Team Rachel » Fitness http://www.teamrachel.com - Raising money to cure Juvenile Batten Disease Thu, 02 Feb 2012 14:47:50 +0000 en hourly 1 http://wordpress.org/?v=3.3.1 Rainy Tuesday http://www.teamrachel.com/2009/06/09/rainy-tuesday/ http://www.teamrachel.com/2009/06/09/rainy-tuesday/#comments Tue, 09 Jun 2009 15:57:51 +0000 Kat http://www.mrskatvon.com/?p=1087 I figure I will make this one a public entry.  For those who don’t know, we have (within the last month or two) found out that Rachel has a very significant vision problem that is actively degenerating her retina and her optic nerve is very affected.  We have done lots of blood tests to find out the source but ultimately she needs to have an ERG test completed for a definitive answer.  The ERG was scheduled for a few weeks ago but it was too much for her and we could barely even “drop her” (with the different kinds of eye drops required) so we are awaiting a miracle (LOL) in the schedule of Dr Ann Fulton at Children’s Hospital who can do an ERG under general anesthesia.   We have upgraded her IEP for next year and as a part of that, Rachel is (RIGHT NOW!!!) undergoing a functional vision assessment at school by a Teacher of the Visually Impaired.   The vision appears to be a symptom of something much bigger and we are working with a geneticist who is looking for specific stuff (including some chromosome deletions) that might be responsible for a great deal of things.  All of this takes time.

Julie and Rachel will be out of school in about 2 weeks and my Juliebean is GRADUATING PRESCHOOL next week in preparation for Kindergarten!  The girls both have their school concerts on Thursday so expect to see some pictures up here at the end of the week!  Rachel is now 9 and Juliebean turned 5 in March.

The boys are doing well and are the best of friends.  London is into playing Indiana Jones Legos and in the sandbox with Julie and Boston is a professional laptop destroyer and amateur escape artist.  They are healthy and obnoxious and eating me into the poor house.  Just as it should be. :)

I have lots of doctor appointments lined up for Rachel and hopefully this summer will bring us some answers so we can know how to best apply our efforts.  The girls won’t be doing summer school (at my request) so I will be trying to think of some fun summer ideas.  We did join the zoo last week so I will certainly want to get my money’s worth (LOL).

Most importantly I look forward to watch them just be kids.

John had nose and throat surgery on Thursday so I’ve been playing nursemaid with the help of the kids.  He is on the mend now but I am sure is drooling at the thought of steak right now even though he is nowhere near ready for that yet.  I’m sure it will be another week before he is better.  The nose is healing faster than the throat (he had his uvula out and his nose fixed).  No more snoring!!

Drop me a comment if you’re out there… :)

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