2-a-days

Hard core rehab training has kicked in! Today was Georgia's first real session of her 2-a-day training. It's actually eventually going to be more like 6-a-days: 2 each of physical therapy (PT), occupational therapy (OT) and speech therapy. They run a tight ship here at TCH training camp. Going to take a bit of pacing though.

Today, Georgia got in 2 combined PT/OT session and one for speech. In PT, she did some swinging and sliding which are 2 of her favorite activities so she was thrilled. Not the same as at our local playground, but good enough for now. She was so hungry and exhausted at lunch that she inhaled her mac n cheese a bit too quickly and yaked again. 1st time she vomited in over 24hrs though so not too shabby! Thanks Cathy D for helping with the clean-up. Killer naps today too - 2 x 2hr snoozes and still sleepy enough at bedtime to hit the sack. Though admittedly we have melatonin and cholral hydrate to help get her down and keep her down since one of her seizure medications makes our little love a bit of an insomniac. Not so fun to have a wide awake toddler from 3-5AM (this has been happening at home for quite a while). We thought surgery may have resolved this until 2 nights ago. She's not a fussy wide-awake toddler, just WIDE awake (as compared to her very groggy parents). One of the neurosurgery fellows suggested in rounds to perhaps give her a warm bath at that time to relax her. She obviously doesn't have kids. We scoffed and told her to come do it herself if that was her best suggestion :)

We had lots of visitors today too which was great. Quick shout out to the Lee's, our good friends from Boston who were heading to the mountains for a family reunion. What dears to make a hospital stop on their way to vacation - thanks guys! Thanks also to Cathy, Lisa and Dante for coming by and making our little one smile.

And have to give little sister Lillian some props too...she's rolling! Knuckles and a leftie high five from your big sis.

We've had such good feedback on the videos so lest we disappoint, here are a few hightlights of the day. Thanks to everyone for checking in on Georgia so frequently!

Military drills at PT/OT:

Loving the slide! (editorial note: this was her 3rd attempt...1st 2 had stronger climbing)

video says it all :)

We couldn't be prouder of our little wonder!! Though note the strategic positioning of the wheel chair out in the hallway...those therapists are sure conniving, huh Larisa!?

Georgia = Rockstar

I swore I was going to post this blog and subsequently be tucked in earlier tonight...just doesn't happen here! Busy days, busy nights.

Started rough again today but we ended on the up and up. So much of our day was unfortunately spent anticipating the vomiting again. Yeah, fun stuff. Had a number of pukes this AM, enough so that it bought her an MRI to make sure she was not accumulating fluid in her head. She's not....schwwweew. Also bought her a urine culture (via cath, poor thing, looks clear so far which is good) and yet another IV since her 3rd one also blew last night. Can a 3 yr old take much more in a day? Yup - an enema! Seriously!? Gotta make sure the lower pipes are clear and not contributing to the vomiting (good to go now, so to speak). We are in utter amazement with how much Georgia is putting up with...seriously, she wimpers and squirms a bit through all of this but then settles and blows kisses to all of the torturers as they leave. The rest of us would surely be sending other gestures I'm sure. What a trooper!

By the end of the day though, Georgia had stood again at least 4 times during PT (with us holding a basin close by of course), sang us a few songs (Twinkle, Twinkle was top of the list), played with her sister, met a new friend down the hall and FINALLY kept meds and a fine dinner of plain noodles, mandarin oranges and a smoothie down. A few videos to capture the highlights below. Georgia, you are truly a ROCKSTAR!

Standin' tall

Rollin' with Lil

p.s. In case you're counting, it's post=op day #8.

back on track!

Just a quick note...

we realize we should be getting to bed earlier since the nights are disruptive and the mornings are so early! Do neurosurgeons really need to round at 6AM? Especially on mornings after we had 2 IV infiltrates overnight?! Yes, fellow RN/NPs, we were pissed.

In any event - Georgia had a good day today, proving our theory that there will be ups and downs even as we get further out from surgery. Today's ups: a thorough hair wash (fig 1), much less puking, some actual eating, lots of smiles (fig 2), more singing and best of all STANDING during PT (fig 3). We were so proud! More tomorrow...good night to all.

some happy pix to end the day :)

1 - Georgia playing to the beat of her own drum.
2 - Lillian gets lost amongst the herd of stuffed animals.

3 - Famous Dave may have killer BBQ, but Georgia was not impressed with their big pig.
4 - Reading to Lil.

reality hits

...there are going to be good days and bad days. Today was the latter.

The day started off on what seemed to be a high note. Georgia had her "brain drain" removed! This was about a day early, but the team felt it was time to be pulled since her pressures were good and the small amount of leakage (mostly blood vs CSF for those of you who know EVDs!) at the site meant that the exit wound was a risk for infection. The drain came out without a hitch and Georgia didn't even flinch through the pulling or the stitching up of the site. EMLA cream and morphine helped I suppose :) But then she kinda crumbled the rest of the day. Lots of nausea and vomiting as well as sleepiness. We were really nervous that this was a sign that perhaps the drain came out too early and she was accumulating fluid, but everyone felt that she would look MUCH worse if that was the case.

As the day progressed, we too felt it was more a stomach thing - seemed anytime she tried to take meds or have a sip of water, it came back up versus her having projectile vomiting for no apparent reason (which would indicate increased intracranial pressure). Regardless, after having such nice progress for a few days, this felt like a huge setback. Perhaps we had done too much too soon. We have to remind ourselves that this was a huge surgery and by god, she is allowed to feel like crud every once in a while!

We finally got her seizure meds into her this evening and she kept them down. She's sleeping very comfortably now so we are hoping for a peaceful, restful night and a fresh start tomorrow. After all - this is a marathon not a sprint.

Every day Georgia gets a little stronger...

Post-op day #5: Rick and I were talking at lunch how we feel like we're in a time warp here. Was surgery really last Wednesday? Time is flying and so is Georgia. Events of the day:

• first hair wash (even the surgeon had commented on her nappy bed head!)
• improved head and trunk control (sitting with less assistance in the gym during therapy)
• big poop (very necessary for post-op neurosurgery kiddos - Georgia was not happy!)
• killer renditions of "Mary had a Little Lamb" and "Take me out to the Ballpark" (Red Sox version of course)
• sharing a Winnie the Pooh book with her little sister
• sweet talking a Respiratory Therapist out of her final EZ Pap treatment and....
• Mom and Dad master the posting of videos on this blog (see below)!

Everyone is smitten with Georgia's charm and continue to be very impressed with how she is doing. Her neurologist Dr. Knupp came by again today and said that the amount of movement that Georgia has in her left arm and leg so far is a good predictor that she will regain a good amount of function. We've also noticed that Georgia seems to have much better attention to tasks, TV programs/videos and even conversations than before surgery. We joke that she is probably thinking "thank god all that static is gone!" Atta girl G - we love you, keep cruisin'!

For your viewing pleasure, here are some videos of Georgia's progress. Ignore the bad hair do's :)

Post-op Day #1: G plays with her new bear and shows that she can follow along just great...

Post-op Day #2: A stacking wonder!

Post-op Day #3: G sits up w/a little help from her OT friend & plays on the Doodle board w/Mom...

Post-op Day #3: G's new wheels (& daddy's crash into an open door)...

As uncle Dale says...

...lookin' good! Post-op Day #3 yesterday brought a very exciting event...new wheels! The physical therapists are loaning Georgia a sweet new ride until she is back up on her own 2 wheels. Georgia was so excited when the therapist came to take her to the "gym" that she almost sat up on her own. Needless to say, the therapist was most impressed. Georgia had a huge smile and a twinkle in her eye as we cruised the halls. Our girl likes to GO and I think spending so much time in bed has really cramped her style. Like Mama, like daughter, Rick says :) For the time being Georgia has 1 PT (physical therapy) and 1 OT (occupational therapry) session per day, but this will eventually advance to 2 sessions each per day, totaling close to 4 hrs of therapy a day. Whoa! Georgia does really well and seems to really like it, though even sitting up for 15-30min at this stage is exhausting to her. She takes killer naps after her sessions (Mom and Dad sometimes too!). The therapsist are very impressed with her head, neck and trunk control. We haven't had too much more left arm/leg advancement but all in due time since it takes so much energy for her now just to control the big muscles. Her Mom and Dad on the other hand better get back on the program. Hospital food and lack of exercise = not good. Although we're not drinking as much now which is a good thing :)

Medically, she still has the drain in, though today they began to "challenge" her with more pressure from the drain which is a first step towards removing it. She is tolerating it well so far so fingers crossed. Dr. Handler, the neurosurgeon, has been in everyday and thinks Georgia looks great. He is very reassuring and patient with our many questions which is also nice. He seems very proud of his work...and of course of Georgia too!

We have some videos to post...stay tuned!

ups and downs

Post-op day #2 - lots of ups and downs today. Started off with smiles, peaches (her favorite) and lots of interactions. Unfortunately we didn't keep the peaches down. Mid-day brought her first physical therapy session, which she did GREAT through but was clearly challenging for her. We got her to sit up which was wonderful, but unfortunately triggered more vomiting. She felt better afterwards, but poor thing was pooped. We worried if the vomiting was from fluid accumulating in her head or simply nausea from all of the anesthesia and pain meds. The drain in her head is working well and she has no other neurologic signs so everyone is pretty sure it's a stomach issue. Poor thing is a little backed up too which doesn't help.

She was konked out most of the middle of the day but rallied for a strong finish, complete with pounding a go-gurt, taking (and keeping down!) all her meds in true Georgia fashion, playing with her Pooh book and Magna-Doodle and cuddling up to watch Kung Fo Panda. Strong work today baby!

Oh - and this was her good-night view from the hospital. A lovely Colorado sunset :)

ok, figured out the upload - here's smiley!

we have smiles!

Picture to follow when we have time to upload them...but Georgia is doing really well this AM. Her pain is under control, she took a few sips of water (laced with meds), pointed to things in the room, blew a kiss to her little sister and SMILED! We even have a little bit of movement in her left arm and leg. What a fighter!

We wanted to post a link to a wonderful organization we found when researching seizure surgery, The Hemi Foundation. We were hoping to not be official members, but now that we are, we thought we'd pass it along so you can read about hemispherectomies as well as the many stories of hope.

http://hemifoundation.intuitwebsites.com/welcome.html

Thanks so much for all the thoughts and continued prayers - we are so lucky to have such caring and loving friends and family.

longest day ever

Just a quick post since it's 1AM and we are beat, physically and emotionally. The surgery was a grueling 7 hours. Georgia is doing great - she was extubated (breathing tube taken out) easily and is sleeping comfortably. She has woken up a bit and already shown some of her spunky spirit (read: tried to pull her drain out and smack the neurosurgeon). She is moving her right side very well, but not her left, which is pretty much expected at this time.

As well as she is doing, we did have a setback - that they ended up having to perform a bigger operation than we had been hoping for. Basically, there was seizure actvity in the front part of her brain also which required them to perform a functional hemispherectomy instead of a more limited surgery. This surgery involved removal of the right temporal and parietal lobes (the ones on the side of the head) and disconnection of the frontal and occipital lobes (the front and back parts) but leaving these parts in place. As scary as this sounds, the prognosis for children who have had this surgery can still be quite good. We are really hopeful that she will regain good use of her left side. Since she already had significant damage on the right side of her brain from the tumor, it's possible that a good amount of her function had already moved over to the left. So that is what we are hoping and praying for now.

At the starting gate...

How better to start our blog than with a running analogy! And what a race these past 6 months have been. January brought new and worsening seizures and a hope that a quick medicine change would be the "cure." 6 months, 5 medications, countless EEGs, thousands of prayers and multiple second opinions later, here we are, the night before brain surgery. We're ready to take a deep breath and pace ourselves for this new leg of the race with the expectation that we'll celebrate many more milestones for Georgia in the yrs ahead, just as we did only 3 mo ago for her 3rd birthday...