Life as a Leach

I started this 3 years ago or more, when one of Abby’s specialists started asking us, “When’s the next big thing?”  He meant surgery, of course, and I hated how the “big things” in our lives were Abby’s surgeries.   That night, I used the chalk board on our coffee table (really a repurposed toy chest) to write The Next Big Thing.  Then I listed all of the fun things we were looking forward to and their dates.  This practice has stuck with us, and the kids love it!  They get excited to see their birthday on there, or that a special event they are involved in made the board.  It keeps our focus on all of the fun things we have going on instead of drifting toward the negatives.   I updated the board today.  As you can see, we have lots to look forward to in the next 2 months!

So, I try to be a Pinterest mom.  Sometimes it works out, and sometimes it turns out more like this.   (Just ask me about the nail polish cookies sometime!) 😆😆😆 I recently learned about Paperless Post , and guys, I think I found a way to make my life easier!!  This company has the CUTEST e-cards and invitations!  You can add your own pictures to many of them and the editing is very simple.  Here are a few cute ones that I found:  Click here to the adorable animation (great name too, right?!) Click here to view the beautiful envelope that goes with this one! (fun Harry Potter card) (my Ninja boy would like this and you can actually put your child's face in as the ninja!) And man, I wish I'd found Paperless Post before Abby's cooking party!  Check out this PERFECT invitation that would have saved me so much time! I love the cookie envelopes that go with this one.  Check them out here. Many of the d...

My dear, sweet, Abby Joy, What. A. Year!  This time last year, we honestly weren't sure if you would be here for your 8th birthday.  What a mighty God we have who has healed you and allowed you to flourish in the last 6 months!!  You have come such a long way, and we are so grateful. While you started out your 7th year a bit rough and pretty limited in what you could do, in April you returned to school and were able to finally join your 1st grade class in person!  You finished out the year LOVING every second of school, and then started the summer with an amazing trip to Alaska!  Your favorite memories of the trip a meeting the sled dog puppies and going to Kids Club on the ship. We had an awesome summer and played so hard!  You participated in a theater camp and a camp through Therapeutic Recreation.  It was so good to see you playing again. Your second grade year has started out great and you are loving your teacher....

Abby had her 8th birthday party at a local cooking school today, and it was SO much fun!  The party was a Chop Jr. theme, so the group was split into 2 teams and they worked together to create an appetizer, main course, and dessert from a basket of ingredients.  They could add additional ingredients, but all of the ones in the basket had to be included.  Judges decided which team won each round. Her great group of cousins and friends from school and church Learning how to use a knife properly Abby peeled an apple cutting up turkey stirring the baked apples and adding cinnamon shredding chicken for the main course cooking the chicken and cream sauce cutting up spring onions You can't go wrong with cheese! Team 1 with their dessert creations! Time to sing "Happy Birthday!"  The girls each got to decorate their own cupcake. Lucy thoroughly enjoyed the whipped cream! ...

Now that we are nearly ending our first month of school, I figured it was time for an update: Caleb is slowly transitioning to middle school.  The first few weeks were a big adjustment, because lockers, combinations, dressing out for PE, navigating hallways, and an open lunch time are all very new and different.  After a few before and after school practice sessions for his locker, he is feeling good about it.  (Good thing for him that his school is one of my schools, so I could help him out before and after!)  He has at least one friend in every class, which isn't always the case in middle school.  He is happy about that and really likes several of his teachers.  He is enjoying "Nest," as they call it, which is where students can eat lunch anytime during this one block of time and can also go to various clubs and activities around the school.  He is able to hang out with his cousin during Nest and has already joined the Aquarium Club and Best Bud...

My Facebook memories showed me a video of Abby from 5 years ago today.  It's a sweet little clip of her nearly 3 year old self yelling, "No more tubie!!!" and showing me the band-aid that covers where her gtube was.  I remember that day so well.  We went to a feeding clinic appointment hoping that we would get the okay to pull the tube, since she hadn't used it in over three months, but figuring we would need to come back for a separate appointment to do it.  I was ecstatic when the GI told us he could take it out right then!  This was momentous because it was the first day in Abby's little life that she was officially free of all medical devices.  I cried many happy tears that day. When that video was taken, we didn't know that she would be getting that tube surgically put back in just a little over a year later, thanks to a major jaw surgery that would make her completely tube dependent for many months.  We had no idea how far she would regress i...

We met our new surgeon, Dr. Anari, at CHOP today and so many fears were alleviated!  He is so kind AND knowledgeable.  It was obvious that he had studied Abby’s file.  In fact, Dr. Anari told us that Dr. Campbell discussed all of his complex cases with him and they created their plans going forward together in May/June.  That Dr. Campbell...💕 I am feeling really good about our decision to go to Anari.  He wants Abby to enjoy being a kid this winter and wait until the spring for an expansion.  He really emphasized the quality of life and Abby was thrilled not to have surgery right now! We talked about the long-range plan (which is tentative at best when you have a kid like Abby!) and discussed possibilities for her kyphosis.  Kyphosis is a monster and is very difficult to treat, but she is stable for now. He seems to be a planner, which made my type A heart happy! We were also able to enjoy lunch with two other VEPTR families, which is always so great!...

Happy First Day of School! Caleb is starting middle school today, and has mixed feelings about it!  While he is pretty certain he is going to get shoved in a locker, I have assured him that he will be just fine!  He is such a nice  kid and I encouraged him to just keep being kind to everyone and to not get sucked in by others who like to make fun of people.  I seriously can't believe that he is old enough to be in middle school!  The cliche is true:  time flies! Abby was pretty sad about her brother not being at the same school as her, and some tears were shed after he left this morning.  I told her she must have a really great big brother if she's that sad! Chloe loves getting in on the pictures! After Caleb left, I set to work on Abby's hair.  She requested curls this morning.  I told her that this may just be a special occasions hair style!  :) This moment is not lost on me. This time last year, Abby and I sai...

We have learned since having Abby to make the most of every day.  When she is doing well, we play hard.  Last summer was pretty low-key because she was so sick and unable to leave the house.  But this year... THIS year, we made up for that!  Here are some highlights of our summer, in no particular order. *  Flying across the country to Alaska, going on a cruise for the first time, gazing at gorgeous mountains, petting sled dog puppies, going whale watching, visiting and touching a glacier, dipping our toes in a (freezing!) glacial lake, seeing an orca from our balcony, and spotting a bear *  Lots of cousin play time and sleepovers at each others' houses *  Celebrating Matt's 40th birthday in NYC with dear friends, seeing Sponge Bob and Phantom of the Opera, visiting the 9/11 Memorial, taking Uber for the first time, eating some delicious food, and getting to experience "real" NYC in all of its glory *  Working with a great group of tea...

"Because of Dr. Campbell, Owen is alive and thriving and able to experience so much in life! Thank you Dr. C for giving our Owen a chance! We will miss you greatly! You have truly touched so many lives!" -Owen Theriot  "It has taken me all day to put my thoughts onto paper. In 2002, Sarah’s medical file was taken to San Antonio to be looked at by Dr. Campbell. We were then sent to Pittsburgh for Sarah to be evaluated by Dr. Moreland. Sarah was accepted into the VEPTR program and our journey started.  My daughter was not supposed to live past 2. She will be 18 in September. How do you put into words how grateful you are to the man that invented a device and procedures that saved your daughter's life? It is quite impossible to tell him just how much he meant to our family. The kindness, compassion, and the love he showed every time we saw him was outstanding! To think that he is gone just makes my heart so sad. He gave my family hope and a quality of life she nev...

If there was any doubt about the love and compassion Dr. Campbell had for his patients, please read what "Campbell's Kids" had to say about their surgeon. --------------------------------------------------------------- "I can fix a broken bone, but I can't fix a broken soul. Let him do what he wants." -Xavier, age 6 "Dear Dr. Campbell, I liked when you took care of me when you came in my room. I liked you were my surgeon for years and years. I liked you were my doctor until you went to heaven to do surgery." -Roman, age 7 "Dear Dr. Campbell, I can't believe I will never see you again! I am very sad! I miss you so much! You are a great dr.! Thank you for always " having my back" and taking such good care of me! You will always be in my heart forever! -Luca, age 7 "I was very sad that Dr. Campbell has passed away. He was the best doctor in the universe. Best memory of him is all of them and the fac...

“To say Dr. Campbell was a hero is an understatement. We should all be as lucky to leave behind a legacy such as his. The number of lives he saved as both a surgeon and an inventor (with Dr. Smith) of the VEPTR device truly made him an angel among us. Even though he was world renowned, he was the most humble man who just wanted to help kids.  I will forever be grateful for him. I’ve told him so many times that saying thank you will never ever be enough. He gave me the most amazing gift ever:  he gave hope for Madden when other doctors had given up. He saved Madden’s life. He always managed to see the potential in all of his veptr kids, never focusing on the struggles or medical equipment they may have. He continued to remind me that Madden’s trach/vent are just a bridge to a long healthy life. He always managed to relate to these kids, like somehow he knew deep inside what they were feeling.  One of his best sayings was always, “I can fix a broken rod, I can’t...

“There are no words to express how deeply shocked and saddened we all are after learning of the passing of our beloved, Dr. Campbell.  This is an enormous loss for his family and for all of us as well.  Our hearts have been broken in the most painful way. We cannot feel life's losses without first feeling the blessings of its fullness. Dr. Campbell has blessed thousands of lives, and we will all be eternally grateful to him.  Each life is touched by others.  With Dr. Campbell, the touch was compassionate and loving, and will linger forever.  Our family has umpteen blessings to be thankful for, and Dr. Campbell tops that list.  He may have claimed to be "nothing special", but to us, and thousands of grateful others, he was nothing less than an angel on earth - our hero and savior and lightyears beyond any kind of "fantastic" word we can think of.     We were introduced to Dr. Campbell when our son, Luca, was 11 months old.  The moment...

"Although we have never met Dr. Campbell, words can’t describe our gratitude. Two years ago, our surgeon told us that VEPTRs were our daughter’s only hope. Now, two years later, our daughter’s 3 VEPTRs have allowed her to grow and thrive beyond our expectations. We are forever grateful for this wonderful doctor." -Cheryl Rawlings “Mourning the loss of this wonderful man, doctor, surgeon and human. Dr. Campbell was the co-creator of the VEPTR implant that Erin received when she was 3. He helped thousands of children to be able to breathe, get straighter, live healthier, and longer lives. He was practicing in Texas when Erin was eligible for implantation. Due to a scheduled presentation at Cincinnati Children's Hospital Medical Center (CCHMC), Erin's surgeon, Dr. Alvin Crawford, was able to have Dr. Campbell in the operating room with him. Erin was the first "Rib Kid" at CCHMC, and was blessed to have both of these surgeons doing her surgery. We will...