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!