Posted on by A Laughing Matter

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

Posted on by A Laughing Matter · 2 Comments

A Better Place

It has almost been a month since Katie was discharged from the hospital. Knock on wood, she is in a much better place than she has been in the last few months. We have made more medication adjustments but very slowly to decrease side effects. She is eating more and sleeping better. Her balance has improved as well.

We had a follow up last week with Neurosurgery. We haven’t been followed by them since she had her VNS implanted. With the worries about changes in the brain and CT scans from her last hospital stay, we wanted to be sure all was well and no further testing would be needed. The appointment went well and he recommended she have another quick CT scan while we were already at Duke. He wanted a scan done while she was doing well to compare to the scans done in the hospital. Thank God! Thank you all for the prayers, cards, emails and meals. We really appreciate it.

We have one more appointment at the end of the month. This will be a follow-up with the GI/Liver doctor. I am certain they will get labs done to see how the liver enzymes are behaving. I’m sure the other main reason for the appointment is to check on her reflux issues and see if she has put on some weight in the past month.

Katie has been back in school full time since mid February. The restrictions have lightened a bit to allow some in-person learning for all grades. We will see if it sticks. Roy Cooper may decide to throw another curve ball. Last week Nathan got to go Thursday and Friday. For now, the plan for the remainder of the school year is to learn virtually M-W and attend class Thursdays and Fridays. If you ask him about it he will tell you in his words “this is exhausting”. I can’t say I blame him. Getting up at 5am to shower and put on real clothes to go sit in a classroom for hours does sound pretty exhausting. Especially after waking 15 minutes before class to log on to a virtual session. The commute is 20 feet from your bedroom, the snacks are endless and you get to use your very own private bathroom. Such is life. Pre, during and post pandemic – he can say he has experienced it all and he gives in-person learning 1 star.

Many have inquired how I’m doing. I am great actually. I am glad Katie seems to be heading in the right direction and restrictions are lightening up. I have been trying to get to the gym as much as I can. Virtual learning and doctor appointments have not been very conducive to getting back in shape. I am just happy my tiny gym is open. They are only open in the mornings and the class sizes are limited but its great just to have the option of going when I can. It is usually the same 5 or 6 of us that are consistent these days.

One young mom in our small crew is there every day for at least 2 hours. I call her Gym Barbie. Gym Barbie is golden blonde and very perky. She comes with matching workout clothes and glittery bag. In her bag you will find a Premier Chocolate Protein carton, earbuds, workout gloves, towel and gallon-sized turquoise water bottle with matching turquoise straw (very environmentally friendly). Other accessories included but are sold separately: white Land Rover, treadmill, free weights and more matchy match yoga/workout clothes and shoes. She’s adorable and very fit.

Then there is me. I definitely do not have my own Barbie inspiration. If fact I barely remember how to behave in social situations. I usually shlep my way in from the parking lot fumbling with my keys, water bottle and bag. My hair is in a curly knot on top of my head. My clothes do not match. My shoes do not match my workout clothes. My sweat towel does not match my clothes or shoes. My gym bag does not match my shoes, towel or workout clothes. I hop on the exact same treadmill each and every workout. To keep myself motivated I treated myself to wireless earbuds so I can watch TV on my phone while I’m on the treadmill. I would never make it through cardio otherwise.

My show of choice for these hour long cardio sessions has been Impractical Jokers. Yes, I know that makes me very mature. If you aren’t familiar, the premise of the show is 4 guys that grew up together film each other doing ridiculous pranks. They take turns for instance working at a fast food drive-thru or the reception desk of a doctor’s office with an earpiece and have to say what the others tell them to say. If you can’t say or do what they tell you, you lose. If you lose you are punished with doing something even more outrageous. I know it sounds dumb. It is dumb. I have the maturity of a teenage boy. But in the name of working out – whatever gets the job done is what gets the job done.

The only problem I have encountered in my routine is that I forget where I am some days. A few weeks ago, I was really feeling strong and pushing myself. I was definitely in the ZONE working out and watching my show. I was feeling good. Next thing I know there was a scene that got me so tickled that I cackle laughed, snorted, peed a little and then almost went flying the back of the treadmill. Good news it I managed to keep my balance and because I’m such a hot mess anyway no one even seemed to notice or care. Yay me!

That’s all I got this time, friends. Stay tuned. Anything can happen tomorrow. The possibilities are endless. Stay well.

Posted on by A Laughing Matter

Wearing Slippers…..to the gynecologist…

You heard me. I wore “house shoes” as my mother called them…..to the gynecologist. yup…I’m not proud. I was actually pretty mortified.

Here it is. The week of Thanksgiving. Just a mom trying to get one child on the bus and the other focused and ready for virtual learning. If get a workout in just after the bus comes, then it’s on to my side hustle; marketing Black Friday sales for a local small business.

All I know, I was trying to get a press release finished up before my annual…dreaded….ob/gyn appointment. It was at 2:15 but you know you should leave an hour early for the whole come-early-cuz-we-have-to-ask-if-you-have-diarrhea-and-take-your-temp…you know standard “Covid check 2020”. Even though I know they typically run half an hour late anyway, I am a girl that likes to be on time. It’s how I’m programmed.

So, back to the clock; I had showered, shaved…..I need to at least finish a rough draft of my press release, I need to leave early…..I need……..ahhh…eat lunch. I haven’t eaten lunch. It’s almost 2pm. I shoved down lunch and off I go. I find a great parking spot, I survive my CSI level Covid questioning. Temp is normal. Sticker on my boob. 97.6. Onward to 4th floor.

Destination OB/GYN. I check in. I’m a little bummed that all the magazines are gone. There is almost nothing better to a mom than a quiet reception lobby and a People magazine. No worries. I have a phone. I can check my email…….crossed my legs. Oh, shit. I am wearing slippers. SLIPPERS….To the gynecologist. I worked in a shower AND shaved my lady parts for this?! Yet, I am wearing slippers. To the gynecologist. Sigh.

But then….Thank you, Jesus! A man came in. A sweet, older black man came in and asked the receptionist. Actually, he told her “I know I’m in the right place! This is the urologist, right?” “Ummmm…no sir, this is a gynecologist office…”. That’s right. Ha ha! not the urologist. Ha! We all giggle. Then it is quiet. I don’t think anyone noticed my slippers but I definitely felt better after that.

Next, the nurse came to get me and I had to make my walk of shame to the back. She asked me to step on the scale. Then I made my confession and we both laughed. She gives me a gown and asks me to undress. I never know what the proper etiquette is for he OB. a when you take off your clothes do you fold them nicely on the extra chair. Do I hide my folded panties? Now that I’ve made it this far should I just leave my slippers on and just own it? Like a boss. Right up in the stirrups? It was tempting actually. It would only be funnier to not say a word about it. When all was said and done I took them off and carefully placed them on top of my folded panties to complete my clothing tower.

I wish this was my most embarrassing doctor moment but it doesn’t come close. See link below…

a 90’s thing Enjoy! I really should move or at least get new doctors.