Seizure Free @ 10 Months!

As you can tell, we've stopped updating this blog as Georgia's progress has been going so well but we also know some folks are still interested in knowing how things are going, so here's a little update from Alicia following a fund-raising event for The Hemispherectomy Foundation called "Jogging for Georgia!"  Thanks again for all your love, support and prayers!

date     Thu, May 19, 2011 at 9:16 PM subject     A world of thanks!

hide details May 19 (2 days ago)

Hello family and friends!

We wanted to send out a hearty THANK YOU for supporting The Hemispherectomy Foundation's Dreams on Wings Virtual Run.  A special shout out to those who actually got out and ran in your respective home towns (or get-a-way spots, Jamie!) as an extra tribute.  Many of you know...running is a sort of therapy for us, and a time when we think and reflect and pray.  It's very touching to know that so many of you shared that with Georgia last weekend, thank you.   Three of us ran theColfax Half Marathon here in Denver on Sunday and while the Hemi Foundation wasn't an official charity for the race, we made it a personal one.  Kudos to Brendaand Kim for a great (albeit wet and cold!) run and for shaving an impressive 30min off your times for a PR.  Ladies, thanks also for the company while training and during the race - it's hard to do long training runs solo, you guys pulled me through.  We will actually be looking into making the Hemi Foundation an official Colfax charity for next year, so if anyone else has their sights set on a half (or full!) marathon and wants to head west to partake next May, let me know, I'll keep you posted.  Free room, board and carbo loading at Grenolds West :)

With your donations, Team Jogging for Georgia raised just over $1,000 and placed 5th in team fundraising.  Nicely done!  Overall, the Foundation enlisted 630 virtual runners and raised over $20,000 to support and serve children and families impacted by hemispherectomy brain surgery.  Some of the money will be put into a scholarship fund for Hemi patients and additional funds will help families who can't afford the trip to attend the Hemi Foundation conference this July in California.  This conference is a unique opportunity to meet other Hemi families and also learn more about therapies and strategies to help our children continue to thrive.  We are excited to attend - looks like there will be a ton of good education/information. 

We know many of you have sponsored our various fundraisers in the past - please know how much we appreciate all of your generosity!  We also know that there are a lot of fundraising races for many wonderful charities.  We are so thankful you could help the Hemisperectomy Foundation this year as well.  Needless to say, of the charities we have supported, we now feel the strongest about the Hemi Foundation since Georgia's surgery was so life changing and frankly, life-saving.  Also, the Foundation is a small, grassroots organization, started by a family just like us whose daughter had this radical procedure to stop her seizures a few years ago.  They provide a tremendous amount of support and resources for families going through and after hemispherectomy surgery.  Hopefully the Foundation will continue to grow and be able to offer more assistance to families as well as fund research thanks to generous donors like you.  We are aiming to get a local Rocky Mountain chapter up and running this year as well.

Finally, and possibly most importantly...we got word today that Georgia appears to be SEIZURE FREE!  Praises!  She had a 24hr EEG last week and there were no detectable seizures during that time.  We will see her neurologist in a few weeks to discuss possibly even coming off her seizure medications.  Incredible news and something we couldn't even imagine hearing a short year ago... 

With much love and gratitude -
Rick, Alicia, Georgia and Lillian

p.s. A few photos of the runners and kiddo of honor are attached :)

The good word

Thought we'd try to get back on a roll! 

Many of you have asked - Georgia's big follow-up appointment at Children's on Thursday went very well.  Thanks for all of the thoughts and prayers!  It was a busy day - an hour session for occupational/constraint therapy in the morning followed by 4 hours at the brain tumor clinic in the afternoon, and to top off the day, a slip on the ice complete with a head bonk on the concrete.  The latter scared the you-know-what out of us, but Georgia is fine.  She luckily hit the back of her head not where the shunt is and never had any signs of concussion or injury.  Since she had just had an MRI last week, we really didn't want to head back down to Children's for another scan after being there all day.  Needless to say, Mom and Dad needed to cope with a few glasses of wine at dinner... 

As for the appointment - the good folks at the brain tumor clinic do it right!  Even though we are far from tumor concerns, they still let us follow there since it is a way we can see all of Georgia's specialists in one visit.  Everyone was thrilled with how Georgia is doing and needless to say they are still smitten with our little wonder :)  Here's a quick run-down:

• Neurology: Seizure-free for as much as well can tell!  Georgia will have a follow-up EEG in May or June.  She is currently still on lamictal, her one and only seizure med.  We'll discuss after the EEG in the spring as to whether we trial her completely off medications.  That's going to be a tough one...as much as we would like her off of everything, there is some security in knowing she has something on board.  Otherwise, Dr. Knupp was also as thrilled as we have been to hear that Georgia's sleep issues have resolved.  Please, everyone knock on wood...being able to sleep through the night has become a simple pleasure!
• Neurosurgery: Dr. Hankinson (Dr. Handler's side-kick) reviewed Georgia's MRI with us and was very pleased to see the results - it does appear that the fluid/pressure has resolved.  It's not a pretty MRI, but you can never tell that by looking at her which is most important.  And her left side looks picture perfect and that's what matters now!   Follow-up MRI again in 6mo.
• Neuropsychology:  Dr. Wilkening popped in quickly - no news here.  Georgia will have a big 3hr developmental assessment in February.  She did poorly at last attempt since she was having so many seizures, so we are excited to see how well she will do now.
• Neuro-oncology:  No offense Dr. Foreman, but we are glad you didn't have much to say.  No evidence of tumor for 2 and a half years now! 
• Rehabilitation: Dr. Biffl is basically the therapy doc.  She is a former physical therapist turned MD so we really feel in good hands.  She was thrilled to see how well Georgia is doing especially with her gross motor activity/walking.  She shares our concern with the left hand but is helping us plan for more intense constraint therapy.  I think we mentioned this before, but this is basically when we immobilize Georgia's right hand to force her to use her left.  We are aiming for 2hrs per day right now, and Georgia is doing very well - very little frustration which is amazing!  She is a crafty little bugger though and is able to use her mouth sometimes more than her left hand.  Frustrating as this is to her therapist, it is also a good sign that she has the where-with-all to problem solve!  We'll see Dr. Biffl again in 2-3mo and will likely have to look into more botox for Georgia's hand/arm at that time as well. 
• Opthamology: We were most anxious to see The King (Dr. King, that is!) since at her last visit with him, he was worried about persistent pressure in her left eye.  The good news is that her exam is stable which correlates with the fact that her MRI looks better.  The "bad" news is that we won't know if the damage has affected her vision until she is old enough to tell us so.  She isn't running into things and doesn't appear to have trouble seeing things except for her existing left field of vision loss so we're hopeful it's minimal.  Funny part of our vist with The King...Georgia had to identify some pictures instead of using the regular letter eye chart.  She nailed most of them, except when she was shown a duck, she said "stinky toes" - not sure where that came from but it made us all chuckle.
• Dentistry:  what you say?!  So did we - this was a first.  Apparently kids who undergo chemo or radiation for brain tumors need a dental follow-up as well for impact of the treatments on gum and teeth help.  We luckily just talked about how we need to ditch the binky :)

Nothing too exciting to report from the weekend - hope everyone enjoyed the long weekend!  A few more shots to leave with you...

Some east coast culture in Rochester 



Rockin the playdoh                                        Lillian will be keeping up in no time!

happy 2011!

A belated Merry Christmas/Happy Holidays and a very happy New Year to all!

We have intended to write for a while now, sorry to disappoint if anyone has been longing for a post :) The past 2 months have been a blur with lots of Grenolds' family activity and, we're happy to report, no medical drama! Georgia has been doing very, very well and has pretty much settled back into her busy schedule of preschool and therapies. When we left you, it was day 2 after her shunt placement. To be honest, we had hoped for an instant return of Georgia's clarity and development following the shunt. That didn't happen, but we remained patient and were assured by her docs that it can take some time for her head to re-adjust.

She had a follow-up MRI before Thanksgiving and while there was no drastic improvement in the amount of fluid, it was no worse and overall her behavior seemed a bit better. Then, by the beginning of December, something re-clicked and Georgia was taking off again. She began to have more words, was making many more observations, spoke in longer sentences, was following directions and just seemed much more focused. It was a glorious end to a pretty darn stressful year indeed.

We have a big appointment this Thursday with all her specialists so it will be great to see what they think about how Georgia is doing. Only concerning part of her follow-up is her eye exam. As you may recall, it was the opthamologist that pushed for the MRI back in October. At our last appointment with him 6 weeks ago, he still saw some scarring on her left optic disk which may mean her vision could have been permanently affected by the pressure of the fluid. We'll know more Thursday.

The holidays were celebrated in Rochester with the extended Grenolds' family. It was so wonderful to see everyone...though admittedly one thing was missing during the trip: the sun. Man, we've gotten used to the Colorado sunshine and had forgotten how grey winter can be back east. Daily stops at Dunkin Donuts made a bit up for it we suppose. As for how Georgia did, she still has a way to go before "getting" Christmas and it was clear when she was feeling overwhelmed, which admittedly made us a bit sad. But all in due time - frankly, sometimes it would be nice as an adult to shut down and wander around the room when you feel over-stimulated. Georgia enjoyed playing with her cousins and all the new toys but really wanted nothing to do with the whole gift opening process. To her the best part of Christmas was sledding and playing in the snow at her cousins' house. Thanks CLEC for the winter playground and all the gear! See video below, complete with joyful giggles.

So thinking back over the year - one could easily say "see ya 2010, you sucked!" And certainly many parts of it did: months of uncontrolled seizures, looking at a cabinet full of seizure drugs, seeing your baby fall over repeatedly from jolts of spasms and then recalling the anxiety of a 7+ hour surgery and having the surgeon break scrub to come out and tell you that your baby needs to have half of her brain disconnected. Sometimes these thoughts stop us in our tracks - did all of this really happen?? But setting aside those very, very tearful, fearful times, and having the clarity of being on the other side of stress and pain, we can honestly say that we are so very thankful that there was an answer to Georgia's seizures and that we found what appears to be a successful fix. Let alone, of course, to remember the joy of new life with Lillian's birth which was truly a sign of hope during such a somber time.

To spend a moment on sweet Lil. What a joy she is! It's been amazing to watch her grow and develop. From our prior experience, meeting motor and developmental milestones meant a ton of practice and a team of therapists, so to see Lillian master crawling, pulling up, clapping and other skills with minimal intervention and guidance is amazing. You can just see the wheels turning in her pretty little head as she sizes up a new task, though we will say she has developed a touch of a stubborn side (lots of grunting and squirming these days!). Big sister Georgia is very good with her little "sissy" too. She gives her lots of head kisses, is beginning to help fetch things to help with diaper changes and feeds, helps swing her little sis during our family blanket swinging events and usually takes turns while playing. We have seen some very typical 3 year old behaviors surfacing though, such as unwillingness to share, pulling toys out of little hands and telling us to "put Lillian down." Frankly though, we're happy as can be to see these very normal toddler behaviors emerging. Sorry Lil!

Of course we leave you with a few photos and videos to summarize the past few months...and many wishes for a happy and HEALTHY 2011!

Georgia's sassy new 'do and her very fashionable Christmas dress (thanks Gram and Pops!)

Sharing a laugh and a drink with Lillian at her baptism brunch

Snuggling with Daddy in Genesse

Lillian's big day

Christmas morning in Rochester

Check out the cycling...watch out Lance Armstrong!

Giggles and sledding