Wednesday, May 4, 2011

Home from KC

We are back in Wichita. 
Eli had feeding therapy.  He was a mess.  I discussed with her his gagging issues and she wasn't quite understanding.  Next thing I knew Eli had decided to demonstrate exactly what he does. She was like holy cow, and it made her nervous as she was grabbing him out of the high chair.  She said that it is definitely very concerning.
Then we moved onto seating clinic.  One of the vendors considered changing Eli's wheelchair that has been ordered but I wasn't happy with the changes he wanted to make.  So the chair stays the same!  It has been ordered and will be here in about 2 weeks!  We also met with a doctor in charge of the rehab dept.  He was very informative and it gives us a good idea of what next in that dept.
Then we headed to dermatology.  She thinks she knows what the issue with the weird rash is and wants us to come in as soon as it comes back.  It only shows up when he's sick so luckily it isn't there now!  :)
He then headed to the audiologist.  Hearing aids are all working well.  They did a tympanogram and both eardrums were completely flat.  Most likely because of fluid.  He will be checked by his pediatrician on Friday.
Tuesday evening was Eli spending more time choking and gagging and struggling to keep his sats up.

Eli had his ECHO 1st thing this morning.  He was choking and gagging so much in the waiting room that people were getting concerned.
Then we moved on to Neurology.  This was our 1st neuro appt at CMH.  We were very impressed.  He met with me for about 1 1/2 hrs.  He agrees with the Mito.  He says that he believes that Eli is functionally deaf.  He believes that the mitochondria have caused road blocks in the neural pathways so they aren't allowing sound to go thru and be properly processed in the brain.  He also agrees with the hypotonia.  At this point he says it's hard to tell exactly what Eli is capable off.  He wants us to continue all therapies and see what Eli can gain.  He did say the longer it takes to gain it the less likely he will ever be to gain it.  So really it's a waiting game. Which no parent wants to do.  He is anxiously awaiting all of the paperwork from Atlanta.  He also had his social worker get the referral process started for Eli to get major therapy, and also to get the family going with the Deaf school in KC.
Then we moved onto Pulmonology.  We discusssed the choking alot.  She believes that they hypotonia, weak swallow, oral aversion, and tracheal laryengal malaysia are all working against Eli to make it so hard for him to swallow.  Everyone agrees that the problem is with his own secretions.  First she is trying him on some meds to help lower the amount of secretions.  We also discussed his sats still dropping with CPAP, so we will most likely be adding O2. We also discussed his issues with being in his car seat.  Then in true Eli form on the drive him he dropped his sats to 71!!!
So none the less we are home now.  The older 4 are super excited to see us.
Emily has finished all of her state assessments and did great on them!  She also scored 105% on a spelling test! 
Jace also got 105% on a spelling test, the 1st test where he has gotten everything including the challenge words!
Benjamin had his school program today and then came home from school and promptly fell asleep. My dad checked his temp and it was 102.  He is super tired this evening with a bit of a temp and super sleepy.  He says his legs hurt.  Hoping he feels better in the morning.
Ariana is the princess as always.  She has been busy hanging out at home and playing.  Talking up a storm! 
I am ok.  Exhausted.  I seem to have some major allergy issues going on which has caused a cough.  No fun.  Hopefully my allergy meds will kick in fast!

More updates soon!

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