
Wednesday, December 9, 2009
Deer Season
Sunday, November 29, 2009
Some things we are thankful for...


His seizures are steady but under control for the most part. He is almost 11 lbs and is still gaining and losing weight so that is our current challenge.
December is full of appointments (GI at Hopkins, Neuro at Hopkins, and several pediatrician appointments for his RSV vaccine and other standard check-ups). His weekly visitors are Physical Therapists, Occupational Therapists, Cranial Sacral Therapist and Hospice. Jetty has a nurse stay with him during the week and another nurse who comes 4 nights a week. That has been a big help.
Every day is different with Jetty and we are thankful for having such a strong and amazing Son.
Tuesday, November 10, 2009
Mommy and Daddy like to sneak pictures of each other sleeping.
Monday, November 2, 2009
Sunday, October 25, 2009
Jetty has had a good weekend. His seizures were mild and about every 20 minutes. He also slept a lot.
We are working with neurologists to find Jetty's base level (somewhere in between a constant seizure state and asleep) with the correct dosage of medications. Currently, if he is not asleep he is having seizures every 10-20 minutes with the occasional seizure that doesn't stop unless given heavy duty drugs that knock him out. Even when we do that, he sometimes wakes up hours later in the same seizure. Those are never fun to deal with but he ends up coming out of it eventually whether its 2 hours or 2 days.
He has been having stomach issues as well... lots of gas and reflux! He has been having trouble keeping his food down. We decided to put him back on a continuous feed with a rate of 35ml's per hour rather than 100ml's per hour every 3 hours which is what he was up to. The slower rate as well as more antiacid meds have seemed to help control his gas and reflux as he hasn't spit up in more than 4 days.
Jetty was supposed to get his PEG tube pulled out of his belly and replaced with a button snap last week at Hopkins. We went to the appointment all ready for the button and the GI Doctors told us they want to wait 2 more months. They also said that they want to remove it endoscopically which involves the O.R.. They haven't set our appointment for the procedure yet.
We are back at Hopkins on Wednesday to meet with the Neurologist who wants to figure out whether we change Jetty's medicine or try the Ketogenic Diet again. We are hoping for a medicine change!
We are working with neurologists to find Jetty's base level (somewhere in between a constant seizure state and asleep) with the correct dosage of medications. Currently, if he is not asleep he is having seizures every 10-20 minutes with the occasional seizure that doesn't stop unless given heavy duty drugs that knock him out. Even when we do that, he sometimes wakes up hours later in the same seizure. Those are never fun to deal with but he ends up coming out of it eventually whether its 2 hours or 2 days.
He has been having stomach issues as well... lots of gas and reflux! He has been having trouble keeping his food down. We decided to put him back on a continuous feed with a rate of 35ml's per hour rather than 100ml's per hour every 3 hours which is what he was up to. The slower rate as well as more antiacid meds have seemed to help control his gas and reflux as he hasn't spit up in more than 4 days.
Jetty was supposed to get his PEG tube pulled out of his belly and replaced with a button snap last week at Hopkins. We went to the appointment all ready for the button and the GI Doctors told us they want to wait 2 more months. They also said that they want to remove it endoscopically which involves the O.R.. They haven't set our appointment for the procedure yet.
We are back at Hopkins on Wednesday to meet with the Neurologist who wants to figure out whether we change Jetty's medicine or try the Ketogenic Diet again. We are hoping for a medicine change!
Sunday Morning
Subscribe to:
Posts (Atom)


















Getting a quick nap in before game time.

We lost. I hate the Ravens





















