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

...and we're home

Gonna keep this one brief folks with a promise to reflect more in the days to come. We're home, Georgia got the blessing to go mid-afternoon. Not after a bit of drama with a temp of 104 in the wee hours of the morning. They did a bunch of cultures, blood work and a chest x-ray to make sure she wasn't infected somewhere and everything looked good. Sure enough she broke out in a very viral-looking rash this evening, so it would be pretty unlikely that it's her new shunt. Dr. H was not concerned in the least...didn't even raise an eyebrow at the high temp (though he is a surgeon afterall!). The only fevers he cares about are those that start after post-op day #3. So fevers, go away!

Bit of a different medium for the video - here's a link to our good-bye to Denver Children's. Welcome home sweet baby girl! And much love to all :)

http://www.youtube.com/watch?v=Et54qJnnvnw

Still here..

We thought for sure we'd make a break from TCH today...but alas, it wasn't in the cards. Georgia is doing really well, but spiked a fever mid-afternoon that was a little higher than the docs wanted to see. They gave us the option to wait until after dinner and if she didn't have another fever, go home. Caveat though was if she spiked again later in the evening we would have to come back to the ED. No thanks to that - do you know how many cooties there are in the ED!? So we opted to honker down in Rm 621 for another night. Good thing too, Georgia did have another fever this evening, slightly lower so that's a good thing. Nothing too much else to report...stay tuned!

A few more shots from recent fall activities to leave you with :)

First horse (well, mule) ride on Nester at Cider Days

Flexing her muscles on a wagon-pull while pumpkin hunting

And we should include one of the littler pumpkin too

and to all a good night!

De ja vu...it's past 11PM and I am just now settling in for the blog update, propped up on the pull out "bed," front to Georgia sleeping like a rock, back to the dark Colorado sky and trace outlines of mountains in the distance. I swear it's a time vacuum here in the hospital - where did the day go!?

In a nutshell, Miss Georgia is doing wonderfully! No complications from the procedure. She woke from anesthesia great, got some xrays that showed good placement of the shunt and drainage catheter (strong work Dr. H!), had some jello and water (dinner of champions), watched Barney and then drifted off to dreamland. While she was still a bit groggy, she seemed to also have re-found some of her clarity in the past few hours. Tomorrow will tell.

Sleep well, little angel, we love you and are so incredibly proud of you. Three brain surgeries by the age of 3 and a half? That's one hell of a dance card.

Love to all from Denver - and thanks once again for all of your continued thoughts, prayers, and love for our sweet Georgia.

quick update...still in OR

No news is no news here...got a late start in the OR so Georgia is still back there. No calls from the OR staff besides to tell us when they actually got started (after all the prep), so that is good news. In true Georgia fashion, she was again a rock-star waiting for more than half the day without food. Had an IV dose of benadryl to premedicate for her antibiotics (they give a pre-op dose of vanco for those who are curious...they use the big guns in these cases!) so she took a nice snooze after her spa hair wash.

More details as we know them....

Checking in


Crazy hair after her spa treatment

Singing for the nice ladies in the surgical waiting area

holding out for Handler

Just a quick note to let everyone know we decided to hold off on Georgia's shunt placement until Friday when Dr. Handler returns. We pretty much tapped all of her specialists for their thoughts on whether or not we could wait the 3 extra days, and it was a unanimous yes. Bottom line, there is minimal risk to wait longer and we feel much more comfortable waiting for the doc who knows her best. To quote Dr. Handler, it'll be his own "footprints" that he will be walking in. So let's send lots of good, refreshed thoughts to him as he returns from his conference on Thursday.

By the way, for those who are curious, when asked if Georgia will have any activity limitations with the shunt, she will: no sky diving and no scuba diving. I think we can live with that.

A photo to depart on (we finally got our new camera up and running!):

happiness is swinging...

tough choices

Georgia had a much better day Saturday, so we took advantage of having our gang altogether and in good spirits and took off to Boulder for the day to enjoy the outdoors and do some prime pumpkin pickin'. See pics below.

On the surgery front... it turns out that Mon won't work for Children's OR schedule, so the earliest option now is Tues. While that gives us some time to think thru the choice of having the shunt placement w/the newer surgeon or waiting until Dr. Handler gets back in town and having him do it on Fri (earliest possible date w/him). We'll likely make that final call tomorrow when Georgia goes in for her pre-op exam.

One other thing we have to consider and haven't mentioned yet... botox injections. While I'm sure Alicia and I could use some of that ourselves to get rid of our stress lines, botox is actually used to relieve the stiffness in Georgia's joints and muscles. Currently, Georgia has to wear a variety of braces to help maintain her range of motion w/her left wrist, fingers, thumb and ankle. Good as those braces are, she's still tightening up a bit too much and so the botox will give her some added relief by temporarily knocking out the muscles in her arm and calf. Since Georgia will be under anesthesia for the shunt we may take advantage of that time and have this procedure done at the same time. Otherwise, the poor kiddo will have to make yet another trip to the OR at a later time.

So here's the choice: 1) have the shunt placed Tues w/the new surgeon and have the botox procedure at the same time or 2) wait until next Friday for Dr. Handler to place the shunt and come back at another time for the botox injections (since rehab docs aren't available until the following week).

Given that persistent hydrocephalus is the greatest concern, we'll likely move forward w/having everything done on Tues; however, if the fluid build up is manageable for a few days, we may wait for Handler since he's one of the best there is and knows G's situation better than anyone. We'll of course keep you posted as to what we decide.

In the meantime, here are some videos from yesterday's outing - a much needed break away from thinking about hospitals and surgical options.

Running around Cottonwood Farms

decisions, decisions

Couple of cute swingers in Boulder

Capping off great day w/ice-cream!

not out of the woods yet

Hi folks,

Sorry we've been off the grid for awhile. Normally no news is good news and as you all know, Georgia has been making incredible progress since her surgery in July; however, things have taken a bit of a turn lately and so we wanted to keep you in the loop w/the latest developments.

Clearly Georgia has benefited from having the hemi. Without her frequent seizures, her cognitive development has taken off, her social interactions are greater and overall, she's just a much happier, calmer little kid. That said, we also knew her surgery wasn't without risks and it now looks like we may be experiencing some of that.

Over the past week, G just hasn't been herself. She's been rambling in her speech, shifting her gaze to the side or ceiling, less attentive during play and having difficulties sleeping thru the night. Her teachers, sitter and therapists all seemed to notice a change in her behavior as well but noted that it wasn't much different from a typical 3yr old. When you figure that Georgia just had major brain surgery 3mo ago, is going to pre-school several mornings a week and undergoing extensive rehab therapies in the afternoons, it's not surprising that she's been a bit out of sorts from all that activity.

Fortunately though, Georgia's blessed w/an amazing mom who is incredibly vigilant, intuitive and clinically perceptive. As she's done since G was a baby, Alicia has been right out in front of all this and has pushed to get Georgia some new tests to see if the seizures were re-emerging or if there was fluid build up in the brain that may be causing Georgia's disorientation. To cut to the chase, there are no new seizures (wonderful news!) but there is fluid build-up that creates pressure in the brain and is likely causing the regression we're seeing in Georgia's behavior.

The good news in all this is that the fluid build up, clinically referred to as hydrocephalus, is very treatable. Basically a small drain in the form of a small plastic tube, called a shunt, can be inserted into the ventricular space of her brain and divert the extra cerebrospinal fluid (CSF) down to her stomach. It's actually a fairly common procedure and Georgia should recover quickly from it but it is still brain surgery.

Interestingly, of all the specialists that Georgia saw this week (incl rehab, neurology, neurosurgery, neuro-oncology, neuro-psych, endocrinology & opthamology) it was her opthamologist, Dr. King, who seemed to be most in synch w/Alicia's concern about hydrocephalus. His examination detected color changes in Georgia's optic disc that were likely due to swelling from the fluid build up. With his sense of urgency, he pushed for the MRI yesterday that got us the results we needed to have the surgical team recommend the shunt placement. Without his help, it could have been another month or so before we got this information - so big shout out of thanks to Dr. K!

We're currently working out the details of when the shunt placement will take place but clearly the sooner, the better. We have tentative plans to admit Georgia Monday morning, the key issue is that her lead surgeon who performed the original hemispherectomy is not available until the following week. There are some other very skilled surgeons that could do the procedure, which is a fairly simple one for these folks, it's just getting to a comfort level working w/someone new. In any event, we'll do whatever it takes to give Georgia relief and I'm confident that once again she's going to overcome this latest challenge.

We'll be sure to step up the blogging and I promise to let Alicia write them, so you don't have to read my long notes. ;-) I'll just stick to the videos and pictures, of which you'll find a few below.

Thanks again to all of you for your continued prayers and support - it truly means the world to us and to Georgia.

Another day, another EEG

Scoping things out at clinic

G & Lillian go 4 wheeling

Best buds

starting pre-school!

Wow - there goes another week! And who would believe it, Georgia actually started pre-school!! It still floors us how far she has come in just the 4 weeks we've been home.

We're actually getting back to a pretty normal way of life around here - birthdays, end of summer BBQs, playdates, returning to work and of course, a dance card full of OT, PT and Speech sessions but the real high-light is that Georgia is going to school.

She's attending her preschool 2 mornings a week and despite some very normal resistance to Mom or Dad leaving after drop off, Georgia is really enjoying her new school. There is singing and dancing and reading "Stinky Face," all of which are high up on Georgia's list of favorite things to do. Best of all, when we pick her up, she has a huge smile on her face and is actually able to tell us what she did during school. Absolute music to our ears! And Mom and Dad are very impressed with the school, curriculum and teachers who have welcomed Miss Georgia with huge open arms.

First day of school!

First Dance!

Therapies continue and Georgia is still such a trooper. She has a new hand brace which we are breaking in. She has to wear the hand brace to keep her thumb and fingers extended. She also has a night leg splint to keep her foot flexed. Needless to say, the bedtime routine has become a bit more complicated with doning the braces + getting medications down + stretching + the dreaded suppository (yes, still a bit reliant on those). Yet Georgia allows all of it, sometimes requiring a little Barney bribery to help. We are still not seeing too much movement out of her left hand, but the good news is that she acknowledges it and does not seem to be neglecting her left side which can happen. Just tonight she was playing with her toy drum and shoving one of the sticks in her left hand saying "lefty has to hold too." Precious.

Our neighbors have showered Georgia with so much love and support, which culminated in a block party in her honor last Sunday. It was a lovely evening and Georgia of course stole the show...well, with her little sister too! Bonus for us parents - we could put the girls down to sleep, grab the monitors and still partake in the bonfire, beers and cigars until very late in the evening. Thanks W. Wesley neighbors for a wonderful party and more importantly for all of your love and kindness to our little girls!

We had a fun playdate with Kempley, one of Georgia's little friends from daycare. The girls (and their little sisters!) enjoyed a trip to Bellview Park, complete with a petting zoo, train ride, picnic lunch and huge playground. All on a perfect, sunny Colorado day. What more could they need!? We had a great time - thanks Kempley!

Snack sharing (no, Georgia is not flipping the bird, it's a pretzel!)

A few parent notes...happy belated birthday to Daddy Rick who celebrated his 29th birthday for an amazing 11 years in a row. Georgia performed a lovely Happy Birthday serenade which was undoubtedly Rick's best present. Here's the birthday boy and his girls just before we left on a mountain drive up to Fairplay, CO:

Lastly, back to reality...Mom started back to work. Bittersweet for sure, complete with some misty eyes driving back into Children's Hospital, this time as a clinician, not a parent. Seems like eons ago already that we were captive there for 3 weeks. Being in such a unique position as both parent and provider gives a whole new perspective on what a phenomenal institution Children's is. Let's just please pray that we stay on the provider side for a while.

Less we forget Lillian ...she had her first try of solid food this week. As the video shows, she was not a fan.

Much love to all - have a great weekend!

still with us?

It probably goes without saying, it's been pretty crazy this past week, hence the time gap since the last post. Our apologies!

Georgia (and all of us!) has been quite busy: mucho therapies, a day trip to Winter Park last Saturday, multiple follow-up doctor's appointments (neurology, neurosurgery and her regular pediatrician), orientation at her new preschool, learning some new songs, meeting a fellow brain surgery patient at church, dancing and continuing to totally wow everyone who sees her. In essence of time, hope you don't mind some bullet points to summarize the past week...

• Hospital Follow-ups - We met with both Dr. Knupp (Neurologist) and Dr. Handler (Neurosurgeon) last week. Both are very pleased with how well Georgia is doing. We forgot to get a photo of Georgia with Dr. Knupp, but below is a shot with Dr. Handler. Our plan for now is to continue to wean off one of the seizure medications (vigabatrin, the one that can cause vision issues). They typically don't do a repeat EEG or MRI until 1 year post-op, though Dr. Knupp did give us the option to get an EEG sooner than that if it would make us sleep better at night. The big question is - is there any seizure activity on the left side? There hasn't been and we see no evidence of seizures, but man, it would sure make us feel better knowing that side is still in the clear. We see Dr. Knupp again in 6 weeks so will decide by then.
• 
  
• Pre-School - Georgia had her pre-school orientation last week and will be starting actual school this Wednesday. We really, really like the school - and Georgia seemed to as well during the preview day! It's a 1/2 day program, 4 days per week, but we are starting her a bit more slowly (2 days) so we can make sure she still has time (and energy!) for her therapies. She has an IEP (Individualized Education Plan) and will be receiving PT, OT, Speech and Special Ed services every week, though only 30min of each so we will need to keep up with regular therapies as well. The team seems wonderful from what we have seen so far...we just can't believe she is already headed to pre-school. Time flies! Here is Georgia in her new classroom:
  



• Local trips - We got up to Winter Park last weekend, and did a local "hike" at "Lair O' the Bear" in Morrison this past Saturday. Georgia seems to really be experiencing things now, from throwing rocks into a stream to riding a mini-gondola to playing these cool xylophones that were all over Winter Park. She is so much more inquisitive and attentive to things now and can even recall past events, which she was not able to do before surgery. We're hoping to get over to the zoo this week - can't wait to see her reaction now to all of the animals (last time, she was only excited about eating the popcorn! :) Some photos from our adventures:

Winter Park playground

Throwing stones in Bear Creek


Making music


Mini-Gondola Ride



• Therapy - Her schedule now is 5 sessions per week: 2 ea of speech and OT and 1 for PT. She continues to get stronger, both physically and mentally. We aren't seeing much use of her left hand yet but as we think back, it took her nearly 2 years and an intense constraint therapy program after the first surgery to really see good use out of the hand. This is not uncommon for someone who has had a neurological insult - more area of the brain cortex is required for hand and face use, thus when there is a hit to that area, the deficits are more severe and it takes longer for the brain to form new pathways. She will not regain full use of her left hand, but we are hopeful that she be able to use it more than just a "helper hand," as those in the business call it. Here are some highlights from therapy:

Entering therapy with a spring in our step!


Working hard on velcro pictures


Learning the Frog Song with OT Kevin (Gambro folks: does this guy look familiar? Hint: he's the brother of our Salesforce.com guru...)


Treadmill training




• Dancing Fool! - Georgia has her groove back! Not only has she picked right back up on all of her singing, she is also adding to her repertoire ("I've been Working on the Railroad," the Barney Theme Song and "Little Frog"), and DANCING. Here she is entertaining us...and her little sister :)
  
  

Bed beckons - it's going to be another busy week! We'll try to be better at getting posts up in a more timely fashion. Please bare with us! Hope you are all doing well in your respective corners of the country.

p.s. Lillian helped with this post :)

backing up...

Now that we have the acuity of Georgia’s surgery behind us and she is well into her recovery, we wanted to share more of what the past 6 months have been like for Georgia and us. Many of you have asked if we are REALLY doing as well as we sound in our posts. We honestly aren't blowing sunshine up your rears, promise! We truly are thrilled with how Georgia is doing and she continues to amaze us every day. The hard, gut-wrenching part was leading up to and actually making the decision to go through with the seizure surgery. To be blunt, the past 6 months sucked, and the day of her surgery was the hardest day of our lives. We don’t intend to be dramatic here, but thought we would share some insight into this recent past.

Just to recount a bit of history for those who may not know Georgia's story so well. Georgia was diagnosed with a brain tumor at 11 weeks of age and underwent her first surgery at Boston Children's Hospital, almost 3 years ago to the day. It was completely removed and thankfully benign. At the time, her left sided weakness (hemiparesis) and left sided vision loss were worrisome, but nothing compared to the possibility that it could have been cancer or worse, it could have taken her life. And when her doctors at the time said her biggest risk would be to develop seizures, we didn't worry...it wasn't cancer and she was alive!

The seizures started 2 years ago when she was 16 months old. They weren't the scary convulsive type; instead they were something called complex partial seizures which consisted of her staring off, having slight tremors and stiffness and seeming "out of it." A single medication kept these seizures under control - growth spurts and illnesses caused break-throughs but easy dose changes in the medication (keppra) nipped them in the bud. Then in January, she started having clusters of seizures lasting 5-10 minutes, occurring 5-7 times per day. These seizures made her arms and legs flail out, her head bob down, her eyes beat over to the side, her trunk flex and would often caused her to fall down. We tried to change her medication for the 1st time which was a painful 6 week titration process, all the while she was having just as many seizures day after day. It was truly heartbreaking to watch her have these. After 6 weeks, her seizures were really not better so she was admitted for a 24hr EEG (which looks at brain activity). This EEG showed that Georgia's seizures had changed and were now classified as infantile/epileptic spasms and we would need to try alternative medications. These type of seizures were harder to control and had much worse prognosis if not controlled. This was probably the hardest news to hear, oh, and this happened a mere 2 weeks after Lillian was born. Needless to say, it was an emotional March.

We tried 2 other medications from March – June that were better aimed at the spasms all the while pursuing the possibility of seizure surgery in the event that these medications would not work. The thought of a second brain surgery for a 3 year old was horrifying...but we also understood that it kind of made sense since she had a large amount of scar tissue from the brain tumor which was likely the source of the seizures. It would also be much more harmful for her development to continue seizing which made a mechanical fix seem to be a reasonable alternative. As if we needed more proof, Georgia was becoming less herself – the dozens of songs that she used to belt out so easily were much more difficult for her to remember and more often, she seemed to stare off and become less responsive to people around her.

The subsequent surgical work-up in May-June showed that Georgia did have a somewhat focal source for her seizures, limited to what they thought was the posterior quadrant of the right side of her brain (right hemisphere) encompassing most of the temporal lobe and parts of the parietal and occipital lobes. The frontal lobe, which is the largest, looked OK on the scans and EEGs. These results, plus the facts that she failed 4+ medications and had plateaued in her development made her an appropriate surgical candidate. Part of us was crushed, part of us hopeful that perhaps we had a “cure” with surgery. We did our due diligence, sought second opinions from Boston Children’s and Cleveland Clinic, talked to other families, attacked the medical research and ultimately realized that surgery was Georgia's best shot at stopping the seizures and getting her back on track to do normal 3 year old stuff. Scary as another brain surgery was, we had also been told that her young age was a huge advantage…if we had a quarter for how often we heard how "plastic" little kiddos brains are, we'd be rich. Needless to say, we’d rather not gain our riches this way.

To be continued…



Here is Georgia in the surgical waiting area on the day of her surgery. What a trooper...she hadn't eaten or drank since dinner the night before and she was still smiling.

home life

It's amazing how much more there is to do at home than the hospital! It sure was nice to have our room cleaned daily, therapy for Georgia right down the hall and food delivered right to us, even though it was hospital food :) Being home has not left much time or energy for the blogging, but we wanted to get a quick post up today.

Weekend highlights included some trike riding in the neighborhood, reconnecting with our friends, neighbors and folks at church, some exercise for us old parents and finished off with a certain couple's 7th anniversary. Thanks Lisa for watching the girls so we could head out for an early dinner to celebrate. Sushi Den = yum.

Georgia is doing great at home. It's really been exciting to see how much more even-tempered she is and how much more she attends to her play and us. After some wobbily first steps, she's now walking pretty confidently around the house - even climbed the front stairs, all 14 of them, on her own before we realized it. Nice work G, but let us know next time :)

Some more photos below from the last day at the hospital, w/a little hint of what's to come in the videos below... lots of outpatient therapy (6 sessions per week to be exact). In typical Georgia fashion, she's already tackling the stairs and ready for whatever we throw at her.

Team G!





And we're outta here!


Happy to be home



And a few videos since being home:

Cruisin' the cul-de-sac (and checking out the neighbor boys!)



Mastering the stairs at our new PT

not to fear...

...more posts are here! Sorry for the delay, it's just been a busy few days getting settled. But man, does it feel good.

Backing up, Georgia had a great last day at the hospital, although we both thought that the physical leaving of the place was a bit anti-climatic. No fan-fare? No parade? No tears? That being said, Georgia did have a great few final therapy sessions on Thursday and her therapists didn't go easy on her for the send-off. Remember those one-arm push-ups? OK, not yet, but close. Terri, the PT, had her doing 1 leg sqauts, we kid you not. But to make up for the hard sessions, they also threw her an ice cream going-away party. Georgia was thrilled to say the least. Ice cream for lunch? Nice! Mom was a bit teary saying good-bye to everyone. Georgia really had such a skilled, caring and energetic team and she made so much progress working with them. If you are reading, thanks again so very, very much Terri, Kara, Beth, Megan, Shannon, Kim and Shaunda (oh, and the weekend team too!).

Our arrival home brought a lovely surprise for Georgia - balloons, signs and gifts from our neighbors the Wehr's. Thanks guys for spiffing up the place for her return! Georgia was smiling ear to almost ear (still droopy on the left) and took off for a few victory laps around the kitchen island. She was a bit slower and definitely more cautious than she used to be, but it was a joy to see her so happy and also jumping right back into her old activities. More on our reflections through this whole process to come, but one of our biggest fears with going through with this surgery was that it would change who Georgia is. With what we have seen so far, and as demonstrated by how quickly she resumed some of her favorite home past-times, we feel reassured that it didn't.

On her first night home, Georgia also enjoyed exploring all of her old toys as well as quite a few new ones (thanks everyone!), checking out her new bedroom furniture (thanks Pops and Papa for setting it up) and taking a walk through the 'hood. You could tell by the look on her face that she was just so happy to be home.

No rest for the weary, though. Friday brought 2 hours at the Children's Hospital satellite clinic in Littleton to meet her new team of therapists and get back to work. We will also be resuming sessions with Larisa, her physical therapist up in Evergreen so we feel really good about our outpatient plan. And what's most important for Georgia is that it is FUN. There are all sorts of swings and climbing things in Littleton as well as sword fights with a fellow Sox fan (see video) and trike riding, obstacle courses and fresh mountain air in Evergreen. What more could a 3 year old want!?

Highlights from the past 2 days:

Good bye treat


Giving Beth some love and a huge thank you


Welcome home swag


Home sweet swing (this was before the puking...motion made us a bit nauseous it seems)


Welcome home kitchen laps

PT sword fight