Next Steps

Yesterday I took Katie back to Vanderbilt for a follow-up. We had hoped her PET Scan/EEG would have given more comprehensive data but her condition and prior surgeries make the test difficult to pinpoint anything. We knew this may be the case but I was hoping we might get lucky. As suspected her right frontal lobe isn’t firing as it should. Her case was discussed at conference. Conclusion: More data needed. More testing

Next steps are for the pediatric neurosurgeon and the adult neurosurgeon need to connect after spring break but most likely we are looking at a stereo EEG. This is a more invasive EEG to better pinpoint where the seizures a generating from.

On a fantastic note, She has not had a seizure in 3 1/2 weeks. What a relief. We had gotten back to a place of 20-30 per day so this has been a nice break. A part of me wanted the neurologist to say, “Let’s just put things on hold for now.”But we know the big picture. We have seen time and time again over the past 15 years that she will have a honeymoon period after a procedure or med change. Sometimes they last a few months. Sometimes they last a few years. It is what it is. The RNS procedure is mostly likely going to be what changes her outlook longterm. We are pressing forward and hoping to get the next testing in another month or so.

Today is day three of Spring Break. The boys are working so it’s just me and my shadow. We always have a love/annoy relationship going but after a day long rode trip…..she is on my last nerve. God love her. Bless her heart. Bless my heart. God help me. 5 hours in the van. All day. She napped on the way so lucky me. Headphones in. Crime podcast on. One the way back….not so lucky. She loves to lean forward and pull my hair or pull my seatbelt and try to choke me out. It’s real. All the while laughing hysterically. The other annoyance is she constantly wants to change out her DVD. She has a couple CD holders to organize them and she will flip through and perch the next movie on my shoulder to change it out. It’s like driving with a monkey.

So that’s the scoop. No fun Spring Break for us but hopefully we have lots of seizure free days coming. If you want to read more about her next text click the link below.

Stereoelectroencephalography (SEEG)

SEEG is the surgical implantation of electrodes into the brain in order to better localize the seizure focus. At UPMC, we use robotic assistance with ROSA® to accurately and efficiently place the electrodes for seizure mapping. Dr. Gonzalez was the first epilepsy surgeon in the US to offer SEEG and has performed over 1000 cases. He is also a pioneer of robotic-assisted neurosurgery, which improves accuracy and shortens surgery time.

https://www.neurosurgery.pitt.edu/centers/epilepsy/seeg

Mr. Dookey strikes again

Journal entry by Barbara Bradley — Apr 25, 2013

To all my dear readers that loved the Mr. Dookey story, this is your lucky day because he made his return yesterday. Thankfully I was not a witness to this most recent pull-up, prison breakout because he made his latest run for the border at Katie’s preschool. I bet this event falls under the “other duties as required” in the pre-k teacher job description. God bless ’em. 

So I have not been buying anymore pull-ups but a few still remain in our supply stash. Katie usually saves her dirty work for me so this hasn’t really come up at school until yesterday. I greeted Katie and her teacher yesterday during afternoon pickup time to see my daughter in the way too short, “extra” uniform I brought at the beginning of the year. Her teacher went on to explain what had taken place. At some point Katie had pooped and her teacher took her to the potty to change her not realizing Mr. Dookey had made his escape. Again, I was not there but I know how sneaky he can be. I don’t know if he sits nervously at the edge of the pull-up with eyes darting back and forth waiting patiently to make his move before cautiously sliding down, or perhaps he just straightens his cape and takes a nosediving, suicidal free fall. One will never know. 

If that isn’t enough of a visual, the teacher assistant entered the dark bathroom later. Upon seeing Mr. Dookey, she kicked at him to see if he was breathing and ensure there wasn’t some dead vermin curled up in the corner by the toilet. Boy, did she get a surprise! Now, before we blame innocent Mr. Dookey let’s consider the possibility that our pull-up friend should take some blame here. I wonder if I should write to Huggies and Pampers and tell them about my experiences. My day as a mom is only as good as my daughter’s diaper protection and I personally feel that pull-ups have failed me yet again. 

Coming to a town near you, Katie and her adventures with Mr. Dookey are sure to strike again. This is fun. Maybe I should have t-shirts made and we could vote on theme music. 

Katie had a follow-up with her local neurologist last week. He hasn’t scene her in almost a year so we had a lot to catch up on. I told him about her pupils dilating and constricting and wanted his thoughts. He wants us to continue observing her and taking notes about the events but he also doesn’t think we should lose any sleep over it. He thinks it’s just something called hippis which is really just a muscle spasm of the eyes. Similar to when your eyelid twitches or spasms. He certainly understands it is very strange to see. He also said that her pupils, bowels and  temperature regulation could all be related as something misfiring with her autonomic nervous system. Again, he just wants us to watch her but he doesn’t feel they are seizures. 

Today Katie will attend her third session with the feeding therapist. It’s taking some getting used to but we are making some progress.  They mostly just play with different foods to get used to the textures and help with the sensory side of eating but she isn’t expected to eat the foods during therapy to take the pressure off. Oddly, she has been trying some new foods outside of therapy. Her teacher has been getting her school lunches and Katie has tried chicken nuggets and baked chicken! She has also eaten peanut butter on a bagel. These are all great steps for Katie. She is 5 1/2 and this week and this is the first time she has eaten chicken. 

Katie’s IEP Transition to Kindergarten meeting will take place some time in May. I’m choosing to not worry about it anymore. I was told I would not be blindsided and would be told where the team is leading (in terms of school placement) prior to the meeting but it seems there needs to be a big reveal of some sort. It’s similar to watching The Bachelor. The guy is down to the last two women with one episode remaining when he will propose. He stands shirtless looking off the balcony that overlooks the Pacific with a concerned but come hither look on his face. His voice narrates the scene, “I just never knew it would come down to this…..I am in love…with….both woman….equally..I don’t know what I will do….” Gag

Dude!!!! You have the 3 carat Neil Lane, designer ring you picked out but didn’t pay for in your pocket!!! You are proposing in 24 hours!!! How do you not friggin’ know who you are proposing to?! Whatever, I’ll play along. Perhaps something earth shattering could happen over the course of the next couple weeks that will be a game changer in deciding where Katie will go to school. Stay tuned for the After the Rose Ceremony…