Returning to Roots

I turned 45 last September.  I didn't understand then how much life could change in the months afterwards.  Not that I think anyone really noticed nor do I think my birthday was the influence over events in this year.

Last summer, when I visited NC - I realized that we might need to be closer to family.  My parents are incrementing in age at the same rate that I am, but seemingly encountering more medical conditions as each year progresses.  The kids are getting to the age that we are talking with schools about "transition" - what is the plan after organized school.  At least for Alexis, organized school will go until age 22, but the planning and the prepping starts at 14.  Over Christmas last year, I floated the idea to my husband of moving to NC.  He was interested.  

I got a local realtor who showed my parents some properties and then we found one that we could customize to make accommodations for Alexis' wheelchair/walker.  We were able to make her bathroom bigger, make her doors bigger and get a single level living house near my parents.  Here's a photo from April 5th.  

The plan was to move at the end of the school year.  With Alexis' surgery in February, I wanted to get her recovered from surgery and return to school to get caught up with all of the mobility challenges that she had had because of pain and dysfunction in her spine.  

Well, as you all are very much living along with us - COVID19 had different plans.  Alexis' last day at school was Feb 12, then school vacation, then surgery, then recovery time at home - then no one had school.  And now MA doesn't have school for rest of this school year.  

So we have made some adjustments.  We are planning to move from Massachusetts May 14.  We will arrive in NC either May 15 or May 16 (depends on the weather - we must drive straight through because #nohoteling #COVID19).  The moving truck should arrive between May 18 - May 25.  And then I'll work on unpacking until 2030.  Mark my words, I'll have boxes that will need opening still then.  Kids will still participate in remote MA school until the end of the school year in June.  

It will be a big transition.  I'm excited for having family around - for my parents, my aunts, my uncles, my cousins, my cousins' kids and cousins of cousins.  I haven't lived in NC since 1996 when I left for California.  I'm sure over the next year, I'll try to re-remember who my high school classmates were, try to readjust to hot weather, try really really hard not to miss the snow.   Most of all, I'll try really hard not to miss my MA friends who became family in the 19 years I've lived here.  But know that when COVID19 gets "done", we'll be back for a proper farewell!  Jessica and Alexis will keep some of their doctors at BCH - so we will travel back for those appointments.

When we get settled and the yard and the house look a little more like "our touches" - I'll try to post more photos.  In the meantime - keep yourselves safe !!!

Alexis is HOME!!!

Alexis escaped BCH yesterday and has found a way to piano!!

We got her to stand and walk in walker about 9’ before she said “enough”

Then we rewarded effort with piano time!!

We will progress piano time with less and less support and eventually get her back to sitting at piano bench (her baseline).  

Before her surgery, she always leaned right - and would support her leaning body with her right hand on the ground/surface she was sitting on.  Now that she's had her back repaired, if she's sitting on a surface (so far bed) - she puts her left hand down.  Basically her "center of mass" of her back is too far left for her muscles now.  And it probably doesn't help that she's on oxycodone and Valium - that she might have a hard time finding her body in space.

After piano time we are going to try to some "Red ball" time.  Probably for now, just sitting on mom's lap.  We will progress that to sitting on red ball with someone holding red ball from sliding around without her.  

Her night nurse (me) got a good 1.5 hour nap while she had lunch with dad.  That was a nice relief.  Getting up 3 times for 3 different meds at night is no fun - but we are looking for a "boring" recovery - where she is doing awesome in a very boring way. 

She already shaved 2 days off the hospital stay - so we are hoping each day gets better and each day gets stronger!  Yay Alexis!!!!

Catherine

Updated Photos from Hospital

Here's photos of Alexis and our field trips around Boston Children's Hospital

We found a piano - it makes her very happy!

Here's Alexis resting with her animals.....

We found a big Minnie Mouse - but the gift shop was closed when we were walking around the hospital.

We got a super special doctor dog to help cheer on our recovery.

She got a little pooped out and is giving me the "Mom, I need to go lay in my bed..."

Alexis Post Op Day 1

We're here at Boston Children's Hospital.  Alexis remained intubated overnight because of the narcotic pain meds that she was one.  Alexis is a bit tricky - with codeine and morphine type drugs, she lowers heart rate, breathing rate and blood pressure.  So it was just safer to keep her airway safe and keep her resting comfortably overnight.

After shift change but before morning rounds, they (along with Alexis' help) took out the breathing tube.  She wore her CPAP for a little bit of time after that.

Pain management team came around and we all talked that Alexis would get valium for keeping her relaxed but then tylenol by IV for pain.  So far that has been managing her pain.  

We then rested a bit, then she wanted to sit up.  She played a little bit and then we were able to start some pedialyte via g-tube on slow-mo.  It's set for 10ml / hour which is like slow slow slow motion, but it's something and it seems to be making her more comfortable.  We've been doing bits of chest-PT as well to clear out any gunk that she might have gotten while intubated.  

Alexis and I cuddled some (and took another selfie).  

Then we both took naps.  

In-patient PT came to visit, so we will see them tomorrow.  Hopefully we can get up into her wheelchair for some wiggle time and maybe even see about leg braces/walking time.

Hopefully tonight will be boring, maybe we'll get to have some Compleat (Alexis' formula) via g-tube.  Then we can see where we go from here.  We have to poop before we leave, but leaving the hospital will be something considered after Monday March 2.  (Our badges say March 10 - hopefully we're not here until then!!)

That's all.

Catherine

Surgery #9 - Scoliosis Repair

Alexis had Surgery #9 today at Boston Children's Hospital.

She was here to get her ear canals cleaned of wax, then hearing test done.  Then after these were completed, she started her main reason for surgery - scoliosis repair.  

They were able to insert Harrington rods along her spine (one rod on either side of her spine) from L7 to pelvis.  Her curve prior to surgery was 85%.  There is still a swoop from where her spine was flexible enough to get adjusted into place.  

Here's a photo - before on the Right side, after on the Left side.

She's in the ICU - still intubated and most likely staying that way until tomorrow mid-morning.  She challenged them for intubation and they'd rather her sleep comfortably tonight than to risk extubating and then having to emergently re-intubating.  

Also when she was on narcotics after her cleft palate surgery, she didn't maintain breathing and heart rate well - so having the extra support from the ventilator is good for her body.  I probably won't agree with this decision after mid-day tomorrow and will lobby harder for the tube to be removed.

She's resting comfortably and hopefully will get back to her usual feisty self tomorrow.  

Thanks for all of the thoughts - we are powered by the fierceness of Alexis' fight.  And we can't wait for her to wake up and start giggling.  For now, we wait.

February Adventures - Germany & Netherlands

Written by Jessica

On February 14, Mom and I were excited to go to Amsterdam and every other place that we went.

This is me watching TV taking selfies with the ipad.  I'm silly!

We ate dinner on the plane, then we had 3 hours of sleep, then we had a small breakfast snack. I loved it!  It was so tasty!
I am extremely tired because I did not get a lot of sleep on the plane.

I am napping on the second train because I was tired. It was 75 minute train ride from Amsterdam to Roermond.  My mom's sister was waiting for us there. 

One day, one of my cousins and I went to a chicken farm.  We're taking a picture by the chickens.

Here are my cousins.  We were at a very old mill.  We ate waffles for an afternoon snack.

On Monday I fell asleep in the car on the way from Germany to the Netherlands. I had a busy weekend playing with my cousins.

This is the room that we stayed in at Ab and Annet's house.  I love PURPLE!!!

The first day in the morning, I was cutting wood with Ab.  It was so fun!  I loved it!

I helped at the Bridge of Tess.  It was an old tire filled with dirt to help make a bridge.  We went on a little walk in the woods.

I was being silly in the coffee table!

We went to an outdoor playground - I was swinging on 1 of the 3 swings.

Here's the second out of 3 swings.  It was so much fun!  They were just like the swings at our school.

Here's the 3rd swing! People had to push me on the swing!

The next day, we went to indoor playground in the morning.  I loved the slides!  There was an even bigger red one that was so crazy!

On this slide, I was on a tube because I couldn't ride down without it.  It was too bumpy!

Meals were awesome.  I was eating some candy in a sandwich.  Perfect!

Here I am cutting cheese, specifically Dutch cheese!  It was hard work!  But the cheese was yummy!

After rest time, we went to GlowGolf.  Here I am with a GlowGolf Tiger.  Not a real one, silly goofs!

I had to work really hard.  I even got a hole in 1!  I was the only person in our group who got a hole in 1!

Here's the end of golfing!  It's not a real dinosaur either!  We had a fun time!

We switched sports in the evening - here's a table top ice hockey game!

I loved looking at pictures of Ab and Annet's children and grandchildren!  One of their kids had a kid in Australia!  He's younger than me!

Our last day, we went to Amsterdam.  Here I am in the front of the awesome train station!

Here I am getting ready for our canal cruise.  Here let me explain, a canal is a river inside the city.  A cruise, you probably know what a cruise is.  Some people go on it in the summer.  We saw interesting buildings and houses.

Here is a view of 7 bridges over the canal in Amsterdam.  It was nice to be in a cruise boat since it was 40 and rainy.

Next stop, we went to an old carousel that sells poffertjes - those are mini-pancakes.  They are awesome!  You should come with me to try them!

We went walking around after eating. It was fun to see parts of the city.  We went to Body Worlds - they took dead people and cut their skin off and showed their muscles and body parts.  There were 3 swings in there - that was kind of crazy for a museum exhibit!  It wasn't gross, I like watching Dr Jeff's surgeries on Animal Planet (kids that don't like to see insides - you shouldn't watch it).

Here I am taking some more photos before we get on the train.

Here's me and my silly mom!  It was a long day - we did a lot of walking and we were both tired!

We stayed at hotel near the Airport so that we could get to our airplane the next morning. We stopped for some Dutch French Fries for dinner (mom's dinner rules :))  Here I am stuck in a shoe!

The next morning was our final day.  Here is the awesome plane that will take us back to the US.

Hey, it's me on the plane (if you didn't know) - I'm sleepy!

It so so so so so so so so so so so so much FUN!!!!!!!  I loved it so much!  And Mom loved it too!  We missed Daddy and Alexis but it we got to see them with Facetime and when we came back!  Alexis gave a big giggle when she and Daddy picked us up.  It was good to be home! 

P.S.  Here's a map of where we went -- The X in Germany is where my Aunt Laura lives. The X in top of the Netherlands is Amsterdam, where we flew in and out.  It's also where we visited the last day.  The X in between is Eindhoven, Netherlands. 

Rare Disease Day with Diagnosis!

My double rare kids!!

Today is Rare Disease Day! According to Wikipedia, "Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families."
Alexis and Jessica have taught us so much about the medical world and I am blessed to be their mom.
Getting the HDAC8 Deletion diagnosis was a journey but we are there! 

#ShowYouAreRare 

#RareDiseaseDay2019

Cornelia de Lange #HDAC8Deletion Klippel-Feil Syndrome Freedom