Monday, April 22, 2019

The House That Built Me

After months of cleaning and selling household items, my grandmother's house is for sale.  While we are thankful to still have her with us, she can no longer live by herself.  It was time to sell it, but that doesn't make saying goodbye any easier.

Next to my own house, I spent most of my time at "Mommom's House."  I stayed there on inservice days when my mom had to work.  My sick days were usually spent there.  When my parents went somewhere on a date, I went to Mommom's.  I loved every second I spent there.  I have SO many memories in that house, and I thought I might share a few with you.

The tree has long-since been cut down, but a huge pine tree used to be here.  You can see the stump in the ground.  It was the perfect climbing tree, and I would spend hours in it.  I had "rooms," would make up stories, and would read books in it.  It was the best!

This stoop was the location of so many mud pie concoctions!  She would give me a dish pan, a shovel, and a cup of water, and I would add dirt and play to my heart's content.  I was a tomboy, so being dirty didn't both me at all!

Even though her house in on a very busy road, she has a huge front yard that I turned many cartwheels on.  I also loved to sit on the porch and count the cars.  We had lots of yard sales and lemonade stands in her front yard too!


A low branch that used to be on this tree was the perfect height and size for a swing.  My grandfather hung it for us when I was really little, and I would swing out here for hours.

This field used to be a lovely home garden.  My favorite produce out of it were the tomatoes and strawberries.  I used to love to pick them.  There's nothing like a freshly picked tomato!  Yum!

You wouldn't think there would be a memory tied to the kitchen sink, but I spent many hours playing in soapy water, pouring water from cup to cup, and dunking little toys under the water.  This is also a place where Mommom would often stand washing her dishes.  While she could have had a dishwasher, she never did.  She always said she liked washing her own dishes.

This is where the kitchen table stood.  It was just a little drop leaf round table, but there was always room.  We often joke now that Mommom's love language is food, because she absolutely loved cooking for people.  She would make me yummy salads (I loved them even as a little girl) or sandwiches with chips and we would sit here and talk.  This was always the "kid table" at holiday gatherings.  Even though there were five grandchildren, we all always managed to fit!

Right here sat a red oval-shaped Tupperware container and a white rectangular Tupperware container for as long as I can remember.  In them were almost always chocolate chip cookies, brownies, yellow cake with chocolate icing, or some other yummy treat.

Also in the kitchen right next to the refrigerator sat three clear glass cookie jars that were always filled with pretzels, ginger snaps, and usually some other kind of cookie.  The pretzel jar was always in front and was never empty.  We always knew where we could go for a snack!  Pretzels and orange juice were my favorite snack/drink combo at Mommom's house.

In the dining room, most of the floor space was filled with the dining room table.  When I was growing up, many heated games of Pinochle were played at this table with Mommom, Pop Pop, and Aunt Daisy!  This was also where the food would be spread out buffet-style for family gatherings.  Mommom always had shrimp cocktail and a yummy spinach dip for the veggies that I loved.

This is the living room, which had a couch, 2 recliners, a chair, and 2 rocking chairs.  It's amazing how much seating you can fit into a small space!  Sick days were spent on the couch watching Price is Right with Pop Pop and yelling at the people on the TV when they were too high or too low.  Many, many Christmas Eves were spent piling into this room to exchange presents.

See the mark on the floor there?  This is where the bar used to stand in the basement.  I really don't know why they had it because I never saw them use it, but I LOVED playing at it!  I would serve up all kinds of drinks using the cups from Hawaii and pretend that I was at some kind of tropical place.

I always loved playing in the basement.  I would ride around on my bike or little push toys, play hide and seek,or just pretend.  In more recent years, this area housed all of the teaching materials I couldn't bear to part with.

There are SO many more memories I could share.  As I walked through the house taking pictures and mentally saying goodbye, I couldn't help but tear up a little.  It's the closing of a huge chapter of our lives, and this house was a central point for our family for 60+ years.

Goodbye, little brick house.  Thanks for so many great memories!

Thursday, February 28, 2019

It's Rare Disease Day!

I apologize for the lack of posting. news is good news in the medically fragile world!  Abby has been doing SO well and we are thankful for the many improvements to her health.  She had a touch of pneumonia in the beginning of February and stayed at home!  This is huge because pneumonia can be a beast for diseased lungs.  She did her breathing treatments like a champ and hung in there just fine. 

The last few weeks, her school has been pretty germy.  We kept her out for a week and a half to protect her while the flu made its rounds.  Everything is looking much better now though, so she happily went back on Tuesday.  While she is the one of my kids who I could easily home school, she is also the one of my two who simply loves being around people!

Today is Rare Disease Day, and I wanted to share what I have been posting on Facebook with you all here.

Cerebrocostomandibular Syndrome, Abby’s primary diagnosis, is extremely rare. There are only an estimated 10 children living with it. We have no support organization, no research funding, and no specialists. The parents are the specialists!

Abby’s secondary diagnosis is Thoracic Insufficiency Syndrome. She has a rib-gap anomaly that caused about 1/2 of her ribs to be in multiple pieces. Those pieces are a ribbon consistency, which leaves most of her thoracic cavity unprotected. Her rib cage is unable to expand, keeping her lungs from being able to grow.
Because her ribs are so flimsy, her spine is unable to be supported. She has congenital scoliosis (thoracic spine) and early onset kyphosis (cervical and upper thoracic spine).
Abby has VEPTRS (Vertical Expandable Prosthetic Titanium Ribs) created by Dr. Robert Campbell. These VEPTRS manually expand her rib cage because they don’t do it on their own. This gives her lungs the room they need to grow.
Abby in Summer 2016 with 4 VEPTRS

To date, Abby has had 31 surgeries. Most of them have been to work on reconstructing her chest wall and address her kyphosis. Right now, her biggest chest wall concern is her kyphosis because cervical kyphosis is really difficult to correct. 2 years ago, it began to compromise her spinal cord. A surgery to correct it caused a spinal cord injury that resulted in nerve damage and a whole lot of PT!
You can see the severity of the Kyphosis here, and this was during the time that she was braced

She has been in multiple braces, including a pinless halo for 6 months. She developed a severe spinal infection, resulting in an open wound for 13 months and a severe sepsis that nearly killed her. Her team ended up removing the hardware in the right side to get rid of the infection. Abby has been on long-term antibiotics to keep the infection at bay, and will continue to be for as long as she has hardware.

The pinless halo

We have not found the magical cure, so we are just in a waiting game as long as it doesn’t begin to affect her spinal cord again.
The left picture is Abby in September 2018 and the right is Abby's most recent xray

Abby was diagnosed in utero with Pierre Robin Sequence, which is a tiny jaw and often a cleft palate. It was enough for us to switch my care to a specialist in Baltimore, but it really wasn’t anywhere near the concerns they found once she was born. The NICU did standard preemie xrays and discovered multiple rib gaps. They had no idea what this meant and hung a huge sign on her isolette that said “Fragile! Do not touch!”
Thankfully, a geneticist had seen a case of Cerebrocostomandibular Syndrome 30 years before during her residency. She conferred with another hospital that specializes in skeletal syndromes and Abby was diagnosed in the same day she was born.
We were fortunate to not have to hunt for a diagnosis. Because of research studies, we were also able to have a total genome sequencing done without cost. This gave us quite a bit of information and ruled out other syndromes. Most rare disease families aren’t that lucky.

We have often been asked about Abby’s long-term prognosis. The answer is that we are thankful for every day! Because CCMS is so incredibly rare, studies on long-term health haven’t been done. Most babies die in the NICU if they are not treated with aggressive respiratory care, like a trach and ventilator. We had to fight for that aggressive care and know all too well how a grim diagnosis can affect the doctor’s willingness to treat the child.
I now know of 3 adults with CCMS and that gives me so much hope!!! So while Abby is blazing her own trail, we know that there is hope and we will continue to treat each symptom that pops up. Sometimes I feel like we are playing Whack-A-Mole! eyes...ribs...lungs again...feeding...scoliosis...ribs...hearing...kyphosis...lungs...lungs...lungs...lungs again....eyes...kyphosis...oops eyes again...🤣
Our girl is a miracle and we are so thankful to God for choosing us to be her parents. We will continue to choose joy and be thankful for every day!

Monday, January 7, 2019

2018 Recap

I am a little late on this and had hoped to have this written for January 1st, least it's still January! 

2018 was such a time of relief and respite for our family.  After a very challenging 2017 that left us wondering if 2018 would be Abby's last year with us, she made outstanding improvement and is the healthiest she has been in quite a while.  We are so very thankful and the valleys we have experienced have caused us to be even more thankful for the mountain tops!

January started with the promise of a new year and the hope that 2018 would be better.  Santa had brought us tickets to see Shrek the Musical at a dinner theater, and we were able to enjoy the rare occasion of taking Abby out of the house (armed with Lysol wipes, of course!)  We celebrated Caleb's 11th birthday with pizza and a movie with friends and he got tickets to The Spy Museum and to see Newsies in March.  Matt and Caleb thoroughly enjoyed the Spy Museum when they went later in the month.
Caleb's birthday celebration

In February, we enjoyed Caleb's All-County band concert.  He played trumpet and although he chose chorus over band for 6th grade, he is looking forward to going back to the band next year.  He also went to 6th grade orientation at the end of February and walked around in a nervous huddle with his group of friends.

We were humbled and amazed by our wonderful school family who threw a huge spaghetti dinner and silent auction fundraiser for us and another family in March.  Although Abby couldn't be there with us, I Facetimed her in so that she could see all of the people who came to support her.  It was pretty incredible, and we were so thankful.  We also all were able to enjoy Caleb's birthday present of Newsies at Toby's Dinner Theater.  It was such a fun show with lots of dancing!

In April, Matt and I celebrated our 14th anniversary and were able to go away for the weekend to Cape May.  We enjoyed whale watching and just slowing down a bit!  Caleb was chosen to receive a Carson's Scholar Award and we celebrated with a wonderful banquet in Baltimore.  It was really neat to meet Ben and Candy Carson.  On April 23rd, Abby was finally able to join her class for the first time this year!  She was absolutely thrilled to be back in school, and I finally let out a breath I didn't know I'd been holding.
Cape May, NJ
Cape May Whalewatching

Carson Scholarship Awards Banquet

We enjoyed lots of performances by Caleb in May!  He sang his first solo in the spring chorus concert, played in his final elementary band concert, and performed as Lefou in the school's production of Beauty and the Beast.  He was a hit and got lots of laughs!  We love how musical Caleb is and really enjoy watching him perform!  I was also able to go with Caleb on his 5th grade field trip to West River.  This was such a fun trip and a great way to end the year.
Curtain Call

Caleb with his friends
In June, Caleb said goodbye to elementary school and was recognized for several awards for academics.  What we were most proud of was that he was chosen for the Kindness Award!  Soon after school ended, my entire family went on an amazing trip to Alaska for a Disney Cruise!  It was SO much fun and we made a lot of special memories, including petting sled dogs, touching a glacier, and seeing dozens of bald eagles flying around.
5th grade recognition

Disney Alaska Cruise
cuddling the sled dogs

meeting a new friend
touching a piece of a glacier

Matt celebrated his 40th birthday in July and we went on a weekend trip to NYC with great friends.  We saw Sponge Bob, the Musical and Phantom of the Opera, and also enjoyed the people watching in the city!  Since Abby could finally swim this summer (the last few years she has had surgical wounds and was unable to be in the water), we spent a lot of time in the pool.  She also bought herself a bike and enjoyed riding it in the school parking lot.  We were devastated to hear of the loss of our beloved surgeon, Dr. Campbell, who created the VEPTR device that saved Abby's life.  He is sorely missed.
NYC Central Park
swimming at the indoor pool

Both Caleb and Abby went to performing arts camp this year and enjoyed singing and dancing.  Caleb was finally old enough to join the youth group at church and loved being able to go to Six Flags.  We went to several Ravens events with The Ronald McDonald House and were excited to also begin volunteering at RMH again.  The kids rounded out the summer with a Therapeutic Recreation camp for kids with special needs and their siblings. 
Go Ravens
Ravens cutie

first day of ballet
Just before school started in September, Matt and I finally were able to see Hamilton at the Kennedy Center!!  We sang quietly along to every song but we don't think we disturbed anyone around us!  Abby started 2nd grade and Caleb started 6th.  Middle school proved to be a tough transition that we are still dealing with in the start of 2019, but he is getting there.  Abby started taking ballet with Lucy on Mondays and adaptive swim lessons on Saturdays.  Both have played a role in getting her stronger and helping her stretch her muscles.
first day of 2nd and 6th grade
Hamilton at the Kennedy Center

October brought fun fall activities with the schools and the youth group.  Abby thoroughly enjoyed her birthday party at a local cooking school and has continued to love cooking with me.  I had a jaw surgery and we had to get a new AC and heating unit, so our tax return was spent before the taxes were even filed!  For Halloween, Caleb dressed up as a fencer and Abby was Rapunzel. 
Abby's birthday celebration
learning to peel an apple

cousin friends
the big 8 year old

Rapunzel and the fencer

In November, we celebrated Thanksgiving with my family.  We were especially thankful that my grandmother was with us after suffering a stroke.  This month also marked the first meeting of the Fellowship of Christian Athletes at Caleb's middle school!  Caleb and Sara did all of the leg work to get the group off of the ground and we are so proud of their dedication!
First day of FCA

As usual, December was a busy month!  We enjoyed the usual winter and Christmas events, as well as a special program at our church that allowed guests to experience what life was like in Bethlehem when Jesus was born.  Abby and I enjoyed the show Anastasia at The Hippodrome, which she received for her birthday.  We participated in one of our favorite family traditions of giving out awards in our community for the best Christmas lights displays.  Christmas morning was exciting, as always!  Caleb was floored to realize that he'd received a ticket to see Hamilton this summer, and Abby was thrilled with her doll and Barbie items.  Santa also brought the family a new Smart TV and a weekend at Massanutten to go snowtubing!  The day after Christmas, the kids went with their grandparents and cousins to see The Little Mermaid at Toby's Dinner Theater.  On the 27th, we headed south to Charlotte, NC to visit Matt's family for a few days.  New Year's Eve was celebrated at home playing family games and watching movies--just the way we like it!
Church Bethlehem program

Meeting Anastasia

Christmas morning

 That is 2018 in a nutshell!  As I said before, our hearts are so much more grateful for the good times because we have experienced some really challenging years.  We trust that 2019 will be a year of growth and thankfulness for our family and yours!