Parker Mason Brown Emergency Surgery

I hope to get a more detailed blog post in this weekend, but here's a quick update.  Parker went to the ER on Thursday night at 10pm, and surgery Friday at 8pm.  The surgery ended at 10pm and we were admitted to the neurosurgery floor at Texas Children's at 10:30pm.

Parker was released on Saturday evening, yes he is a trooper.  Needless to say, the docs were pleased with their art work and Parker's attitude enough to release him 19 hours after brain surgery.

He's had a few painful spells, but we're close getting that under control.  I want to share something very encouraging.  I pick up all of Parker's ct scans and x-rays at the hospital's archives and I've put together a progression of the brain development over the last 6 months.

Below you will notice a few things.
1. Parker's brain is developing
2. The new shunt is on the top of the head now
3. If you look closely, the new shunt looks different than the old one because it is a programmable shunt

Parker is 5 months!

Parker is 5 months old today and he rolled over for the first time!  Now it's his favorite thing to do.

Hope everyone had a wonderful Valentine's Day!  Parker, Leah and I had a nice picnic together.

That's all for now.

Cheers,
Dave

Parker Mason Brown - Living the Good Life

This title of the post is best depicted by Parker's 4 month picture that Leah and I took yesterday.

Parker is seizure free for 4 weeks as of today!  He's growing at a normal pace according to our pediatrician, Dr. Parkerson, and he is the sweetest, happiest kiddo.  Leah enjoys the days back at the office with her co-workers and Parker enjoys his days with Chessa, his nanny.  Parker learns something new everyday, from slowly figuring out how to smile, laugh and jabber to quickly playing with his toys and figuring out that he has feet.

Leah and I went back and forth with our neurologist for a couple of weeks to get Parker medicated properly.  He takes 1 medication 3 times a day which is prescribed for typical epilepsy.  He takes another medication every morning, which will eventually be weened out.  That prescription immediately stopped the clusters of seizures he was having.  They believe that the fluid build up on the outside of the brain was causing the clusters, which the original medication wasn't intended to prevent.  I'm assuming that we will get rid of the second medication after the external fluid recesses.  Regardless, we are in a good spot.

We had one stint of sickness throughout the house that put Leah, Parker and myself all out of business for half of a week, but Parker was surprisingly content considering the circumstances.  Luckily we only took one quick trip to Dr. Parkerson to make sure everything was under control.  Since then, we've had his 4 month check up where he weighed 13.8 lbs and was in the 30th percentile in most categories in respect to 1 month preemie babies.  Obviously, his head is topping the regular charts, but that's too be expected.

Early Childhood Intervention, ECI, came out for an interview and will be supporting Parker with Physical Therapy at our house twice a month.  According to the standardized tests, he is testing as a 3 month old in regards to his fine motor skills and a new born when it comes to gross motor skills (primarily because the size of his head is holding him back from the next steps).  Parker didn't respond to them ringing a bell, which is the standardized test for cognitive ability, so he ranked as a new born there.  As the therapist was holding Parker, talking back and forth with him, making him laugh, ect...she told us that the standardized test for cognitive ability couldn't take into account for his ability to interact on this level and to take the results with a grain of salt.

The next 3 months will be busy with multiple appointments now that he's getting close to his 6 month mark.  We hope to have more information from the doctors about his vision, hearing, head shape, and status of the shunt.

Leah, Parker and I want to thank you all for the continued support and prayers.  We can't wait for him to meet more of you in 2012!!

Cheers,
Dave

More Seizures

Coming off the heels of 2 ER visits in the last week and a half we headed into this weekend ready for anything but the med center. Friday afternoon greeted us with a short, 30 second seizure, 2 hours later another one, an hour and a half another one, and so on. In the mean time, we went through the protocol given by the doctors. After talking to the on call neurologist and neuro surgeon, we were told to increase his dosage of Keppra, his daily med. That didn't work, so by the time he seized on Saturday morning around 7am, it lasted 3 minutes and was much less subtle than the earlier episodes. Per the doctors' instructions, we gave Parker a dose of Diastat, which is similar to the meds used when we go to the ER. Fast forward to today and he hasn't seized since we gave him the Diastat. Leah spoke to our Neurologist today for N update and they informed us that His daily meds could take up to 2 weeks to take effect. We're glad to know that now, and glad to spend a weekend at home without meeting any new doctors (in person). As for us, Leah has presents wrapped and under the tree and she's slowly getting ready to go back to work. I am still getting my annual hunts/ fishing trips in while pushing through the year-end madness at work. Parker is the cutest kid in the world and it's time for him to go to bed. Good night

Made it Home

Leah and I are sitting on the couch with Parker sleeping on Leah's lap. Exhausted, yes, happy to be home as a family, absolutely! Being home is one thing, but walking in to a home that looks and smells like Christmas is even more relaxing. After dinner I'm running up to pick up the meds prescribed by our neurologist. The EEG didn't show any signs of seizures, so they prescribed Keppra, a medications typically prescribed for a broad range of seizure activity. Keppra will be a daily medication used 3 times a day and Diastat is his equivalent to an epi pen. If he has an extended seizure, we will use the rectal Diastat. Unfortunately they weren't able to pin point the cause or location of the seizures, but the good news is they have a definitive diagnosis of seizures since the activity stopped in the ER after administering Ativant (ER's version of Diastat that is administered via IV). Time to go change a diaper :)

More Parker Mason Brown Pictures



He's starting to smile!





EEG Testing today - 2 1/2 months





2 month shoot





1 month shoot



Parker Brown's 2nd EEG

Parker is undergoing an EEG right now to monitor his brain activity.  Right now the docs want to determine what type of seizures he is having and where they are happening.  Hopefully the meds that they gave him yesterday will wear off and they can catch one seizure while being monitored.  That should give the specific information they need to answer some of the questions in order to properly medicate. Leah and I are doing well.  We are getting to know the folks around here pretty well.