RNS Placement - Days 11/12

 Days 11/12 - needed this reminder today.

Now that Jenelle’s pain is managed she is very happy.

Thank you for the continued thoughts and prayers. We see the doctors on Wednesday.

#lennoxgastautsyndrome #lgs #neuropace #rnssystem #rns #epilepsy

RNS Placement - Day 10

 It’s all my fault.

Day 10 - I spoke to Jenelle’s neurosurgeon and apparently she can have Tylenol every 4-6 hours. We’ve been giving it twice a day. Once in the morning and once at night. so after adjusting the Tylenol, Jenelle has a better day, but still cranky at times. Sometimes cranky even an hour after Tylenol, so we still don’t know. At least we know we can give more pain reliever.

Happy Friday!

#lennoxgastautsyndrome #lgs #epilepsy #rnssystem #neuropace

RNS Placement - Day 9

Day 9 - another tough day. Jenelle had 2 doctor’s appointments. Endocrine and Cardiology. I thought her appointments were an hour apart but I was wrong, they were 2 hours apart. While waiting for our second appointment, Jenelle and I stopped by Floral Park to visit Aunt Nicki’s plaque. This is one of the few moments today when she wasn’t crying.

#lennoxgastautsyndrome #lgs #rnssystem #neuropace #rns #epilepsy #specialneedskids

RNS Placement - Day 7/8

Days 7/8 - I wish our happy girl would come back again. Last 2 days have been stressful. Jenelle is now experiencing bouts of crankiness and inconsolable crying. It’s not fun, especially when she can’t tell us what’s going on. Brett and I are exhausted. Our home nurse was here today… first day since before surgery because she was ill. She thinks Jenelle is just frustrated. Can’t imagine why?

. In other news, neurosurgery called today and asked us to upload data nightly. They think they have enough data to justify turning on the neurotransmitter at our post-op visit on 11/1. That would be amazing!

Please keep us in your good thoughts and prayers. #lennoxgastautsyndrome #lgs #rnssystem #neuropace #rns #epilepsy #specialneedskids

RNS Placement - Day 7 "Downloading Jenelle"

Day 7 - Jenelle had a better day today. We think some of the pain she complains about might actually be gas… due to the antibiotics and new formula. So I thought now would be a good time to explain our “homework” with the RNS. At her surgery, we were given a laptop with a wand to “download” the data from the device in her head. Each night I download the data, then we upload it to her doctor’s office every Sunday. Right now, the RNS is not turned on to deliver electrical stimulation, but rather to gather data similar to an EEG. After they have enough data, the doctor will turn on the RNS to best target her seizure areas. Pretty cool huh?

enjoy the video.

#lennoxgastautsyndrome #lgs #rnssystem #neuropace #epilepsy #specialneedskids

HAPPY BIRTHDAY and RNS Placement Day 6

Day 6 - Happy 21st Birthday Jenelle!

Recovery at home has been okay. Jenelle seems to be experiencing more pain, and swelling and is getting Tylenol more frequently. Her incisions look great and she sleeps well all night. We are taking it easy and trying to keep her comfortable. We uploaded the data from her device last night and we are learning how to collect it as well with the lap top. The handbook recommends that her RNS is not compatible with the use of stun guns or near jackhammers among other things.

Here is our cute new 21 year old - cute shirt from Aunt Norma and Uncle Dave!

Thank you for continued thoughts and prayers. Praying it gets easier for her every day! #lennoxgastautsyndrome #lgs #rnssystem #neuropace

RNS Placement - Day 4/5

Day 4/5 - we left the hospital last night and got home around 7:30. Jenelle slept well and got a cute haircut ala Mommy this morning. Now we rest and recover and keep our incisions clean! Thanks again for continuing thoughts and prayers! Happy Saturday!

#lennoxgastautsyndrome #rnssystem #neuropace #epilepsy #specialneedskids