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Stories March 14, 2009. Since last we wrote, we have moved away from Florida to Northern Virginia. Allie continues to do well. She is still in occupational therapy and physical therapy two days a week, and she is looking forward to kindergarten this fall. Allie has had appointments with an all-new slate of specialists. Of some concern is the fact that her ASD has not closed. It is also in a very difficult-to-patch location. Her new cardiologist believes he can patch it, but says as long as she is not symptomatic, there is no need to put her through the surgery. Also of concern is her stomach. Recall that when she left the hospital after she was born, Allie had a Nissen fundoplication. However, over the last year, Allie has suffered from severe heartburn, reflux and even vomiting after eating. A barium swallow study recently showed that although her Nissen is still in place, it is no longer functioning. Allie's gastroenterologist hopes to control Allie's symptoms with Prevacid twice a day. That may or may not be a problem, since she tells us that in some cases, the Prevacid has caused behavioral issues (anger, oppositional/defiant behavior, imulse control/acting out, etc), and we have already had to take Allie off of her FloVent because it was causing similar issues in Allie. Allie's pulmonologist put her on FloVent in October of last year as a prophylaxis against respiratory infections. The hypoplasticity of her right lung has not been even remotely as much of an issue as we feared originally, but the Pulmonologist felt it was better to be safe than sorry. In fact, it was his peistence that got us in to the cardiologist. To balance the beavioral effects, however, Allie is caught up on her weight (she is now 51 lbs), probably thanks to the same steroid in the FloVent that caused her behavior problems. She is also tall for her age. Allie's neurological issues seem to present as a mild form of Cerebral Palsy, although she remains undiagnosed. Her new neurologist seems satisfied with her cognitive development, and her lack of seizures (which could be expected with her periventricular nodular heterotopic gray matter), but notes her persistent gait issues due to hypotonia. The cause for her brain's peculiar morphology is still indeterminate as well. For now, the good doctor is content with the white matter dysgenesis theory of the previous neurologist (but Dad is by now pretty sure that perinatal ischemic injury is the real culprit). All this means we will have to continue to watch Allie as she grows for behavior issues; so we may add a behavioral therapist to the fold at some point. Despite that gray cloud on the horizon, Allie is a wonderful little girl, and we continue to be grateful for her every day. October 28, 2006 We went to see Allie's doctor again on Thursday. Ever since her surgery last spring to reposition her g-tube, she has had problems with it. We had spoken with the doctor about the possibility of removing it for good. He said that if she could go two weeks without using the tube for anything, and without losing any weight or being hospitalized for dehydtarion, that we could probably take it out. We did him one better. It's been over a month since Allie has had anything by tube. She has actually gained a little weight and has not been seriously dehydrated. (Getting her to eat is not really a problem; it's getting her to drink.) So on Thursday, armed with our new information, we saw him and he gave his consent to letting us remove her g-tube. Allie is now tube free!!! Of course, she then managed to catch an upper respiratory infection (congestion, sore throat) and now she's almost completely refusing to drink. More to follow.... May 26, 2006. Allie did so well with her eating after her surgery! Unfortunately she and her sister caught a tummy virus that knocked her off of that. With the Scandishake, we were able to make sure she stayed fed and got well, but putting her back on regular tube feeds put her off eating by mouth. Some of our friends on the Cherubs website told us about a two-week feeding encouragement program at the University of Virginia that promised to get her eating more normally. We are working her application to the program, but we are also now trying to get Allie to listen to her own body by limiting her tube feedings. We've been at it for about a week now, and today was the first time we've been able to say that she has eaten normally for her age. Of course we are watching Allie closely and if it seems that she just isn't getting what she needs, we will resume/step-up the tube feedings. Our hope is that she will not need the "Luge" program, but if she does we will be ready to take her. Also, Allie's PT therapist evaluated her and stated that Allie continues to lag about 8 months behind in her gross motor skills -- running, walking, etc. Of course, that's only to be expected, given her SWAN (Syndrome Without A Name). On the other hand, when we asked the occupational therapist to do a similar evaluation, we were told we probably didn't want that, because she is doing so well that an official evaluation might disqualify her, even though she still needs and benefits from the therapy. Growth-wise she is 33" tall and is up to 24 lbs., 8 oz. She is now officially above the 10th pecentile for weight; however, depending on what chart one uses, her height is now also somewhere between the 15th percentile and the 50th percentile. Growth issues appear to be fairly common among her CDH peers, so we need to keep an eye on that. May 16, 2006.
Allie once again tolerated the surgery very well, and by the second day she was standing up in the hospital crib and demanding food and drink -- by mouth! This new interest in eating only lasted for about a week after her surgery, but she is at least eating something by mouth every day. Dad got her to eat two whole hotdogs a couple of weeks ago, and Mom got her to eat a whole grilled cheese sandwich today. We hope that this will eventually become the norm and we can wean her off the formula and get her g-tube out.
In the meantime, Mom also found something called Scandishake, normally recommended for kids with CF. At 600 calories per 11 ounces it really solves the calories-to-volume issue we've always had with Allie. As a result of all this, Allie is finally in the double-digit percentile for weight (though she's above the 95th percentile for height).
Allie is nearly running when she's outside now, and climbing the big playscape in the backyard (with a little help). She still needs to improve her gait and leg strength, but it's more than we hoped for back in 2004.
Her verbal skills are coming along slowly. She understands far more than she can actually say, so we're hopeful that it will come with continued therapy and Allie's own maturation.
Allie's big sister, Emmy, is old enough to go to Pre-K now and so she'll be starting school this fall. We wonder how Allie will cope without her favorite person for three hours each day, and also about what will happen when Emmy starts bringing home the germs. Life is always an adventure with Allie. March 19, 2006. Allie will have surgery on Friday (24 Mar) to reposition her g-tube. She's eating more and more by mouth. The other day she ate more than three whole tablespoons of Spaghetti O's at once. :) However, she still is not eating enough to sustain herself, and requires supplemental feedings. If she follows the course of most kids born with diphragmatic hernias, though, she will continue to get better at eating and will eventually no longer need a her g-tube. Allie had her annual neurologist appointment last month. The best thing he said was that if he had met Allie first and then looked at her MRI, he wouldn't have matched it to her. :) Also, he still thinks that Allie's condition is genetic, just not one that is currently detectable, so she's still a SWAN girl. He doesn't think she has any form of myopathy, and doesn't think that a biopsy would be revealing. In some ways we're relieved (biopsies hurt), but it also means we're still without an explanation. As time goes on, though, I think we're finally beginning to accept that we may never know exactly why Allie is the way she is. But, we are always grateful that Allie is doing as well as she is. Check out the beach picture. :) January 30, 2006.
Allie just had her annual MRI. No change in her neurological condition, which we guess is good (at least it didn't worsen), and she had an x-ray of her hips because of some abnormalities of her gait. The x-ray revealed some neurotrophic changes that probably resulted from her delay in using her hips normally, and which the radiologist remarked were expected in patients with neurological issues. Hopefully, with time and continued therapy, that will improve. Other than that, she's doing extremely well. She is eating more and more by mouth (up to about two tablespoons at a good sitting), and she is trying very hard to communicate verbally. She is occasionally using two-word phrases now and (at least according to the milestones listed on the various websites) she is doing at least 90% of what is expected of a child her age. She is very curious, and despite her gait, moves pretty darn quickly. She gets into everything and keeps us busy. :) Next up: A Visit with Allie's New Neurologist and Investigating Myopathies.
December 5, 2005.
Allie had her cardiologist appointment today. Unfortunately, her echocardiogram showed that her ASD had more than doubled in size instead of closing, as we had all expected; and her right ventricle and right atrium appeared enlarged. Since her heart was compressed antenatally, and the left side had to do most of the work, the right side started out weak. The enlargement is probably from persistent weakness on that side along with harder work since her diaphragm repair and all the exercise she has been getting (sitting, walking, PT, etc). It seems to us now that with all these muscular issues (her eventration, hypotonia, facial and bulbar weakness, and her weak neck, back and abdomen) that some sort of myopathy could be in play. Of course, now we have to convince the doctors that poor little Allie needs to have a painful muscle biopsy to determine if she has a myopathy, as her presentation suggests, in order to treat her more effectively. Her heart issues, even though relatively mild, are distressing to us; but because they are mild, the doctors will resist any unwarranted intervention -- as they probably should. It?s a bit frustrating, though... Anyone out there who has a child with a myopathy, please feel free to post any comments you have. Thanks! November 12, 2005 The last year has been a VERY good year for Allie developmentally. By Easter, Allie was finally sitting on her own. In September, she took her first steps. As of today, she is working very hard on walking and is able to walk pretty long distances (for her). She can traverse the living room fairly easily, and is getting better at keeping her balance on the uneven ground in the back yard. In October, she had her first visit to the Zoo, and went to the playground for the first time. Her ankles are still very weak, and she pronates too much, so walking is still a big effort for her. On the other hand, she scales the furniture like a little monkey, so we have to keep a close eye on her to ensure she doesn't fall off the coffee table or out of one of our chairs. Allie also has begun to talk. Her speech therapist, Barbara has done wonders with her. She is still mostly limited to single syllable words and requests, but she is learning more words and her annunciiation is progressively clearer. One of her favorite things to do is read her word books with Mommy or Daddy. She remembers and can identify many of the pictures in her books by name. Moroever, she is eating more "real" food, and can now tell us with words that she is hungry (being hungry by itself is an important step). All this development has been a miracle to us, given the neurological issues revealed on March's MRI. The other good news is that despite the best resolution genetic tests available, Allie does not seem to have any of the the genetic syndromes we had been afraid of. Her biggest challenge now (and ours) is overcoming her Sensory Integration Disorder, which is fairly common among kids with diaphragm issues. Allie and her big siter Emily will be undergoing surgery later this month to put tubes in their ears, and to perform an adenoidectomy on Emily. Our heartfelt thanks for your continued prayers and good wishes, especially for those of you kind enough to provide your comments on this website. March 2005 Allie recently had a cranial MRI and a neurologist appointment. The neuologist showed us the imagery results. The report cites "moderate diffuse cerebral atrophy" and "periventricular heterotopia." Basically, Allie's cerebrum appears undergrown, and she has cerebral-spinal fluid filling the space where she should have brain tissue. All the loops of her cerebrum appear normal, so she doesn't suffer from pachygyria or microgyria. The heterotopia means she has gray matter intermixed with her white matter, a condition that usually results in focal epilepsy. The neurologist refused to make any prognosis, and recommended we see him again in a year. If her condition is degernerative, it will manifest as a plateau in her development, followed by a loss of acquired skills. Most neurologically degenerative conditions are fatal. Moreover, he couldn't offer an explanation for how her brain got like that when it appeared normal on her CAT scan during her original hospitalization. We suspect some form of ischemia caused by early oxygen deprivation, but the neurologist disagrees. All we can do is cross our fingers and hope... January 16, 2005. Allie has recovered from her illness without ever getting RSV or requiring hospitalization. Allie's grammy says that it seems God really answers prayers about Allie. We hope and believe that He must have something very special for her to do in the future. February 2005. Allie ended up being hospitalized for respiratory distress after all, related to a bronchial infection of some sort. She got to ride a helicopter to the hospital. Luckily, her stay was relatively brief. They treated her aggressively for asthma and she responded well, so she got to come home with a prescription for cromalyn.
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