Seattle, WA, USA

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Santa! I know him!

December 18, 2017

We had (what should be) our last clinic appointments of the year and are preparing for our first (somewhat) normal Christmas. Let's get right to it. 

 

For those of you obsessed with checking your fantasy scores...

Here are the final numbers of 2017: 

Height: 30.71 in/78 cm (almost 60th percentile!) 

Weight: 19.511 lbs/8.850 kgs 

Total surgeries: 1 

Total hospital visits for 2017: 5

Total number of livers: 2 

Med Count: 5

Total haircuts (despite my man-bun ambitions): 3 

Number of times we have seen Trolls: 5,696

Trending Movie: How the Grinch Stole Christmas 

 

The skinny on CMV 

In order to understand actions we have to take with Hudson, let me first give a quick background/overview:

CMV is a virus that almost everyone has in their system by the time they are an adult. When the virus flares up in someone like you and I, it would typically present itself like a cold. However, in someone with a compromised immune system, this virus can cause a lot of complications and if untreated, can land us in the hospital (typically with symptoms similar or leading to pneumonia).  

Hudson was CMV positive PRIOR to transplant. This means he had already been exposed to the virus. The transplant and infectious disease team saw this as a "pro" as his immune system was able to develop antibodies prior to transplant and being immunosuppressed. However, now that he is immunosuppressed, we have to watch for CMV flare ups and treat accordingly. During his labs yesterday, his CMV levels were about 6x's as high as they were previously. This helps explain why he has been sick since the beginning of December with continuing cold symptoms. 

So what now? 

We stopped his CMV medicine last month so this means we have to start it again. This isn't uncommon - especially for it being cold and flu season. We will start with giving one dose orally and do labs again next week to see if we need to up the dose to twice a day. 

Moral of the story: although things like colds seem simple or small to most people, it is very much something that keeps us on our toes. It is absolutely manageable, as long as we act quickly and continue to monitor. That is why we do frequent blood draws and clinic visits. 

 

End of A Chapter  

We have spent so much time talking about the liver over the past year that many of you might have forgotten that Hudson was diagnosed with heart defects when I was 20 weeks pregnant. When he was born, they confirmed that he was born with two small VSD's (small holes) in his heart. The blood flows and pressures were well balanced and the holes were so small that the cardiologists did not feel that they needed to take any immediate action but wanted to monitor. We were cleared for transplant (that cardiology didn't have any concerns) and directed to follow up when Hudson turned one. Fast forward to Thursday and the doctors officially cleared Hudson! This means we can officially conclude this chapter of Hudson's medical journey.

Getting the official gold star from cardiology was strange. Our journey with Hudson started with cardiology at our 20 week ultrasound when we found out Hudson had heterotaxy. We spent the rest of the pregnancy educating ourselves on heart defects and possible outcomes. We thought the heart was going to be the battle we had to conquer.  Being cleared was bittersweet because although we celebrate Hudson having a healthy heart, we are reminded that since Hudson was born, his heart was never the primary concern like we had originally thought and mentally prepared for. So, not only does our clearance by cardio mean we no longer have additional appointments, it means we are also able to finally conclude a chapter that started 17 months ago. 

 

This is Why We Can't Have Nice Things 

 In a two week period, Hudson has managed to go from exclusively crawling to standing, cruising and walking with a walker. He is a man on a mission and HATES sitting still. This has opened our eyes to all the baby proofing we have failed to do. Better late than never!

Other than walking, we are teetering between two naps and one nap a day. Some days it is wonderful and other days have me pouring a glass of wine well before 5 o'clock. To be continued...

 

When you hear the song, "Gold Digger" 

...You can think of Hudson. If he isn't crawling, his fingers are up his nose. 

 

Ho-Ho-Home for the Holidays

 

We are staying in Seattle for the holidays to avoid all the holiday travelers (aka germs). Although we are disappointed that we wont be able to spend the holidays in NY or CO, we are still making sure everything is bright and festive. 

 

 

 

The holiday season has always been my favorite time of year but it is even more special now. We feel like you all have become part of our family so we are able to celebrate this year with giant hearts and incredible appreciation. If you have not received a holiday card from us, it's because we don't have your address! Shoot me an email so we can continue to spread holiday cheer. 

 We hope everyone has a wonderful holiday season and know that we love you all! 

 

XOXO, 

Jordan, Morgan, Hudson, Dude and Jax 

 

 

 

 

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