home sweet home

We're home, couldn't be happier...or more tired. Stay tuned, we'll be back on line tomorrow. Sleep well, sweet angel, welcome home!

ready... set... Gait Lab!

Georgia's stay at Children's will soon be over but her therapist team is not wasting any time before she leaves. All three disciplines (PT/OT/Speech) really put G threw her paces today - twice in fact, with a little bonus session in what's called the "Gait Lab".

Normally, Georgia gets a chance to power-nap b/w her therapy sessions but not today. After her am work-outs, Georgia got wheeled straight down to a high-tech studio in Children's Lower Level. In this "blue room", dozens of cameras and computers track a patient's every move as therapists have them go through various exercises. It's the same technology used to monitor professional athletes and make those super-realistic animations you see on Xbox. Children's facility is actually one of the top 5 most advanced such labs in the world! (if you're really interested, check here: http://www.thechildrenshospital.org/pro/MakingitBetter/gaitlab.aspx). While Georgia is still too young to get the whole work-up (& besides, who wants electrodes stuck all over their body - definitely, not her!), getting the test done even on a limited basis still has many benefits.

They ended up videotaping her w/just a few of the floor cameras (no electrodes), so that her docs and therapists have a baseline to evaluate her future progress and also develop exercises to improve her motor function as she gets older. You can even see in the clips below how much better she walks w/her SMAFO (small ankle brace) and sneaks vs. just her bare feet. You may also notice that G uses her left arm quite a bit as a "wing" when she walks. She does this to help stabilize herself and it should lessen w/increased therapy. Finally, you'll see that Georgia had to strip down to her diapers to do the tests. That was so they could see her back and leg muscles as she walked. Nothing gets overlooked. Once again, she put aside the indignities required and knocked out the taping like a pro. In fact if you listen closely, you can hear her say: "Dr. Gallagher, I'm ready for my close-up." :)

And good thing too, 'cause right after taping she had to get upstairs, grab lunch and get right back to her therapy sessions - there's just no rest for the weary (or champs like Georgia!).

Mission Control

1st Pass (pardon the skivvies)

2nd Pass (still going strong)

Sprints! (thankfully w/shoes)

t-minus 2 days!

So we have an official discharge plan...Thursday! We waffled back and forth about leaving tomorrow or staying until Friday to maximize her inpatient therapy; in the end, we compromised on getting a full day of therapy tomorrow, half day Thursday then starting outpatient OT and PT on Friday with speech kicking in on Monday. Georgia is dictating most of this plan - her progress has slowed, which is an expected thing, not a bad thing, and we can tell she is reaching her limit with hospital life. She is asking much more frequently now for car rides, playground and swings. She will certainly miss pushing all of the elevator buttons around here though as well as the mammoth-sized, piping hot pancakes for breakfast. The latter we will do our best to recreate for her at home :)

Three weeks ago tomorrow we started this race - Georgia is still pushing hard and is on track to finish her race with negtive splits. We couldn't be prouder and will of course be her biggest fans cheering her to the finish, whenever that may be. Thanks to all of you for your cheers of encouragement too...we hear and feel it so strongly even across the miles.

Some highlights from the past 2 days:

Where is Tom Hanks when you need him?

Georgia doing her best impersonation of the Swedish chef

Event 1: Rock climbing

Event 2: Wagon pulling

Nice glasses (actually used for an optho exam today!)

chill Lil

"So who's taking care of Lillian, through all this?" you may ask.

Well rest assured baby sister has been in good hands. For the first few weeks of Georgia's hospital stay, Lil had the pleasure of being entertained by four very engaged and doting grandparents. Lucky girl. And while G was busy breaking all sorts of TCH Rehab records, Lillian was nailing her own milestones. First came the roll-over (not easily done w/the girth she's working with! :) and now she's even moved on to sitting up in the Bumbo seat (see her sweet victory smile below).

With G doing so much better, Alicia and I decided it was time for us to resume full-time parenting of both girls and said our goodbyes to Nana, Papa, Gram & Pops last week. Both sets did great and we really appreciated their help – though Desi will never look at a newspaper the same way! (Susan, thank you also for the post-its – pls know that the dishwasher has been unloaded and the coffee supply replenished :).

So quick Lil story before I turn you loose on the videos...

Well it turns out the little bugger has developed quite an appetite over the past few weeks and is packing on the lbs (as are we all!). She’s drinking so much in fact, that we’ve tapped all our milk supplies and had to try the formula route yesterday. Suffice to say, Lillian appreciates the real deal and let me know it by hurling all over the back seat of the Subaru once we got to the hospital (thankfully not on the ride there). Still, even after her Poltergeist move in the car, Lil remained quite calm and was happily carted into the hospital where a fresh bath awaited – though not before heaving a few more times in Georgia’s room. Nice, eh? Don’t worry, the videos below don’t capture that special moment. Enjoy…

sitting pretty

Lil reading?! (soon...)

G & Lil bunking up at TCH

Getting ready to visit big sis

the great outdoors

Another low-key weekend day...Georgia was relieved! I think the week caught up to her - she had a mammoth nap today, over 3 hours. Of course we poked her a few times to make sure it wasn't a bad, neuro type of sleep. It wasn't, she was just beat :) Good day though, lots of outside time. Mommy and G went rouge and took a wagon ride/walk over to University Hospital in an attempt to find a decent cup of coffee. The coffee shop at Children's is not open on Sunday - not sure why, definitely a business opportunity! For those who know TCH, you know there is a Caribou Coffee across Colfax near I-225. I didn't think taking a TCH wagon complete with IV pole across a 5 lane road would be acceptable, so we settled on a jaunt over to the adjoining adult hospital for a cup of Seattle's Best from Subway. Not ideal, but not bad. Where is Dunkies when you need it!?

Georgia's OT and PT therapists also did an outdoor session today - thanks Kim and Shannon! We went out to the grassy courtyard, played catch and hide-a-critter. The ulterior motive was to see how Georgia did walking on various surfaces (i.e. grass, stones, sand). She held her own, though certainly gripped our hands a bit tighter as she walked. She is certainly more tenative now, but honestly, we'd rather have that than her being impulsive and not knowing her limitations. Impulsive = helmet = sucks. You keep being cautious little one - we are so proud of you!

A few photos to capture the day...video of "happy birthday" already posted for you video junkies :) Good night to all!

Going rogue off-campus - note the large fluid accumulation on the right side of her head is almost gone!

Critters in bowls with Kim and Shannon

Pet therapy with Gilbert the Great Pyrenees

birthday serenade

Happy birthday Papa!!

peace and quiet

It was a relatively quiet Saturday here at Children's. And quiet is definitely not bad! As a nurse and NP, it was always disappointing to be away from my family to work weekends but to be honest, it was kind of a nice time to work because the hospital usually slows down to a much easier pace. Same is true on the patient side we are finding. The week days are jammed packed with therapies and rounds and just a more constant buzz on the unit. Georgia still has all of her therapies on the weekend, just less stuff inbetween. Today we casually dined al fresca with yummy blueberry pancakes after her early AM PT session. We then rode the elevators - Georgia loves to push the buttons - returned for speech therapy and then ate lunch looking out at the mountains from our room. She had another joint OT/PT session early afternoon during which she skillfully navigated an obstacle course, made a pretty sticker picture and nailed a new numbers puzzle. Georgia rode the trike back to her room, head bobbing most of the way she was so tired. The afternoon was pretty much consumed by a 3 hr nap (Mom and Dad had shorter versions!), a nice warm bath, a rain storm and pizza dinner with Mom, Dad and Lillian. Oh - and a wonderful visit from Miss Doris, one of her daycare teachers who brought a huge handmade card from her classmates. What a wonderful surprise - thanks Miss Doris! The evening was topped off with some chocolate pudding and of course, good ole Barney.

Georgia is fast asleep in the bed across from me with such a sweet look on her pretty little face. It's hard to imagine all she has been through in the past 3 weeks - rather, 6 months - by just looking at her now. Thank God for quiet Saturdays.

Here's the card from Georgia's school friends - love the hand prints! Thanks to everyone else, too, who has sent cards, pictures and gifts...Georgia's room here is beautifully decorated and more importantly she is surrounded by so, so many kind thoughts and prayers.

And here's a video from the park yesterday that I was finally able to upload. No good footage from today...I left my phone behind during therapy and unfortunately Georgia's singing that I did catch on video had poor sound. Stay tuned!

did someone say playground!?

What a huge day for Georgia...a field trip to the playground! We had purposely not told her yesterday for fear she would be upset to not be able to go RIGHT NOW. So this morning after she got ready, we told her we were going on a car ride to the playground...which I think to her sounded better than the proverbial Christmas morning. Her smile was ear to ear and she nearly climbed herself into her car seat. She grinned the whole way to the park and for the most part the whole time she was at the park. She was definitely more timid though as she maneuvered on the play structures, rightly so. But she explored and tried most things and seemed just so darn happy to be outside with the sun on her face and the wind in her hair.

Only bummer of the morning was the lack of swings at this playground. Seriously, no swings? What the heck kind of playground was this?! Surprisingly Georgia didn't make a big deal about no swings though, which frankly shocked us. The old Georgia probably would have tantrumed. It's not that she's not aware of things now; we just think and hope and pray it's just that she is so much more even-keeled since the seizures have stopped. As we have said so many times, we have our little girl back!

We swapped computers and I am having trouble uploading photos from our lovely day. Sorry - I'll try again tomorrow. We also want to ask for your prayers for a friend and neighbor of ours who also had brain surgery this week for an aneurysm. We're pulling for you Mickie! Now no more brain surgeries please everyone...enough's enough.

it's all about the play

OK, we know we said we'd try a mid-day post today...to no avail, sorry! It was a busy day again on 6 West: PT - OT - speech - repeat, as well as a family meeting with the care team. As everyone has seen in the videos and photos, Georgia has made such gains in her motor skills. Less tangible via media are her gains in language as well. She has been tasked with working on verbs and pragmatics (use of language in social interactions) and in true Georgia style, she is wowing her speech pathologist as well as her parents! She is like a little sponge soaking up so much new information and then showing us how she can process and use it. Today she "mailed" letters, "rolled" balls, "pulled" the NP, "shopped" for groceries and "picked" flowers.

The other excitement from the day was going outside on the PT patio to play on the climber. We apparently would have done this sooner, but the patio had to be cleaned first...a mama pigeon and her babies had taken residence on the patio (it does have a mountain view!) and left behind lots of territory markings. Eeewww. Georgia has the best therapists in the world - seeing how much she loved the climber and the inside swing, they arranged to do a PT/OT field trip to a real playground tomorrow. Rest up little one, we have big playing to do in the morning! Thank you Beth, Terry, Megan and Kara for making this happen.

As for the family meeting - it was filled with wonderful news! Everyone raved about our little Georgia...both in her cuteness as well as how incredibly well she is doing with her recovery and all of her therapies. Terry the PT said she has never had such a self-motivated, rarely frustrated kid. Of course we beemed with pride :) The other good news was a plan for discharge. While they commented that they would love to have her stay for as long as possible because she is such a good patient, all agreed that we would be able to go home next week, as early as Wednesday (3 weeks post-op - really, has it been that long!?). We are opting to stay until Friday though, not for the hospital food and (un)comfy accomodations, but to get the extra therapy days and allow us time to set up her outpatient plan. Home will never feel so good, though, that's for sure.

And our video/photo montage to end with....another great day Georgia!

What's wrong with this picture?

Picking flowers with Gram (was this legal??)

Catch me Daddy!

Outdoor sliding - watch out for pigeon poop!

Let's go shopping

From yesterday...tough hill repeats

short and sweet

So as not to disappoint any early AM bloggers, we wanted to be sure to get something posted tonight...but we gotta admit, there's not much in the tank this PM! Going to just say that Georgia had another stellar day and leave you with a few nice photos as well as a promise to write more mid-day tomorrow. zzzzzzzzzzzzzzzzz

Sisters watching Barney...yes, we have succumb to the big purple dinosaur!!


Rainbow over the hospital after the afternoon storm



Good inspiration for Team Lee and Team G - congrats again on your Ironman, Rich, and keep truckin' Georgia!

by popular demand...

...videos! Will keep this post short, to leave room for videos. Great day again today. More confidence with walking, and lots more walking overall. We're doing laps around the unit with all of the nurses, docs and CAs cheering her on. The other highlight of the day - Georgia being able to recall what she had for lunch. Again, this seems so simple, but she was never able to report back such prior events due to her seizures. These little victories really mean the world to us.

Clark and Gravina kids...here are your videos :)


Walking with some velocity

Fiercely independent (listen to the PT - Georgia is pushing her hand away)

Puzzle scavenger hunt

And a photo to end on - playing our new favorite toy with Gram. Thanks Schwager's!

ladies grab your kleenex

Emotional kickoff to the day today! We mentioned yesterday that Georgia seems so much more attentive and relaxed after surgery and part of us wonders if this is just some sort of side effect from the surgery. But we really hope and believe that it's more a testament to the actual need to do this surgery to stop the way-too-frequent seizures that she was having. Today was further proof.

Early this morning we had Georgia color a birthday card for her Papa Rick who's 49th birthday (wink, wink) is next week and who was leaving to go home to Rochester today. Georgia never used to like to color, but over the past few days she has actually been asking to color and has been making dots and lines and circles much to her parents' amazement. So she worked really hard on Papa's card, making a lovely collage of blue, brown and green lines and circles. A few Dora stickers even made it on to the card with pride. We brought the card with us to therapy for fear that Papa would come across it in her room and the surprise would be ruined. Much to our astonishment, when Papa arrived in the gym, Georgia looked at the card, looked at Papa and took the card over to him. This may sound like a simple thing to most parents of 3 year olds, but this was truly the first time Georgia seemed to really understand making something for someone else. Needless to say, we were all a bit teary and Georgia had a huge smile on her face. If only we had the iPhone camera going for this one!

Not to have the card-giving steal all the thunder, Georgia also climbed stairs, did walking laps around the unit, constructed a killer Potato Head and even rode a tricycle today. And where she was lacking in the eating category last week (given all the vomiting), she made up for today... you should have seen this child eat! We of course were nervously standing close-by with a basin but she kept it all down. Good girl!

Potato Head or Village Person?

G & her entourage. Where are the paparazzi?

Pooped (well, not literally, still working on that!)

Head out on the highway, looking for adventure...

Sunday is a fun day

So apparently they ease up on the rehab kiddos on Sundays. Only 1 PT/OT and 1 speech session today which left the rest of the day to play. Georgia had a great day again today, no puking and good eating. Gram and Pops returned from Colorado Springs, so all 4 grandparents were accounted for and came for a visit today. Thanks for all your help Gram, Pops, Nana and Papa! We had a visit from a band who was playing a free concernt at the hospital today - Angie Stevens and her band. Never heard of them, but they were good. They stopped by our room as well and sang a song for Georgia. Georgia was most impressed with the big bass, much like the one her cousin Ben plays in NYC. Our little vocalist also performed back for the band with her renditions of Twinkle, Twinkle and the ABCs. The band wanted to hire her on the spot of course and even gave her a shout out during the concert outside!

More progress today - Georgia stood on her own, unassisted during therapy. Of course the nervous Mom and physical therapist were right behind her. We had much more walking, including some outside and in our room, out of the comfort of a PT session. She was even picking up that left knee pretty well, almost in a march. She also continues to impress us with how much attention she can now give to tasks/play/conversations. This has perhaps been the most notable improvement to us. It's like all of the static and chatter in her little brain has been turned off and she can now concentrate on just being a 3 year old. Seeing this makes all of those months of sweating and crying over the decision to do this surgery totally worth it. Keep it up little one!

Of course some photos and video to end on :)

Not sure if Georgia was mesmerized by the bass or the lady's tatts?

And the band played...

Standing tall...and solo!

These sneaks are made for walkin'

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)...