What is Abernethy Malformation?

I have had quite a few people ask me what Macy's liver condition is, and how she was diagnosed.  So this is your fair warning that this is a medical post with lots of medical talk.  I also wanted to share a video with you about our doctor in Chicago, Dr. Superina. 

So what is Abernethy Malformation?

There are two types of Abernethy.  Macy has type 1, which is more common in females.  Type 2 is more common in males.  So in a "normal" person, your portal vein carries your blood to your liver, the liver cleans it, and it is then sent out into your body.  In Macy's body, her portal vein bypasses her liver, and the blood travels around it, not through it.  Therefore it is not getting cleansed.  We have been told that about 1/3 randomly makes it into her liver to get cleaned, and 2/3 goes out to her body without. 

How was she diagnosed?

In 2007, at 20 months old, Macy had open heart surgery to repair her Tetralogy of Fallot (heart defect).  Following the surgery, she had a very difficult time recovering.  During some labs, doctors noticed that Macy's liver enzymes were through the roof.  They did a bedside ultrasound to take a closer look, and knew something wasn't right.  At that time, they scheduled a CT once she was fully recovered from her open heart surgery.  We went back a few months later for that CT, and confirmed that things weren't working as they were supposed to.  At that time we scheduled a venogram.  In February 2008, at the age of 2, Macy had the venogram completed.  The surgeon confirmed our fears that is was Abernethy Malformation.  At the time, there were 30 documented cases in the world.  He told us that the only fix was a transplant, and that it would be done sooner rather than later. 

How did we make it 8 more years without surgery?

There was very little known about this condition when Macy was diagnosed.  As a matter of fact, our GI doctor at the time knew nothing.  When I asked for literature, he sent me stuff he googled off of the internet...things I had already found.  We ditched him for someone with more knowledge a couple years back.  At the time of the venogram when the doctor told us that we would have a transplant sooner rather than later, he didn't know much about Abernethy.  It is actually a rather slow progressing condition that slowing affects the patient.  We have been followed with labs every 6 months, mainly checking her ammonia levels in her blood.  They have been stable.

 

So why are we "fixing" her now?

More research has been done on Abernethy, and more patients have been diagnosed.  There are now more than 80 patients with Abernethy.  Sounds crazy to think my daughter is 1 of 80 with this condition in the whole world!  Our current GI doctor  knows more about this condition.  It slowly progresses and can affect many organs in the body.  More recent studies have shown that the long-term affects of not "cleaning" the blood and living with high ammonia levels will eventually cause damage to the lungs, heart, and brain.  It can also cause tumors to form on the liver.  Therefore, it is time to do something.  Any damage that is done already will be reversed following the "fix". 

Along came Dr. Superina.......

Before Dr. Superina, the "fix" was transplant.  They were still transplanting kids in 2008.  Then along came Dr. Superina who figured out a way to get blood flow to the liver without transplant!  I searched and searched the web attempting to connect with a family or someone who knew more about Abernethy.  That is when I came across a family who had a daughter with it.  They had started a blog about her Abernethy.  They were also trying to find help and connections as well.  Amazingly, Dr. Superina found them, and he fixed their daughter!  After that, I connected with this family, and brought research to our doctors at Riley.  Our GI doctor reached out to Dr. Superina.

What will this surgery mean for Macy?

It will not only completely "fix" her, but it will reverse any damage already done, start cleaning her blood, protect her organs from any further damage, and should start to allow her to grow properly.  Her liver is the cause of her not body not receiving the proper amount of growth hormones, which is why we inject her with them.  It's all connected!  This will be amazing for her!  I am not allowing myself to believe that transplant is even an option anymore.  She will be fixed through surgery, and she will thrive! 

This video of Dr. Superina says it all!  He says exactly what I need to hear! 

https://youtu.be/OKc7NWZ60j4

All That and a Bag of Chips

I just thought I would give you the low down on all the things we've been up to recently and a medical update.

Things are going good here!  We have had a trying and amazing month. 

Here is the gist of it in my amazing bullet-style!

• McKenna turned 6!  Her party was amazing...."Cupcake Wars".  The entire family that was present participated in a cupcake wars party, and used all the creative skills they had to decorate a cupcake.  There were some amazing results!
• We had an amazing experience at the WZPL 99.5 Request-a-thon for Make-a Wish.  Macy was invited to speak on the radio about her experiences.  We were given a tour of the studio by some amazing Make-a-Wish employees, got to spend some time with one of Macy's awesome wish granters, met the CEO of Make-a-Wish, and were blessed to share Macy's journey over the air!  It was amazing! 
• Macy's trip was fully funded, and we will be heading on her wish trip in March!!!!  We are beyond excited!  Macy has wished for a Disney Cruise, to meet Elsa and Anna, and swim with the dolphins.  We will be doing all of that and much, much more!  What a blessing for our family!
• We have hit some local events recently, such as the Ringling Bros Circus & Christmas at the Zoo!
• Unfortunately, Macy has been sick for much of the last month and a half.  It started in November with pneumonia, then a multi-day stomach virus, and currently a sinus infection that is causing some junky breathing issues.  We've had a lot of medicines, and round the clock breathing treatments, as well as some weight loss.  We are trying to pack those pounds back on!
• McKenna got the stomach virus too, but only vomited a few times.  After going to bed that night, she woke up with a sensitive stomach, but no vomiting.  We were so happy it seemed short-lived with her. 

 

 

Now, for the medical update.  Macy is continuing to do a great job with her injections.  We now have an okay through Eli Lilly for supplied medication for a year.  We have recently visited Metabolism/Genetics as well as Endocrinology.  They were both extremely pleased with her growth in height.  She is responding very well to treatment.  Last year, Macy only grew 1 inch the entire year.  She has now grown 1/2 inch since starting treatment!  We are amazed by this, and it's just going to get better.  Our endocrinologist said that we will continue to see growth in height, and weight will start increasing as well.  They all agree that the illnesses have caused her to lose weight, and that at this time there is nothing else to worry about.

 

We finally received a call from Dr. Superina's office at Lurie Children's Hospital in Chicago.  We have a date and more information.  We will head up there our second week of spring break, following Macy's wish trip.  We will be there for this initial appointment for 3 days.  Day 1 will be a consultation appointment with Dr. Superina, lab work, and a CT scan.  Day 2 will consist of a Venogram with contrast.  They will go through Macy's neck, and send contrast down to map the veins around and in the liver.  While in there, they will balloon her portal vein closed slowly while carefully checking to see that the blood is starting to flow as God intended to her liver.  The goal will be to balloon entirely closed and have good pressures in those veins.  This is be the tell all, as to whether she will be a candidate for the "fix".  She will be required to stay overnight in the hospital, and we will be discharged the next day.

I knew this day was coming.  I have had time to process this since this summer, yet I have had a very difficult week.  I haven't been sleeping thinking about the process and the what-ifs.  Those darn what-ifs get me every time.  Having a date set makes this all very real! This is a moment I have been concerned for since Macy was diagnosed at age 2.....and here it is.  I am holding on to my faith that God will put his guiding hands over the surgeons during those tests, and healing hands on Macy through those days.  I am praying for results that show a "fix" is the answer! 

Happy Life

We have been doing great lately!  Some things have definitely happened since our last post. 

In October, we headed to Florida to visit my parents and grandparents.  It was a wonderful week full of very special times.  My grandmother's ALS is progressing.  It was so wonderful for my grandparents and our girls to spend so much time together.  My girls loved hugging on Grandma, and they loved swimming with Grandpa.  When we left, McKenna cried and cried for Grandma Bettie.  She has since cried multiple times saying she misses her.  They sent us to Sea World as our early Christmas gift.  It was such a fabulous time!  I will cherish that time for the rest of my life!  Grandma was just moved into a nursing home yesterday.  So please pray for my grandparents, my parents, and my entire family.  It has been hard on everyone!  She is so amazingly tough!  That must be where Macy gets it!

 

 

 

About 4 weeks ago, we got a puppy.  At first I thought she was so adorable and sweet.  Now I am wondering what we were thinking!  Being that Tucker was 12 when he passed away, we forgot what a puppy was like.  Also, when Tucker was a puppy I had all the time in the world to work with him, give him attention, and train him.  I was on summer break at the time, and we didn't have the girls yet.  Our new dog, Penny, is adorable, but into EVERYTHING!  When we get home from work each day she runs around chewing on things, popping the heads off of our Christmas ornaments, and chasing the cats.  When she falls asleep each night we forget about her craziness and realize she is cute! 

 

Macy is doing pretty good getting used to her injections.  It is becoming second nature, although about 4-5 days a week she tells me she hates them as I am injecting her leg.  It makes me so sad!  We will head to Riley tomorrow to see our metabolism/genetics GENIUS of a doctor, and then head in 2 weeks to have a follow-up with our endocrinologist.  We are still waiting to hear back from the transplant clinic at Lurie Children's Hospital.  The only doctor that does the "fix" for Macy's liver was out on personal medical leave.  He should be back by now, but we haven't h
eard from them.  The plan is to visit them for our initial meeting, and initial testing in early 2016.  If Macy is a candidate, we will return 3 times for surgeries.

Macy's Wish for Make-a-Wish is still being worked on.  The Make-a-Wish Request-a-Thon is this week on Thursday and Friday.  They contacted us to see if Macy would be on the radio during the event.  She will be on there this Thursday (December 3rd) between 8 and 9 p.m.  This is such a cool experience for her!  We are so blessed!

The Truth Behind the Pictures

I normally don't create posts like this....I am not a negative person.  I always try to look at the best in every situation because if I don't our lives will be engulfed in negativity.  Our daily challenges will take over our happiness.  Our family is happy!  I want our challenges to be just that....a challenge.  Something we can overcome, something we can get past and move on together.  But sometimes the truth is there.  There are many times our family events "look" fantastic.  It appears we had a fantastic time.  Truth is...we probably did, but we faced many challenges during that event too.  I just chose to focus on the fun and happiness that we encountered during that event and share it with others. 

We have lots of hidden challenges in our family.  We have gotten so good at hiding our challenges from other people that even in public while a challenge is taking place, people have no idea.  Many of you don't know that when Macy was struggling with increased mucus following the removal of her trach and her unidentified asthma at the time, that I used to carry a puke cup in my purse.  Yep, a puke cup.  We wanted more than anything to be a "normal" family who could go out to dinner, that we took a chance every time we did.  She often got choked up during eating, and would either have to vomit into the cup or spit food out of her mouth during the meal into the cup.  We always asked for a booth so we could be semi-hidden from others and no one would notice.  To this day, we still ask for a booth for two reasons.1. it is just natural at this point, and 2. because when she is sick with a cold, we still sometimes face this challenge.

Well, our "normal" family day yesterday was another challenge.  Here are some pictures that I took from our day.  We went to the pumpkin patch! 

What you can't see from the pictures is that Macy has been struggling with respiratory issues for 4 weeks.  After 3 weeks we took her to the doctor.  She was started on an antibiotic, and we were told to continue around the clock nebulizer treatments.  By last Wednesday, after being on antibiotics for 6 days, she wasn't much better.  We took her back to the doctor and found out it was pneumonia, and they changed her to another antibiotic.  I would love to say we see immediate changes, but every illness is a huge challenge for Macy to overcome.  We have seen improvements slowly, and are still doing around the clock nebs.  We leave soon for Florida and wanted to get our annual pumpkin patch visit in  before we left.  We knew it wouldn't require Macy to do much physically since they take you to the patch on a wagon ride. 

So we gave her a nebulizer treatment before we left and headed on our way.  When we got there, the cool air started getting to her.  We hopped on the wagon ride.....it was just our family since we got there right when they opened.  We did that on purpose to avoid the crowd.  We took a couple of pictures on the wagon ride, and then it started.  Her coughing started getting worse.  I sat next to her and patted her back.  I tried to position myself in a way that might block the wind.  Finally I suggested that she put the hole of her sleeve up to her mouth and breath inside since it would be warmer air.  That is when it happened, she puked.  Half of the puke went down her sleeve, and then she pulled her mouth away from her sleeve and half went on the leg of her pants, part of the seat, and the floor of the wagon.  I know this is nasty, but once she put her sleeve down from her face, some was dripping out of her sleeve.  It was not chunky food, it was watery and snotty.  I know this is really gross, but it is our reality.  It was too cold to take her sweatshirt/jacket off, so I told her that I would "fix" it when we got to the patch.  I took my hand and brushed the watery puke off the seat. Don't worry I sanitized. 

When we got to the patch I feared the nice man would jump off the tractor and try to help us off, and either touch Macy's sleeve or see if hanging from her sleeve and on her pants.  So Macy and I hustled off the wagon.  The man said he was going to phone back up to the orchard to see if more people were waiting.  If no one was waiting up there, he would just wait for us while we picked.  I prayed that more people were waiting so I could "fix" our situation. 

Fortunately more people were waiting and he took off to go get them.  I took Macy sweatshirt, and crossed the field to an area that was somewhat grassy.  I had to turn her sleeve inside out.  It was full of snot.  Yuck!  I had it all over my fingers.  I was so happy that it was early enough in the morning that there was still lots of dew on the grass.  So I rubbed and rubbed her sleeve in the grass.  The outcome was a snotless, wet, muddy sleeve.  I rolled up both sleeves (thankfully most sleeves are too long on her anyway), and gave her the jacket back.  She was very hesitant to wear it, but she had no choice.  I reassured her that we could go straight home to get her a new jacket after we left the pumpkin patch. 

It was not over though, we still had to worry about the ride back to the orchard on the wagon.  Fortunately we made it back with no incident.  Poor Macy!  Regardless of the challenge we faced, I think she still had a good time.  So there is often a truth behind the pictures that I often don't share.  We are not a fake happy family....we are truly a very happy family.  We have just chosen to look at each challenge in our lives positively.  I honestly thanked The Lord that we were able to take our children to the pumpkin patch.  There are many families that can't afford to do things like that, or families who have a child too sick to do things like that.  We feel very fortunate, despite our challenges.  This is just our lives....challenges, happiness, and all!

It's Time!

I would love to say we heard back from our insurance company, and we were approved for Macy's injections, but that is not the case.  We have no word from them yet.  Fortunately the medical company that we are getting her growth hormone injections from is providing the injections free until we hear from our insurance company, even if we get a denial and have to go through the appeal process.  I got word on Tuesday, and the medication arrived on Wednesday.  Today (Thursday) the nurse called and she will be out on Saturday morning to train Jeremy and me for giving the injections.  Macy will be getting these injections at home, once a day. 

She has been too cute, asking me lots of questions.  She said, "It's going to be so good to finally grow and start to be more like the rest of the kids!"  Then tonight she said, "So, am I going to get 1 shot, grow some, another shot, grow some more?"  I said, "Well, it's going to take a little time Macy."  She is just so sweet! 

So our house now looks like a doctor's office....if it didn't truly look like that already.  I went ahead and cleared out a drawer for all of her new alcohol prep pads and needles. 

In regards to any liver news.....we haven't heard a word from the transplant doctor in Chicago.  If you know me, I am not a very patient person when it comes to moving things along for Macy.  I bet it will shock many of you to know that I have held back my urge to call them myself.  Now that I am writing this, I am seriously thinking I might just call to put a bug in their ears tomorrow, lol.  We would like to get some things moving along.  My goal is to get some testing accomplished in the next few months, but wait until after Macy's wish trip for any major surgery. 

Thanks for checking in on us!  We will keep you updated!!!

We Have BIG News!

We've known since day 2 of Macy's life that her medical complications are life-threatening.  There were numerous surgeries in which we held her tight, kissed her over and over, and handed her off to the doctors not knowing the outcome.  We've had multiple medical crisis episodes that have ended in rushing to the emergency room or calling 911. 

We've also known from early on that this is a lifetime battle she is in, with more surgeries, more complications, and more unknowns.  We have had many discussions amongst us and some of our medical professionals that Macy would qualify for Make-A-Wish.  Children with life-threatening medical conditions between the ages of 2-18 can qualify.  Well, earlier this year, Jeremy and I submitted Macy's name.  We met our wish granters, Kelsey and Mackenzie, back in Spring.  Macy told them all about herself, her interests, her likes, and her favorite things.

We are so excited to announce that Macy had chosen her wish, and the wish process is moving forward!  I can't wait to tell you more about her wish when we know more details!  It is going to be a once in a lifetime opportunity for Macy and a time for our family to put aside our doctor appointments, our medical concerns, and our unknown fears to just be a family!

Make-A-Wish is such a fantastic organization!  If you are looking for a fantastic organization to donate to, this would be it!  They are making a huge impact on so many children!  You can check out more at http://wish.org/

We will keep you updated! 

Just Hangin' In There!

Well the school year started.....and boy did it start off with a bang!  I have a couple of challenges this year, and feel absolutely mentally exhausted each night when I come home.  As exhausted as I am, I am so happy by the fact that I see progress in these children already.  I see so many changes taking place in their attitudes, behaviors, friendships, and academics.  I am going to continue to celebrate those small growths, and hopefully will be able to look back and see those big growths by the end of the school year. 

We are just hanging in there at home as well.  We have had some lengthy discussions with some physicians, and they are having lengthy discussions with each other as well.  One big thing that is taking place is that many of her doctors feel that the IGF-1 injections are not safe for Macy.  They have now stopped that process and are instead going back to pursing growth hormone injections.  All we know right now is the our endocrinology office has submitted the essential paperwork.  From what I understand is that it goes to the drug company who then works on an approval from insurance.  I am currently a member of a growth hormone deficiency group, and according to most of the families on there, insurance typically denies your claim the first time and we will have to appeal.  I have all the faith in our doctors that they will help us get this approved! 

After much discussion with each other and another phone call discussion with GI, we have decided to go through with all of the liver tests and possible surgery with Dr. Superina in Chicago.  We are waiting for a call from the office for our initial consultation.

McKenna is in full swing with her fall soccer season.  She sure has a lot of talent!  We love watching her games on the weekends, and Jeremy is having a blast coaching!  Macy gets pretty bored at the games and can often be found hanging upside down from her camping chair.  In Tooth Fairy news, McKenna just lost her first tooth!  She didn't know whether to laugh or cry.  

Macy is taking a break from golf right now, and is excited for her first Girl Scout meeting of the year on Monday.  She also joined the choir at school.  She has choir practice each Friday morning as well as 3 performances in the next few months.  She loves it!  For years I worried often thinking about how Macy might do getting into activities that would allow her to be part of a group.  And here we are with golf, gymnastics, choir, and Girl Scouts.  Each one is so unique for her in its own way.  A few weeks ago Macy had a great overnight camping trip for Girls Scouts and even learned a little archery the next day.  I think she might have a new sport!

We just planned a trip to Florida in October.  I want more than anything right now to see my Grandma Bettie.  As many of you know, she was diagnosed with ALS in the spring, but they believe she has actually been battling if for years.  Things are definitely getting more challenging for her.  It is very hard to hear about, and it breaks my heart to think about what she and my grandpa are going through.  So Jeremy, the girls, and I are heading that way in October for some time with them!

Speaking of my grandparents.....Grandpa Wayne just visited a couple of weeks ago!  My mom and Aunt Kathi flew to Florida to stay with Grandma while Grandpa hopped on a plane and flew here.  His first night here we went out to dinner, and then the next day he came to my school for a visit and lunch with the girls.  He read with my students during centers!  After that he spent an evening and overnight in Muncie with his brothers and then the rest of the time at the lake with my dad.  We headed up there for an overnight that weekend to spend a little more time with him.  It was wonderful!  My girls love him so much!!!! 

 

Thanks for all the continued prayers for our family!  We would love if you could add my grandparents to your prayer lists!  We'll keep you posted as new info arises with Macy!

We Are Facing Some Decisions

As of right now, endocrinology is working on getting us the IGF-1 injections.  We found out they are 2x a day injections, must be refrigerated, and have to be administered either 20 minutes before or after a meal.  We actually just got a letter from our pharmaceutical insurance stating that they received notification that we were to start getting the injections, but are waiting on some more verifications. 

However, we aren't sure we are going to go that route.  We had a very big appointment with GI today, and it looks like we are facing some big decisions.  GI's main concern with not "fixing" Macy's liver is the long-term effect it can have on her cognitively, and not so much worried about growth.  When your blood is not getting "cleaned" by traveling through your liver, it can cause your ammonia levels to rise, and cause some cognitive problems.  Ammonia levels should normally be less than 35.  Macy lives in the 90s and 100s.  This is very high, and not safe long-term.  So, Dr. Molleston feels it is time to intervene.  This is something I had a feeling was coming considering the long-term effects it can have for her brain, her lungs, and her growth.  It's just very hard to hear and think about. 

Dr. Marshalleck, is our Interventional Radiologist at Riley who performed a venogram on Macy in 2008.  Dr. Molleston, our GI said we could have him perform another follow-up venogram.  He would additionally do a ballooning, while in there,  to see if we could close the shunt and other veins in her liver would be able to receive the blood flow so that it would go into her liver properly.  It is a tricky procedure that measures pressures and has quite a bit to look at.  If it appears that her shunt can be closed, then we would most likely travel to Dr. Superina in Chicago (one of the only doctors that currently performs these repairs) to have him close her shunting in a 2-3 step banding procedure. 

So as of right now, Dr. Molleston has a call in to Dr. Superina to get his professional opinion about Macy's case.  She also had communications open between a few of our other specialists to touch base, and also get their opinions.  So if we go the "fix" route, and it works, Macy will not need the IGF-1 injections.   I don't know of the plan right now, if the "fix" turns out not to be an option.  I am not going to think about that....we are thinking positively! 

This was so much for Jeremy and me to take in this morning.  I kind of feel like I was in a fog the rest of the day.  It helped to talk with my mom and a friend at work today.  It helps me think things over when I blog as well.  Nevertheless, Jeremy and I have some big decisions to make.  Do we want the procedure for Macy?  Do we want to do part of it at Riley and part in Chicago?  Do we want to do it all in Chicago?  We also have lots of questions.  What are the main risks of the procedure?  Is it reversible if problems arise down the road?  Do we have to have a follow-up revision years down the road?  Is she cured?  I'm not going to lie, I'm worried.  I am worried that we may make the wrong decision.  I am worried that we may mess with something and cause more problems.  I worried what might happen if we do not "fix" this.  I am worried mostly about Macy....how will this affect her?  We will keep posting as more information comes.  Thanks for following our family blog and for all the prayers! 

5 Fantastic Places

 

What are your top 5 places, within reasonable driving distance, that you want to take your children?

It just so happens I have 5 places!  These are places that we would most likely never fly to, and can easily drive.  Considering that Macy will be 10 in January, I have set a reasonable goal to take the girls to all of these places before Macy graduates high school. 

1.  Mackinac Island- I went here when I was in elementary school and absolutely loved it!!!  The old town, the scenery, the carriages with horses, the ferry boats....it was all so neat, and I know my girls would just love it.

2.  Mammoth Caves- Located in Kentucky makes this a very quick and easy place for us to travel.  I loved going to the caves when I was little.  It cool, creepy, and awesome all mixed into one.  Macy is very cautious about most things, especially things that are deep, dark, and secluded.  I know this would be a big challenge for her, but I would love to watch her face this fear!

3.  Washington D.C.- I was in 5th grade when I went here, and thought it was very neat.  It is such an educational place, that brings so much American pride into your life. 

4.  Branson, Missouri- Neither Jeremy or I have ever been, but we have heard such wonderful things about Branson.  We hear it is a fantastic family place, and that is right up our alley!

5.  Gulf Shores- I went here as a young child with my family.  My grandma Bettie and I spent hours collecting shells in the ocean.  It is still such a wonderful memory! 

My Health Choices: What Works for Me

I am by no means a fitness expert.  I am not super fit, or skinny, or have an awesome body....boy do I wish I did, lol.  I am, however, a person who does care about my health.  When Jeremy and I first married we ran, hiked, rode bikes, and roller bladed together all the time.  We had only healthy food in our pantry and fridge.  It was just how we were!  Jeremy's sister often tells about the time when she was in high school and she stayed at our house while we were on vacation.  The closest thing she could find to a "snack" was yogurt.  She couldn't believe we didn't have anything sugary in our house. 

I got so sick during my pregnancy with Macy, and then had preeclampsia and was not able to work out.  So that part of my health was fading.  Then my healthy eating started fading as well.  After Macy was born, I was just trying to make it through the day.  During hospital stays we started finding comfort in sneaking down to McDonalds on the first floor at Riley, and getting milk and cookies.  We found comfort in running down in the morning to grab a hot chocolate.  Once home from hospital stays, there were many days that I came home from working full-time, had marathon feedings with Macy just to get her to take 3 oz., cleaned up her vomits 3 plus times,  suctioned her trach  20 times in one evening all before putting her down for bed.  Knowing that I had to suction her again in the middle of the night, re-attach her leads from her monitors when they came off over night, and refill the water in her humidity machine at least once in the night, allowed me to think I deserved any snack I wanted!  This may be an excuse, but to this day I do think I deserved some kind of relief.  Relying on food probably wasn't my best choice, but at the time I had no other outlet.  After doing that for so long, you start to get used to eating that way....or allowing yourself to think you deserve that unhealthy snack,

I am not going to lie that I have struggled throughout the years with going through phases where I don't quite eat how I should or exercise like I should.  I'm human!  I have really been working on eating much better for a couple of years now, but exercise wasn't always a part.  In February, Jeremy and I decided it was a must!  We've been working out 6-7 days a week since.  It is hard, it is time consuming, and there are times that I don't feel like it.  Knowing that I have a workout partner and someone to hold me accountable has been such a critical piece to all of this.  Jeremy and I have been supporting each other on a daily basis.  We do our cardio workouts separate, and our strength training together. 

Here is what works for us:

We've done P90x, and still have the DVDs, so sometimes we use them for some of our workouts.  My mom also introduced us to Tabata style workouts and Fit Crew style workouts.  We do these as well.

Sunday: Choose from either a Core workout, Kenpo workout, or full body Tabata workout.
Monday: Cardio
Tuesday: Lower body strength training
Wednesday: Cardio
Thursday: Upper body strength training
Friday: Cardio
Saturday: Day off, or long walk

We try the best we can to stick to this schedule, but there are just some days that we have to switch things around.  We've had a lot of fun working out at the lake this summer.  We use the hill to do hill climbs and we kayak across the lake.  It's been a lot of fun to take things around us and turn them into a part of fitness.

One of the best parts about being physically active is that our girls often join in on our workouts.  They are so cute trying to do push ups, lunges, and weight lifting.  I want my girls to know that people don't just workout to look good, they workout as part of their total health!  I want it to be a part of their lives!

A Little Medical Update!

No pics this time, just a little medical update about Macy. 

Macy has been diagnosed with Severe Primary IGF-1 Deficiency.  This is different than a Growth Hormone Deficiency. This is a rare condition....1 in 10,000 to be more precise.  A person with Severe Primary IGF-1 Deficiency is smaller than 99% of their peers, has had a formal test for growth hormone deficiency and is producing an accurate amount, yet has an IGF-1 deficiency.  IGF-1 is Insulin-like Growth Hormone Factors.  We believe this deficiency is due to her liver malformation. 

Our endocrinologist found the supplement that they would like to start giving to Macy.  It is called Increlex, and is a 2 time a day shot.  Fortunately we will be trained by a nurse at our house so that we can prepare and give the shots at home daily.  We have started the process of getting this medicine.  This referral process can take months to get going.  The first step was for our doctor to fill out and send the application and paperwork for medical necessity.  This goes to the company, then through insurance, then back to the company, and so on a so forth.  Insurance could deny coverage, so prayers for coverage would help! 

We will still be visiting our GI doctor later this month to discuss her liver and if or what we need to do next.  Our endocrinologist is also discussing this new med with Dr. Hainline (our metabolism doctor), due to some side effects.  The main side effect is hypoglycemia (low blood sugar).  Well, Macy is already hypoglycemic, so we can not allow room for an additional drop in blood sugar, so we will need to tread lightly with this.  We will need a plan put in place, and we will need to monitor her blood sugar carefully.  At this point, I have no idea if this will be something we will have to do at school, or how often it will need to take place.  We will just wait for word from the doctors and go from there. 

This is very difficult for me for many reasons.  1.  I am not a patient person!  2.  I am a very detailed person when it comes to Macy's medical care.  3.  I worry myself sick about medical unknowns (literally sick).  4.  I am simply a mother, and just want the best for my child. 

Macy knows we are trying to find answers, but Jeremy and I have decided not to tell her anything until we know for sure and have a plan.  She has a lot of anxiety, therefore there is no reason to provoke it.  We will keep you updated as our questions are answered.  Thanks for continuing to follow us, and for praying for our family (particularly our sweet Macy). 

Our Saturday Full of Fun!

School starts tomorrow!  Yikes, I have a kindergartener and a 4th grader!  Last year before school started, we took the girls to Kings Island.  This year we decided to do something a little different.  We told the girls that we were going to have a day of fun, and each person in the family got to choose something fun we wanted to do.

Stop #1 McKenna's Choice

We headed to the IMA 100-acre park.  It has hiking trails, a lake, and lots to look at and do.  It was a blast!  Great choice McKenna!

 

Stop #2  Family Choice

 

We found a local park and had a wonderful picnic lunch!

Stop #3 Macy's Choice

Next, we headed to the town of Greenwood to the splash pad.  They had a park to play on, and a splash pad.  The girls even made a new friend.  It was so much fun!  Great choice for a hot day Macy!



 

Stop #4 Kristen's Choice

Then, we headed down to Columbus, IN to an old fashioned Ice Cream Parlor called Zaharako's.  It was beautiful, and the ice cream was very tasty!!!  Check out our ice cream sundaes.  I have never seen one like that before!!!  We were hyped up on sugar when we left!

 

Stop #5 Impromptu Family Stop

We left Zaharako's to head back to the car and noticed The Common's across the street.  It was an indoor facility for kids to run and play.  The girls loved it!

 

Stop #6 Jeremy's Choice

Next, we headed back north to Whiteland to Rascal's Fun Zone.  We rode go-karts, played mini-golf, and played some games.  We won lots of tickets, and the girls got to choose some prizes.  The girls loved it!

Our day ended with a trip to the mall for new sneakers and we picked up a pizza on the way home at about 8:00 p.m.  It was a long, fun day!!! 

Now I just have to get my mind wrapped around the fact that my oldest baby is in 4th grade, and my youngest baby is a big kindergartener!  Oh my!  Where does the time go?