I feel like I got too excited about her standing progress. Over the weekend we were in NYC. When we were in Central Park with Ella’s AFOs I did some standing exercises with her. She would only agree to stand if we played Gidi Gov songs through Etan’s palm pilot. Without music, she refused to make any effort and just complained and collapsed. I’m dissappointed that Ella doesn’t seem to want to stand. It is alot of work for her and I’m thinking that it will take months for her to stand independently let alone walk. Progress is continuous but very, very slow from day to day.

Ella is two! It is quite amazing that it went by so quickly. On the other hand if I think of all that we have been through with her… It is surprising that it has only been two years. We had a really nice birthday party for Ella. Our friend Diann, who volunteers as a clown in a hospital brought over two of her clowning companions and they put up a show for all of us. At first Ella took one look at the first clown that came in and burst out crying. She calmed down later and seemed to enjoy all of the commotion. This could be seen as an a good sign, Ella’s recognition that clowns are not a normal thing and that something is wrong here. Her assisted standing is getting better. We prop her up in a variety of ways, against our knees, against the big orange ball, against a sofa back. She then manages to hold herself erect almost by herself for several minutes. It is still very far from standing, but it is very encouraging to see her in that posture and imagine what it will be like when she will actually stand. At times she looks around proud of her accomplishment from her towering hight. Ella’s feeding has both improved and become more frustrating. The improvement is due to the fact that she now feeds herself completely. We place her plate before her. It is a divided plate and each section has a different type of food. She requires no intervention from us and will make that food go away.

Here comes the frustrating part. A large part of how she makes the food go away is in the manner of nutritious projectiles. This we understand is ‘age appropriate’, but since Ella is so special, couldn’t she just skip this phase? The sorting algorithm she uses is beyond modern science. One piece of cheese is examined briefly and then flung across the room. An identical (to our ignorant eyes) piece is then inspected and devoured efficiently. The end of each meal is an Ella no longer hungry and a dining room looking like it just got a distribution of Manna from heaven (some chewed though). Hopefully this phase will be over soon. We are trying to work on getting across the concept of ‘No’ . At this point I am not at all sure that concept is clear. (we suspect it is sometimes interpreted as ‘if I do this then you make that cool NO sound and get all red in the face’) On the medical front, yesterday Ella had her periodical CT scan. This is intended to see any signs of pressure in her brain and try and evaluate whether the shunt is doing its work. Quite amazing that in 2003 there is no way to know what the pressure is and it has to be guessed by circumstantial evidence such as comparing old and new CT scans. Well, even though the shunt was adjusted down every time we went (for the past 9 months) the ventricle has remained the same size. This can indicate that either the shunt is not regulating the pressure to the setting it was set at, or that it is, but Ella needs a lower pressure yet. Following my insistence they will today perform a ‘shunt tap’ to actually measure the intra cranium pressure and find out. I am hoping it will be scenario #2. The shunt is working as expected but Ella needs a lower pressure. Otherwise if it is not the case, something would have to be done to fix the shunt’s operation. We will see today. As far a communications goes. Ella is making progress. She cooperates and tries to say the things we insist on her saying before giving them to her (bottle, swing, music). Her sounds don’t always match our version of the language but who are we to decide which is the real language.

Anyway… Happy Birthday Ella! We are very proud of you.