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!