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Julie's Website
Update 2005

New! PT 2011
August 2008 Bethlem Myopathy/Ullrich CMD conference notes
October 2005 Bethlem Myopathy/Ullrich MD conference notes
Update 2006
Update 2005
Update 2004
Julie's Hypotonia Story
The Medical Puzzle
The Muscle Biopsy
The Diagnosis
Physical Therapy--updated in 2008!
Seating at school
Julie's Wheels
The Sleep Studies
Julie's flexible Daddy
Bethlem Myopathy--DNA and Muscles
Julie's Bethlem Myopathy Book

First grade--what a year!

What a year first grade has been.  Overall, it was much better than I expected and perhaps even hoped.  At the end of kindergarten, I was told that Julie was not eligible for an IEP at school, but rather her needs would be met with a "504 plan."  This guarrantees her the same "access" to her education as kids without a disability.  A trite example is that a child in a wheelchair needs a ramp to get into the building and the ability to get around the building and classroom in his wheelchair.  For Julie, it means giving her supportive seating, a place to rest, some modifications like allowing her to be one of the first three kids in line so the teacher can help her and keep an eye on her, and OT services to help with handwriting.  Overall, Julie did really well.  She did have some fatigue issues day to day, but her teacher understood Julie well enough to help her cope with her fatigue and let her rest in her bean bag chair as needed (and sometimes suggest that Julie take a rest even when Julie's willing to keep going despite fatigue!).  The OT was super and really helped Julie come a long way with her handwriting.  She still has a long way to go, but she's doing better than I thought she would with it.  Best of all, Julie learned a lot this year.  Her reading, spelling, and math came along very well and she ate up science and social studies.  She enjoys learning and that is the most any parent can hope for!
Her seating accommodations in school were very helpful with Julie's fatigue and this year's new symptom, back pain.  The complaints of back pain started within a few weeks of school.  We had xrays done of her spine and all was well there, so her backpain is most likely from the low tone in her trunk and the increased sitting demands in school.  The PT and OT at school worked hard all fall to get Julie's desk chair working for her.  Even before school started, they had Julie come in and made certain that her desk was the right height (the custodian actually had to cut down the legs!).  Over the winter, we decided that Julie needed a highbacked chair that would support her back and head when she's tired.  The PT came up with this contraption and added an old wheelchair headrest to support Julie's head:

Julie in her school chair at her end of year party.

The PT and OT were initally reluctant to put Julie in something so "different" looking...everyone at school gets pretty hyper about singling any child out.  However, what I have learned from Julie is that she readily accepts accommodations and equipment that she finds helpful.  She really likes her chair and knows that it helps, so it doesn't even cross her mind that it's "different."  She knows that it's what she needs and, for now, that's good enough.  I realize that this may change as she gets older, but for now it's important to know.  The other helpful seating for Julie in school was her Back Jack floor chair.  It's a commercially available piece that is typically advertised for sitting and watching tv.  Julie used it at circle time, in the library, in music and at assemblies and it was very helpful.  Sitting unsupported on the floor is very hard for Julie to maintain and she tends to W sit after a short time which is not good for her at all!  She can't W sit in the Back Jack and it's high enough to support her head and low enough for other kids to see past her.  Beyond that, she had a Tripp Trapp chair in the cafeteria and at art where they normally have stools.
In other areas, Julie continues to improve slowly.  She did not need PT for "educational" reasons this year (although if you factor in PE, that's debatable) so she only got PT consult services at school.  We are now getting her private PT through our insurance.  We lucked out in finding a very nice PT near enough to our home who really seems to know how to handle Julie and to help her without pushing her so hard that she falls apart.  Last fall, Julie made some very nice progress with her balance and this winter/spring, her scores for strength on the PT testing improved.  Day to day, my sense is that Julie can do more before she gets tired.  She has also conquered some of her lagging motor skills this year, most notably hopping and pumping on the swing!  She can now hop on each foot and at PT in June, she was able to hop four times on her left foot before needing to change to the right!  A new record!  Also, on a warm afternoon early this spring, Julie was on our backyard swing and suddenly realized that she had figured out how to pump!  She was thrilled with herself, needless to say.
Another possible development for Julie this year is that she had this odd episode of double vision in May.  She told me that when she looks at something she sees a "faded one next to it."  A pretty apt description for a six year old!  I took her to the ped and then an optho and by the time we saw the optho, her vision was ok.  It's pretty much a mystery.  She has complained of "blurries" twice since, but that's it.  It is possible that she has some looseness in her eye muscles and rubbing her eyes from her allergies temporarily stretched the muscle to the point of double vision...we'll be following this one closely, needless to say!
For the summer, Julie will be going to a new day camp from 8:30am to 3pm.  It's on a pretty large private school campus and the director has agreed to let me provide a stroller for Julie to get around campus so she'll have more energy to play.  It's a very mellow Quaker camp with lots of messages of peace and inclusiveness, so I'm hopeful that it will be a good experience for Julie.