Sunday, January 30, 2011

A Surprising First Fill!!!

And finally....we get to do a fill at home! It was nice not being on hold anymore. We kind of waited till last minute to start the fill last night. We should have done it after Dustin got off work, but once he got home & we ate dinner, & then relaxed....the night was almost over before we knew it.
I'll describe a "typical" fill first...so that it won't be a foreign language when I talk about them.

First, I get out the Emla cream. This is a numbing cream that is put on Brooklyn's ports. This stays on for an hour in order to numb the area so that she doesn't feel the needle go in her skin. Once I gob on the cream I put a piece of saran wrap over it to keep it in place. Then the same dressing-type stuff (that she had over her head after surgery) goes on, around her head, to keep things in place.

While we're waiting for the hour to go by I get the supplies ready. There is a 30 mL syringe (with no needle), a swab to cleanse the area, the needle (which is very small), and the bag of saline. I fill the syringe with 30 mL's of saline & attach the needle...twice, get the air out of each syringe, & get 2 gauze pads.

Once the hour has gone by Dustin will hold Brooklyn & keep her attention. I take the saran wrap off, clean off the cream, & wipe both the ports with an alcohol swab. I decide which expander I want to fill first, then I take the antiseptic swab & clean off the port very well. Then I insert the needle in the center of the port until it hits the back of the port. I can now let go of the port & leave the needle in, but this is where Dustin needs to make sure that she doesn't move all that much. We have a little bit of tubing we can work with, but if she moves too much it'll jerk the needle right out of the port.

Once the needle is in I slowly inject the saline. While injecting the saline I make sure to keep an eye on the expander & on Brooklyn herself. If Brooklyn is doing ok, I keep going. If the expander doesn't get hard, I keep going. If the blood flow to the skin is good, I keep going. But as soon as one of those 3 criteria aren't met, I stop. Then I take the needle out & Dustin holds a gauze pad on the area to stop any slight bleeding. Then I do it all over again with the other port.

A day or so before our first home expansion.
So!!! Now that I've explained a typical fill...

We started a little too late last night....or so we thought. We put the cream on her at 8:15pm. She started getting a little cranky so Dustin sat with her in the rocking chair & gave her a bottle....and she proceeded to fall asleep about 10 mins later. He said to me at about 8:45pm, "I wish we could just do it now while she's asleep." I then said to him that there's no way she'll stay asleep while we're doing it...that she'll wake up as soon as I start.

We still, though, decided at 9:15pm to do the fill in the living room instead of the kitchen where I had everything set up. So I brought all the stuff in the living room & Dustin rolled her over so I could see the ports. Still asleep. I took the saran wrap off & cleaned the ports with the alcohol swab. Still asleep. I decided to do the scalp expander first since it was very easy to see so I cleaned the swab & put the needle in. Still asleep!!! That expander had 40 mL's in it to start off with. I was able to get 15 in...so now there's 55 mL's. Still asleep.

Then we turned her a tiny bit & I did it all over again on the other side. Still asleep. The forehead expander had 38 mL's in & I got 20...so now there's 58 mL's in that one. And yes folks....STILL ASLEEP! I think it's the last time that will happen, but hey...maybe we'll wait till she falls asleep from now on!!!

Here she is afterwards:

Forehead expander with a total of 58cc's in.

Both expanders
And now...provided she's well...we'll do this all over again next Saturday.

Saturday, January 29, 2011

Fundraiser!!!...& a little update...Oh...& good news!!

A great person here in Lewistown is doing a fundraiser for us!! 25% of the proceedes go to Brooklyn & her surgery fund!! The link is: http://www.tastefullysimple.com/web/sruckman  Click on that, shop until your heart's content, then when you're checking out you search for my fundraiser by typing in my name. It's SUPER easy & the site is just great. :)  If you have any questions, though, just let me know! Thanks to everyone for the support. This fundraiser is going until 2/28/11...just in time for our 2nd trip to Chicago.

And a little update on us...Haha...I have nothing to say! LOL That's just cause we haven't done anything. Dustin started back to work, & is glad to be back. He's not enjoying all the snow & cold weather, but he's glad to be back making money. I start back to work on Monday & let me tell you...I'm really looking forward to it. I need some adult interaction! I have enjoyed being home this whole week with the girls, but I need to get back to work. I need to have a reason to get up in the morning, get dressed, brush my teeth, & do something productive!!! I only work part-time, which works great for our family. When I go back to work my mom will be coming over here to watch the girls to lessen the chances that Brooklyn will get sick.

I'm basically just excited to get out of the house. We got home last Thursday & I've only been out of the house TWICE since then...that's TWICE in over a week! I took Cali to church last Sunday, had a Young Family Group get-together Wednesday night...and have been in the house ever since then... People...that's a week as of tomorrow! What the heck are we going to do though? There's no mall to walk around in, no parks for them to play at (that aren't covered in snow), nowhere we can just walk around. So we just sit at home. This is definitely a time when I wish we lived in a big city again.

And now for the good news: Right before I started typing this I had sent a quick update email to our surgeon. I sent it at 11:45am and at 11:45am he wrote me back!! Yeah...no kidding! I told him that Brooklyn is well, her rash is gone, & I'd feel comfortable (health-wise) to do it. He wrote back & said to "Go for it!" So we'll be doing our first fill tonight after Dustin gets home! Yay!!!! I feel like we're getting back on track...finally! I'll post again tonight or tomorrow to let everyone know how it went!! Here's to hoping for a good experience!!!!

Monday, January 24, 2011

Surgery #2 = 2 months from today..... & a big weight lifted

Surgery #2 is 2 weeks from today...provided we are able to get on (& stay on) track with these fills. We still haven't been able to do the fill here at home because Brooklyn is still just slightly sick. She feels fine...just slightly cranky compared to normal. The only "extra" thing is that she's been grabbing at the back of her neck...so much, infact that it's been causing a rash there. You can tell it really itches her & I have no idea why or how. I just feel so bad for her.

We woke up yesterday AM to this:


UGH! The picture is so "hazy" looking cause it was majorly blizzarding...HUGE FAT snowflakes. Yuck!

Since being home we've been pretty lazy, until today that is. We had friends of ours over Sat & Sun evenings. They have a daughter Cali's age so Cali just had a BALL playing with her. Here they are watching Mickey:


Also this weekend Daddy & Cali had a special "bonding" time:

Yes folks...he's painting her nails! :o)

Other than that, I started unpacking a little. I have found myself keeping the house just as clean & meticulous as our hotel room in Chicago, which is actually good cause we need this place as clean as possible for Brooklyn.

I had to make a sad phone call today. I had to call Cali's day care today & tell them that she can't go back until the end of March. I was so sad to do that...that I put it off until late afternoon. Cali only went 2 days a week, but oh my gosh did she ever LOVE it!!! She loved playing with her friends, loved her teachers, learned so much, & just flat out loved going. She hasn't really said anything about it, & I'm certainly not telling her...unless she asks. Today though we did happen to drive by her day care & she saw all the toys & yelled "Mom! Toys! Me...play...toys!!!" UGH! This is a part that I didn't think would happen. But she'll be able to go back once Dustin, Brooklyn, & I leave for Chicago in March. (She's staying home with my parents.)

Also today, I gave myself a little break. As many of you knew I'm going back to school for my Bachelor's in Nursing. The nursing program that I went to here in Lewistown is a 2-year Associate's program. You can go back for your Bachelor's if you want, & it's all online, which is super nice. It's a 4 semester program that I started Fall 2009. I was told the whole time by the BSN advisor that I'd be done after just the 4 semesters (Fall 2009, Spring, Summer, & Fall 2010). Well imagine my surprise when I was told that I needed FOUR more classes! UGH...needless to say, I was pretty upset that I was pretty much lied to this whole time. Long story short, after the Lewistown representative (who is fantastic!!) & the Dean of Nursing got together they figured out I just needed ONE more class, in the Cultural Diversity category. So I found a class that (of course) has absolutely NOTHING to do with nursing called Native Cultures of North America --- yeah, how fun & exciting right --- so I signed up for it for this semester. Well....of course I don't have to explain how much I do NOT have the time for a 15 week class. It's just one more thing on my plate that I just don't want there! Plus, with it not having anything to do with nursing, I just don't care!!! I wrote the professor & he said that he's teaching this class again with the same books for the 2nd summer session (a V-E-R-Y intense 3 1/2 week course that is literally one semester jammed into just 3 1/2 weeks) which starts July 11th. It'll get over the week that we're going to Chicago for Brooklyn's 3rd surgery. So it may be a bit busy with me packing for the trip, but I would much rather have a super busy 3 1/2 weeks instead of it dragging out & being busy & difficult for 15 weeks!!! Once I got off the phone today it was THE biggest weight lifted off my chest. Ahhhhh, one thing helping me breathe a bit better today...

Other than that nothing is going on here. Just waiting for Brooke to get better so we can resume the filling. Will write more when we have more exciting things going on!!

Saturday, January 22, 2011

Setback #1 - Expander Fills Postponned

I'm calling this post Setback #1 because that's just where we're at. UGH!!! I've mentioned numerous times about the importance of Brooklyn staying healthy & the reasons why. She needs to stay well so that we can do the fills.

Brooklyn sick = NO expansion!

NO expansion = Severe delays in getting to the 250-300mL's that we need in each expander

Severe delays = postponning the next surgery.

This is NOT what we need to do. It is so important to keep her healthy so we can continue down the right path for this whole process. With that said, it IS ironic, I admit, that Dustin, Cali, & I are still getting over our colds. But what can you do? Unfortunately, as of yesterday, Brooklyn is now sick too. :(

I wrote her surgeon & asked "How 'sick' is too sick to do fills?" He said that even with the green goopy nose, we can't do it. Even though she's totally fine - feels fine, acts fine, no fever, no other symptoms, no nothing, JUST the icky nose...we STILL can't do the fills for at least a few days to a week, he said.


Happy girl - even with an icky nose.
This picture shows her expanders & ports really well. You can see the forehead expander in her left forehead. The right back scalp is where the other one is. The port for the forehead expander is just right at her right temple. The port for the scalp expander is just above that in the picture (which is actually under her nevus). You can see the bumps for each of those. Those are where I put the needle to fill up the expanders.

SO! This emphasizes the importance of her staying well. Even a small icky nose is keeping us from doing a fill. This explains why she needs to stay well. Please, if you haven't already, re-read the post "A SPECIAL REQUEST" that I wrote a few days ago.

I really appreciate everyone's cooperation with this. And believe me, I'm counting down the days to when I can stop being so germ-o-phobic & get back to a "normal" life....until August anyways!

Friday, January 21, 2011

Toto...we're not in Chicago anymore...

First off, I would appreciate it if everyone could re-read "A SPECIAL REQUEST" blog post that was written a few days ago. It's below....  Thanks!!

Ok...so we're home. I guess I'm just not as excited about it as everyone else is. It seems that everyone else is just so excited to get home after surgery. Now, while I was excited to sleep in my own bed, & excited for Cali to be home, I just didn't feel the whole "I-can't-wait-to-get-home" vibe that everyone else did. Could be that I'm not the biggest fan of where we live. Could be that having a "forced vacation" was actually kind of nice. Could be that being home means filling Brooklyn's 2 expanders & I'm SOOO not looking forward to them getting bigger & bigger & bigger...which means more stares. Could be that I'm just not up to being so anal about people being sick & getting her sick, which I hate. Could be that I just don't want to act like a germ-o-phobe, which is what we're forced to do. Could be that while we were gone life was kind of on hold, but now it has to resume. Could be that now that she has expanders in her head it's inevitable that she's going to have a 2nd surgery. Could be that there's just a slight twinge of regret still going on in my head. Could be ALL of these reasons all wrapped up into one. All I know is that there's something going on & I wasn't looking forward to being home.

This all was thrown into my face yesterday when we did finally step foot into our house, after being gone for 3 weeks to the day. I just got this overwhelming feeling of sadness....well maybe not sadness...but just a feeling of being VERY overwhelmed. I have SO much to do!!! Plus, the fact that I just don't want to hurt anyone's feelings by constantly asking if they're sick or have been around anyone that's sick. UGH!

Well I'll spare you anymore "diary sessions" & share a picture of Cali yesterday in the car:
She was so excited to get home she just couldn't stand it anymore!

We got up, ran to McDonalds for our coffee, oatmeal, & Cali's apples...only to get on the road & find out that they gave both Dustin & I a large coffee (when we'd ordered Medium's) but only put a "Medium" size amount of flavoring in it. Simply stated: they were terrible. Then they forgot my oatmeal. But thankfully they did give us 2 orders of Cali's apples instead of just 1 - so she was quite happy. She was eating apples in the picture above.

Dustin drove all day. We left Sheridan around 9am & got to Billings around 10:45am. Cali has been saying "Dawn" for the past 3 days so we just had to run by WalMart to see her Auntie Dawn. She was excited to see her in person finally!!! We got some carpet shampoo & fruit snacks & then went by Sears.

Back in November I wrote a few posts on our horrible picture experience at Sears. I'd written how much money it cost me, just to have bad pictures taken. So I'd cancelled the pictures & gotten my money back....remember??? Well imagine my surprise when I got a call from Sears in Billings saying that they had our pictures there & we needed to pick them up "because they've been here since the end of November & you really need to come get them". Hahaha....uhhhh ok then. Well just a few days ago I got another quite rude call...basically saying that these were our Christmas pictures & they've been there since the end of November & we need to come get them by Feb 4 or they'll be "Destroyed". LOL So after WalMart we went right on over to Sears & got our pictures....FREE pictures, mind you! :o)

Then we grabbed Wendy's, got gas, & headed for home. I'd said to Dustin right after we got to Billings that it was pretty weird being there....& I could only imagine how weird it'd be being back at home. And boy was it ever weird driving back into town. We had to rush back for Cali's 4pm appt at our doctor, so we didn't drive around or anything...just drove into town, got to our house, ran in, looked through the mail for about 10 mins, changed diapers, & then just 1/2 hr after getting home Cali & I went to the doctor. Whew!!! I didn't have a second to call the doctor to see if anyone there was sick, or if any patients had come in sick, so Dustin stayed home with Brooklyn.

We got there a little early so that we could go down the hall & say hi to "Gammy" (Dustin's mom) & then ran in my work for a few minutes to say hi. Everyone is anxious to see Brookie. Then we went to the doctor & came home (after running by the pharmacy to get Brooklyn's numbing cream that Dr. Bauer's office called in for her).

Cali was soooo excited to be home. She was running around playing with every toy she could get her hands on....& screaming!!! Oma (my mom), Uncle Mike, & Uncle Curt came over & Cali was so excited to see them. Brooklyn was also excited to be home. She was crawling around all over the place getting into whatever she could get into. Then Dustin's parents came over to say hi. And Auntie Marji came over with cousins Kobe & Taylor. So Cali had a ball playing with everyone.


Brooklyn's happy to be home!
 It was an exhausting night...just cause we were so tired. We got dinner, & then everyone left & I went to bed at 8pm!! Unfortunately though, Brooklyn had another bad night. Every night since her surgery has been horrible. Last night though seemed even worse. She's just so restless...like she can't get comfortable. She'll wake up crying & crying. She tosses & turns like crazy also. We try feeding her, try comforting her, try giving her her paci, & try holding her. After about 1/2 hour each time she seems to settle down & sleep for about an hour. And then it all starts again. I wrote to everyone in the Nevus support group that we're in asking if anyone else has had this problem with their kids after having expanders inserted in their heads. I'm hoping that things will settle down now that we're home & getting back into a normal routine. Prayers & finger crossing would be appreciated!!! :o)

Today we're all attempting to get over our colds. Brooklyn is still on antibiotics, but we're still trying our best to not give this to her. Dustin is going to put up his makeshift "gate" on the stairs so she won't fall down them. We weren't going to put it up (& just teach her early) but with these expanders in, I don't want to risk that!! We're also going to borrow Dustin's mom's carpet shampooer & clean the carpet in the living room real good. And THEN, if we have enough time (& energy) we're going to change Cali's crib into a toddler bed. Brooklyn is now the proud owner of her brand new crib (thanks to Oma & Opa) so maybe we can even get that up too! :o)   Projects projects....

Wednesday, January 19, 2011

A SPECIAL REQUEST

I'M PUTTING THIS IN ALL CAPS FOR A REASON: BECAUSE IT'S THE MOST IMPORTANT BLOG POST I'LL WRITE.

I HAVE A SPECIAL REQUEST FOR ANYONE & EVERYONE WHO EITHER COMES OVER TO SEE BROOKLYN, OR WHO COMES IN CONTACT WITH HER IN THE PUBLIC.



AS YOU ALL KNOW BY NOW, BROOKLYN HAS 2 TISSUE EXPANDERS IN HER HEAD. THE BIGGEST THING WE HAVE TO WATCH FOR & TRY TO PREVENT IS INFECTION & ILLNESS.

INFECTION: IF HER EXPANDERS GET INFECTED SHE WILL BE PUT ON ANTIBIOTICS. IF THIS DOESN'T WORK THEN SHE WILL NEED EMERGENCY SURGERY TO REMOVE THE EXPANDERS. (YES, THIS IS NOT LIKELY, BUT IT'S SOMETHING THAT COULD HAPPEN.) IF THIS WERE TO HAPPEN IT WOULD MAKE 7 TRIPS TO CHICAGO, NOT THE ORIGINAL 5.

THERE IS A HIGH BLOOD SUPPLY TO THE SCALP SO THAT'S IN HER FAVOR, BUT WE'RE STILL DOING EVERYTHING WE CAN TO KEEP HER FROM GETTING INFECTED. IN FACT, SHE SHOULD HAVE BEEN OFF HER ANTIBIOTICS THE DAY THAT HER DRAINS WERE PULLED, BUT BECAUSE WE'RE ALL SICK THEY ARE KEEPING HER ON THEM UNTIL WE'RE ALL WELL AGAIN.


ILLNESS: IN ORDER FOR THE TISSUE EXPANSION PROCESS TO BE A SUCCESS, SHE NEEDS TO HAVE HER WEEKLY FILLS. IN ORDER FOR HER TO HAVE HER WEEKLY FILLS, SHE NEEDS TO BE PHYSICALLY WELL. IF DUSTIN OR I AM SICK, THAT'S OK, WE JUST WEAR A MASK. BUT IF BROOKLYN IS SICK WE CAN NOT DO ANY FILLING UNTIL SHE'S WELL AGAIN. THEREFORE IT IS IMPARITIVE THAT SHE STAY HEALTHY.


OUR REQUEST: WE ARE DOING EVERYTHING THAT WE CAN DO TO KEEP HER WELL. THIS MEANS THAT I'M GOING TO CHANGE OUT OF MY WORK CLOTHES AT WORK SO THAT I DON'T BRING HOME ANYTHING. THIS MEANS EXTRA VITAMINS, NOT SEEING PEOPLE THAT ARE SICK, & STRICT HAND WASHING, AMONG MANY OTHER THINGS.

WE ARE ASKING ANYONE THAT MAY COME INTO CONTACT WITH BROOKLYN TO PLEASE RESPECT THIS 11 WEEK PROCESS & DO THE SAME. PLEASE, IF YOU'VE BEEN AROUND SOMEONE WHO HAS BEEN SICK, WASH YOUR HANDS, CHANGE YOUR CLOTHES, OR DO WHATEVER IS NECESSARY TO NOT PASS THIS ON TO HER. IF YOU HAVE ANY SIGN OR SYMPTOM OF AN ILLNESS, PLEASE POSTPONNE YOUR VISIT. I'M NOT SAYING THIS TO TREAT ANYONE LIKE A LEPOR, WE JUST NEED TO BE SURE THAT SHE STAYS WELL. AND PLEASE DON'T TAKE OFFENSE IF I AM CONSTANTLY ASKING IF YOU'VE BEEN SICK OR HAVE BEEN AROUND ANYONE WHO HAS BEEN SICK. THIS IS THE HEIGHT OF COLD & FLU SEASON, THAT'S WHY I'M WRITING.


WE APPRECIATE YOUR WILLINGNESS TO HELP US KEEP HER WELL & UN-INFECTED! :o)

Our last night in a hotel (for 10 weeks...)

Well today we got up, got ready, & left. It definitely wasn't as early as I'd liked, which put me in an "off" mood. I don't want to say I was in a bad mood, cause I wasn't, I just wasn't my normal chipper self. Haha! We got gas, then went through McDonalds for coffee. Unfortunately though as I was starting to pour it into my super-great coffee mug that Dustin got me for Christmas, I noticed my leg getting hotter & hotter. The fantastic workers at McDonalds didn't put the lid on tight & I had 1/4 of my SUPER PIPING HOT coffee all over my lap! SOOOOO GREAT! So that put my "off" mood into a flat out bad mood! And of course, I only packed 1 pair of pants in our "travel bag" so I'm stuck with a huge coffee stain on my pants. (My regular suitcase is way packed in the car & not reachable.)

Cali had an "off" day today as well. She was just bossy (gee wonder where she gets that from???) and was indecisive. She would want one DVD, so I'd get that one & put it in, but then decided that wasn't what she REALLY wanted so I'd have to change DVD's. This went on for about 1/2 hr until I couldn't stand it anymore. But then she'd get mad that she didn't have anything to watch! Today was just No Win with her!

Brooklyn, on the other hand, was so great all day. She just had a couple crying spells, but that was just cause she was tired. Other than that, she was perfect. She slept a lot, which allowed me to do something I haven't done in FOR-EV-ER....read a book! :o)  It was so great that I even finished it. How wonderful that felt!!!

We stopped in Wall, SD for lunch - & again Cali was turning into a terror. She just wanted to run around Dairy Queen instead of sit & eat her food. But who can blame her?! We got back in the car & thankfully (for ALL of us) she was out within 1/2 hr.

We were going to stop in Gillette, WY tonight, but realized that we needed to "push it" & get as far as we could get. Cali started out with a rash right around the day that we left for Chicago (around 12/31/10). It's only gotten worse, & has now spread, so we decided that she needs to see the doctor. We'd gotten ahold of the doctor I work for a few days after we noticed it & she recommended Cortaid, which we've tried. But nothing is helping. Unfortunately our doctor doesn't work on Friday's, and we don't think this should wait until Monday, so we are now pushing it as hard as we can to get home tomorrow (Thursday). I called & got her in at 4pm so hopefully the roads will be good enough that we can make it. We just need to get up & get moving so that we can leave enough time to get there!

So we made it to Sheridan, WY. I started driving at Wall, SD & had super great roads until after we crossed into WY. Then they started having a little amount of snow, then more, then more. Then it was snowing so hard I had to slow down to just 40mph. Semi's were even passing me, which caused me to literally almost STOP because they blew so much snow on us that I couldn't see 2 feet in front of my face. It was horrible. What should have just taken us a short time, ended up adding about 50% more time to our trip. But thank the Lord we made it to Sheridan. We just have about 2 hrs to Billings & then about 2 hrs home (depending on the roads).

When we got to Sheridan we found a Holiday Inn. We are members of their Priority Club (Holiday Inn is affiliated with the hotel we were at for 2 1/2 weeks in Chicago - the Staybridge Suites) so we've been earning major points with them lately. I checked in, parked, & we got to our room. When I opened the curtains, imagine my surprise when I saw our car literally DIRECTLY out the window. Plus we're on the first floor. Dustin went out to get the suff so I, just on a whim, tried the window (totally not thinking that it'd open not more than a couple inches), & it opened all the way! So here's Dustin literally passing our stuff in through the window to our room!
Hahaha! I got such a kick out of this that I was too busy taking pictures rather than helping!!!! It was so great...totally the highlight of my day. :o)

So now...bed. Then we should be in Billings 2 hours after we leave here in the AM. Dustin's dad is supposed to be in Billings tomorrow so we're planning on seeing him & also Dustin's sister, Dawn, cause she's ALL that Cali has been talking about for 2 days now! Then we'll head home hopefully in time to get to Cali's appt at 4pm! Whew!!!!!

So next post....FROM HOME!

Tuesday, January 18, 2011

Burrrrr...from Sioux Falls, SD

Well for the first time in 2 1/2 weeks I'm writing NOT from Illinois. We got up this AM as soon as we could, got ready, packed up the car, & were on the road. Surprisingly, with all the stuff we had to pack up, we were on the road by 9:45am! I was impressed anyways!!!

Cali - sitting in the hall reading her book. She was ready to go already!!!!!!!
 Today was pretty uneventful, which is a good thing! I started out driving & made it to about 1/2 way through MN before Dustin took over. Then he drove us the rest of the way here.

The girls were pretty good, considering. We stopped somewhere in Wisconsin at a Burger King for lunch. Brooke had a pretty good time lounging around in her high chair:
We made it to Sioux Falls around 8:15pm. It was a long day, but it kind of went by fast, if that makes any sense. We were all sick (well except for Brooklyn thank goodness) so lots of Kleenex was moving throught the car.

It was about 22 degrees in Chicago when we left. And right now it's below zero....figures. :(

Bedtime now...  :o)  Let's hope tonight is even half as good as last night. Brooke decided that she didn't need to sleep at all last night, so she was tossing & turning...& insisted on sleeping ON me the entire night. So if we can get some sleep that'll be amazing. :)

Good night from South Dakota. Tomorrow...let's hope we're in WY!!

Monday, January 17, 2011

Our last Chicago post (well, for now anways)...and Brooke's 1st fill!

Wow, I can't believe how fast time has gone! Today we woke up so we could all go to the doctor's office for Brooklyn's very first fill. Unfortunately though, Dustin was sick! And Cali has had a fever off & on, but now she has a runny nose as well. So they stayed back while I took Brooklyn in to be expanded. It was unfortunate though cause neither of them got to say goodbye to the Melton's or the Moller's, both of which were also at the office.

The Melton's were there to have Josh checked out & to take him to the ENT. I haven't heard yet how that went, but will update when I hear.

The Moller's were there for Zac's first expansion too. They said it went great & they were alot better at it than they thought! We all said quick goodbye's so they could go to the airport & we could start fill #1.

We got the numbing cream on her ports & then had to wait an hour. So Brooklyn & I just hung out in the room & had a nice chat. ;o)

"I'm ready for my close-up, I mean my fill, Mr. Devill."  :o)
Mim, one of Dr. Bauer's nurses, came in & showed me how to do the fill. Then Susan, his other nurse, came in & pretended to be Dustin while Mim did the first fill & I did the second one. We got 8mL's in the forehead expander & 10mL's in the scalp one. We just took it easy today. I'll do this every week until I'm told otherwise. We can already see the expanders getting bigger, which is so weird to watch it grow infront of our eyes.

When we got back Brooklyn was sound asleep so I figured that was an opportune time to pack. Dustin tried the best he could to keep the girls away from me so I could pack. But it was still a challenge! It took me a good few hours. Dustin loaded the luggage bin on our car roof with stuff that we don't need (& that doesn't matter if it freezes) & then loaded the back of the car. So in the AM all we need to do is pack up the back seat & head out.

The people at this hotel have been very accommodating. They have let us keep our same rate for the next trip, so I went ahead & booked that for our March trip. I like this place. Plus, we signed up for their rewards points & she said that after this & the next trip we may be able to pay for the next 1-2 trips. So that's nice!

Well all we need to do tonight is pack up the computer, make dinner, & go to bed. It'll be an early night for us all since we're not feeling well --- well, except for Brooklyn, who is STILL not sick, which I can't believe! I'd rather be sick consistently than have her get sick even once. If she gets sick we have to postponne the fills. But if Dustin or I am sick then we just have to wear a mask.

So...so long from Chicago! My next post will be from another state...on our way home. (Which I still can't believe!!!) Right now though, I'm waiting to get out of here cause it's pretty lonely without our next door neighbors!

Sunday, January 16, 2011

What?! Last "free" day in Chicago???

I absolutely can NOT believe that today was our last "free" day in Chicago. Wow has it ever gone by fast. And I'm sure it's gone by even faster since I'm not looking forward to going home. Today was our last free day, tomorrow is our big long doctor's appt, & then bright & early Tues AM we're outta here. WOW!! Skip the saying "Time fly's when you're having fun"...replace it with "Time fly's when you're in Chicago for surgery!"

Today we got up, took our time getting ready, & then we were all going to go to the mall. But then Dustin offered to keep Brooklyn...which was just amazing cause I had a feeling that having both girls would have been a disaster. I'd done it before, but for some reason today I could just tell that "Cali" & "meltdown" were in the same sentence.

So Amie & I packed in the car with Cali, Zoie, & Zac & headed to the mall that's the closest to our hotel - the one we'd gone to a few times before. We got there & ate, & then went to the toys so the girls could run. Well poor Cali...I think she was just so overwhelmed at all the kids. Mind you, it's Sunday, so everyone & their child was there in the play area. "Busy" was an understatement. She just didn't know what to do with so many kids. So instead of playing on the toys INSIDE the play area she decided to stick close to mom & play on the 1 toy just as you enter the area. Here she is:

Instead of playing where all the screaming, pushy kids were she decided that she, again, wanted to go on all the automated toys (yes...the ones that suck every quarter from the depths of your purse). So we did that for a bit:


When we were done there we just walked around, until the girls saw the train & just HAD to ride it again. But that's ok cause the guy rememberd us from last week so he let me ride for free. Here's Zoie & Cali (and yes, Cali IS smiling for a picture, see for yourself!!!)


We had major meltdowns before & after the train so we figured it was definitely time to go get dinner & go back to the hotel. We thought we'd eat in the dining area of the hotel as one "last supper", because the Moller's go home tomorrow. :( 

All-in-all, even with the meltdowns...today was a good day. Yes, I'm still sick, but like yesterday, my symptoms are definitely lessened because of all the stuff I'm taking. I'm going to miss this. Miss the wandering aimlessly at the mall not buying a THING & having a friend to walk with. Miss eating a new place every night & trying all the Chicago food. And especially miss our great new friends...friends who totally know what we're going through. But the light at the end of the tunnel: we'll all be back at the end of March. Us - on the 24th & them on the 31st - so we may not overlap, but we're certainly going to try if we can!! And then we'll all be back in August, so that'll be super nice. :)

On another note - more prayers are needed for Josh. They are still here but are going home tomorrow. We did get to see them last night for a short while but couldn't see them today because Josh has developed another fever --- again. Prayers for the ENT that they're going to tomorrow to figure out what's going on with him. He just needs to get better so they can get on with this whole process!

Saturday, January 15, 2011

Sick in Chicago

Yes...that says Sick IN Chicago...not Sick OF Chicago. I started feeling like I was getting sick yesterday afternoon, but kept denying it...like I usually do. Unfortunately my body didn't like what my brain was saying, & I did end up getting sick. I've literally stuffed my body with pretty much all the medicine that I can, so my symptoms are definitely lessened, but it's still there, trying to make its way through. I'm stubborn though & am fighting it like crazy. Thank the Lord for husbands with medicine, OTC cold medicine, & me being a nurse! :o)

Brooklyn & Cali taking a bath. Don't worry America...Cali takes baths with a swim diaper on now...she's freaked out about pooping in the tub...
 So we really didn't do anything today. We got up & were going to go to a mall & walk around, but didn't end up doing that. Instead, we ate lunch at a mexican restaurant that the Melton's recommended to us (we went with the Mollers) & then came right back to the hotel. Cali & I took a nap & then when we got up the Melton's were here, next door with the Mollers checking out their room. They are scooping out places to stay the next times they're in town.

Don't bother me...I'm sleeping.
 We all hung out in the lobby area of the hotel. They actually have a little lounge area that we went to. Then the 3 guys went to a sports bar to watch tonights play-off game. Christine left with Josh around 8:30pm & that's actually right around the time that we noticed what time it was! We had no idea!!! So needless to say...we didn't get dinner. :(  But that's ok, we have plenty of popcorn to go around! :o)


Happy Brooklyn
 I was going to do one last load of laundry tonight when Dustin got home, but that's about an hour and a half task...& frankly, I just want to go to bed! So that'll wait till tomorrow. I can't believe that I'm actually talking about going home now. Believe it or not we just have 2 full days here. Tomorrow is our last "free" day, then Monday is our long appt where we learn how to do the fills, & then packing....and then Tuesday we leave. Wow it's gone fast.

Prayers are needed that no one gets sick...especially Brooklyn. If she's sick anytime during these next 11 weeks then we can't do any fills...at all. They can ONLY be done when she's well. So if she gets sick & we can't do the fills on Monday I don't know what will happen. Either we'll have to stay until she's better, or else hopefully they'll just show me how to do it & trust that I do it correctly since I'm a nurse. I guess we'll have to just wait till Monday & see. But just as I was typing that last sentence both my girls sneezed...how great! So prayers are needed to keep these little ladies healthy!!!

Friday, January 14, 2011

Exploring Chicago!!

What a great day we had today!! We decided to head to the SkyDeck today...& then do whatever else we thought would be fun. So we headed out (yes...in our CAR) at about 11am & headed for downtown Chicago. About 1/2 way there it was like a light bulb went off in my head...."Uhhhh we can't do the SkyDeck today! It's sooooo overcast outside & we wouldn't be able to see a thing!" So since it was getting close to lunch time we decided to go to the Hard Rock Cafe instead. Anyone that knows me knows that I love HRC. I go & get a t-shirt from every single one that I can find. So we couldn't pass it up. (It certainly didn't have to be this trip...could have been any of the other 4 trips here, but the opportune time came so we ran with it!!)

Our only dilemma was the parking in downtown Chicago. First off, there is a lot of places to park. But second off...it's soooo darn expensive! We toyed with the idea of taking the train again just cause we didn't want to go to point A & pay $20 to park. Then move to point B & pay $20 again to park. By the end of the day it could have been SOOO much, which we just can't afford.

So as we were driving around the block of HRC we noticed metered parking. We pulled into a space & Dustin got out to check it out. Thankfully a local was there & he got the "inside scoop" from them! LOL  Turns out you can pay as you go. So if you're only going to be in one spot for a short time then you can pay for that spceific amount of time. It ranges anywhere from 20 mins to 2 hrs. So Dustin put in 2 hrs, put the ticket stub on the dash, & we went on our way.

After lunch we thought that maybe we could do the SkyDeck if it cleared up...but it hadn't. So we decided that the SkyDeck may have to wait until the next trip. :(  Instead, we decided to go to Navy Pier. We knew nothing about the place, but thought we'd just go & see what it was. Well about 2 blocks in to the trip, Cali was asleep. We knew better than to wake her, so we just decided to drive around downtown Chicago & see what we could see.

We still drove to Navy Pier but there was hardly anyone around, plus all the parking was for cars about 6'8"...& we're 7'. So we thought that this was definitely a summer attraction. So we continued driving. We found Michigan Ave (the Magnificent Mile) so we drove up & back down that. Then we drove on Lake Shore drive (right along Lake Michigan). We saw an ice skating rink, lots of shops, TONS of Starbucks, & lots of little places that looked like they'd be great to eat at!

After an hour Cali woke up so we went back to Navy Pier one more time...to see if maybe she'd like to go to the Children's Museum or see the IMAX show. We found a parking attendant who directed us to the very last parking garage which was like 7'8". By the way...all these parking garages were amazing. They were all heated with garage-like doors that open & close for each car. They were NOT busy at all, which was nice, cause we got to park right by the door.

Remember, we knew NOTHING about this place. So we got out of the car, unloaded the stroller, & bundled everyone up cause we knew how cold it was outside. LOL Imagine our surprise when we walked through the doors & the entire thing was inside!!!!! YESSSSSSSSSS!!!!! Oh we were soooooooooo happy. So we took all our jackets off & just started walking. We were down at the far end of the pier, so we had the entire pier to walk. We just broused shops, eating places, kiosks, etc. It was such a great time. We found out that the Children's Museum is free on Thursdays, so that'll wait till we're here next time with Cali. I also looked into the IMAX which I thought Cali would love but they were only playing Tron...euw. So that was a no-go too.

We found a little kiosk in the middle of the asile that sold hand-knitted hats. They were just adorable. Pretty much the ONLY thing that I'd forgotten at home was a hat for Brooklyn. Of ALL things to forget, & I forget her hats! Duhhhh. So this whole trip I've had my eyes open for a good hat for her growing head. So we were browsing the hats & I asked the lady if they stretched, or if they had bigger ones. She was SUPER nice, but said that Brooklyn had a small head so why would we want a bigger hat? I then told her all about Brookie & her expanders, & the need for such a big hat. We picked one out (see below) & I tell you what...she's just adorable. And the lady even gave us $5/off cause of our "story".

Mommy & Brooklyn - with her new hat!
We continued walking around browsing the stores & shops. And then decided to make our way back to the car. On our way back Cali just happened to see the cute little train ride for kids...yeah, that literally just goes in circles. But for $2 how could we say no?

Cali riding the little train.
We went back to the car, got in, & started back for the hotel. We had needed to get diapers, wipes, & formula for a day or so & we were definitely not going back to the hotel until we had them in hand. There's a Super Target near our hotel so we went there, got our stuff, & came back to eat left-overs for dinner. Gotta love a super cheap day that's filled with lots of fun & great kids!!

On our way home we heard from Christine. Josh had his surgery this AM & they had gotten to go back to their hotel at 2pm! She said he was doing so much better this time around than he was 2 weeks ago. How great!!! Dr. Bauer even got to remove some of his nevus, which is even better. She wants to meet up tomorrow so we'll probably take it easy by going to the mall again & letting the girls run free. That certainly has helped in the past. :o)


Thursday, January 13, 2011

The Adventure


"The Adventure - Part 1 - Home through the train ride"

A few days ago Amie & I were talking about the train that goes into Chicago from here. We heard it was like $5 & took you right to where you wanted to go. Sounded like a perfect plan to the $17 parking that Dustin & I had found a few days earlier. But then I got to thinking (& Amie did too) that maybe it wouldn't be such a grand idea...strollers that you have to fold up, possible cabs, lots of stuff to carry, etc etc. We decided against the train & thought driving would be the best. We thought that today we'd go to the aquarium. Great for the kids!!! Perfect.

Well...until this AM at 9:40 when she said that they decided to take the train & we needed to leave by 10am!!! LOL "OH crap!" I said. I had a twinge of anxiety right off the bat cause that means that we have to pack completely different than if we had the car. Consolidation. (Plus, we can't forget that she's still on antibiotics so we have to take that refrigerated.)

Anyways, we managed to get out of the room & into the car by 10:10am. But unfortunately that meant that the 10:26am train was missed & now we'd have to wait to 11:26am. No biggy once we got there cause we literally had to park like 1/3 mile away & then get tickets.

We waited for the train & had to fold up the strollers so that we could get on. This meant taking everything OFF the stroller, CARRYING it on the train, finding a place to sit, & then sitting there in utter misery waiting for the train to arrive. I was sitting on the seat with Brooklyn (IN HER SEAT) on my lap & Cali next to me, with Dustin & the stroller (mind you...this is a DOUBLE stroller) behind us. Thankfully Dustin took Brooklyn a little while after we started so that I could help with Cali.

So we get to our stop & now we have to UNLOAD! Not knowing the station or the area we had no idea if it would be a big waste if we folded out our stroller or if we should just keep it folded up. So there's Dustin: carrying both the folded up stroller & Brooklyn in her seat. And there's me: trying to hold Cali's hand (which is a feat in itself when she's in the I-don't-want-to-hold-your-hand-because-I-think-I'm-independent stage) with ALL of our stuff. We got out of the train arrival area & headed towards the doors.

I guess I just wasn't thinking.... no scratch that. I wasn't thinking. Cause I didn't realize we'd have to take a cab. I hate cabs. Me & cabs just don't get a long. I don't know why. I just hate them. So the aquarium that we're headed for is miles away...not walkable, especially in THIS weather.

"The Adventure - Part 1 - Home through the train ride"...although slightly difficult was a success. Check.



"The Adventure - Part 2 - From the station to the Aquarium"

So now we're at the cab dilemma. Do we take 2? Or should we just get a van that Bruce suggested....which was an excellent suggestion by the way...something I didn't think of. We decided that instead of waiting for a van, we'd just take 2. Sounds simple enough right? Haha, WRONG!

Poor little Cali...we just expect her to get in some strange car? Yeah right!!! I threw all of our stuff into the back seat & he folded up the stroller. I put Brooklyn in kind of behind the driver, sorta, & then got in next to her. Dustin practically had to throw Cali in the car kicking & screaming & then buckle her in & shut the door while I was holding on to her. She SCREAMED literally about 20 blocks in to the ride. Grrrr. There was nothing I could do to console her. Well this whole time little Brookie was sound asleep. Haha not anymore. Once Cali decided that she was going to be done crying, Brooklyn decided to take her place. She screamed the whole rest of the way to the aquarium. I tried a paci, I tried a bottle, I tried everything short of actually getting her out of her seat. UGH! I was so mad that Dustin was up front not doing a darn thing about it...(but really, what was he going to do from up there???)

"The Adventure - Part 2 - From the station to the Aquarium" - complete & total disaster. Simply stated. Check.



"The Adventure - Part 3 - The Aquarium"

So we get to the aquarium, unload, & then I let off a little steam... We paid, went in, looked at the fishy's, & then left. Hahaha, ok it was a little longer than that, but it was pretty uneventful (as in...no melt downs, no crazy behaviors worth writing about, & no horrible experiences). Cali had a ball. Brooklyn was great. Zoie loved it. Zac was wonderful. And all 4 parents were content.




Cali at the kids area. She loved touching all the fun things...& playing in the water of course!
Notice Bruce & Dustin also partaking in the hands-on experiences in the back! ;o)

Cali & Daddy watching the dolphins.

Cali playing in the submarine.
"The Adventure - Part 3 - The Aquarium"....soooo great. Check.



"The Adventure - Part 4 - Getting home"

When it was time to go we found a van taxi which was great...but SOOOO not legal! The City of Chicago could have made a fortune if they'd pulled us over. ;o)  (And that's all I'm gonna say about that.)  We decided to not get dinner yet (at the risk of temper tantrums & melt-downs) & just go back to the train, take the train back to where we came from, & get in our cars & find something to eat. We got to the station safely, thank the Lord. However, when we arrived we were too far over in the lanes for unloading. We should have been in the right 2 lanes but we were in the next one over...& there was a traffic jam. Perfect. So our brilliant driver says "Oh just get out here...I'll help you!" HA!! Ok then...we'll simply grab all of our crap, the strollers out of the back, & FOUR CHILDREN & exit the cab in the middle of the street! Riiiiight.

Well that's just what we did. The guy grabbed stuff, Dustin got strollers, I got Cali & Brooklyn, Amie got Zac, Bruce got Zoie (or at least I THINK that's what happened, cause it was all in the blink of an eye) & we were out of there. By then of course traffic was now moving & horns were honking in every which way. How appropriate.

Keep in mind that this is approximately 5:30-5:35-5:40'ish PM...RUSH HOUR!!!!!!! So naturally Union Station is jam packed. Dustin led the way & we all made our way inside the station. Dustin & I went to our immediate left to the same elevator that we'd came in on & didn't even look back, but the Moller's stayed to the right. Oops. But we didn't think anything of it when we were standing at the elevator & looked across the station to see them doing the exact same thing. To me it looked like we all pressed the elevator button at the same time. Easy. We'll just all go up & meet at the top right? Haha. Riiiiiight again! First off, Dustin & I stood in the elevator for a while trying to decide which floor we wanted. After waiting for about 20 seconds we finally figured out that the Metra floor was where we wanted to go. So we got off there & immediately looked to our left....but didn't see the Moller's come off the elevator. Well they must be stuck or something. So we waited. And waited. And waited. Huh. So I call Amie. Lo & behold they're already on a train?!? WHAT THE HECK?!!!!!!!!!!!!!! How on earth??? For a split second I thought they were teleported to a train cause there was NO way they made it there that quick!

So in a mad panic I hang up & just start doing a perimeter search...trying to figure out where we were & where we needed to go. (This is where my Amazing Race skills come in...) Some guy must have seen the look of total horror on our faces cause he came up to us & asked us where we needed to go. I showed him our train schedule & he was like "Oh I'm going near there...follow me." Oh how great. So we follow him to the even numbered tracks. (The odd numbered tracks were on one side of the building & the even numbered ones were on the complete opposite side.) He showed us how to check which train was ours, which was a HUGE help. He went on his merry way & we started walking down the hall trying to figure out which train was ours. We got to the end & no train. There was a conductor standing there & she asked us where we were going. I showed her our schedule & she said that we needed to go to the ODD numbered tracks! Oh how great.

She pointed us in the right direction & we were on our way. Apparently though we didn't look like we knew where we were going cause another man came up to us & asked us if he could help. Again, I showed our stuff to him & he showed us where to go. As soon as we came to the odd numbered tracks we immediately found our train, got on, & were on our way. We were one of the first ones on so we got 2 seats that faced each other, which was nice with Cali.

Once we got on Amie & I were texting to see what the heck happened! When we were trying to decide where to go in the elevator, they had already gotten on the elevator, gotten to where they needed to go, & gotten off. Then when they got off they immediately found a Help Desk & were on their way. They thought that we were in front of them, cause that's how we entered the building. So everything that could go RIGHT for them, did. But everything that could go WRONG for us, did. (They would have totally kicked our butts in The Amazing Race...)


Cali on the train - finally posing for a picture...with Daddy's hat!
 Anyways, we got on our train & got to where we needed to be. Little did we know though that Bruce was waiting for us as you get out of the train station so he could take us to our car cause it was just 21 degrees outside....which was SOOO nice of him. But we didn't know that so we went a different way out of the station & walked the 14 miles to our car! But they found us & then we were off to dinner.

By the time we got to eat all 4 kids were either asleep or almost there, & the wait was 1/2 hr, so we just decided to grab something & bring it back to the hotel.

"The Adventure - Part 4 - Getting home"....another complete & utter disaster x's 10!!! Check.



Dustin & I told ourselves we would NEVER do the train-thing again. But now we're reconsidering our decision cause the first time is always the worst, right? LOL I guess we'll see...

Wednesday, January 12, 2011

This awesome hotel...& Volume 2!!

I think I've mentioned before that this hotel is absolutely amazing. The staff, the room, the area, the amenities...everything. Tonight I was visiting Amie in her room & one of the staff brought down 2 stuffed animals for Brooke & Zac! How nice was that?!!! We spent a little time talking with her & she said that we can get this same rate the next time we come, which is a huge relief. We got a pretty good deal, so it's very nice to know that we can get this same great rate.

Also...today is officially Day #1 of Brooklyn's Best Volume 2!! I have officially begun making the book, as of today. :)  (Yeah...I know I'm slightly crazy...)

"I'm Drain Free!!"...& an awful set-back for our friends

We had a good day today. I had talked to Dr. Bauer's nurse Susan yesterday & we were supposed to continue with the drains just until this AM & if they were still draining just drops then they'd take them out today. I called her back today & she said to just come on in & they'd remove them...what a relief (for BOTH us & Brooklyn).

Last night was another bad night (well mainly super early this morning actually) cause Brooklyn kept pulling her dressing off her head....and YES she did have the restraints on. She's a clever little buggar! So it was definitely a relief to us & I'm sure she feels free now.

So we got to the office, got right in, & got those darn drains OUT!!! She didn't even flinch when they were pulled out...I was pleasantly surprised! We had a nice visit with Mim, Dr. Bauer's nurse & then we were on our way...drain free! We did have a little dressing on her head just for some slight oozing, but could take that off as soon as it stopped. We were going right to the mall for lunch as well so it was good that the dressing was on...cause her head was nasty!!!


Happy as a clam after her drains were out!
 We met the Moller's at the mall (our 3rd mall in just a few days)...but this mall was way more upscale!! I felt out of place wearing jeans! LOL  We had lunch & then the guys went to see True Grit. Amie & I took the girls to the play area, a big tree house, & sat there watching them drinking a Starbucks!


Cali playing at the big tree
 Oh...the best part of the day???? Finally finding a serve yourself frozen yogurt place!!!!! I've been looking for one of those places since we got here & couldn't find one anywhere. I just stumbled upon this one...& bought some immediately! LOL It was so darn amazing. Cali had her own too, which she also loved. (I'm teaching this kid well...) I will definitely be returning.

After letting the girls play for a while we started walking around, & the guys got done fairly soon after that. We decided that it was best that we leave cause Cali was starting to act up. She went in a shoe store & found the boots, took off her boots (cause they matched, of course), & added hers to the display, & then wanted to leave...THEN threw a fit when I tried to take her shoes & put them back on her. She was tired. Very...very...tired. We left & she was asleep literally even before we were out of the parking lot!

We got the most amazing dinner ever. I actually gave myself a stomach ache cause I was eating so fast. :)

....and then we got the bad news....

The Melton's had a tough time with Josh's sutures over the past few days. About 6 days after surgery it looked like one of his stitches popped open. They called the office but didn't really think anything of it since it was so small. Unfortunately though it continued to grow & grow...& now it's a hole big enough that you can see the actual expander through. :(  They just went home yesterday, remember. And now.....they are coming back tomorrow (Thursday) for surgery on Friday to remove both of the expanders. They will give him enough time to heal up & then can start the whole process over in May. If there's ANY possible good news from this, is that even with the small amount of fluid that he has in the expanders now, Dr. Bauer will be able to remove some of his nevus! So that is good, even from a horrible situation. I think I'm still in denial about it all cause they just went home yesterday! I can't even believe that this is happening to them. I feel SO horrible for them cause I can't do a darn thing about it. :(  So please keep them in your thoughts & prayers. This is definitely an eye-opener that anything can happen at any time.

As for us, Brooklyn had her first head-washing tonight & boy did she L-O-V-E it. She liked it SO much that she actually almost fell asleep as I was massaging her head. I gently rubbed over the stitches & she didn't even flinch, thank goodness. Once we got done & her hair dried I realized that we need to do it again cause all of her nevus hair is still sooooo greasy from all that Bacitracin. So another head-washing is in the works for tomorrow...

Laying there like a good girl getting her head washed...& boy did she ever LOVE it!
So that's our day. Tomorrow??? We're going to the Aquarium. The kids will absolutely love it & I'm pretty excited to see the expressions on their faces! Please remember to keep our friends the Melton's in your thoughts & prayers...

Tuesday, January 11, 2011

And then there were 2...My great friends

And then there were 4...
When we arrived in Chicago there were 4 families here scheduled for surgery with Dr. Bauer. (Well 4 of us that are great friends that know each other. There are probably more here that we just don't know of...) Anyways, we had that get together on the 3rd, the day after we got here.

4 families attended:

The Nagel's: Mom Beth & Dad Carl (who unfortunatley wasn't able to come) have sons Lincoln & Sully. Lincoln is the older brother & Sully is the one who has had surgeries. He has a back nevus that goes to his neck. He's had 2 rounds so far (2 expander insertion surgeries - like Brooklyn just had, and then 2 removal surgeries). Beth decorated these cookies for the party...how adorable!!
And this is her son Super Sully:

This is why Beth is so great. Beth was the very first person I'd "met" on the Nevus Outreach Yahoo! Support Group. She welcomed me, answered some random questions of mine, & told me all about the cookbook that she made as a fundraiser. So she's the reason I did the cookbook. She has answered any questions I've had about anything, especially the cookbook! She also went solo to the Nevus Outreach Conference in Dallas & we were just a couple rooms away from each other, so we got a lot of time to get to know each other. She helped me "fix" my blog so it wasn't so boring, too! :o)

Follow the Nagel's progress here: http://newsfromthenagels.blogspot.com/
The Nagel's left Tues the 4th to head back home to the Sioux Falls, SD area.... And then there were 3.


The next family is the Melton's: Mom Christine & Dad Adam have older sister Katie & younger brother Joshua. Joshua is the nevus-owner in this family. Josh's surgery was just 1 week (to the day) before Brooke's. His nevus is also on his back, but instead of going north to the neck it goes south to his bottom. He had 2 expanders inserted in this surgery...& this one was also his first, just like Brooklyn.

I "met" Christine also on the NOI support group site. She, like Beth, also welcomed me. And she, like me, was also pretty new to the site. I could tell there was something about Christine that I liked...that she was a lot like me! LOL I was able to meet Christine, Adam, & Josh in person at the NOI conference as well. After the conference we talked a lot...through email & on the phone. She also decided to do a cookbook so we tackled the project together. It was so nice to have a partner in crime when working on the book. Any questions I'd had, she'd already found the answer to...& vice versa. She's pretty much just as anal/organized as I am...so it works out great! :o)

This is her husband Adam & their son Josh:
And here's Adam with Josh & Dustin with Brooklyn...& their capes of course! They love talking sports (the dads, not the babies)! :o)


Follow the Melton's progress here: http://www.journeyswithjoshua.com/
The Melton's left today to head home to Phoenix...And then there were 2.


One day a couple months ago Christine sent us all an email telling us about a new nevus family who she was made aware of. They live just 15 mins away from her (WOW!) and their son was born just days before Joshua (DOUBLE WOW!!). They are the Moller's: Mom Amie, Dad Bruce, older daughter Zoie, & younger son Zac. Zac is the nevus-owner (proudly nicknamed Wolfy) & his is also on his back but wraps around slightly to the front on one side. I added Amie as a friend on Facebook & we started writing back & forth. Then to all of our surprise, Zac's surgery was scheduled for the same day that Brooklyn's was!! This immediately connected us more, as we both needed to find hotels & both would be in the exact same boat at the exact same time! I hate that other families have to go through this, but am SO blessed that we have another family to go through this with together.

Here is Amie & Zac (aka Captain Happy) with his cape on:


We have spent the past couple months getting to know each other by checking out hotels, comparing prices, & finding stuff to do in the area to keep us occupied, since we'll both be here for 2 weeks. I "officially" met Amie Monday the 3rd, which was the day they got in. The hotel put us right next door to each other, which has been great. We made a pact just a day or so after getting here that we won't feel bad if our babies cry in the middle of the night...cause it's someone we know next door, not a perfect stranger. Our daughters have had a ball swimming together & playing with their babies (dolls...not their baby brother & sister...haha). Unfortunately because they live so far away in AZ, they had to fly so they could only bring a limited amount of things, so Zoie has had a blast coming over & watching movies with Cali & playing together with her toys. You've read all the things we've done together since we've been here so I won't repeat them...but it's definitely been so nice to have someone to talk to for me, someone for Dustin to watch football with, & someone for Cali to play with. Follow the Moller's progress here: http://checkingbackwithzac.blogspot.com/

Here's Brooklyn & I when she opened her cape:
And here's us all together:

In the back: Christine with Josh and Amie with Zac (and Zoie is in front of her!)
In the front: Beth (minus Sully) and Me with Brooklyn
So that's that. We're down to 2. The Moller's leave Monday & we're leaving Tuesday bright & early. We're busy planning again: on things that we can do to occupy our time before we leave!

Exploring New Places...And the BIG REVEAL

I didn't write yesterday on what we did cause I was just too tired last night!

We got up & ate breakfast, then went to the same mall that we'd gone to the day before. Cali just needed to get out & run. The mall has a nice-sized kids play area & even a train that goes around the 2nd floor of the mall. So we got Cali out & let her run!!! The Moller's met us there - So Cali & Zoie could play together. They had a ball. I then took them on the train, which of course they loved!

Playing on the toys...& having a ball!

After playing on the toys they wanted to go on all the little automated riding toys that suck up every last quarter you have in the deep, dark depths of your purse. Cali went on the little ice cream truck, the space ship, & the ice cream truck again. She tried going on the simulated roller coaster ride but got freaked out about 10 seconds into it so she quickly got off & we watched Zoie ride it.

After the mall we went to ANOTHER mall...that apparently was the largest mall in the world before the Mall of America was built. It was 4 floors of absolute amazement. I didn't see it but Dustin said they had a play area that totally trumped the other one we were at. We may have to go back to this place! Anyways, the reason we went was to have dinner at the Rainforest Cafe with the Moller's & Melton's. The Melton's are all done & left for Phoenix today. Their surgery was just 1 week before Brooklyn's. I can't believe their time is up already!

We had a nice dinner & then came back to the hotel. Now, anyone that knows me knows that I L-O-V-E frozen yogurt. I actually love frozen yogurt WITH my rainbow sprinkles. A friend of mine found a place that we had thought was one of those serve-yourself places. Wrong. Gosh darn it! That's all I want. That's all I NEED!!!! This place had just 1 flavor, but tons of toppings. So I got plain yogurt with pineapple & coconut, since they didn't have any sprinkles, grrr! But to my surprise, when I tried the yogurt I found out it was the original tart flavor...which I LOVE. So at least part of it was great!

And now the moment you've all been waiting for. Last night we had to change Brooklyn's entire dressing again. Oh...I guess a side note here: I heard back from Dr. Bauer's office at 5:15pm about her drains. I didn't hear my phone since we were at dinner, but they said that they wanted to talk to me tomorrow (today) & see how they were draining...& said that even IF she pulled them out, that nothing would be done about it. So I was thinking that maybe they'd just happen to fall out last night...snicker snicker! Hehehe. Well imagine my disappointment this AM when one tube was 1/2 FULL!! UGH!!!!! It hadn't been changed in 15 hours (totally my bad) but still, there was a lot in there. This immedately put me in a bad mood cause then there'd be no way we could have them removed today. I wasn't going to call them today, but Amie said that they were kind of waiting for my call. (They had to take Zac in today for a dressing change.) I decided to call them anyways, & she said that we should wait until tomorrow & basically if it's still just putting out drops then we can have them removed tomorrow!!!!!! YAY! This was the best news in days! :o)  So we're continuing to change them every 4 hours as usual & then I'll call the office in the AM & hopefully they'll have us come in to get those darn pains-in-the-booty out!

Anyways, here's the picture of little Brooklyn's head with her dressing completely off. I hope none of you have a weak stomach:

The head expander is on the far left, along with the stitches & drain. The forehead expander is on the far right of the picture along with the stitches. That drain is to the back of the picture. And yes, her nevus hair is disgusting. Her head can't be washed cause of all the incisions so it's pretty horrible.
 So there it is!!! There are 30 cc's in each expander right now...& they're only to get bigger!

You've Got Mail!

Imagine my surprise when I went up to the front desk today & they said that I got mail today! WOW....I got mail in a hotel?! I do admit...I felt kinda special. ;o)

It was such a nice card from a great couple who has been friends of our family for quite a while now... Dave & Jeanne Peeler. How nice of them to send us a card. We really do appreciate it. :o)

Here's a couple adorable pictures from last night...


Even though her eyes are closed, this is still one of my favorite pictures of her!!

And here we are with our eyes open...well one eye at least!


Sunday, January 9, 2011

Them darn drains..... And big sister troubles

Right after we moved to MT I became best friends with a girl named Jamie. She would travel to Chicago often, just like I would travel to CA. Jamie & I are still great friends & our family is still great friends with her parents. They gave me the names & numbers of Jamie's 2 aunts who live in the Chicago area, just incase we needed anything, then there's someone close!

Well last night we got a text from one of the aunts, Karin, who works at a restaurant called Shanty. (It was on Diner's, Drive-In's, & Dives a while back.) She invited us there for breakfast & would be our waitress! It was nice to meet her (& her husband even stopped by to say hello & even give the girls a gift) & to know that we at least KNOW someone in the area now, just incase we need anything. They were very nice to us...& we had a great breakfast!

Karin told us about a mall close by that we could go to...for something to do. It was very much appreciated cause we need ideas of stuff to do while we're just waiting for our last appointment & to go home. We were about 1/2 way through breakfast when Cali was playing around in her syrup. I should have known better than to order her something that required syrup. (DUH!!) Anyways, she was getting messy & sticky & we just didn't like that. All of a sudden she started crying...& crying...& crying...& CRYING! She wouldn't stop! Eventually it went down from sobbing to more of an annoying-type of cry that was meant to be more of a statement to us that she was still there. Oh it was horrible. Dustin & I traded places so I could sit next to her to see if I could calm her down. Nothing helped. I tried kissing her butt with anything & everything I could find. Nothing helped. We tried bribery. We tried threatening (LOL). We tried tickling. Again...Nothing helped. And again...Oh it was horrible. I kept looking around & no one was staring at us so she wasn't bothering anyone. We even tried ignoring her, but she just WOULDN'T STOP! About 15 mins of this & poor Dustin was just getting ticked off. We felt horrible that we were guests there & Cali was acting like this. (Btw: any parenting advise/hints/tips on this kind of situation would be greatly appreciated.) So Dustin ended up taking her outside & putting her in the car. Then I packed up all our stuff & we left. Again...I felt so bad that she acted like that when we were invited somewhere. But what do you do?!

On a big side note: This trip has been SO incredibly hard for Cali. The other 3 families that are/were here also have an older child (ages 5 & younger....Cali being the youngest) & then their youngest child had the surgeries. It's a concensus among all the families that the older child is the biggest problem. We can take care of the younger one that had the surgeries just fine...but the older one is so tough. I mean think about it... They have no idea what's going on. They're not at home (not even in their own STATE), not in their own beds, don't get all their regular toys, don't get to do their regular routine or see any of their regular people, or even go to their regular places at home. Instead, their lives are turned upsidedown. They're in different hotel rooms, are going to weird places, going to hospitals, seeing their siblings hurting with big "owie"'s. They don't know which way is up. For the most part, Cali has been handling herself alright, but boy does she have her moments...& the "moments" here are so much more often & worse than they are at home. We try to have daddy/Cali time & mommy/Cali time as much as we can, but there's only so much you can do.

So continuing on... We got in the car & decided that even though Cali was being a pill, that we'd go to the mall so she could run around & let off some steam. We found it easily & got there, but she refused to walk or ride in the stroller...she insisted on being carried. Unfortunately, she's getting up there in weight & it's pretty difficult to carry her everywhere. Long story short...we left the mall very soon after we got there cause she couldn't handle it. I think that by far...today ranks in the top 5 worst experiences we've ever had with her.

Unfortunately, Dustin & I have to not do what we want, cause Cali is being "punished" by going back to the hotel room. Even MORE unfortunate is that Cali doesn't even understand that! We can go back to the hotel all we want but come on...Dustin & I need to have a life here too. So when she said she wanted to swim we said no. On the way back to the room (oh around noon maybe) Amie & I decided to hit the mall with her 2 kids & with Brooklyn. Cali & daddy went back to the room (which daddy was perfectly fine with cause football was coming on). We had to take Cali's seat out of the car so we could put Zac's seat in. Well apparently when we took her seat out & then mommy left was when Cali really knew she messed up. Dustin said that she kept saying "I good girl Daddy. Mommy leave. I swim now." LOL

So Amie & I went to a mall that's pretty close to our hotel with Brooklyn & Amie's 2 kids. We got there maybe around 1'ish & didn't leave until 5:30'ish!! It was fantastic. We just walked around browsing, getting coffee's, & going to the bathroom! :o)  When we got back to the hotel I took Cali swimming cause she'd been super good for Dustin. Then we ate dinner & she fell right asleep.

Now for the "Darn Drains" comment... I hate those things. I really do. I can handle the dressing changes. I can handle the no sleeping. I can handle everything...except those darn drains. I've definitely cussed them out over the past few days. Our typical dressing change routine is this: putting Bacitracin on the stitches, putting vaseline gauze over the areas, putting regular gauze over that, then putting the stretchy wrap over the top of that. In order for it to stay on her head we cut a hole in the wrap for her little face, so it goes under her chin. Then we put the drains under the wrap & pull them 1/2 way through it so they'll stay in place. In order to get her to not pull on everything we have arm restraints/immobilizers that go on her little arms so she can't really bend them & get to her head. Sounds simple enough right? Wrong.

She's learned to pull/tug/grab at her dressing WITH the immobilizers on. We've managed to keep her from pulling it completely off...until today when we were walking around Bath & Body Works. She pulled the ENTIRE thing off. One arm had the restraint on & the other didn't. But she pulled it off. I yelled for Amie so she could help me put the other restraint on & then I re-dressed the area as quick as I could. How sanitary.


Her sneeky little grin...after the 2nd time she took her dressing completely off!
 All was well...until we were getting a drink from McDonalds when she did it AGAIN! And yes, she still had BOTH restraints on. Grrrrr!!! She just hates that thing. Oh and so do I. I hate the dressing cause it's holding the drains in place. Once the drains come out then we don't have to put the dressing on anymore. The drains can come out once they haven't drained for 24-hrs OR on Monday the 17th, whichever comes first. They have been draining only DROPS every 4 hours so I emailed the nurses at Dr. Bauer's office & asked them if we could just come in tomorrow & have them taken out. Gosh I hope they say ok!!!

So that's that for today. Brooklyn still detests her antibiotics. It seriously smells horrible, but it's gotta be done. Tomorrow we don't really know what we're gonna do in the AM, but tomorrow evening we're going to have an early dinner with Christine & her family cause they're leaving on Tuesday. I can't believe they're leaving already! (Josh's surgery was 1 week before Brooklyn's....so that means that we just have a week to go, almost.)