Zachary James

Zachary James

Tuesday, January 25, 2011

We've Had Our Fill...

We were a couple of days late due to a runny nose and possibly a little cold but we got back on track today as we did Zac's first fill of 55cc.  It was quite a process though, I'll tell you.  First I have to numb Zac's port.  In order to do that I have to put Lidocaine on it and wrap him in Saran heard me right.  The Lidocaine has to stay put for at least 45 minutes.  So...we have to wrap Saran Wrap around him to keep it in place.  When we were at Dr. Bauer's and we did his fill, they had these cool square pieces of plastic that you could tape over the area but Zac is a little hairy back there so when we pulled it off to start the fill I felt like we almost tipped him off to what was about to happen.  If anyone has any better ideas, please let me know.

While the Lidocaine soaks in, someone has to hold him so that he doesn't tear off his wrap.  That someone is Bruce, because I have to lay out all of our supplies.  A bag of saline, a 60cc plastic syringe, a couple pieces of gauze, alcohol preps, special scissors and a chlora-prep swab.  I have to fill the syringe with the saline and hook up the needle, make sure all the air bubbles are out and that everything stays sterile.  After 45 minutes, we are ready to begin.

Bruce holds Zac in a hug position and we had Zoie stand just behind him on the side that Zac was looking over.  I wipe off the Lidocaine and swab the port with the chlora-prep swab (which I almost forgot to do!), I make sure all the air is out of the tube of the needle and stick the needle into the port...which Zac should not even feel at this point.  Tonight, when I put the needle in, he arched his back a bit but did not cry or even express any discomfort....WHEW...success #1.  Bruce's job is to hold him as still as possible while the needle is in.  My job is to inject the saline and Zoie's job is to entertain which tonight she did in full.  It's the perfect family effort.  So, tonight while I was plunging 55cc of saline into the expander, Zoie was dancing, singing and waving a light-up toy maraca around keeping him entertained...and happy.  I have to make sure to check the skin as we 'expand' to make sure the skin still looks pink and is not over-firm.  Once the saline is in, the needle comes out and we are all done! crying....success #2.  A total of 175cc....Wow, maybe we can do this :)

To get a general idea of what we are aiming for, this is a 500cc expander which will hold well over that.
For those of you who are visual...700cc is about the size of a D cup boob. LOL

Sunday, January 16, 2011

The Great American Girl Meltdown and Other Chicago Tales

Well, it is finally day 14 of our 1st Chicago trip and it's been quite a visit.  After leaving Dr. Bauer's office on Tuesday, we were so happy with Zac's progress.  He was feeling good, had a really good dressing change by nurse Susan, had two of the three drainage tubes taken out and were told everything was looking good.  Unfortunately, for our very good Arizona friends, the Meltons, things did not go as planned.  While we were at Dr. Bauer's office, the Meltons (Adam, Christine, Katie and Joshua), after of series of things gone awry with Josh's experience, were on their way home at long last after 15 days in Chicago only to return two days later!!   The two expanders that Josh had put in two weeks prior needed to come out due to complications from some residual bacteria in the body from an ear infection Joshua had two weeks before his surgery!  The good news is, after they had the expanders removed, Dr. Bauer was also able to remove a great deal of Joshua's nevus.  You can read more about it if you click here.  Thank you for all your prayers and well wishes for this wonderful family.  I saw them all last night and little Josh (Zac's BFF) looks fantastic!

So...what do you do when you are in a strange new town and get clearance from the Dr. to get out and about...? explore the town!  We wanted to take in a few of the sites in Chicago while we were here so I asked some of the very nice people who work at our hotel and they said the 'easiest' way to drive to downtown Chicago was not to drive at all!  They said it was easier to take the train from a nearby station and then cab it from the train station.  Evidently this is a nightmare city to drive in between the construction, the rush-hour and all the one-way streets.  The nearest train station was about a 15 minute drive and train fare is only $4.50 per adult-one way.  SO...we packed up the kids...and the gear...and we headed to Shedd Aquarium, via the Metra!  After missing the 10:26 train by just a few minutes we waited at the train station for the next one at 11ish.  I packed Zac in the Baby Bjorn and took Zoie by the hand - Bruce did the heavy lifting with the stroller and diaper bag... and we all loaded on the train.  We found seats right away and enjoyed a 45 minute train ride to Union Station!
Don't be fooled-he LOVED the idea of taking the train.
Merilee, Zac & me

The train ride was great despite a certain 4 1/2 year old moving from seat to seat but after Dad handed over his phone for her to play with, she was pretty good.  Much more relaxing than driving (though probably not much cheaper after you pay for the RT tickets and the cab ride) and highly recommended-but pack light!  The less you have to mess with (dang winter jackets) the simpler it is.  We arrived at Union Station and headed toward the string of cabs waiting outside.  We were hoping for a van-type cab so that the Vance family could fit in with us but alas...all we saw when we went out into the ice-cold outdoors were regular cabs.  So...after freezing for about 3 minutes, we made a quick decision to just take 2 cabs to the aquarium.  Our cab driver's name was David, he was a native of Chicago and he was super-nice.  He and Bruce mainly talked about football the entire way and da Bears playoff game on Sunday.  We arrived safely at the aquarium!  Mission accomplished!  Everyone happy...cold...but very excited!!
With 32,600 animals the Shedd Aquarium is one of the biggest aquariums in the WORLD!

This aquarium was inSheddable (teeheehee).  There were several different reefs all divided by their general habitat.  Shortly after we got there we were all hungry so we went to eat at the BubbleNet Cafe.  We were amazed to find that this cafe offered beautiful views of the city and Lake Michigan!  I also had my first Chicago-style hot dog.  My first thought was WOW it tastes...just like a hot dog with a ton of stuff on it LOL.  For those of you who are as clueless as I was... a Chicago-style hot dog includes a huge hot dog loaded with mustard, relish (which is usually fluorescent green), sport peppers, tomatoes, celery salt, onion and a pickle spear.
Not the best pic of my Chicago-style dog...but you get the idea...
After lunch we headed to the 'Aquatic Show'...well, all I can say was this show was as boring as it's name...DO NOT pay extra to see this.  After about 10 minutes Zoie exclaimed.."Ugh, this is painful...can we go now!"  If you've been to Sea World then this show will not be very impressive.  So, we left before the best part...the end...and went to explore the other fish in the sea.  We saw a ton of cool stuff, coral reefs, frogs, fish, etc. and then it occurred to me that we hadn't seen the Polar Play Zone.  This is the spot for kids to touch and explore sea life.  It was pretty fun down there.  There was a penguin exhibit (even though the penguins were taking the week off to have a spring clean of their habitat).  Kids could literally dress-up in black and white penguin outfits and waddle around in a penguin habitat.  It was hilarious.  Once we got Zoie waddling around, Cali (the Vance's  2 1/2 yr. old) followed along.  It was great!!  As we kept walking we then saw a makeshift submarine for the kids to play in.  They had a blast playing with all the little buttons and sound effects.

Waddle like a penguin
Playin' in a yellow submarine

After all that playtime, it was time to leave.  Two babies, two kids with no naps all do the math.  After we successfully caught a van-cab leaving the aquarium, we decided having dinner in downtown Chicago, as fun as it sounded, would simply not be realistic.  So, we decided to head directly to Union Station and then to the hotel.  This time around our cab driver was awful...and that is being nice.  It is now rush hour in Chicago, our cab driver was getting frustrated with the two lanes to our right who were stopped behind a big bus and he put the cab in park...IN THE THIRD LANE TO THE LEFT and said "It okay, you get out here..."  YEAH RIGHT!  With two babies, two kids and a ton of crap...we'll just step out the door into oncoming traffic and attempt to safely get our entire family across the busiest street in Chicago during rush hour!  As soon as he said that, the bus started to move which freed up traffic to move...Bruce said, "Hey, if you wait a minute, the bus is moving..."  Still the driver I have Zac strapped to me and a death-grip on Zoie's hand, Merilee has Brooklyn in her carseat carrier with the same grip on Cali and Dustin and Bruce are moving like hell to get both strollers and everything else out of the cab and across the street while cars are honking at us and moving!!!  Nice!!  Jerk!!  Well, when things start to go downhill...they really go fast...  We rushed into the train station (why we were rushing I do not know...LOL-trains literally leave every half-hour or so in the evening).  We got separated from the Vances but since they were in front of us, we just decided to keep moving because surely they were already headed toward the train...right?  We got on the elevator, found the level we needed and then found an info desk, asked what train we needed to get on and successfully got on!  Whew!!  Perfect!!  Except for one thing...hmmm, something was missing...the entire family we came with.  Merilee and I were frantically texting each other back and forth, they evidently did not have the same luck that we did and weren't able to get on the same train as us.  However, since there was another train a mere 20 minutes later, they were able to get onto that one so all in all, the trip was a success!  I loved riding the train!  The train ride home was quiet, with two very tired kiddos.  We reached the train station and got to our car and not one minute later had two beautiful sleeping children in the backseat.  We decided to pick-up soup and sandwiches from Potbelly (a place we have grown to like here) and a Starbucks for me and head home...home here = hotel.

Bruce and I decided that taking the train was so wonderful, that we just may do it all over again the next day.  We knew that convincing the Vances might be a different story though.  On Friday, in a spur of the moment decision, we decided once again to take the train into Chicago and see some sights.  The first stop, The beloved American Girl Store.  This store is ginormous!  There are two floors of nothing but wayyy over-priced but very cute, American Girl dolls.  I wasn't too familiar with them but I was sure that Zoie would enjoy this special store.  It seemed it was the one thing we could do this trip that was especially for her.

These beautiful pictures were taken of my precious little girl right before The Great American Girl Meltdown. I don't even know how to explain what happened after we got to the second floor of the store.  She was whining about wanting every doll she touched, she wouldn't listen to reason or anything we said for that matter...I finally just couldn't take it!  "That is it!"  I said and I just started walking out of the store with the stroller.  Bruce and Zoie following behind...Zoie, now crying and screaming..."I WANT A DOLL!!" over and over again.  The store led to a mall...which led to a food court.  We figured this would be a great time to have lunch and so we sat down and took turns getting our lunches.  During this time, my sweet little girl transformed into a devil-child!!  She continued to have her meltdown, sitting by the elevator instead of with us making ugly faces, pouting and crying.  RIDICULOUS!!  I have never seen her act like this!  Poor kid...out of her element, out of her sleep pattern...out of her mind....  So, we did what any parent would do at this point.  We ignored her and ate our lunch LOL.  After a little while, she decided she was hungry and decided to join us at the table.

After lunch, we decided to take in the view from the John Hancock Observatory.  It had brilliant views of Chicago and a Skybox that was screened in so you could even stand outside to take in the views - but, who the heck wants to do that in January?  The day was pretty foggy so we weren't able to see very far, but the multi-media tour w/ headphones was pretty neat.  Zoie even had her own set of headphones with a kid-friendly version.  The tantrums were still on and off all day but we managed to have a terrific time taking in the views and walking around the exhibit.  It was not a structured tour, which was nice for Zoie because she could basically run all over the place.  They even have a little cafe so we relaxed, got some yummy gelato and spent some time kicking back - 94 stories up in the air.

Lake Shore Drive

As punishment for being so bad I made Zoie wash the windows of the Observatory (hehe)
After our site-seeing, we walked a few blocks to have dinner at Ditka's, Mike Ditka's it was cold!  Zac fell asleep and I had Zoie moderately under control so all in all it was a fantastic dinner.  I won't say it's hard to believe we have been here for two whole weeks because it seems like we have been here for a very long time and we are more than ready to go home.  I wish we would've gotten to see a bit more but then again...we have three more trips here this year alone. 

Unfortunately, tomorrow is another day I have been dreading.  It is the day we will go to Dr. Bauer's office and learn how to 'fill' Zac's expanders and pull out drains so that next trip we won't have to stay so long.  Lots of anxiety over this part of the process, but for those of you who are curious what a 'fill' is like....I shall fill you in tomorrow.  I will miss hanging out with Merilee, my nevus mom friend from Montana but I will be so happy to get out of this freezing weather and head home tomorrow....oh, and did I mention Chicago is expecting a snow storm tomorrow....grrrr.
Zoie and my crazy husband in only a hoodie!

Zac thinking - "Get me the hell outta here, it's freezing!"

Tuesday, January 11, 2011

A Little Glimpse

There is practically a blizzard outside right now....well, not really, but since I can't ever remember seeing snow like this, it really is something else.  This morning when we woke up the ground (and our car) was covered in snow and they already had snowplows out and about.  Snow has consistently been drifting about all day.  Unfortunately, we had to be at Dr. Bauer's office at 10:00 which meant we were going to have to brave the weather.  We went to Dr. Bauer's office today just expecting to get some tips on how to change Zac's dressings and instead we were able to remove two out of the three drains (there was one on on each side of his lower back because of the large incision).  Just a reminder:  Drains are put in because anytime you insert something foreign (the expander) or there is a good deal of movement, fluid wants to rush these areas.  The drains help flush out the fluids.
Our fabulous nurse, Susan helped take them out.  I can't say that Zac really enjoyed it - there was definitely a lot of irritation and he cried quite a bit.  But I was able to comfort him and he soon stopped.  It is fantastic to be able to get rid of two of them, not just because the drains are really gross...but they will also make changing his diaper a lot easier and I am sure that any time they moved back or forth it was irritating to my little man.

And now...for the reveal.  Nurse Susan was very happy with how the stitching was healing and thought everything was looking good.  Zachary still has one drain in underneath the expander and that drain will most likely come out next Monday before we do the first expansion.  So, for those of you who are interested, I have a couple of pictures that show the progress so far.  Keep in mind that we are not even a whole week from the surgery yet so everything is still a little fresh. For those of you who have a hard time watching ER - you may want to skip the pictures.
Look at how much of Wolfy Dr. Bauer was able to remove by 'advancing the skin' from his buttocks upward.

We also got a good look at the area where the tissue expander was placed and where the port is.  At this time, the expander feels like a deflated balloon under the skin.
Here you can see the tissue expander under the left shoulder/arm area - the incision and the drain and to the right of the drain, the little bump there is the port.
I know the stitches are a little difficult to look at but a couple things to think about.

  • the stiches are on nevus skin and will eventually be removed with the other nevus skin.
  • babies' skin heals quicker and better
  • this is a work in progress as he will have many more surgeries to come
Thank you God for your modern miracles and for the phenomenal knowledge and guidance you give our fantastic doctor and nurses.  Dr. Bauer is such an amazing person and Mim and Susan, his nurses have been so wonderful to us.  We are so fortunate to have such a great team looking after us.

What is a Tissue Expander anyway??

It is slowly setting in now that only the surgical part of this journey is over.  As hard as that was, it was only phase I of this process.  The next phase will be filling Zachary's expanders mostly every week.  Let me tell you a little bit about tissue expanders.  Like the skin in pregnancy, we know that skin has the ability to stretch to accommodate growth beneath it.  A tissue expander works pretty much just like this (think deflated balloon).  There are various shapes and sizes of expanders based on the dimension of what they refer to as the 'donor site' which is basically the area where you want to 'grow' the good skin.  These expanders are amazing.  They are used to treat not only congenital nevus but also burns, scars and Alopecia (absence of hair from skin areas where it is normally present).  I have had many people ask about skin grafting which can also be done but here are some advantages of  tissue expansion.

  • Good color match - different areas of the body have different pigments, texture, etc.
  • Normal sensation - the expanded area develops its own blood and nerve supply, therefore the patient will feel sensation to the touch.
  • Minimal donor morbidity - when skin or tissue is grafted sometimes rejection can occur.
  • Decreased hospitalization - with skin grafting there is a higher risk of infection, it is more painful and the patient often needs to be immobilized.   

After the expander is placed under the donor site, a 'port' is also placed under the skin.  The port is where the saline will be injected weekly.  The expander that Zachary has in his shoulder/underarm is capable of holding 500cc of saline.  Next Monday, we will go into Dr. Bauer's office for Zac's first 'fill' and will learn to do it ourselves.  I have to admit, the idea of it makes me just about crawl out of my skin.  So, not only did I just put my kid through the pain and risk of surgery, but now I get to poke and disfigure him even more...weekly....great!  Sounds like fun....ugh.  From what I hear, Lidocaine topical cream is put onto the port about an hour before injection to help numb the spot....but fun.

So, this is the source of my anxiety this week although Zac is getting happier day by day.  We may even be able to explore some of the more touristy things that Chicago has to enjoy (as long as they are cheap LOL and as long as I can kick this cold I have developed).  Last night we got to meet up with the Vance's and the Melton's at the Rainforest Cafe for the Melton's last night in Chicago.  Little Joshua had his first expansion yesterday and they are good and ready to get home to Arizona.
Mommy and Daddy just changed my dressing and you can see a little bulge between my arm and the drain-tube.  This is where the expander is.

Merilee, Me and Zac and Christine

I have spots...

Guy-talk between Josh and Zac

Sunday, January 9, 2011

Trapped in Room 101!

We returned to our hotel room on Friday early afternoon after spending all day Thursday in the hospital.  Since then we have been pretty locked up.  Thank goodness the Vance's are next door.  We have had several nice dinners in the dining area of our hotel together getting to know one another.  The kids are doing great!  What amazing resilience they have.  Brooklyn has learned how to pull the dressings off of her head...even with her arm restraints on, driving her mother insane.  And Zac has been wanting to crawl all over the place even though I mostly keep him cornered in his pack n play.  He has also begun baby 'regularity' which means changing his diapers with his new stitches is a NIGHTMARE!!  It requires three people to handle it however, it is just the two of us.  Ugh, changing the gauze, netting, tubes is NO BUENO.

It is tremendously hard on Zoie to be corralled in our hotel room.  Despite trying to keep her busy; She has watched movies, played with the iPad, played DSi, gone swimming in the indoor pool and played with our next door neighbor's 2 1/2 year old daughter, Cali,  she just isn't herself.  She's been angry, bratty and at night she cries because she doesn't want to sleep on the fold-out bed by herself.  The kid has got some pent up energy that needs to be released....and for those of you who know me know I hate to sit still so it's been hard on all of us to be trapped in room 101!  So, today Merilee and I found a mall (with the intent of finding a play place for the kids) and spent a five glorious hours just walking around aimlessly!!  It was awesome!  It was a nice break from reality which hit right when I got back to the hotel room and had to change yet another diaper...and with it, another dressing.  YUCK.

Zac has also taken to screaming bloody murder when we change anything on him despite several squeaky, blinky and crinkly toys.  Like I has seriously become a three person job and it totally zaps your energy.  He does seem to like the remote control though (typical male LOL).  Tomorrow we will call Dr. Bauer's office and give them an update and possibly see if we can pay them a visit and have them assist me in overhauling Zac's dressings.  I can't wait to show you a picture of the amount of Wolfy that was removed on the lower back but right now it's still a little fresh.  It is phenomenal that so much was able to be removed!  While I don't have any pictures of the dressing changes (I will spare you...), I do have a picture of Zoie riding a simulated roller coaster at the mall today.

Friday, January 7, 2011

The Morning After...

Considering the long day we had, Zachary had a great night.  He slept really good and we even got some smiles and singing....well, nurse Sandy got smiles and singing (between you and me I think there was even a little flirting going on there).  What you see in the picture poking out of his back is called a 'drain'.  Anytime a foreign object is put under the skin or in Zac's case where skin was also excised, it is the body's natural reaction to send fluid.  These 'drains' are basically test tube type bottles just like the ones you see them use when they take your blood.  There is a very narrow tube (think spaghetti) placed at the site of the stitching, the tube is hooked to a butterfly type needle which is inserted into the tube and the yuck drains into it.  So, one of the very gross parts of Zac's care right now is changing out the test tubes every so many hours.  I'll admit, if you have a weak stomach, you sort of have to just leave your body and pretend it is not your child and that you are just watching something on the Surgery Channel.  With the changing of the tubes also comes the Bacitracin, changing of gauze and bandages...and a lot of stuff that I can't believe I can remember to do, even changing a diaper is a challenge right now since he has stitches from hip to hip right above his tushie coming down into a V right into the crack from his 'butt-lift'.  (yes, we pray for very little #2)  Bruce and I have already developed a pretty good system - ultimate teamwork.  Thank God he was able to come with me because this cannot be done alone.  Here is Zac getting his first dressing change...he was not too happy about it but he perked up right after they were done.

Here he is rockin' his new gauze shirt made by PA-Kenzie...she even tied a cool little knot at the top.  You can also see another one of the drains sticking out of the left side of his cool shirt.  I do have to tell you, in this picture I think he looks like one of the Lollypop Kids from the Wizard of Oz.  He'a a little swollen from all of the fluids.
We were visited by Dr. Bauer and Nurse Mim this morning as well as two of Dr. Bauer's PA's.  Dr. Bauer is the most amazing person ever....he even gave us his cell phone number just in case we had any questions over the weekend.  If there was ever any question why we had to come all the way to Chicago to have these surgeries, that alone should answer it.  Dr. Bauer is Top Notch!  I mean, when is the last time YOUR Dr. gave you his cell phone number?  Even the nurses think Dr. Bauer is fantastic.  What an incredible feeling it must be to know that you are touching and changing so many lives.

What was most difficult these past hours was being afraid to touch my little guy.  I just want so bad to pick him up and squeeze him when he cries but for a while I was petrified I would cause him more pain.  Between the three drains, the  incisions and the large flap of skin that was lifted to put the expander beneath, I just didn't know where I could touch him so it wouldn't hurt him.  I pretty much just moved him from side-to-side and slept half hanging off the bed.

We were a little nervous about the car ride and how much pain he would be in having to sit in the car seat but he did awesome!  When we got back to the hotel he was so happy and immediately rolled onto his stomach and began to try crawling around!!  What an amazing kid!  There was a light snowfall today and after two days of being trapped in hospital and hotel rooms, we were able to meet up with Brooklyn's family tonight in our hotel dining room to share a little Chicago-style pizza!  I am praying for another good night of sleep (for both of us).

Thursday, January 6, 2011

The Waiting Is the Hardest Part...

This morning my baby boy woke up at 3:30.  He was NOT very happy that he could not have anything to eat and just be comforted back to sleep.  So, the more he cried, the angrier he got.  Daddy comforted him though and got up to play with him.  His favorite toys this morning...a random small candy wrapper, a calculator, a Chargers hat and a plastic spoon.  Those kept him happy until we left at 5:30 to go to the hospital.  At the hospital we began the waiting.  I changed Zachary into his little hospital gown and put on his Super Hero Cape to keep his back warm...after was 21 degrees outside this morning.  It was a little sad knowing that this was the last time I would see him in his original God-given form.
After visits from Dr. Bauer and Dr. Doberman the anesthesiologist,  (yep, that's really his name) at 7:25 they came to get my little man.  We were able to walk him down to the doors to the operating room wrapped in a warm blanket and yep, I lost it a little.  It's funny to think he will not ever even remember this moment...but I will never ever forget it.  It is comforting knowing that he is in the best hands with Dr. Bauer and with God watching over them both.  It is also difficult to try and pull it together so your four year old doesn't freak out.  Zoie has been quite a challenge this trip - as have most of the siblings from what I've heard.  I have to remind myself constantly that while she isn't the one getting surgery - she may actually need even more attention than Zac.

So...we waited...and 9:55 Dr. Bauer came out to get us.  The surgery went really well.  They were able to do what they call "advance the skin" from his little tushie upwards and take what sounds like a pretty decent strip of Wolfy off of his lower back.  In addition to that removal, they also placed an expander across the top of his back.  This expander will hold 500cc of saline.  Due to the limited amount of 'good' skin, he may not be able grow much good skin this round...but we will take it little by little.  We were hoping to have two satellites removed this round, one on his ankle and one on his arm...but they were not able to do it this time.  Onto the recovery room.

Zac was a little disoriented as most babies are when they are coming to from the anesthesia.  He cried a little bit but eventually settled into my arms and drank a whopping 6 oz bottle!  He slept peacefully after that and I rocked him for a little over an hour until we were able to go to our room.  It obviously is not comfortable for him to be moved a great deal but he is doing amazing.  Once we were in our room, we were able to lay side by side on the bed and I was able to nurse him a little which comforted him a great deal.  The nurses think he is so adorable and such a little trooper.  Let the healing begin.  I am gonna order a tray of food and take a big fat nap!

Wednesday, January 5, 2011 Dr. Bauer

Well, today is the day....not the BIG day...but the day we get to meet Dr. Bauer for the first time and get a better idea of how many surgeries Zachary will most likely need to remove "Wolfy" (which is what I decided I am calling that giant hairy nevus LOL-may as well call it something and I get tired of calling it a giant nevus).  Last  night Zac was sporting a little fever and had us very worried that he might not be able to have his surgery on Thursday but this morning he is back to normal - trying to out-talk his sister (no small feat) and crawling around all over the place.  So, this afternoon, we will head to Dr. Bauer's office and meet his fabulous staff whom I have had the extreme pleasure of corresponding with through email and phone.  It is absolutely amazing that Dr. Bauer has been willing and able to do consults via email and phone up until this point.  I am so grateful for that.  Can you imagine if we would've had to fly all the way to Chicago just to find out what options we have??

Today we also will learn more about the 'expanders'.  How to fill them, how to care for them and I am hoping, a little more of what to expect.  It seems like I have a million questions from how do I bathe him once the expanders are in to how on earth will he fit in his car seat once they expand.  And of durable are they?  Well, I guess a lot of these questions will be answered today.  Thank you so much to my friends for your special prayers - they really mean so much to us.

If you are wondering why I lovingly refer to the nevus as Wolfy...see for yourself.

Tuesday, January 4, 2011

Friendship is Priceless...'nuf said.

I saw a quote once, "A friend is someone who is there for you when they'd rather be somewhere else."  Well, last night I got to meet up with four other 'Nevus' families who I have come to know under circumstances we never expected.  The Nagels from South Dakota have little Sully who has gone through two full rounds of expansion surgery.  Little Sully had surgery on Thursday night and was up walking around in his Super Sully cape last night!  The Vances from Montana who are my new next door neighbors in this hotel and parents to little Brooklyn, a few months older than Zac.  Brooklyn will be having surgery the same day as Zac!  There is no doubt Merilee and I will be bonded for life through our events on Thursday AND...The Meltons, my friends from Chandler, AZ (woot, woot) who I have been so lucky to have met earlier this year and am even luckier that they live in AZ.  Christine Melton forged a turning point in my life this year.  Let me tell you how I met her....

Zac had just finished having his MRI (I didn't mention in my earlier post that one of the challenges of CMN is a condition called NCM.  If you are curious about NCM, click here.  Luckily, NCM was not detected on Zac's MRI)  Our pediatric dermatologist called to give us the results of our MRI and shared with us that  1) there was another baby born in AZ 4 days after Zac with a large nevus! (1 in 500,000, imagine that!!)  2) that they were very nice people who had been to the Nevus Outreach Conference in TX  3) would we like to meet them.  Dr. Price gave Christine my phone number and she called me right away.  The enthusiasm I heard in her voice about what she learned at this conference changed my life. She was so warm and friendly, knowledgeable and smart and so amazing.  In talking to her for 45 minutes, I was as educated as if I had attended the conference myself.  The Nevus Outreach Conference happens only once every 2 years.  I missed out on going because after talking to our first pediatric dermatologist, we did not think there was anything that could be done with Zachary's nevus at such a young age.  After talking to Christine, I learned about nevus, expanders and best of all Dr. Bauer in Chicago.  She told me that he actually likes to start children young because the skin heals better, is more pliable and they recover quicker.  So, I am so thankful that God placed Christine in my path.  She has given me strength, comfort and inspiration.  And with her friendship came so many other fabulous nevus family friends.  I cannot tell you what it has meant to be able to meet such wonderful people along this journey.

Here we are at our 'family reunion' of sorts.  Christine and Josh, me and Zachary, Beth and Merilee with Brooklyn.  I love you girls!  Muah!
And here is Zac in his new SUPER HERO Cape from his Aunt Beth!  We will be wearing this for all surgeries.  He needs a good super hero name though...don't you think?

Monday, January 3, 2011

More Than the Sum of his Spots

Well, we arrived safely in Chicago today getting ready for Zac's first surgery to put in his first expander. Our day started today when we left the house at 3:30 to get to the airport for a 6:10 flight.  Travel with two kids and two weeks worth of luggage is no small task friends.  Four suitcases, an overstuffed garment bag, pack n play, stroller, computer bag, diaper bag, Zoie entertainment bag (even though all she wanted to do was play with my iPad), booster seat for Zo, car seat for Zac.  I feel like I should buy a t-shirt that says "I survived traveling with my kids...."  Thank you to the people of Southwest airlines who do not charge you for extra bags and they still serve snacks on their flights.
I was thinking that today I would tell you a little about Zac. First of all - he starting crawling just last night!  I was so happy about that because I was afraid it might take him longer to learn to crawl if he didn't start before they put his expander in.
For those who haven't had the opportunity to meet my little guy, I will try to describe him.  Zachary is full of uncontainable joy.  Truly.  His smile will grab your heart and tug...and he is ALWAYS smiling.  Sometimes I can't help but wonder if he knows something that I don't.  You know how some people are labeled 'old souls'?  Well, I don't really believe in an 'old' soul...but I suppose I know what they mean because Zachary always seems so peaceful.  Maybe I am just seeing spots because that's what happens when you look into the light.  Here is is, spots and all.