Fall & Florida

It's been since June since I've done an update!  Do you know what that means?  It means that we are living life and having fun!

The school year has started.  Both girls are doing great!  McKenna has another AMAZING teacher this year, and loves school so much! Following softball rec league, she made All Stars, and totally loved it.  She is now currently playing on a travel soccer team, and is having a blast!  Basketball is starting in the next couple of weeks, and Jeremy will be coaching again this year.  They are both excited to get started!

Macy loves middle school!  I was so worried about the change, but she's rockin' it!  Honestly, one of my big worries was having her in a different school building than me.  I loved the easiness of checking on her when needed, and having the school nurse call my classroom if they needed anything or had any questions.  She had some Celiac related stomach issues this year, and I had to end up leaving school to go get her and take her home.  It ended up being short-lived, so we were thankful for that.  She made the robotics team, and has her first competition next weekend.  She is also busy with Girl Scouts, Student Council, and horseback riding.

We just finished a two week fall break, and just returned from a very relaxing week in Florida.  It was so nice spending time with my parents, grandpa, and all of the family friends that live there.  Some of our highlights include; a couple of visits to the beach, touring an orange grove, taking the boat to an island named "Egmont Key", taking the girls to the greyhound dog races, Jeremy and I getting a "date night", and going to "coffee and donuts" in my grandpa's neighborhood.  It was a great trip!  We are so thankful for everything my parents did for us while we were there!

SO....I had this post typed for a Macy Medical Update.  I didn't post it because I was waiting on some lab work to come back.  I will first let you read the original post.....here it is:

So the most asked question is....."how is Macy medically?" She is doing great!  Actually, something really funny happened.  Macy had a dentist appointment a couple of months ago.  We left right after school, headed over to the dentist office, checked in, waited, and then they called her name.  She stood up to go back, and then the hygienist asked, "was Macy pre-treated?"  Ummmmm....NO!  Ahhhhh!  I totally forgot to call the cardio or pediatrician for her antibiotic. I have NEVER done that before.  I could not believed I dropped the ball on that!  They did x-rays and a check, but no cleaning, and we had to return the next week, "pre-treated" for her cleaning.  I was so mad at myself, and complained about my failure to Jeremy and my mom.  I was on the phone conversation with my mom, that she said something that turned my thoughts about the situation around. She said, "you realize what that means, right?"  I thought about it, and I responded with, "no".  She said, "you actually thought of Macy as "normal".  I DID!  I DID!  I thought I was just taking my "normal" kid to a dentist appointment.  That was a great feeling to know that we are in such a good place right now, that I wasn't consumed by her medical life.  These breaks are appreciated!

We just had labs done this week.  The lab screwed up and didn't take all the labs, so we had to go back to get them finished.  Grrr!  But thankfully she is a champ at lab draws.  They are running CBC and Ammonia levels.  This will give us a glimpse of her liver health. We will head back to Chicago in December for an MRI.  I am always nervous during test times, but I never try to predict.  What I do know is that Macy seems really good right now.  She seems healthy, happy, and growing! 

So now for our update....just a few days later.

I thought Macy was doing great!  Don't get me wrong....she seems good.  Inside however, things don't seem to be going so well.  Many of Macy's labs came back abnormal.  I just found out on Sunday.  I touched base with Chicago today about a plan.  The main concerning labs were her low platelet count, low white blood cell count, and high ammonia levels.  She had a few other too low, and too high labs as well, but not too much that points in the directions of liver and spleen health.  However, the platelet count, white blood cell count, and ammonia levels might very well be telling a story.  It is definitely concerning.  Among the unique Abernethy patients like Macy, the team in Chicago has seen worse labs.  However, her labs are worse than in January.  Strange that things seemed to improve in June and worsen again.  This definitely caught us off guard.  I was expecting great labs...as you can see from my original written post.  This just sucks!  Can't this kid catch a break?

So the plan is to watch her closely.  If anything changes with her energy level, mental state, etc. we will need to do something sooner.  Otherwise, more labs in November and MRI in December.  So fortunately we haven't moved too far from the original plan, but we are living the next couple of months with a little more caution that we planned.

Jeremy and I have chosen not to worry Macy with the change in blood work.  If more changes occur in November, we will let her know then so we can prepare her for possible intervention if we need to.  Until then, we are going to think positive thoughts!!!

Pray, pray, pray for improved labs and good news during from the MRI in December!

As always, thanks for checking in on us!

Here's The Plan.....

First of all we want to thank everyone for all of the prayers during our recent visit to Chicago.  We've had 2 venograms before.  The first was in 2008 to make her Abernethy Malformation diagnosis.  At this one, they told us that her portal vein was absent.  They also proceeded to tell us that she would need a transplant, and that she would need one sooner rather than later.  I knew deep down, that The Lord had different plans for Macy.  From 2008 until 2015, I searched for answers.  Along the way, I met a mother who started a blog to find answers for her daughter, also diagnosed with Abernethy Malformation.  She found an answer...his name was Riccardo Superina.  I talked with her multiple times about the repair he had performed on her daughter.  I knew that when the time came, he was my man!

In 2015, multiple specialists caring for Macy expressed concern for her health.  We all collectively decided it was time to do something.  Our amazing GI doctor at Riley sent us to see Dr. Superina in Chicago.  We first made contact in 2015, and planned for another venogram in April of 2016.  At this venogram, they made the amazing discovery that Macy did have a portal vein.  This was one of the most amazing blessings that Jeremy and I have ever received in regards to Macy's health!  We rejoiced and cried at the same time!  Her portal vein was the size of a thread, and was carrying no blood to the liver.  The blood was going around her liver through another area (a shunt) that was not supposed to be there.

The decision was made in 2016 to perform a surgery to repair her liver.  In a matter of 18 days, Macy had 2 surgeries, was completely paralyzed for 5 days, and spent weeks in the ICU.  We then spent months recovering, as well as 9 months on a therapeutic dose of Coumadin (blood thinners).  During those 9 months, Macy had to have weekly, bi-weekly, and monthly labs draws.  We finally came off of the Coumadin in January 2017, and had another CT Scan.

Unfortunately the CT showed an enlarged spleen and many small veins running to her liver rather than 1 large vein (portal vein).   This means that not enough blood is getting to her liver, and is backing up into her spleen.  This was causing her platelet count to drop as well.  Basically, Macy was in portal hypertension.  The only fix is another surgery called the Rex Shunt.

This brings us to our most recent venogram.  This venogram was to check the veins running to the liver, and check the pressures in the portal vein area.  During surgery, when they went in through her neck, they were able to get some information, but not all the information needed for our doctor.  Therefore, they had to unexpectedly go in through her stomach and poke into her liver.  This causes an increased risk for internal bleeding.  The worst part is, they still didn't get all the info they needed.  They had to watch Macy closer and longer than the original plan and check her hemoglobin levels multiple times before they could send us home.  We finally went "home" to the Ronald McDonald House.  She was actually doing way better than any previous venograms.  We were able to attend a party on the 4th floor at the house to celebrate the 5th year anniversary of Ronald McDonald House location that we stay at.  Ronald McDonald was there, and they did face painting.  If Macy was feeling any pain, it definitely took her mind off of it.  So we left Chicago with no answers, and we had to wait for the phone call.

Waiting 2 weeks to find out the plan is very difficult!  I have to admit that I broke down and called twice, once last week and once this week.  Those that know me well, know that I live and breath Macy's medical life.  It consumes me......and it has for 11 years.  Things gets easier sometimes, and other times they get more challenging.  The last year has been a challenging one.

The news we received today is nothing short of a miracle.  As I said previously, Macy has been in portal hypertension, with blood backing up into her liver.....basically in need of another surgery.  The venogram was to basically confirm not IF, but WHEN the surgery would happen.  We knew we were going downhill.  WELL, the venogram showed blood flowing to the liver, and flowing with the correct pressures.  A normal pressure is 1 to 5, and Macy's is 3.  She is no longer in portal hypertension!  Macy's ammonia levels and her platelet count is in normal range!  Our surgeon's office told us "she appears to be turning a corner".  We do labs in 3 months to make sure we are still heading in the right direction, and will return for a visit (for labs and an MRI) in 6 months!  This is the most fabulous news ever!  We are so thankful for this break for our family, particularly for Macy!  She is so happy to continue her normal summer being a carefree kid!    

It's Summer Break....Woohoo!

We are into the swing of summer!  Well, I really hope the last week isn't a sneak peek of our summer.  Macy was sick, and it was NOT fun.  The illness really caught us off guard, and took a lot of work to get her back to "normal", but I think we are about there!  Yay for that!

So our summer started off in normal fashion, with a trip to the lake.  However, the weekend ended with us packing up within an hour, and driving home with a very sick girl.  No use in going into details, since I think we are on the mend.

So let's highlight some of our positive things from our first week.  We went to ENT for our tonsillectomy follow up, and Macy looks great!  They want to repeat a sleep study on her since her sleep study came back severe.  They said we could do that before school starts back up, so we will shoot for a day in July.  McKenna had two softball games this week, with the second being her first tournament game.  They won!  So we move onto Tuesday to play!  Yay for the Pink Panthers (yes, that is the name the girls came up with for their team).  She also tried out for All Stars yesterday.  She was trying out against all girls older than her....many 8 and 9 year olds.  She did a great job, but I will be surprised if she makes it.  Next year she will be one of those 8 year olds, so I think our odds are much better.  She had fun doing it though, and I was so proud of her!  We ended our first week with going out to dinner with some great friends, and heading back to their house for a campfire and smores.  It was a blast!

On another positive note, Macy completed the Red Cross Babysitting Course, and is now an official babysitter.  She even had her first job on Wednesday!  It may have just been for her sister, but it went very well!  I had to go into work for a professional development, and they were alone for about 4 hours.  They sent me a couple of text messages, and I sent them a couple too.  It went great!  Now maybe Jeremy and I can get a much needed date night.  We still haven't celebrated our 14 year wedding anniversary.  YES, 14 years!  It seems like just yesterday!  What an AMAZING 14 years!  When I say AMAZING, I mean AMAZINGLY good, AMAZINGLY challenging, AMAZINGLY scary, AMAZINGLY fun, and AMAZINGLY blessed!

So now, we move onto Chicago.  Our Chicago visit is this week.    Macy will undergo another Venogram to take a closer look at her pressures in her portal vein/liver area.  I honestly have no idea what to expect because it's about impossible to predict what is actually going on in there.  If liver pressures are high and concerning, she will face another liver surgery.  If pressures are not where we want them to be, but not too concerning, we will continue to wait and watch.  If pressures are good, we will be good to continue as is, and leave her liver to continue in the current state.  We pray for good pressures.  I may not know anything for about a week.

My parents are returning this week from a 15 day vacation in Tahiti.  Surprise, but no surprise they have made it happen to fly into Chicago, and stay with us to support us during our time in Chicago. They had plans to fly in there originally, but had different plans on actually returning home.  We don't know what we would do without them!  They are amazing!

After we find out what the plan is, we can start to make some summer plans.  If those plans are surgery, we will make it happen and still try to enjoy ourselves as much as we can.  If those plans do not involve surgery, then we have SO MANY things we want to do!  McKenna has a scheduled soccer camp, and Macy has hopes of continuing her horseback riding, and attending her first golf camp.  Please pray that we can be "normal" this summer, and my girls can do "normal" things that kids do in the summer.

I look back at my summers and remember lazy, fun days.  Just hanging out with friends, camping, exploring, etc.  I want my girls to have those memories, not memories surrounding hospital life.  We spent our summer like that last summer.  We need a break!  Please pray for this!  Please pray for us!  Please pray for Macy on Thursday!!!!!  Please pray for a fast recovery and good news!

Thanks for checking in on us!  I will keep you posted!

Here are some pictures highlights from our spring.

McKenna ran the Fast Flash....her first 5K.  She finished 2nd in her age division.  Her time was 29:01.  It was a 9:22 pace.

Macy danced with her Folk Dance Club at the International Fair.  Great job Macy!

Both of our girls earned awards at school, and had great academic years.  We are so proud!

Here's McKenna in softball mode.  She had to pitch out last 2 games since our pitcher was on vacation.  She did great!  I was so proud of her for stepping up to do that even though it was not her normal position, and she didn't feel very good at it.   

Macy's girl scout troop spent over a year collecting plastic bottle caps.  They put in an amazing amount of hours collecting and sorting.  They were able to have multiple "Buddy Benches" built from those caps, and dedicated 3 of those benches at our school!  Way to go girls!  They will be recognized in a few week at the Girl Scout Banquet for receiving their Bronze Award.

Swinging into Spring

Spring is here, and we have been enjoying some time outside.  We are hoping Spring doesn't go away!  We are loving this weather!

Softball is up and running, and McKenna has practice twice a week.  Games start in a few weeks, and she is really enjoying her softball season again.  Jeremy is coaching again, and has two other really good coaches helping with the team this year.  We are hoping for a great season!  McKenna was very excited to have me along on a field trip this week at school as well.  It made me so happy to spend the day with her!  We had a great time at the zoo!

Macy finally started back at horseback riding last week, and we are hoping to start her golf season soon as well.  She will be so happy to be back in the swing of things, even if it's for a short time!

We just finished our two week long spring break, and we spent one of those weeks in Florida.  We had a blast!  We visited a Big Cat Habitat that rescue many different types of big cats.  Our tour even included seeing a Liger.  They had a couple of really cool shows as well!  We spent multiple days at the beach with our feet in the sand, hands building sand castles, and jumping the waves.  Any free time we had, the girls spent swimming in my parents' pool.  The girls had a lot of quality time with their grandma and grandpa, as well as their great-grandpa.  We got to go with Great-Grandpa Wayne to his neighborhood for coffee and donuts.  It was truly a highlight of my trip!  I can't even begin to describe the feeling I get watching my grandpa play with the girls.  He doesn't just sit and watch them play, he literally plays with them.  He swims with them in the pool, pretending he is a shark.  He plays with them in the office pretending he is coming to their bank trying to get a loan.  He acts silly, and they laugh and laugh.  They will forever hold those moments dear!

We went to a few dinners at places that had great gluten free menus, and my parents did an amazing job at cooking gluten free all week.  Also, thanks to my parents, Jeremy and I got a date night.  We headed out to a restaurant that sits right on the shore.  It was wonderful!  I miss them already!!!! They encompass everything that parents and grandparents should be!  We are very blessed!

We've had some medical news since my last post.  We saw ENT in February.  They agreed that her tonsils are huge.  However, they were hesitant to remove her tonsils if it was not necessary due to it being a tough surgery and ANOTHER surgery to add to her list.  They requested that we have a sleep study.  When we finally got the okay from insurance, I spoke with the sleep center.  They informed me that they had an opening, due to a cancellation, for that night.  It was spring break for us, and it just made sense.  So Macy and I headed last minute to the sleep center, and spent one crazy, sleepless night staring at the walls.  Apparently she slept though because they called last week, and she is having Obstructive Sleep Apnea.  Therefore we go back to ENT this week, and we have a tentative surgery scheduled for May 8th.  They told me the normal recovery, out of school, is 2 weeks.  What?!?!?!  I freaked.  She can't miss two weeks of school!!!!  They said they have some kids return to school after one week, but I could make that call.  Oh my!

Macy's platelet count has dropped a little bit again.  If you recall, this is due to blood backing up into her spleen due to portal blood flow.  Like I said in my last post, we go back to Chicago in early June for her venogram.  We will decide if the revision surgery will be needed after those results.

On a very positive note, we had two fantastic appointments with two of our important specialists.  We saw GI a couple of weeks ago, and Macy's labs showed great celiac results (the diet is working), and we have been able to stop 3 meds!!!  Woohoo!  We also had a recent visit with cardiology, and Macy's heart looks great!  When I say great, I don't mean like yours or mine, but great for Macy.  He still thinks that we have many years until our next open heart surgery.  Yay!  We really needed to hear that!  He did say that we will be doing a 24 hour holster monitor next year since she hasn't had one since kindergarten.

We are getting very excited for the weather to change for good to springtime weather, and the girls and I are greatly looking forward to summer break!  Only a few weeks left of 1st grade and 5th grade.  I still can't believe how fast this school year has gone by!  Thanks for checking in on us!!!

What a Wonderful Indiana "Winter"!

Things are going pretty good here!  McKenna (and Jeremy) are finishing up basketball season.  She has made so much progress this year, and continues to make us both so proud.  We will have a few weeks off, and then softball starts.  Hopefully Jeremy will be coaching again this year.  He absolutely loves to coach!

McKenna also continues to do very well in school, and I take so much pleasure in seeing her school work come home.  She is so creative, and such an "out of the box" thinker.  Her writing is downright entertaining!   

We have also been enjoying the Indiana "winter".  We've been playing outside in the wonderful 60 degree weather!  Woohoo!  We hope this never ends! 

Macy has been knee-deep in Girl Scout cookie season.  She sold over $1,000 worth of boxes......over 240 boxes.  Cookie booths are up and running right now, and run through the beginning of March.  Poor girl can only eat 1 kind of Girl Scout cookies.  The Toffee Tastic cookies are gluten free, but she doesn't like them.  Therefore, we barely ordered any cookies for ourselves this year.  We are taking one for the team.

On the medical front, some things have changed since our original plan from Dr. Superina.  About a week after we left, I got a phone call from them.  Dr. Superina took Macy's case to the "big" team.  The collective opinion was to have Macy return late May/early June for a venogram.  The venogram is a surgical procedure.  She had one of these last April.  They put her under general anesthesia, enter through the neck, and travel down to the liver.  Once in there, they will measure the portal vein pressures.  The pressure reading will give them a great idea about how things really look.  This will determine if it is time for the next surgery (the Rex Shunt).  If they tell us we need this intervention, Jeremy and I have decided we will push for the next available surgery.  It's a lot to process, and I am going to be honest with you all....I really think we are heading toward surgery.  It scares me, worries me, and breaks my heart for Macy. 

When talking with Joan, Dr. Superina's nurse, I discussed getting a standing order to watch Macy's platelet counts.  She sent me one, and we took her last week to get her labs drawn.  Her platelet count has dropped again.  It's not in a super concerning zone, but low enough that we need to continue to watch them.  We will take her again in March for another lab check.  We will visit Dr. Hainline (metabolism) and our pediatrician this week for check-ups.  I am not expecting too much new info, but more as a means to update them on all that has been happening with Macy. 

On a super happy note, we leave next month for a vacation to Florida.  We are so excited to spend a week with my parents and my grandpa.  It is always nice to visit with my parents' friends while we are there too.  We don't have much planned, just lots of relaxation!  We all need it! 




 

Winter in Chicago

I'm going to start off this post with a little fun about one of our favorite cities!

5 Things I Learned About Winter In Chicago

EVERYONE in Chicago wears stocking caps. 

1.  They don't care about whether it smashes their hair down or not. Who cares about hair when it's freezing!

2. Walking the streets of Chicago to sightsee and shop isn't as fun in January.

3.  The horn honking epidemic is just as bad as it is in the summer time.

4. If you go into Stan's Donuts at 7 p.m. they have almost no selection.

5.  The Navy Pier is still a pretty cool place to go even when it's 22* outside!

I haven't been to Chicago in January in years....I think since I was about 13 or 14.  It is very different than summer, and we didn't get to do much walking around like we usually do.  Regardless of the weather, we were there for 1 main reason: to see check on Macy's progress!

So let me first tell you the AWESOME news! Dr. Superina said that Macy could stop taking the Coumadin.  If you recall, this is the blood thinner she was on.  We are so excited to stop this!  It will  open the door for many other food options that she couldn't eat before.  She was not allowed to eat any foods high in Vitamin K, and was restricted from foods that contain any Vitamin K at all.  This also will allow me to stop being a crazy overprotected mother due to being on such a high dose of the med.  I was always afraid she was going to hit her head or hurt something and have bleeds.  She will also no longer be able hit her sister and say "You can't do it back to me since I am on Coumadin!"  I figured we would have to reduce it slowly, but he let her stop it cold turkey.  Yay!


The main, and most important reason that we went was to have a CT scan.  This would allow them to get a better look at Macy's liver, and her other organs.  Macy's liver itself looks great!  Before surgery, her liver was small and underdeveloped due to a lack of blood flow.  Also the portal vein inside her liver was barely developed and super small.  Today, her liver size looks fantastic and the portal vein inside her liver is larger, and looks great!  Unfortunately the portal vein outside her liver that brings blood to her liver has not really developed.  Before the surgery there was nothing there at all (or at least one that could be seen in any imaging), and there was no blood flow traveling to the liver at all.  When they rerouted the blood, they hoped that one main vein would take over, grow, and become a portal vein.  Instead, Macy developed many small veins that are carrying the load of blood.  Due to this, she has become a patient with portal hypertension (this can often be the case following the surgery).  It is not too bad, and we do not need to do anything at the moment. However, it is currently causing her spleen to enlarge some, and her platelet count to trend downward (which was seen in her lab work). 

So two things can happen here:

1. Macy's veins could continue to grow large enough that the blood flow is entirely flowing appropriately and her spleen returns to normal, as well as her platelets.  Resulting in no intervention.

2. Macy's spleen could continue to be abnormal or grow more in size, and her platelet count could drop into an undesirable level.  At that point, an intervention would be needed.  That intervention would be another surgery.  It would be a major surgery again, completely opening the stomach, taking a vein from the neck, and placing it in as a portal vein.  However, it would not require her to be paralyzed again for multiple days, and she would wake up immediately following surgery.

Obviously we are praying for number 1!  We can't predict what will happen.  We return in 3 months for an ultrasound and more labs.  It's one of those wait and see things, and we may not have "answers" for a while.  Prayers are all we ask more!  Prayers for continued healing for Macy's liver!  Thanks for checking in on us! 

Goodbye 2016, Hello 2017

A rough 2016 might be an understatement for us, but I know many people who have had much rougher.  Such as co-workers, friends of my parents, some fellow medical friends that we have met online, and the list goes on!  Our year was rough, but we had many, many wonderful things happen! 

2016 has been quite the year to remember.  Even through the challenges and surprises, answers and hope have emerged!  Macy's most challenging surgery to date is showing great promise for her liver, so far avoidance of a transplant, and an increase in positive health. 

McKenna is continuing to show so much promise academically as a very smart, bright child.  Her ability to understand all of the academics presented to her, and look beyond them into more advanced concepts is amazing.  She couldn't have been placed in a more perfect classroom with a more perfect teacher. 

Macy has improved academically this year as well.  We have seen a huge change in her ability to retain the material presented at school, and I think there are many things that have contributed to that.  She has an amazing teacher, an amazing staff in the resource room who are teaching her some learning and testing skills for life, and her successful liver surgery.  Bringing her ammonia levels down from 140 to 35 has decreased some of the fog in her brain.  Homework time in our house is so much more pleasant, and she is learning how to "study".  We are so proud of her. 

McKenna continues to be quite the athlete.  She is continuing to play softball, soccer, and basketball.  Jeremy has been blessed with coaching her teams.  When you watch him with those kids, he amazes you!  He is so good.

Macy has taken on horseback riding, and it so good on her horse Raisen!  We have all learned so much about horses, and have taken to wearing cowboy boots and Carhartts while at the barns. 

Our most recent diagnosis of Celiac Disease is a life changer, yet brought some long searched for answers.  We are just learning to navigate the Gluten Free World, but we have some hope.  Macy appears to already be gaining some weight with the combination of the nutritional drink change, and the healing of her gut! 

So 2016 might have brought some challenges, but it is all about how you look at things.  So many posts that people post are sad, dreary, and have that "poor me" feel to them.  I strongly feel that life will remain sad and dreary if that is all you can see.  2017, please be good to us and those that we love.  Please continue to bring answers, hope, and continued improved health to our family.  Goodbye 2016, hello 2017!