Kenzie MRI Update

So today was the big day, the day Kenzie underwent an MRI exam to hopefully give us answers or clues to what has been going on so that we can move forward in her treatment and therapy.  Unfortunately it has opened up a lot of unknowns and uncertainties. 

Starting this blog before Kaitlyn was born, I found this a great way to communicate our stories with our distant family members everywhere.  Today I find this to be the hardest blog entry I've ever had to try to put together, so bear with me. 

Following Kenzie's MRI, her neurologist, who came to the hospital personally to view the results and perform a lumbar puncture on Kenzie to get a sample of spinal fluids, brought us aside to talk about an area of concern seen on the imaging.  Luckily 2 great nurses took care of Kenzie and Kaitlyn during this period, they were really awesome.  So in general terms, an area deep in Kenzie's brain appears to be lighting up, the term the doctor used, on the MRI.  At first glance it appears Kenzie has an extremely rare disorder called Leigh's disease. It is a disorder that means there is a problem with Kenzie's mitochondrial system, which affects mainly her muscles and muscle tone, as well as the central nervous system.  Let me stress that at this point in the game there are a lot of unknowns about this.  It has not been confirmed yet as more bloodwork and tests will need to be done with the geneticist and the neurologist to see both if she has it and if so what strain and how severe it is.  So I would please ask that you don't Google or look up this disease, because at first glance it can appear very gloomy and scary. There is currently no treatment for this disease, although research is being done. 

That being said, we want to make sure we are relaying news to all our family so that everyone is kept abreast of Kenzie's progress.  The shock of the day has been absorbed a little, but it is still hard to believe.  If this disorder is confirmed, Kenzie will most likely face a shortened life span.  Unfortunately again without more tests and blood work we do not know what that means, but we are not talking about something that is going to happen tomorrow or the next day.  The doctor was being hopeful and saying she is hopeful that we will still have decades with Kenzie.  SO  that is what we are doing.  Being hopeful, and will take it one day at a time.  Through prayers and family we hope to face this head on, and will put up quite a fight against this disease if necessary. 

The glimmer of light in all this is that if Kenzie indeed has this disease, she is doing way better than anyone should be.  She is progressing with her physical therapy, standing, and working on walking at therapy.  Her speech is slowly getting better, that is more words recognizable.  This disease is usually not a rapid decline, but a gradual regression.  We are not seeing that in Kenzie and so gives more reason for hope.  We don't want to scare anyone with this information but we feel we should be as upfront and honest with everyone about what is happening as the doctor was with us.  We have not told Kaitlyn yet for obvious reasons, and will wait for more information before crossing that bridge.

So again sorry for the information overload, it is a lot to take in.  At this time we ask for your continued prayers and support, as it looks like we are beginning a long journey. 


Love always ..... Kevin Cyndi Kaitlyn and Kenzie

Thanksgiving

Kevin miraculously got Thanksgiving week off again this year.  We decided to go to my parents' house and not tell Kaitlyn.  She claims that she had no idea the whole trip down that we were going to Florida. The girls had a great time.  Kenzie loved my old kitchen.

Kenzie kept the old high chair warm...

Kaitlyn broke out Uncle Robert's old toys too...

On Friday, we went to Universal and Island of Adventure.  Kaitlyn is going through a huge Harry Potter kick.  She and I went on the Harry Potter themed rides.  Oma and Opa bought her an interactive wand.  At designated spots in the park, pointing your wand will make "magic" happen...  water fountains go on, objects move,etc.  Kaitlyn loved every second!

That evening the girls were exhausted...

but not too exhausted to open their Christmas presents from Oma, Opa, and Uncle Robert. Kenzie still isn't opening her own presents, but she loves the wrapping paper on the floor.  Kailtyn was only too happy to open Kenzie's presents for her.

Unfortunately, after a good breakfast on Saturday morning, we had to make the long trip home.

On Sunday, we took a short detour and took the girls to Appomattox.  We try to fit at least one historical stop in every road trip.

Our last night, we stopped in Hershey for a  resupply of baked goods.  Kaitlyn had no idea where we were since she had fallen asleep on the way into town.  Before bed, we let her eat her Cauldron Cake from the Wizarding World of Harry Potter.

The next morning we headed over to Chocolate World which was all decked out for Christmas.

You can't tell in these pictures, but Kenzie loved the ride.  She kept clapping and smiling.

Kaitlyn loved the holiday house.  The whole thing is made of different candies.  

The walkway is made of those huge Hershey bars and jolly ranchers.  

Finally, we had an early lunch at The Bears' Den.

We are all back at school/work/ Mammy's house and back in the normal routine.  Kaitlyn had her trimester assembly today.  She got all Very Goods and Goods on her report card.  She also got two Certificates of Achievement. One for Cross Country and one for reading.

Kaitlyn's 8th Birthday in Washington DC

Kevin and I have been planning a special surprise for Kaitlyn's birthday for some time now.  She's been wanting to see Giant Pandas ever since we started watching Panda Cam together. We were so excited to surprise her with a trip to DC to see them.

We took the train down on Wednesday and were ready to go on Thursday.  Once we established where we were with Kaitlyn, we walked over to see the White House.  We weren't able to get tickets to go in, but Kaitlyn was happy just to see "the President's House".

Next we walked over to the Washington Monument.  Kaitlyn did not like how windy it was there. We weren't able to go up to the observatory since the elevator was undergoing repairs. 

Then we started the walk up to the Capitol.  On the way, Trump's motorcade went racing by us heading to the White House.

We arranged our Capitol tour with one of our Senators, so we actually headed to his office first.  We got to take their underground trolley from the office building to the Capitol.  Kaitlyn loved it! When we did get over to the Capitol we discovered that Trump was meeting with House Speaker Paul Ryan and it was in partial lock down.  Luckily, by rearranging the order of the tour we were able to see everything once he'd left.  Kaitlyn liked the rotunda.

After the tour, we took a walk along the Mall.  By the time we got to the World War II Memorial the kids were basically done for the night.

Kaitlyn was excited to wear the birthday hat headband that her sister refused to wear.  She loved the attention she got all day long with everyone telling her "happy birthday".

Kaitlyn was so excited when we got to the Zoo!

Everyone was wearing their panda gear!

We're such mean parents that we had Kaitlyn convinced the only pandas at this zoo were red pandas!

It was completely worth all the planning and secrecy when she rounded the corner and saw the giant pandas.  She clasped her hands over her mouth and gasped.  They were adorable!  The panda in front is the "baby"...  15 month old Bei Bei.

Even Kenzie loved the pandas!

 My water baby loved the seals, otters, and fish.  They all sent her into fits of giggles and snorts!

We took Kaitlyn to dinner at Fogo de Chao.

Then we headed back to the hotel to open some presents.

The next day we headed out to some of the museums...  with one minor corny photo op!

We started off at the Natural History Museum.  Kaitlyn learned about earthquakes and seismographs...

Touched an amethyst (she said the gems and minerals were her favorites)!

After Kaitlyn stood next to the elephant leg, she wanted me to do it too.

Kaitlyn was nervous to touch the bugs at first, but then she loved it!

 Learning about Egypt...

Kenzie liked the dinosaurs!

But loved the fish!

Kenzie's usual mischievous glint...

After lunch, we headed to the Air and Space Museum.  Kaitlyn's favorite part was touching the moon rock!

On our last day, we ended up walking over 9 miles! We started out at the American History museum.  We were the first ones in when they opened which Kaitlyn was especially excited about.

Both girls loved Bert and Ernie from Sesame Street.

Dickinson 2044?

Problem solving in the kids' area.

My family is full of comedians...

Kaitlyn was so excited to see the flag that she learned about at Fort McHenry earlier this year...

Already exhausted and only halfway through the day!

We finished up our trip with the memorials... we started out at the Vietnam Veterans and the Korean Veterans memorials.  I was so proud of how quiet and respectful Kaitlyn was.  It was disheartening how many adults and other children were not!

Next, we went to the Lincoln Memorial.  Kaitlyn was so excited to go here.  She asked every day when we were going here.  I think she was overwhelmed when she saw how big it was in real life though!

Next we went to the MLK Memorial.

Then we were off to the FDR Memorial...

Kenzie loves waterfalls (insert giggles and snorts here)!

We finished off at the Jefferson Memorial... but on the way Marine One flew by!

Now we are back in our regular routine for a few days, before our next adventure starts...