• About

    Wife to Bryce and mother of three children, LJ, Noah, and Sofia. Living in a very "special" world of special needs. LJ has cerebral palsy, myoclonic seizures, developmental delays, and cortical visual impairment. This is our yellow brick road.
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Quick updates

There’s been a lot going on so I’ll just give you the run down…

  • LJ’s first IEP (Individualized Education Plan) meeting is tomorrow.  We had our first meeting and evaluation a few months ago after looking at two different schools (our zoned school doesn’t have a Pre K).  I really like his teacher and there were so many professionals there (think therapists) that I really don’t remember many of them.  A little nervous about tomorrow, because we’re really not prepared.  We just got a rough draft of the IEP moments ago.
  • They (the district?) decided we could continue services through Infant Toddler for the remainder of the summer.  They will be the ones that create the goals, though, since they’re paying for it.  Also, how often we receive services will be up to them.  We should find out this tomorrow, but either way I feel pretty fortunate because we’re one of the few families they’re doing that for.
  • LJ’s having a PH Study on Saturday (24 hour reflux test). Long story short: we were referred by the nutritionist at Children’s Hospital to SURGERY clinic for consult on a G-tube (feeding tube) and fundoplication (fundo- basically to stop reflex). He then asked why we hadn’t been referred to a GI doc firt.  That’s what we were wondering so he ordered an upper GI (results were normal) the PH Study so we’d have something when we have our first GI appt in a few weeks.
  • We have our first dermatology appointment for LJ’s “rash” next Wednesday.  I doubt it’s that, but after I showed our Rehabilitation Doctor the pics, she referred us.  Basically, his hands or feet, or even ear, turn really red, for no apparent reason, and gets really hot for about 5 minutes.  It could just be one hand/foot, or both, but so far no one seems to know what it is.
  • We will be switching LJ’s formula from Pediasure to Peptamen Junior 1.5, which is higher in calories.  We’re still considering the g-tube, however.
  • Insurance finally approved Speech at the Rehab Institute but now they want us to come an extra day!  That would be 3 days a weeks we’d have to trek downtown. 
  • Noah took his first birthday was this month.  I’ll be posting about that real soon with lots of pictures.  It was adorable.
  • He also took his first steps last Tuesday!!! 

One Response

  1. I so highly recommend just going ahead and getting the g-button. My child never had an NG but I deal with them a lot at work and the button is SO much easier! I have yet to find a parent on the “parent2parent” boards who regretted the decision either. My only regret with ours is that we did not do it sooner. We are still having problems but the button is making it much easier to deal with them. Anna’s delayed gastric emptying still makes it hard to get enough calories in her. I wish you well on this journey!

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