Update on 2018...so far

I cannot believe that this is my first post in 2018!  That should tell you that Lucy is doing AWESOME from a health perspective.  So far this year, she has had some pretty high highs and some pretty low lows...I'm confident there were WAY more highs than lows though!!

HIGHS:
 - First Dance Recital
 - First Science Fair
 - Graduated from Kindergarten - how is my baby 6 already???
 - Family vacation to Pennsylvania - including Hershey's Chocolate World and the Turkey Hill Experience - so fun!!
 - Long weekend in Duluth - complete with Thomas the Train and a Water Park!
 - Swimming Lessons
 - Play dates with friends
 - Picnics in the park

LOWS:
 - Pneumonia (in June) :( (but a high point that we were able to treat at home and did not have GI issues with it!!)
 - 25+ missed days of school due to illness (2017 - 2018 school year)
 - Schoolwork challenges
 - Still a lot of doctor's appointments
 - A new doctor to follow-up with (pulmonology)
 - Ongoing maintenance medication

I'll post more about the new doctor we are seeing on a future blog.  Wish us luck starting 1st grade in a few weeks!!

First Day / Last Day of Kindergarten

Hydrocephalus Walk

September is Hydrocephalus Awareness month, reminding us all the there is NO CURE for this condition and in most cases, brain surgery is the only treatment for affected patients.  In the majority of cases, one surgery is not enough and shunts malfunction, requiring follow-up surgeries for the patients

We are SO thankful that Lucy has not had any issues with her shunt thus far, but every time she seems extra sleepy or throws up or tells me that her head hurts, I briefly worry that this might me the time.  :( I try to remind myself to take a deep breath, trust God and know that His plan for her life is EXTRAORDINARY and He will take care of her always.

We were able to participate in the local Hydrocephalus Walk at the Mall of America again this year - it's still quite a feat for us to get 4 humans out of the house by 7 am, we were feeling pretty good about that!  Lucy got to meet Miss Minnesota (a real princess!), which was her favorite part!  All hydrocephalus patients got an orange bandanna to wear, which Lucy wore proudly!

We have an appointment with Lucy's neurologist next week - thankfully no MRI this time - and anticipate that it will be an uneventful appointment...will post after we meet with him.  Jason and I are continually impressed by miss Lucy - she can read most words, is hilarious at times and is such a sweet, caring big sister!

Thank You for your continues thoughts, prayers and support for Lucy and all of us!

Relaxing in the crib together...

Playing Salon with Daddy

PJs on, ready for a story with cousin Dawson!

And look which sweet, sweet baby is 3 months old already!!!

3 Years Home!

Romans 12:12 "Be joyful in hope, patient in affliction, faithful in prayer."

It is a joyous night in our house as we celebrate the 3rd anniversary of when Lucy came home from the hospital.  What a remarkable little girl we have.  It's been a wonderful 3 years, but especially uplifting in the past 12 months as Lucy recovered from having her feeding tube removed, made great strides in her overall eating and started preschool!

I am humbled at the plan GOD has laid out for our family and how we have been able to witness His blessings and healing in Lucy's life.

Meanwhile...Lucy's latest MRI was traumatic for her (as you can expect!).  They do a "Quick-Brain" MRI to evaluate her shunt performance, which required Lucy to be in the MRI "tunnel" for 10 or so minutes while they took a series of pictures.  She was NOT a fan!  If you've ever been in an MRI machine you know that it is tiny, bright and loud.  Lucy was strapped down with a blanket tightly around her arms and mid section and she had a strap around her head keeping that still.  I was able to be in the room with her and hold her legs/tummy and sing at the top of my lungs to TRY to keep her calm.  She did quite a bit of moving and wanted to be ALL DONE, but in the end, they got the pictures that she needed, so that's a relief!!  She even played "MRI" at home that night and put her teddy bear in a makeshift tunnel and role-played...it was pretty cute in a sad sort of way. :)

The results were very positive.  Her shunt appears to be doing its job and her brain, although still not "normal" looking (it never will be), is healthy and clearly functioning very well.  Her neurologist is happy to report that unless there are issues, she doesn't need another MRI for 2 years - YAY!  (Maybe she will have forgotten about this one by then?)  Lucy impressed him with her ability to read "Medtronic" on one of the tools in his office...since I work there she sees that word a lot. HAHA!!

Thanks to all for your continued interest and support in Lucy's journey.  She is such an amazing kiddo!  Here are a few pics of what we've been up to this fall:

Celebrating sweet cousin Dawson's first birthday, you know in our costumes, next to a turtle!

Ready for hockey season (this is what happens when mom gets busy at work and daddy takes Lucy to Target!)

Playing in the leaves!!

Summer is coming to an end!

Cloud gazing with mom

Let me tell you that the end of summer is rough in Minnesota...we all know that fall is Ah-Maze-Ing here, but that the snow will soon fly and it will got C-O-L-D! :(

But, until that time comes, we are making the most of the beautiful weather of September.  We celebrated with one last fishing trip on the lake, a trip to the splash park, a few special trips with mom and Lucy while daddy was gone for 10 days and of course...getting ready for preschool!

What a change from a year ago, when Lucy was in the hospital while the doctors tried to figure out how to stop her feeding tube site from leaking.  In case you are wondering, we are VERY glad we made the decision to switch her GI care to the University of Minnesota and I hope to never be in that situation again where I feel like her care team isn't doing everything they can to solve her immediate health issues but are putting their arrogance and text book solutions before actual patient care....I could go on a rant here for awhile, but I won't...because that is all behind us and we've learned important lessons along the way!!

Lucy is doing great.  We have a few big events coming up...preschool starts tomorrow.  Lucy will go two mornings a week for about 2 1/2 hours each to a school district Early Childhood program.  Her class has about 15 kids total in it and she is one of a handful of kids that has a special education teacher assigned to monitor her progress.  Because of her hydrocephalus diagnosis, learning delays are probable so she qualifies for special education programs through the school district.  In addition, we have a health plan on file with the school because of her eating restrictions.  There is a snack every day and I am most nervous about her eating while we are not around...will she be able to handle whatever is for snack?  Will she feel singled out if the teacher tells her she has to eat the snack that mommy packed for her instead of what the class is having?  It's hard being a parent and letting your kids grow up and be independent!  I think it's impossible to NOT want to protect them from everything that we can - especially when there are extra special needs involved.

We are also participating in the annual Walk for Hydrocephalus this year...more on that in a future blog!  Our local community has already raised over $30,000 towards hydrocephalus research!!  If you'd like to donate on Lucy's behalf...here's the link to our fundraising page: Donor Pledge for Lucy London.

In the meantime, here are some pictures from our recent fun:

"Doctoring" her baby at AppleBees

The local Splash Park!!

Any fish in there, Lucy?

YAY! Reunited with daddy after a long trip away.

Snowmen with no noses

Holding baby Dawson for the first time!!

Decorating for Christmas is tough with a toddler in the house.  Anything within reach of little miss Lucy seems to end up going down a slide, getting it's teeth brushed, eating dinner with us, smuggled in the bath or her bed or missing a nose (or a head!) eventually...like this joyful crew here:

They used to have carrot noses :)

Lucy' still doing great and her surgical site is healing nicely.  We had an eye doctor appointment with her this week and got a great report.  You may remember that kids with hydrocephalus often have sight problems because of pressure in their brains that presses on the optic nerve, so we have annual eye appointments to check for any changes.  She is not a fan of eye appointments, so thankfully it's only once a year.

We have been loving some warmer weather here in Minnesota and discovered that Lucy is a huge fan of sledding.  She has a giant grin plastered on her face basically the whole time she riding in it.  We don't let her go down hills by herself yet, but being towed around by someone is great fun to her!!

This is an indication of how cold it's been in Minnesota - mom and dad's lake is totally frozen over already!

We are trying to enjoy the season by planning some fun, seasonal things, balanced with having downtime to enjoy cookies, hot cocoa, Christmas trees, holiday movies and wrapping presents at home.  We hope you are able to do the same!

Cannot resist making a mess!

2nd Opinion

Sporting a birthday crown she decorated at ECFE's 40th birthday party!

Wow!  This week we celebrated Lucy's 2-year anniversary of being home from the hospital!  What a difference 2 years makes!  She has been feeling great and has tons of energy to use up running around the house, the yard, the neighbors yard, etc.!

Taking Lucy home 2 years ago!!

Cake and markers - not enough hands!!

 We also had our 2nd opinion visit to talk about removing Lucy's feeding tube.  So glad we pursued finding a new doctor!  Her previous GI doctors were a referral from our pediatrician at Children's Hospital, but they are not actually a part of Children's. However, the surgical team IS a part of Children's.  It is pretty clear that for a patient like Lucy, we need serious coordination between the GI doctors and the the surgeons which we NEVER had before.  As Lucy's advocates, we definitely could have (and probably should have) pushed harder to get the two groups to coordinate, but until the disaster that was her feeding tube removal, things were OK so we didn't feel a strong need.  Now that we understand what can happen, the right decision for us, was to find someplace that has tighter coordination.

This week, we saw a GI doctor at the University of Minnesota and while we was talking to us, he said that he thought a surgeon was rounding in that clinic today, so we invited the surgeon in to have a look and said they would talk about Lucy's case at their next joint meeting!!!  What a change from the previous GI doctor, who told us to "call the surgeon because there is nothing else I can do."  UGH!  Overall, the visit went great and they had some long-term options for us to consider if on-going dilatations do not seem to be working for Lucy.  So, we are having her next endoscopy performed at the U of M this week with possible G-tube removal and site CLOSURE if the surgeon thinks it is possible to do as outpatient.  Oh, and do you remember back when Lucy was in Denver and we considered transferring her to MN?  This surgeon is the same one that would have performed her original surgery if we had actually been able to make that transfer happen, so I was already familiar with him and his work (arguably, one of the best in the country and well-known in this field).  Feeling God's guiding hand and infinite wisdom in this 2nd opinion!!

Prayers are welcome and we seek to be patient and understand what's next in this journey.  I am hopeful that in the next post I will be able to share with you that Lucy's feeding tube is OUT FOR GOOD!  But it not, I am confident that this new team will help us get there when the time is right.

My view when taking Lucy for a walk!