Seth has been through a lot recently! The biggest news healthwise is that he had his g-tube placement this past Thursday. He had been aspirating his Pediasure bottles and medicines, which caused several rounds of pneumonia for him this past winter....so, his gastro doctor decided this was best for him. It went well, but of course as is usual any time a (nearly) two year old has surgery, he's been cranky & struggling through this healing period. Seth prefers to sleep only on his tummy, and with a healing wound in his abdomen, this is difficult. And painful! So, please pray for rest, healing, and happiness for this sweet little guy!
On July 7th, Seth will have his second set of eustachian tubes placed in his ears. Another surgery. More anesthesia. Classically, Seth's seizure disorder(s) has been exacerbated by anesthesia. To say there is worry over being put under twice in a such a short time period is being gentle....it's pretty scary to think about! But we have been assured that it will be fine and we really dont have any other options. He needs the tubes - the left ear doesnt have a tube at all right now, which leads to a ridiculous amount of ear infections for the poor kid. He gets them anyway, but without tubes, his ears are like little time bombs, ticking away. He ended up at urgent care just today, with a nasty infection & ruptured drum in the ear that is missing the tube.
He just cant catch a break it seems.
Seth's seizure disorder has also seemed to change recently. A few months ago, his "infantile spasms" stemming from West Syndrome started to seem longer,more frequent and more dramatic. He has never had great results from any of the meds he has taken for this specific disorder - but they just seemed so much worse than they had been. Upon examination and hearing what had been going on, his neurologist diagnosed him (preliminary) with myoclonic jerks stemming from Lennox-Gastaut Syndrome. This has not been confirmed because Dr. Bernes (Seth's neurologist) wants to wait until he has both surgeries to do another EEG, but it seems quite likely. Lennox-Gastaut is very difficult to treat and does not respond well to medication. You can read more about this syndrome HERE.
It seemed appropriate to share with you all the medicines sweet Seth takes every single day! Here is our current list:
Sabril 2x per day
Klonopin 2x per day
Keppra 2x per day
Depakene 3x per day
Miralax 1x per day
Albuteral 1x per day
Pulmacort 1x per day
This is all of his morning medicine including one antibiotic and pain killer from the surgery
Seth has taken medicines - multiple medicines - since birth. He has ALWAYS hated it! So, one huge blessing of having a g-tube will be the ability to give him his meds straight through the tube! In addition, there are always days when he just flat refuses to eat at certain times (our stubborn boy!)....having the tube will allow us to make sure he has a full belly when he needs to and all of his meds - without the temper tantrum! :)
So, that's it for now! Please keep praying for healing for Seth - we are so thankful for your support & love for our precious little boy. And, dont forget...Wednesday is Seth's 2nd birthday and his 2nd ColdStone Fundraiser! So come on out, eat some yummy ice cream, and say "HAPPY BIRTHDAY, Im here for SETH"!
