Vision Therapy & Rehab

week 2 of crazy appointment schedule!
Wednesday we had a vision exam follow up appointment and met with the vision therapist.  Admittedly been terrible about having her wear her new eye glasses daily (not an easy feat with a 5 year old to keep them on her!).  They adjusted her fit (3rd times a charm?) and tried on several more pairs of glasses but ultimately kept the 2 we purchased with some adjustments & a plastic piece to fit behind her ear.  Vision therapist did some assessment and was able to get decent testing (was worried about her comprehension at this age still) and this is something we will consider to start vision therapy in the fall.  There is quite a discrepancy on doctor's opinions for vision therapy and little research that shows medical benefit but I have spoken with many contacts who believe it helps their children immensely.  We are trying to address her visual processing and delays with writing, coloring etc. 
Thursday she had a rehabilitation dr appointment for botox injections in her right leg again.  We decided to try this at Children's MN this time instead of Gillette's and while our experience and communication with this Dr was MUCH better I was extremely disappointed when he told me right before we left that he was leaving Children's :(...back at square one.  The challenge has always been after the injections and the lack of follow up to know if this is beneficial and the correct dosage, etc. - need to decide if we will now stay at Children's with their NP or go back to Gillette's rehabilitation dr.  The appointment itself went fine - they do this in the short stay unit so that they can give her nitrous (which is actually semi-entertaining) and the injections are painless.  Morgan HATES fruit and anything fruit flavored so also a bit entertaining to having the nurse shove a bowl of fruit flavor smuckers lip stuff in her face for her to chose which flavor she wants on the nitrous mask- wish they would put this in her chart!  I am not sure if I have mentioned this in a prior post but her OT once mentioned her aversion to fruit (which happened suddenly after a shunt revision) could very likely be related to this fruit flavor on the nitrous mask...interesting! 

Neuropsychologist Evaluation

This week Morgan's unusual behavior continues- headaches and two mornings of vomiting but then feels better.  Not sure what is going on but we have several appointments scheduled this month and decided to wait to get into her primary Neurosurgeon (he was booked and on vacation) until Jul 2nd. Will take her in sooner if it becomes more emergent.
Today was long awaited pediatric neuropsychologist evaluation.  This is something that was suggested to us a while back but waited until she was old enough to be evaluated.  The appointment was a few hours long - I wasn't able to sit in the room while they were evaluating but a series of tests and questions for Morgan while I filled out a very long questionnaire (in addition to the evaluations and information already sent in by parents, teachers and doctors).  We are hoping this evaluation will shed some light into her abilities and how best to teach and work with her behavior. 

Dance Recital & ER visit

Last night Morgan was complaining of headaches and grabbing her head and we chalked it up to a long day of playing after OT & PT. Then again this morning she woke up with a headache and wouldn't get off the couch for most of the morning.  I asked her if she wanted to go to her dance recital or skip it (an adaptive dance team she has been doing since Sept 2017) and she was so excited to participate she jumped off the couch to change into her adorable yellow tutu custom.
In the car on the way to the recital she fell asleep and I had to carry her in to meet her dance team backstage (unusual).  She woke up a bit and I forewarned the instructor of her condition, gave her my cell no in case of emergency then joined the other parents and my husband and son in the stands to watch.  It seemed like she danced in her dance recital as well as she typically would and we eagerly awaited her finish at the finale a few songs later.
I could tell immediately something was off when Katy, her dance helper, carried her out on stage for the finale sleeping in her arms. She was slumped over her body and would barely lift her head to acknowledge the thousands of people staring at her on stage.  I scurried down to pick her up after the finale and her teacher and helper explained to me that they could barely keep her awake backstage the last couple of hours.  I lifted her limp/lifeless body onto mine and walked out to the front to meet family & friends.  We could not wake her during this time and after several minutes decided best to take her in.
We checked her in to ER at Children's in St Paul and during this time she was still mostly unconscious.  About 30 mins later after she was settled into the hospital room (nurse took vitals, etc and scheduled scans) she perked up like nothing happened.  We proceeded with the MRI and Xrays, took blood work and everything looked normal.  Nurse and ER doctor agreed her behavior was unusual but after discussing with neurosurgery they agreed to discharge her as long as we set follow up appointment with neurosurgery.  Hooray for no overnight hospital stay but UGH for her odd behavior lately!