Chicago in October!

We headed last week back to Chicago.  Dr. Donaldson did Macy's procedure.  I believe this was the 4th time he has operated on Macy.  When he came in to talk about her case beforehand, he said he had talked in depth about Macy's case at a conference on Tuesday.  We were under the assumption that this was going to be done in true venogram style (through a vein in her neck).  Nope.  It was decided that they would attempt to access her Rex Shunt through her right side of her chest/abdomen.  He said that the only other option was to try to go through her left side (through her spleen), but that he didn't think there was an chance of being successful.  As a matter of fact, he wasn't sure how successful he would be doing option 1. 

So they went through her right side, snaking up into her portal vein area.  He was able to get right into her Rex Shunt, and inflate the balloon 3 times to stretch the vein.  He said the gradient went from 3 to 11 from before to after the ballooning.  It took at little over 2 hours to complete.  Following the procedure, Dr. Donaldson and Dr. Superina came to talk with us, and were very excited at how well it went.

When they came to get us from recovery, I had to go back alone since we had McKenna was with us.  Macy was already awake, snacking on a popsicle, and gave me a great big smile.  She asked for 2 things.....1.  Where are Dad and McKenna?  2.  Can I have some Buffalo Wild Wings?  When I said no to Buffalo Wild Wings, she then asked for some tomato bisque soup, lol.   We made her finish a popsicle and some keep down some water first, but we did get her some soup. 

McKenna and Jeremy were able to join us soon after, and in a couple of hours they sent us back up to our home floor.  We were happy to recognize some faces from out last long stay.  When we first arrived though, they tried to tell us that Macy was on "no contact" because of a test they ran back in April following her Rex Shunt surgery.  They had done a urine test due to a slight fever and elevated heart rate, and it came back with a bacteria in it.  However, it was not a clean catch, and she was also having loose stools that time.  So they talked about the validity of the test, and sent us home.  It was never discussed again.  However, during this stay they said it was on her record that she had to be
"no contact" for any stays.  I was like UM, NO!  That would be that she could never leave her room, and anyone who came in had to be gowned.  Within 30 minutes I had that removed from her record. 

So, we headed to BINGO from the 20th floor to the 12th floor.  The girls had a blast!  We did lots of walks around our floor and into the family room.  We really didn't need to stay the night in my opinion.  No one really paid attention to us the whole time we were they, lol. 

Macy had an early ultrasound on Friday morning, as well as some labs.  Her ultrasound looked fantastic, and the Rex Shunt was very uniform all the way through versus the narrowing it had in the middle before.  This is great news!  They said there are chances it could narrow a little bit again, and sometimes they have to repeat the ballooning.  We are hoping that was the only one we will ever need!

So we were sent off with great news!  A successful procedure, and no more Coumadin.   Macy was so excited that she could start eating foods full in vitamin K again.  She absolutely loves broccoli and salad!  They changed her to Plavix.  Plavis is a medication that makes your blood slippery.  It more like taking a daily aspirin.  So we have less restrictions.  Yay!  We head back in a month for more labs, another ultrasound, and a visit with Dr. Superina.

We are really feeling blessed, and I am so excited to see how this fully functioning shunt benefits Macy.  Thanks for checking in on us, and for all your continued prayers!

The Ins and Outs of Disney World!

We recently returned home from an amazing Disney trip!  Macy had already been 3 times to Magic Kingdom, and McKenna had been twice.  However, we had never ventured to any other parks or stayed on Disney property.  Let me tell you, staying on Disney property and including many of the "extras" offered is well worth it. 

We decided to book a trip that included 3 park tickets, a meal plan, the memory maker, and stay on property.  I'm going to discuss how we made this trip seamless, and hopefully it can help you do the same if you are thinking about booking a trip.

I've had a lot of people ask me if I used a travel planner, but we didn't.  I booked right on the Disney website, and it was so simple.  If you aren't the kind of person that doesn't really like to plan trips and you don't really care how much control you have over your visit, then a Disney planner would be the way to go.  However, I had so much fun looking into the tips and tricks, and having all of the planning control over our trip.  We booked our trip for October 6-9 (Sunday to Wednesday), 3 day park tickets (no park hoppers), the memory maker (photos from rides and visits), and the Quick Service Meal Plan. 

The Resort

We looked into staying at 3 different places: The Coronado, Port Orleans, and Caribbean Beach. I chose the Caribbean Beach based off of 3 things.  1. The atmosphere   2. The pool   3. gluten free food options

The resort was beautiful and really had the feel of the little villas from the Caribbean.  When we booked we knew we wouldn't be in the room much, so we said we didn't care where we stayed at the resort.  They had different clusters of villas with Caribbean names such as Trinidad, Jamaica, Aruba, etc.  The resort is huge, and all areas were walkable, but there were times we drove places to save time.  The main food sources and large pool with slides were located in the main building where the lobby was.  There was a quick meal grab area, and a quick serve restaurant in that area as well.  Each Caribbean location had it's own pool area and beach type area.  There was another quick service dining location in Trinidad. 

When you book a Disney trip and stay on grounds, everyone in the family gets a magic band.  It was fun to let the kids choose their colors and very magical when they arrived a few weeks before we left.  These magic bands are amazing!  Your meal plan goes directly on your magic band, as well as your credit card (for purchases in needed), your fast passes for rides, and your room key. 

This is the amazing part.......as soon as I got the magic bands at home, I "checked in" on the resort.  When I checked in, it asked me some questions about our room choices.  I basically said I don't care where I stay, and just prefer to have an early check in since I knew we were arriving before the 3 pm check in.  When they have your room ready, they send you a text stating that it's ready, which Caribbean location you are in, and your room number.  We got a text stating that we were staying in Aruba, with our room number.  It allowed us to bypass the lobby and go directly to our room.  We scanned our magic band on the door and walked right in.  It was a cute little quaint Caribbean room.  It reminded me and Jeremy of our honeymoon to Jamaica.  It was clean, smelled great, and had lots of drawer space.  Just FYI, the shower is equipped with a shampoo, conditioner, and body wash dispenser.  They also provided lotion.  I grabbed that lotion up and put it in my backpack to take along with us the first park day, and they replaced it with another.  We loved the products!

We ate at both restaurants at Caribbean Beach, and also got some snacks from the quick meal grab area.  They were all great, and did an amazing job handling Macy's gluten free diet.  That was my biggest concern when I booked our trip, and that fear was quickly erased when her first meal arrived on it's own tray with an allergy stick in the top of her burger. 

We would recommend the Disney buses as a means of traveling to and from the parks.  Each Caribbean area has a stop right out front.   The Disney app (that you link to your vacation), tells you the bus schedule, and when the next bus is coming to your designated bus stop.  It helped a ton!   The only downfall we found at our location was, that when returning to our resort from a park, Aruba was the last stop.  However, it was the last stop in the morning too, which meant we left Aruba and went straight to the park. 

The Quick Service Meal Plan and the Mobile Dining

Like I said we purchased the quick service meal plan.  I did this for a few reasons.  1.  We paid in advance when we paid for our trip.  2.  We didn't have to carry cash or even look at the cost of meals when dining  3.  It gave us that "all inclusive" feeling. 

The QS meal plan allows for 2 meals a "day", and 2 snacks a "day".  When I booked originally my biggest questions were: Is it worth it?  What constitutes a "day"? 

Yes, it is worth it. Not only for convenience, but cost-wise.  If you are the type of family that shares meals and brings your own snacks, it might not be.  However, our girls are too big for meal sharing and I didn't want to mess with the snacks.  And let's just be honest, Mickey Bars and Dole Whips are AMAZING, we couldn't miss out on those.  So this is what I figured up....the cost that Disney's figures show is that an adult day (2 meals and 2 snacks) totals about $52.   I figured up that our totals were on average about $55-$60.  If you are an adult, you can have an alcohol drink with your meal instead of a soda or water.  Most beers cost about $10 each.  For your snacks, you can choose a snack like a Mickey Bar, Dole Whip, Popcorn, etc, or you can choose a drink if you don't want food and are just thirsty.  Some people use their snack credits for a quick breakfast grab (that qualifies as a snack not a meal).  There is a diamond symbol next the items that qualify for a snack. 

What does a "day" mean?  It's actually a per "night".  So if you stay 3 nights, you get 3 "days" of meals and snacks.  If you stay 4 nights, you get 4 "days" of meals and snacks.  We stayed 3 nights, so each person had a total of 6 meals and 6 snacks.  We planned to go out to a non-quick service meal at Disney Springs 2 different nights (which means we have to pay out of pocket for those meals), so I had to rearrange our meals and snacks, and it actually worked out better. 

This was our plan: 
Sunday:  We arrived at 1:30 p.m., so we had a late lunch at the hotel (1 meal credit), out to dinner at Disney Springs @ Raglan Road (paid out of pocket).

Monday (Magic Kingdom): Ate our own breakfast in the room, mid-morning snack (1 snack credit), lunch at QS restaurant (1 meal credit), afternoon snack (drinks) (1 snack credit), dinner at QS restaurant (1 meal credit), evening snack during firework show (1 snack credit). 

Tuesday (Animal Kingdom): Ate our own breakfast in the room, QS late-lunch at resort (1 meal credit),  out to dinner at Disney Springs @ The Boathouse (paid out of pocket), late-night snack (1 snack credit). 

Wednesday (Hollywood Studios): Breakfast in Star Wars area (1 meal credit), mid-morning snack (1 snack credit), QS lunch (1 meal credit), and a mid-afternoon snack (1 snack credit).

It worked out perfectly, and all of the food was great!  Which brings me to the Mobile Order App.......it was the best thing ever!  The Mobile Order was on the Disney App that you download and connect to your vacation.  Your food credits are right on the app so you can check to see how your credits are being used, and how many you have remaining.  The Mobile Order section on the app allows you to order right from your phone, skip the line, and pick up your food from a special window.  We would order our food while in line at a ride or waiting for a show to start, passing the phone around and letting everyone choose their meal (gluten free options were marked on the app), and then when we got close to the restaurant or arrived I would hit the button that said "I have arrived, prepare my meal".  We would then find a table, get napkins, condiments, etc, and then they would text me to say that the meals were ready.  We completely skipped all of the lines!  It was amazing! 

Fast Passes and Park Visits

I read a lot of blog posts through Pinterest on how to make the most out of the fast passes.  In short, I was able to discover that there is a good time frame to schedule your fast passes, and certain rides that you shouldn't use the fast passes due to availability and cool scenery that you might miss when you go through the shorter fast pass line. 

You get 3 fast passes per park/per day.  So here is what I did....I scheduled the fast passes between about 9:30 a.m. and 3:00 p.m.  FYI, you get a 1 hour window to use your fast pass, which gives you a a little wiggle room for fitting rides or character visits in between.  Also, if you stay at a Disney resort, you get to attend "Magic Hours" which means they open the park early or close it late and only allow Disney resort guests during those times. 

We arrived at each park 30 minutes prior to the Magic Hours, and then went straight to the rides that were the busiest.  We did not fast pass these rides, but rather used those fast passes at other popular rides throughout the rest of the day when the park was busier.  Also, if you have a young child, or like in our case a child with medical conditions, that can't ride specific rides, you can do what is called "ride swap".  So you have 2 choices as to how you want to ride swap.  1.  Wait in line together, and swap (1 adult/other children ride, while the others wait, and then swap).  2.  The riders wait in line together, while the other 2 go do something else, and then you get to swap after they come off the ride and go through the fast pass line for the next riders.  Just make sure you talk to the workers as you enter the line.  Some parks make you wait at the entrance to swap and others allow you to wait together in line and swap inside.   In our case, 1 of us stayed with Macy while the other two rode the ride, and then we swapped and the parent who waited then rode the ride with McKenna.  McKenna loved it because she got to ride the rides twice.  I found that even though Macy couldn't ride some of the big roller coasters, it was smart to get the fast passes for them because then she had a lesser time that she had to wait on us to ride those rides. 

At Magic Kingdom, we went straight to the Seven Dwarfs Mine Ride (because it is by far the busiest), then went to many other smaller rides like Peter Pan, Under the Sea, It's a Small World, and Tomorrowland Speedway.  We then fast passed Pirates of the Caribbean, The Haunted Mansion, and Space Mountain.  **Once you use all 3 fast passes for the day, you can do 1 more fast pass** So after we used our three fast passes, we then did a fast pass for Buzz Lightyear.  In between those fast passes we fit in snacks, lunch, dinner, a couple character visits, and then other rides like The Jungle Cruise, Barn Stormer, Big Thunder Railroad, Mad Tea Party, etc.  We were even able to fit in some shows such as Carousel of Progress, The Hall of Presidents, and The Tiki Room.  It was all thanks to the Magic Hours and well-spaced Fast Passes.  I printed a map prior to our trip and mapped out when we would be in which area, and what we would visit while in each area.  Don't forget to pencil in the parade at 2 pm, and fireworks at 9pm.  Those are amazing as well!  We were there a full day!!!

At Animal Kingdom, we went straight to Flights of Passage (the Avatar Ride), and then did the fast passes for Expedition Everest, Navi River Journey, and Kilimanjaro Safari.  We rode all of the rides, and got it all done by about 1:30 p.m.  We then spent the rest of the day swimming at our resort, and having dinner at Disney Springs. 

At Hollywood Studios, we went straight to Star Wars Galaxy Edge, and rode the new Star Wars ride.  We then used our fast passes for Rockin' Rollercoaster (the Aerosmith ride), Tower of Terror, and The Indiana Jones Stunt Show.  We enjoyed all of the other rides and saw a few shows.  We were there until about 3 p.m. 

Other Thoughts

If you want this type of schedule to work, you need to make sure of a couple of things.......arrive 30 minutes prior to "magic hours", download and use the app, and make sure when it comes time to select your fast passes (60 days before your trip), that you are online right when you can select them, and be ready with a list of rides and time frames that you want to do. Also, if you get to a park and decide to ride a ride that you have a fast pass ride for later, you can go back in your app and modify that fast pass and change it to another ride.  You can always modify and change rides or times.

Also, when you stay on resort, they give you a free drink mug that you can refill at anytime.  We found it was pretty useful especially at the resort.  We could refill with soda, lemonade, sweet tea, and water.  We didn't find them as useful at the parks.  After toting those around in our backpack all day at Magic Kingdom and not using them, we didn't take them to the other parks. 

If you have young children and worry that they may need to go back for rest time or a nap, it is very easy if you stay at a Disney Resort.  When they bus you in, you bypass the monorail and boat, and they take you right to the gate.  So it makes it very easy to come and go. 

There are many great restaurants at Disney Springs.  When the girls were younger we went to T-Rex and The Rainforest Cafe.  This time we went to Raglan Road and The Boathouse.  We have loved all of these restaurants!  There are so many shops (like The World of Disney) and nightlife at Disney Springs.  So I highly recommend checking it out as well on your trip. 

I hope I covered all of the awesome tips that I found when hunting myself, and can help you make the best out of your money and time if you decide to book this AMAZING trip!

6 States in 2 Weeks!

Yes!  After Thursday we will have traveled in 6 states in the last 2 weeks.  Crazy!

We just finished an AMAZING trip to Florida, but I am going to save that story for another post.  It was such a smooth vacation, and I want to share in case it can help anyone else have a seamless vacation as well! 

I wanted to post today to do a medical update, since it's been quite some time.  First off, Macy is doing fantastic!  She feels good and looks good!  However about a month ago, we went on a little adventure for a few days, but everything turned out okay.  It all started with a phone call from the nurse at school stating that Macy just didn't "feel right", and that her heart rate was lower than usual.  I rushed out of school, and took her to the pediatrician.  They did agree that her heart rate was lower than usual, but couldn't see anything else unusual going on.  They just told me to watch her.  We went home, and she seemed to feel better as the day went on, so I sent her back to school the next day.  By 8:30 a.m., she was texting me saying that she wasn't okay.  I called cardiology and our team in Chicago.  Both teams wanted us to take her to Riley Hospital.  So Jeremy and I rushed out of work again, and took her right there.  They did some lab work and an ekg.  The ekg came back with some variances which can by typical of a child with Tetralogy of Fallot.  However, he wanted to look further into it and ordered a 24 hour holter monitor.  She wore it to school the next day.  The results came back good and so did her blood work.  By the end of the week, she was feeling back to herself.  So who knows????  I am just thankful it was nothing!

The next week she had a planned MRI.  We had it done at Riley since Chicago was unable to accommodate our schedule.  It went great, and I really liked the process at Riley.  They stopped and restarted a few times which broke up the long process for Macy.  It was a battle getting the images sent to Chicago, but we got it all worked out.

They finally got the images last Wednesday.  Dr. Superina said everything looked very good!  Just like her ultrasound showed in July, it looks like she might have a little narrowing in her Rex Shunt (the vein from her neck, that he placed in her liver).  He wants to do a venogram to make sure that the pressures all still looking good and then determine if they want to do a little ballooning to make that narrowing a little larger.  So we'll head up there this week for this procedure.  If they just do the venogram she will be outpatient, if they do the angio (ballooning) they will keep her inpatient overnight for observation.  We then see Dr. Superina and his team the next day. 

Due to her being on Coumadin (a blood thinner), we have a special process of transitioning her to another med so that she can safely have this procedure done.  It required us to stop her oral Coumadin medication and start an injection blood thinner.  The injection has to be done in her stomach twice a day.  Now, I'm a pretty medical-savvy mom, and I've seen and done things to my child medically that's pretty crazy.....but I HATE giving these injections to her.  She's a trooper of course!  I am not sure if it's because it's in her stomach or whether it's because you can clearly see the needle (unlike her growth hormone injections).  I have seriously had so much anxiety over this.....I keep telling myself to pull it together, lol.  Anyway, we only have to do these through Wednesday morning. 

We are praying that she does not need the angio and that all pressures in her Rex look good.  We are praying that Dr. Superina gives her the okay to stop the Coumadin for good!!!  Please pray for these things.  Most importantly, pray for Macy as she undergoes her 33rd surgery.  Thanks for checking in our us, and we always appreciate the continued prayers!

More Adventures for The VanVleets

We are doing great!  We are all just getting back into the swing of school.  Macy is in 8th grade.  She loves being the oldest in the building this year, and so far she loves all of her teachers.  McKenna is in 4th grade, and loves her teacher so far as well and all of her classmates.  I am in my 17th year as an educator.  I forget every year how exhausting kindergarten kids are at the beginning of the school year!  I was blessed to have my mom volunteer for the first two days of school.  It would've been so much harder without her.  I keep hoping she wants to come down again soon to spend a few days volunteering....hint, hint.

I am so proud of my hubby!  He got a promotion at work, and moved up 2 levels.  He is still an engineer with the same company, but has a little more responsibility and a pay increase.  Woohoo!  He works hard and deserves it!

Macy is doing great things!  She will be returning to Girl Scouts again this year.  Her troop does amazing field trips and community service.  She is also continuing with student council this year, which she absolutely loves.  This fall/winter, she will be competing on an all girls robotics team.  They are known as the Bazinga Bots.  We can't wait to watch these girls compete! Her biggest news is that she made the middle school golf team again!  Golfing is where she is the happiest, and I can't wait for the season to officially kick off off this week!

McKenna is also keeping us very busy.  She is currently playing travel soccer for Circle City Futbol Club.  She will also be playing travel softball for Indy Lightning.  This is mainly in the spring and summer, but our newly formed team will most likely play in 1 fall tournament.  She also recently made our township travel basketball team, in which she will be playing in the winter.  She told me that she wanted to look into student council at school, and is also interested in The Girls on the Run club.  This kid loves to be busy playing sports!  She described herself, on a back to school project, as a tomboy, lol.

We have scheduled some upcoming medical appointments.  Lurie Children's Hospital could not accommodate our fall break dates for her MR, so they are allowing us to do the MR at Riley Hospital here in Indy and send the results to Lurie in Chicago. She is having that done at the end of September, and then we head to Chicago in October.  If we need the venogram to balloon her vein, we will do it then.  We then have an appointment to see Dr. Superina the following day. We are praying it all works out so that Macy doesn't have to miss much school. 


Overall, we are good!  Actually, we are busy, lol!  That might be a better word to describe our lives.  As long as we get to live it together, we are happy!   We love continued prayers for Macy's health, and prayers for our upcoming appointments timeline to work out.  Thanks for checking in on us!

Chicago Visit & 3 Month Check-Up

We headed back to Chicago for a few days for some medical tests and a follow-up visit with Dr. Superina.  When we are there for surgeries we don't get to have much fun, so we decided to throw in some fun while there this time.   We've been to Chicago many times, and seem most of the touristy things, so this time we went back to a few of our favorites.

We stayed downtown in the historical Warwick Allerton Hotel.  It opened in 1924.  It is officially a historical landmark in Chicago.  As cool as that sounds, the rooms were small, and it seemed a little dated.  However, I think it's supposed to be that way, lol.  I could see this hotel out of Macy's ICU room during our last stay.  I stared for hours at the sign on the back of the hotel that said "Tip Top Tap".  I wondered and wondered about what it was like inside, and how much fun all of the guests were having.  Were they heading out to a show, were they drinking cocktails and having appetizers.  I pray for the the mother in that ICU room today, who sits and stares. 

On Monday we had some tests at the hospital and spent most of the morning there.  Afterward, we headed to The Navy Pier for some fun!  We spent the afternoon exploring the pier, and making fun memories.  We headed out to dinner at Macy's favorite restaurant, The Cheesecake Factory, and then ended our night watching The Blue Man Group.  Jeremy and I have seen them before, but the girls hadn't, and they absolutely loved the show!  

On Tuesday, we headed to the Willis Tower.  It's 103 stories tall!  We enjoyed going out on the Sky Deck to get a crazy view of the city.  I think I was the most scared.  Macy, who is normally extremely scared of heights, did great!  She was ready to get off of the Sky Deck after the pics, but otherwise did great.  McKenna had no fear!  We explored more of the city, and headed to one of our favorite parks, Millennium Park.  Seeing The Bean never gets old!

We ended our trip with a visit to Dr. Superina and his team.  Macy's tests showed that her shunt is open!!!  Yay!  Labs were pretty good overall.  We got back in October for our 6 month check-up.  At that time she will have an MR to get a better look, as well as more labs.  We will also have a scheduled IR appointment for the next day.  IR stands for Interventional Radiology.  This is the team that performs Macy's venograms.  Macy's Rex Shunt has great overall blood flow, however it is a little narrow at the top.  Think of it like an arch.  It was placed in that way due to her abnormally shaped liver.  It is a little narrow at the very top of the arch.  It has been like this since placed, so it's not like anything has gone wrong.  In order to get the best out of her shunt, it would be best to have this area a little bit bigger.  There are two ways for this to happen.  1. It grows a little wider on its own over time.  2.  The IR team goes in through her neck, like a venogram, to balloon and stretch it a little bit.  

So when we return in October, if the MR shows that the area hasn't gotten wider on it's own, they will go in the next day to make it a little bigger.  If the MR shows that the shunt has gotten wider, we will go home.  So for now, she continues on her Coumadin to keep her blood thin, which has been the plan from the beginning (for 6 months total).  The goal is to keep that shunt open and flowing!   They were very pleased with her!  They said she looks great!!!  

I hate the thought that she might need another procedure, however if it's to fine tune her shunt and make it overall better, then we understand if it needs to be done.  We are so happy that we had a good visit!    Please continue to pray for an open and flowing shunt.  Please pray for the narrow area to grow wide enough on its own.  Please pray for Macy's safety as she continues on Coumadin.  Thanks for checking in on us!

The AMAZING Dr. Superina!

Last week, the mother of another Abernethy patient interviewed Dr. Superina in an Instagram Live Q & A.  It was an hour long interview, with some wonderful questions!  I decided to summarize the interview here to highlight some of the material that I thought was interesting.

• Dr. Superina became a surgeon just by fate, it wasn't some long thought out plan since he was a child. He would've rather been in the operating room rather than making rounds.  
• As a hub in the U.S. for Abernethy patients due to his abilities, Lurie Children's Hospital in Chicago has only seen about 70 cases total due to how rare it truly is, but only operated on 17 patients.  Macy is one of those 17.  For perspective, he compared this to the billions of gallbladder surgeries that have been completed.  
• An ultrasound is the most common way to diagnose Abernethy Malformation.  In some cases, they also do CT scans and MRs.
• He believes the cause of Abernethy stems from the cardiovascular development.
• Physicians used to believe that Abernethy didn't need treated, however we know now that it does.  Before corrective surgery, the blood is not filtered by the liver due to a lack of blood traveling through the liver.  Therefore, patients have an underdeveloped liver, possible liver tumors, high pressure in the lungs which can lead to heart problems and breathing problem, failure to thrive, and high ammonia levels that impair clear thinking and the inability to process thoughts.  It is a very hard disorder to diagnose because these symptoms don't necessarily warrant a physician to think it might be Abernethy.
• The first patient that he saw had an associated liver disease that needed a transplant.  He had never heard about it or read about it before that.  There isn't much literature, but he is willing to help any physicians that need to know more.
• He would never recommend a liver transplant for Abernethy!  He said patients are still getting transplants for this.  Most patients that come to him have been told they needed a transplant, and are seeking more info themselves or a 2nd opinion.  This is our case!  We were told at age 2 that she would need a transplant, but found him by chance of a mother's blog trying to get the word out and seek info herself.  
• 25% of his Abernethy patients have some sort of heart defect.  
• Many patients also have lung problems.  
• He recommends treating it as soon as diagnosis.  Sometimes in older patients there becomes a time where the portal vein is unsalvageable.  
• He talked briefly about Macy's case of being an Abernethy Malformation patient and being transformed into an Rex Shunt patient.  He lit up talking about how they are excited about it! He said it is extremely rare. Essentially a Rex Shunt is for a patient who is born with a normal liver and normal portal vein (the vein that runs to your liver), but somehow their portal vein stops functioning.  Abernethy patients are born with very abnormal livers and very abnormal portal veins.  
• Blood thinners came up.......it is essential and should last for at least 6 months.  
• He does not believe that Abernethy Malformation is hereditary.  He has never seen it run in a family. 
• Meds and liver......we do not need to worry about meds harming the liver.  Alcohol?  There is no concerns, however no large amounts should ever be taken in any person.  
• They are starting some tests to learn more about cognitive abilities.  Many of his patients are diagnosed with ADD or ADHD.  In most patients, this is due to the Abernethy Malformation, and is not a true Attention Deficit issue.  It should get better over time after a repair.  
• He is working very closely with a hospital in Paris, France, as well as Japan to make Abernethy Malformation known world-wide.  
• Prior to corrective surgery, high ammonia levels are sometimes treated with medications. Other patients are given a low protein diet.  
• He travels the world to do this operation.  He has traveled as far as Brazil and Israel.  He said you need sophisticated equipment, which is why he is somewhat limited to where he can perform this procedure.  He has done surgeries in third world countries like Nepal to do other liver surgeries.
• They have not studied growth in Abernethy patients, however they have in Rex Shunt patients.  There is a correlation because when nothing is going to your liver to be processed correctly to feed the rest of the body. Corrective surgery usually helps growth.  
• He has trained many surgeons, but they often become general surgeons.  He has only trained 1 or 2 surgeons that are confident enough to do Abernethy and Rex Shunt surgeries.  

We head back to Chicago next week to see our Chicago team!  Macy will have an ultrasound, lab work, and clinic visit.  She told me that she is going to beg to come off of her blood thinners, but I highly doubt that will be the case.  She will most likely be on it until October, and then another blood medication for 6 months following that.  We are anxious and excited all at the same time!  She seems to be doing so well!  Please pray for great ultrasound results, good lab work, and a wonderful 3 month check up with the team!   

My Non-Guilty Summer Pleasures!

There are so many things that we can easily feel guilty about in life.  Eating that donut you know you shouldn’t of eaten, forgetting to send someone’s birthday card, etc.  Well, we are doing some things in The VanVleet House this summer, and I have decided that I won’t feel guilty at all.  We had a really rough year, and we just need to live life the best we can this summer!  Here are my top 10 summer non-guilty pleasures:

1. Sleeping in. It is the absolute best feeling to catch up on some much needed sleep!
2.  Letting the kids get bored- they get so creative and manage to make their own fun.  I refuse to be that parents that gives them nonstop entertainment all summer long.  Do we still have fun?  Absolutely, but they don't need to be entertained all of the time or me to provide it.  
3. Drinking as much green tea as I want.  Today I had 6 glasses, lol!
4. Watching all the different versions of the “90 Day Fiance” show.  There are seriously like 4 different versions of this show”90 Day Fiance, Happily Ever After”, “90 Day Fiance, What Now?”, etc. Yep, I’m watching them all!
5. Getting so into a book that I stay up until midnight or later reading.  And yes, I’ve fallen asleep multiple times with my Kindle still on, lol.
6. Drinking a beer with my hubby when he gets home from work while we cook dinner.
7.  Taking away electronics until the girls get their daily list of chores done.  We have some chores during the school year, but between homework and activities their chores are limited. This summer…… game on!
8. Not going into school each and every time that I remember something else I want to work on in my classroom.  I typically spend time weekly at school in the summers, and I haven’t done that yet this summer. 
9. Crafting to my heart’s content!  Last week I made 9 shirts using my Cricut.  I am continually coming up with new ideas for more that I can make.  It’s so much fun!
10. Not making plans!  We are trying our very hardest not to make too many plans, and we are taking a whole week off of life to do NOTHING at the lake house soon!  I can’t wait!

So what are you doing this summer for yourself and/or your family?  What are you going to let yourself do, and not feel guilty about it?