March 2009
Avery gets permanent g-tube ...in hopes to be able to continue to give him his needed nutrition along with ,now being able to address his oral motor skills;as he has very poor gag refluxes and sensory issues...... working on oral motor skills with the N/G tube is not an easy task....The tube placement itself went fine; he blew to IV in a 2-3 hour period......and had what appeared to be allot of discomfort and pain. Unfortunately this couple day hospital visit turned into a lot longer stay as Avery started with seizures;evidently his threshold had been lowered by the anesthesia. As it turns out we think he was having some seizure activity prior to the surgery but it was as obvious. We we moved from our comfortable spot on 9east to the neurology floor of 9north(a whole different world)....This is a NEW beginning in a very long chapter as you will see over the months ahead. After over a week on 9 North ....We came home and ....with seizure meds on board & hopes that his feedings and seizure would somehow subside or lesson. Avery was diagnosed at this point with Infantile Spasms ....Since Avery started with seizures and then medication to help control them;I have sen little to no improvement...I had spoken to Andrew's neurologist,who just so happens to be an epilepsy specialist(but I am not so anxious to start having Avery see doctors at different hospitals ....having ALL his specialist at the same hospital right now is what I'd like for as long as possible...anyway).She highly recommended at this point to get another opinion;with an epilepsy doctor; which is exactly what I did(with her help and influences ...sooner rather than later)...because I have not seen much change since we started treating Avery and his seizures. Avery continues to receive therapy's from PT/OT and his vision therapist.....we work on stretches ,ROM,and stimulate him visual with preferred toys & tummy time has not happened as much since his tube was placed & still new....his feedings have not been so HOT due to the seizure activity and medications...

We continue to “Walk by Faith and Trust that God will lead us..as we Trust in HIM”....even when we don't see the end of this road ...we know HE does!! What a great comfort:)