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Apraxia Angels
LeAnne's Page

UPDATE: (April 2002)
 
LeAnne is now taking gymnastics to build muscle strength. She also now can count 1-10, she also now can say her entire alphabet!! What amazing progress LeAnne!!

LeAnne
History
LeAnne was born in September 1998. Other then being extremely tiny there were no noticeable problems at first. By the time she was 9 mths old I realized that she was pretty far behind according to my baby books, such as still not rolling over or holding her head up while on her stomach, things like that. I asked our pediatrician about it and he said I was just a young mom worried too much about comparing my baby to other babies. But at my insistence he referred her for developmental testing at our local hospital. There they said she was very much behind and she began physical therapy. A couple of months later we moved across state and found a wonderful pediatrician. At this point she began occupational therapy along with the physical. She went through over a year of testing, seeing a geneticist, neurologist, nutritionist, endocrinologist, asthma specialist (she also has asthma), a cranial/facial specialist along with her pediatrician. She had every test it seemed, MRIs, bone scans (x-ray of her wrist), ear tubes, and tons of blood work. Nothing was ever found to explain her inability to stand, walk, crawl, talk, and gain weight though she was diagnosed with failure to thrive. By the time she was almost two and still no sounds or words she began speech, also at this time she finally began walking well. In the spring of 2001 I was sent an email about apraxia. As far as speech went it fit her to a T. With nearly a year of conventional therapy we still had seen no progress. Still didnt explain other things that we just attributed to her being weird. I mentioned apraxia to her speech therapist who said maybe. At this point I became very pro-active. Did tons of internet research, printed all the info and took it to our pediatrician. She then helped me to find a speech therapist who specialized in apraxia for another evaluation. By this point LeAnne was no longer in occupational therapy. This evaluation took place in May of 2001. She was labeled severe apraxia and unapproachable by the therapist. We also began supplementing with ProEFA but sporadically. Also, this new therapist referred us to a OT specializing in Sensory Integration Dysfunction. Turns out she does have DSI which explained many of her odd behaviors. She now is in OT for the DSI, and increased speech to 3xs a week with a wonderful speech therapist that she really enjoys working with and who deals with apraxic children. Not sure if it is the new therapy, the ProEFA, or her finally having a growth spurt (finally hit 20lbs on her 3 year checkup), but she is now progressing well. Trying to say words, constantly using sounds, still using some sign language, eating table foods without choking, and nearly eliminated her banging her head into walls. Not sure exactly how many words she is up to as most of them are still approximations. She also started preschool and over the summer and fall has bloomed into a very outgoing child for the most part, conquered potty training during her awake hours, learned to shake her head yes, and is consistently adding to her list of approximations.

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First day home from the hospital weighing in at 4lbs, 8 oz.

Goals
My goals for 2002 include consistent use of ProEFA to see how much of a difference that will make and for her to begin putting words/approximations together in sentence form. She is also still learning how to move her tongue to where she wants it to go and how to pucker up.

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13 months old

DSI is Sensory Integration Dysfunction ,which causes sensory problems and made her dislike using her hands for anything, (DSI for short, at one point it was called SID but I was told it was changed because of the closeness to SIDS)


Things she enjoys
As far as things she enjoys she LOVES puzzles. Can put together 24 piece puzzles with no problem. She is very good at computer games and using the mouse. She also knows her number 1-9, her colors, her shapes, and most of her alphabet. She cant say them but if I write them down and ask her to point to a specific one she can do it. She likes Bob the Builder, PowerPuff Girls, Thomas the Tank Engine, and Barbie dolls. Some of the things we do for fun that incorporate therapy include BlowPens, playing dress up (for sensory issues), Memory game where we try to say each word, playing at the playground to build muscle strength, sand box play, and water play.

If your child has sensory issues I recommend reading "The Out of Sync Child" which has many good ideas for home therapy. Also, NEVER give up or lose hope. Also, as your childs parent you know your child best....never let others, even professionals, discourage you or tell you that you are wrong. Go with your instinct and do all the research and home help that you can do. By professionals I was told that I was just trying to compare my child to others, that she may never walk, that she just had typical speech delays, and many other things. Through it all I have learned to do my own research and to go with my maternal instincts even though this meant doing things such as going through 5 different speech therapists to find the one that works for us. Though she still has much to learn and overcome it is so refreshing and encouraging to look back to where she started and see how much she has already done. She works very hard and is such a joy to me, her dad, and her older brother.

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