Save The Date!

To save money, we only mailed these postcards to our friends and family who are local; however, this invitation is for anyone and everyone who is able to come send Brooklyn off! No RSVP needed. The more the merrier!

She has less than 6 weeks to go!!

Stay Tuned!! Life Updates Coming!!!

Wow! It's been a hot minute since I've posted anything. After Brooklyn's surgeries I just didn't feel like there was much going on. It was kind of a nice little calm there for a while. But now we have something big going on... Brooklyn is going to Ireland!! She has applied and was accepted to be an exchange student with AFS (American Field Service) for the class of 2025-2026. She will leave the end of August and return home in June. While we know we will miss her more than we can express we are just as excited for her and this amazing adventure she's about to embark on! 

So stay tuned! More info to come. :)  If you're new here...WELCOME!! We used this blog to keep everyone updated on our surgery journey many eons ago, or so it feels like! There is a "follow" button at the very bottom of this blog. Click on that and you'll get an email notification every time I make a new post, which, let's be real...won't be too often. But I'd love to keep you all updated on how she's doing!!

Here are the links in the letter:

Brooklyn's Instagram: https://www.instagram.com/brooklyn_marie_2010/

AFS Ireland Info Page: https://www.afsusa.org/programs/ireland-high-school/

I Have an Awesome Kid!

Wow...what an awesome couple of days we've had!!! Yesterday (Wednesday) we decided to not drive anywhere...to just walk around & see what we could see......for free!! :)  I had already bought a Groupon for the Willis Tower several weeks ago & since yesterday was super sunny (even though it was super chilly) we decided to go there since we'd have a good view. On a map, it looked really far. But I had my app figure out how long it'd take to walk & it said only 30 mins! It was 1.5 miles from the Ronald McDonald House. So I was super stoked to be able to leave our car in the garage, not worry about driving anywhere, & definitely not worry about parking! So we got loaded up & were on our way. It took us about 45 mins to walk there w/ all the red lights & people walking about. But we had all day so I definitely wasn't in a hurry!

 

Brooke taking in the view!

It was chilly outside, but was so beautiful!

So just in relation... The RMH is about 2 blocks from the John Hancock building, which is the black one at the very top of the picture. That's where we walked from. Total all day was about 3.5 miles! I'm super glad I have an awesome stroller!!!

At first she didn't want her picture taken. Then she said the reason was b/c she missed daddy. So after calling dad, she was ready for the pictures!

The SkyDeck!!!!! Holy cow I didn't think I was afraid of heights at all...& then I stepped on the SkyDeck. Yikes! They keep that glass super clean, too, so you can see everything below you. It was quite awesome!

When we were done at the SkyDeck we were pretty hungry. We grabbed Cali a cute little Chicago book at the gift shop & the only thing Brooke wanted was a hot dog. She'd actually said as we were walking to the tower that she wanted a hot dog. Chicago --- hot dog --- You'd THINK that'd be easy to find. HA!!! I must have been walking on the wrong streets, or looking in the wrong places, cause I couldn't find hot dogs anywhere. I took some snacks, thank goodness, that she munched on until we could find something. So I was super stoked when, right next to the gift shop, was a Nathan's Hot Dog place. We grabbed lunch, sat down for a bit, then got her medicine & were on our way again...

From the Willis Tower we headed straight east to Millennium Park. We'd already been there before, but hey, why not again?!! There's actually a picture of Cloud Gate in our RMH room, so I thought I'd take Brooke to see the real thing!

Cloud Gate

From Millennium Park we headed back to the RMH b/c our friends from IA came in to town for surgery today. We were meeting up with them for dinner. We took a different way back to the house...State Street (which I'd wanted to walk down b/c of all the cool shops.) We stopped in Target on State St (which was super impressive), grabbed Cali a few souvenirs from the dollar bins :) as well as a couple other necessities, then kept walking. And we ran into this....

 ...which I was super excited for!!

When we got back to the house we met up with Krystal Phillipson, her son Brayden, & her mom. Brayden had surgery this AM w/ Dr. Bauer. Here's the 4 of us in front of Brooklyn's favorite area...the doors at the RMH.

After dinner we ran into some super heroes at the RMH!! The lady from the Incredibles as well as Captain America & some other lady superhero that I don't know (haha surprise surprise) were there handing out hats & taking pictures with some kids. It was SO cute!

Brooke loved her hat (even though it was quite challenging getting it on & off!!)

After the ice cream social we ran into some other nevus families so we just had to get a picture!! The little boy on the far left is Jace from FL, then Brayden, Brooklyn, & Michael from Russia! (Jace comes every 6 months & Michael has been here since August.)

I just LOVE that every single night is something fun for the kids to do. Dinner is always at 6:30pm & then the activity is at 7:30pm. Last night's activity was pumpkin decorating!! It was SO cute! They had a boatload of pumpkins & TONS of foam stickers & paint. The kids could decorate it however they wanted...& Brooke had a ball!! Here's her pumpkin...

The funny thing...they let us keep it! So now we have a permanent fixture in our room. Brooke wanted it on her side table... So there sits her pumpkin, until we have to leave! I still haven't convinced her that she can't take it on the plane. She says she will carry it...

And then she went to sleep. She was given a little puffin puppet that helped keep the pressure off her head...little sweetheart.

This morning we woke up & the first thing Brooke did was go grab a drain, 2 alcohol wipes, & her medicine!!! I swear this kid!! ;)  She was SO scared of the drain at first, but now she's a pro at it. And her medicine...my gosh I'm glad there's a kids safety cap on it. She draws it up herself (I check it, of course), takes it, then draws up the second syringe (she gets 1 1/2 syringes), I check it again, & she takes it again. We do this 3 times a day & she's seriously awesome.

After we got dressed we decided to head to the Water Tower Place & walk around their mall. It's 7 stories & pretty quiet. The John Hancock building & WTP is only about 2-3 blocks from the house, so it's super quick to get to.

On our way (we took Michigan Ave) we stopped in the Disney Store & got her some little 'Jake & The Neverland Pirates' & 'Sophia The First' figurines that were on sale for $10...couldn't resist!!

After eating lunch at Water Tower Place & walking around in the mall & realized I hadn't had my coffee for the day. Yeah, ummm, seriously. So I snapped this quick picture in front of Ditka's, right next to Starbucks!!

American Girl. I'm glad my girls don't really understand HOW amazing those dolls are. Because seriously it'll be 3 Christmases from now before they get one! I did walk with Brooke through the American Girl store & we picked up a magazine. Coincidentally enough, about 3 days before we came to Chicago we actually got a smaller American Girl catalog in the mail. I'm not kidding... Cali & Brooke would sit on the couch together & go through that magazine every single day. Brooke wanted to bring it with us!!! So she spent a couple blocks looking at HER very own personal American Girl catalog!

Dinner tonight was from The Lurie Foundation & was some pretty good Chicken Pot Pie. And leave it to my daughter to surprise me yet again when she had about 5-6 drink choices & she picked water... Yessssss!!!!!!

Tonight's activity was cupcake decorating by Swirl Cupcake. It was so cute. The owner had some big vanilla & chocolate cupcakes that only had frosting on them. Then she had some mini vanilla & chocolate ones that were already decorated. The kids could eat their small cupcake while they decorated their big one. It was so adorable watching them use every single color & every single topping. Brooke LOVED it!

She was in awe of the lady!

I just love this one...

Eating her big masterpiece

After the cupcake decorating she was able to decorate a princess crown, which she loved, but it was pretty hard getting it on her head!

 

We had an awesome couple of days. I've had SO much fun with this adorable little girl that I have. I have just loved watching her in awe of everything she sees. She's growing up so fast & I'm truly treasuring every moment I have with her!

A New Dressing & New Friends

Just cause last night she was sleeping so peaceful... 

It did take her quite a while to actually lay her head down on her pillow, but she eventually did it. The changing of the drain was even worse, but we got that done too. Sweet girl...

So today we went to see Mim & Susan at Dr. Bauer's office to get Brooke's dressing changed. She was SO excited to see them...& was really an awesome girl during the whole thing. Afterwards she wouldn't let me take her picture...this was the best I got. Her incision is where the white bandage is. And the bubble is just above it in the picture. You can see it bulging a little. Dr. Bauer put 35 cc's in it during surgery.

She is taking her antibiotics like a champ. She actually LOVES the stuff. Thanks to my trusty Medium Thermal Zipper Pouch* we carried her antibiotics around all day & it was still cold this evening when we got back.

After we were done seeing Mim & Susan, we went to the Field Museum. We met an awesome family, the Roth's, during the Nevus Outreach Conference in Dallas in July & they are here with their 7-month-old daughter, Lily. Lily just had 4 expanders placed by Dr. Bauer last week: 2 in her scalp & 2 in her back. She's seriously THE cutest little thing ever**...& Brooklyn just ADORED her today!!!

Brooklyn & Lily

The Vance's & Roth's

After the Field Museum Brooklyn & I had a super short drive "home". I had a feeling Brooke would fall asleep in the car...& fall asleep she did!!! So I decided to drive around the few blocks directly by the Ronald McDonald house, to do more exploring & see what was all around me.

Holy cow...let's just say...I've been missing out!!!!! I mean, yeah, the RMH is inconvenient with it's parking & the fact that there's no food or TV's in the rooms. However, you're RIGHT. SMACK. DAB. in the middle of downtown! You're seriously 4 blocks from Navy Pier. There's like 9000 food options, which for me is wonderful. And the shops are to die for. I'm not kidding...anything you could want is with in walking distance! I was pleasantly surprised when I found a PF Changs just about 3 blocks away, so we parked the car & walked, got take-out, & went back to the house. We ate in the dining room & then came & put our stuff in our room, then went & checked out the roof. On the 16th floor (well ok it's the 15th floor cause there is no 13th floor) is a reflection garden on one side & a patio on the other. The reflection garden has a few places to sit, TONS of flowers & bushes, pathways, & is generally just really nice & peaceful. The patio on the opposite side has a hopscotch, slide, tic-tac-toe, grill for BBQ's, & a telescope. It's all pretty cool. :)

When we were done looking around the roof we went back down to the 4th floor to Arts & Crafts time. There were some volunteers that came in to help kids make crafts. They got to make little Halloween masks & then do some sand art. Brooke LOVED it...& it was a nice thing to have available!!

And now...my little bubble girl is fast asleep, after she got some bright pink nail polish & a caramel apple, of course. :)


*To snag up your own Medium Thermal Zipper Pouch, visit: https://www.mythirtyone.com/shop/productdetail.aspx?prod=4363
**This is just Lily's first surgery. She will need several rounds like Brooklyn did, so obviously her parents are fundraising like crazy. To check out how adorable Lily is & to visit the Roth's site please click on: https://www.crowdrise.com/TeamLily/fundraiser/jrroth

"Cali, I have a bubble & a port"

The title of this post fits perfectly. Tonight, while talking to her big sister, she said that same exact sentence about 47 times. Ok exaggeration??? Slightly. Maybe it was more like 12. But it seemed like 47.

Rewind about 14 hours.....

First off, why have another round? Well let me show a couple pictures that I took last night...of one last time looking like this. She will NEVER look like this again, so of course, I took pictures.

Dr. Bauer said he could easily lower that right side of her forehead by doing another round. He also said he could get rid of those zig-zaggy scars at the top of her head.

 

So lo & behold...what did Brooke & I do this morning?? We slept through my alarm. If that surprises you, we should be better friends! ;)  Anyways, some advise from a couple friends that have done the surgery from Ronald McDonald House thing before...we needed to leave like 2 hrs before we were supposed to be at the hospital. We needed to be there at 9:45am for an 11:10am surgery. That means we should have left at 7:45am. I set my alarm for 6:45am & 7am. We woke up at 7:18am. So! Luckily we both picked out our clothes last night so all we had to do was get up, throw our clothes on, brush our hair & teeth, & be out the door. We walked out the front doors at 7:38am & headed the 5'ish Chicago blocks to our car. We validated our parking, spiraled out of the parking garage, & followed my phone's GPS to the hospital...all by 8am! I did find it quite different that it had me taking side streets the whole way there. Didn't bother me any b/c Dustin & I have driven these side streets numerous times & LOVE the drive, but I'd have figured it would have been longer. It wasn't though, cause we got to Highland Park at 9am! We stopped at Starbucks & then checked in at the hospital 15 mins early...at 9:30am!

 

Since Brooklyn is a year and a half older now, I did explain a LOT to her about the surgery. Thank goodness we'd done this 6 times before, b/c I knew exactly what to expect. Bless her little heart, she asked me to explain it all about 4 times before we actually got to the hospital.

With our cape on!!

Reading books w/ our cape on...with Lamby

Coloring our new coloring book given to us by the hospital.

Waiting at the door for a "nice nurse" (as she called them) to come in so she could give her a picture that she colored for them. :)  They hung it in the nurses station, which Brooke loved! She's so stinkin' cute in her gown!! :)

 

They took her vitals when we got there & b/c she was in her 1-piece PJ's, her temp was 100.7!!! Uhhhhhh, WHAT?! Immediately after that it was 99.8...which they still said was too high. So like a super great actress would do, I totally brushed it off, & changed her into her gown! LOL That temp dropped down to 98.9 fairly quick! :)  Thank goodness!

 

Finally at around 11:15am they came with her pre-surgery "happy medicine". Unfortunately, the poor girl HATED it. Some went down her front, some went on the towel, even LESS stayed in her mouth. I tried everything until the nurse & I had to hold her down to give it to her. :(  She's my awesome medicine-taker...except for that "yucky stuff".

 

They let me stay sitting on her bed w/ her while they wheeled us down to the pre-surgical waiting area. We weren't there very long when Dr. Bauer came in & said he was just going to be doing 1 expander. :)  He said he was thinking about it & decided that just 1 expander on the right side would be good enough, since we're just lowering that one side. He said he'd do the regular 250cc expander & we'll just make it a good size. Then the anesthesiologist & CRNA student came & talked to us for a few mins. And then just like that, they were all ready for her! And, of course, b/c I was there all alone, I didn't have anyone to put their arm around me, so I just let it go! ;)  I waited for them to wheel her around the corner first though. It was such a sight to see...your little girl, looking ever-so-little in that huge bed, being wheeled to the OR, & just sitting there w/ a smile on her face, but you can completely tell that she didn't know what was happening. I could tell that, if she wasn't high from the drugs already, that she would have hopped out of that bed & into my arms saying "Mommy will you come with me?"

 

But she didn't. And she was fine as they wheeled her back. After they turned the corner & I knew I was in the clear...there it came. I couldn't stop. I was all alone. What was I going to do now?! So I walked all the way back up the hall, into the waiting room, & straight over to a corner chair away from other people. Now, I wasn't sobbing...people didn't come over to me to make sure I was ok...it's not like I was uncontrollable. But this surgery was different. It definitely doesn't get any easier. I think, in all actuality, it gets harder as they get older. Before, when she was so young, she didn't get it so she just went with the flow. Now, though, I had to explain it all to her & yet she was still so confused. Thank the Lord she didn't freak out when they started taking her or I'd have fell to my knees...

 

So there I sit, by myself, on my 33rd birthday, in the waiting room at the Highland Park Hospital Ambulatory Surgery Waiting Room when a man comes in & asks "Is there a Merilee Vance here?" He handed me a small box & walked away...

I have no clue how she did it... But inside the card it said "Love Mom"

I opened the box & this was inside.

I was an only child who lived w/ my mom & grandparents growing up. Of course in my family my birthday was bigger than Christmas. I'm not kidding. I've NEVER gone to school on my birthday & I've always taken a vacation day from work (except for ONE time). So my birthday has always been HUGE. I got quite a big present for this birthday...(my iPhone 6 PLUS will be shipped to me after I get home from this trip) but I didn't think I'd have one thing to open this year...& then I get this box. It meant so much to me that literally seconds after I stopped crying, I got the box & started up again!!! Thanks so much, mom! :o)

So after about 50 mins, Dr. Bauer came in & said that he did the 1 expander & that she did great. :) It seemed to take a while, but eventually I was able to go back & see her. She's never had a secondary airway in when I've seen her before, so when I walked around the curtain & saw her w/ one in I gasped. I'm a nurse, yes, but when it comes to my daughter, I'm a mom! I kind of had an internal freak-out moment for a second, but then was fine when I watched her monitor & realized everything was just fine. She was sleeping so soundly. And she had her regular head dressing on.

About 1/2 hr'ish later, we removed the airway & woke her up. The little trooper woke up SO great. I was a little nervous at how she'd do being almost 2 yrs older but she, again, amazed me! She looked at me & then sat right up!!! She was like...Hey mom! LOL  Her poor voice was scratchy & she was coughing, but other than that, it was just like she'd taken a really long nap.

Our wonderful nurse, Okhee, who we'd had almost every other time, moved Brooke over a little bit & let me sit in the bed w/ her then snapped this picture:

She was given a purple popcicle...& she ate them both!

 

After about 1/2 hr Okhee got the portable DVD player for her to watch. She only got to watch about 1/2 of it before a room was ready for us. She wheeled us down, again, while we both got to sit side by side. :o)

After about an hour or so of cartoons, someone decided she wanted to have fun...

And by about 3:30pm...my little Brookie was back.

(She looked so tiny in that big bed!!)

Finally at around 5pm she got her clothes back on & decided she was ready to boogie. She went potty, started walking completely on her own, & then started singing "The Ants Go Marching" while doing a *careful* little dance.

I swear on everything I own...the Dodger's part in this was completely her idea!

Our nurse must have been busy b/c it took FOREVER to get out of there! She was all dressed & ready to go but we ended up waiting around 1 1/2 to 2 hrs. :(

Finally at about 5pm we got to leave...can you tell that someone was happy?!

She didn't want her picture taken while we were waiting at Walgreens to pick up her scripts.

We drove back to the parking garage (after a LONG hour car ride), got in the stroller, & walked the 5 blocks to the RMH. It was dark, but it was only about 8pm. We first stopped at the 7-Eleven on the corner cause I promised Brooklyn some M&M's (& I found some little mini bottles of Moscato that literally fell into my hand). Then we stopped at the Burger Bistro, which is an upscale burger joint kiddy-corner from the RMH. Holy cow this place was amazing! It smelled divine & holy cow the menu was amazing. TONS of different kinds of meat...which all looked so great! I ended up getting the BBQ burger, which had brisket on top of a patty, doused in BBQ sauce & some cheddar. It was so wonderful!!!!

On our way back up to our room we had to stop & turn the wheel a few times. This little contraption is one of Brooke's favorites. She likes to turn it & watch it go around & around...

 

And with that...we came up to our room, changed her drain, & attempted to lay down. :(  BUT...she wasn't having that at all! It hurt too bad, and of course she hates the taste of the Tylenol w/ Codeine. So some regular Tylenol sufficed & eventually she laid down. She's sound asleep right now & I'm not...far.....behind.........her..................