Life as a Leach

Enjoy this little interview with Abby! What is your full name?  Abigail Elizabeth Joy Leach What does your name mean?   They all mean Joy except Leach What are your favorite toys?   Playmobile, Barbies, stuffed animals, and dolls What is your favorite color?   PURPLE!!!! What do you want to be when you grow up?   A veterinarian for baby red pandas and a horse rider trainer and a veterinarian for dogs and cats and bunnies and pigs What do you like to do when you have free time?   I like to play with my Playmobile characters, play with my brother with Legos, and I like to sing and dance, and I like watching my brother singing a song in his play. If you could go anywhere in the world, where would it be?  Australia because I want to visit the beach and the koalas Who are some of your favorite people?  My mom, dad, Caleb, Chloe, grandparents, cousins, my aunt and uncle, and Mrs. Danielson If you could meet a famous person, who woul...

We drove up to NYC today, dropped off mountains of Abby’s medical records at the Spine Hospital, and then headed to CHONY.  We scheduled a tour of the hospital with child life to learn about the hospital and help Abby to feel more comfortable.  She was worried about CHONY being different than CHOP, but is feeling much better now! The hospital has playrooms and we have access to all of them—not just the one on our floor!  There’s foosball and air hockey too, so she was excited about that.  She will have her own room, which also has a mini fridge in it.  That is very exciting for me!!  The rooms are pretty much what we are used to, so everything looked more familiar than she thought it would be.  The cafe on the first floor is pretty tiny, but I think Door Dash will work fine.  There’s a Valentine’s Party tomorrow on the main floor that we should be able to go to for a little while.  They have lots of special events, and just this week an actin...

This weekend was pretty fun and busy!  Matt took a group to  Urban Hope  this weekend, so it was just the kids and me.   On Friday night, my parents and my nephew went with us to do an activity hour at RMH.  We decorated winter picture frames and snowman door hangers and had a hot chocolate bar set up.  Everyone seemed to enjoy it, although we had a small crowd.  Usually, people come out of the woodwork for the hot chocolate bar! Saturday was a Raddish cooking day that ended up not going as planned.  I sliced my thumb using a slicer for cucumbers. After much deliberation, I decided I didn’t need stitches.  I probably should have gone, but I didn’t feel like dealing with it.  Thankfully, I have a plethora of wound care supplies and have been dutifully caring for my thumb twice a day.  We managed to complete the meal and had a delicious Swedish inspired dinner.   My niece and Caleb also got together to work on some lessons f...

Thank you to all who have reached out to us.  We really appreciate your sweet comments, and especially your prayers.  After Abby was accepted as Dr. Lenke's patient, we prayed that there would be a clear decision about what to do next.  That prayer was definitely answered, even if it wasn't what we had hoped for!  The last few days have been filled with processing, researching (shocker!), questions, and discussions.  Abby is definitely processing and is much more aware this time around. She is nearly 3 years older than she was in her last surgery, and she has some big feelings.  We are helping her work through them and giving her the space to share her thoughts.  She has also started writing in a journal, which I think will help her to process.  It seems like more and more things pop up that she is going to miss because of being in the hospital, and each time brings fresh tears. We have learned quite a bit about the hospital and the surroundin...

Oh CHOP... We have had an ongoing disagreement with CHOP orthopedics over which pulmonologist we should see.  We adore our pulm at Hopkins.  She has been with Abby since the beginning and really gets the whole picture.  She truly cares about Abby and we feel like she always has her best interests in mind.  CHOP ortho really only seems to value the opinion of their own pulmonologist with the Center for Thoracic Insufficiency team.  We have nothing against him!  He is a very nice guy and very knowledgeable, but we see no need to switch pulmonologists when ours is wonderful and 2 hours closer.  We don't care for the attitude of superiority we sometimes feel at CHOP and feel like all of her doctors should work together to give her the best care possible, no matter where they work! (Not to mention, Hopkins is not a two bit hospital!!) With Abby's recent lung decline and us feeling that a surgical intervention is needed, Abby's pulm has been communicatin...

Dear Abby Joy, Once upon a time, your mom was a blogger who wrote almost every day...life has gotten away from me, but I figured what better day than your birthday to start blogging again?! Nine. Years. Old.  Where did the time go??  I still remember every vivid detail of your birth day.  After only being released from the hospital two days before, I started having contractions that didn't stop after I took my medication.  Daddy was at a meeting at the church, so I called Uncle Bruce to take me there and pick up Caleb.  He was worried about my water breaking in his police car, so he made me sit on towels!  We met Daddy, then he raced up to Baltimore to the hospital where you were to be born.  You were determined to come fast, and the doctors scrambled to get everything set up that you were going to need.  We thought you were going to be born on October 21st, the way things were going, but you waited until just 12:12 a.m. to be born. You flew...

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! ...

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...

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...

Abby had a pulmonary appointment today, and it was awesome! I shared all of the pulmonary data we collect each day, and showed her how her high respiratory rates are trending down.  Abby also did another Pulmonary Functioning Test.  For the first time in a year, she was actually able to do the entire test without getting too exhausted to finish!  Her lung volumes have increased to 30%, which is amazing!  (It's all relative, but 30>15!!)  After discussing with her pulmonologist, we decided that we could cut the morning bipap time and also reduce the amount of saline nebs we do per day.  This gives us SO much more freedom and makes her respiratory treatments so much quicker!! Our pulmonologist was just ecstatic about how much better Abby was doing!  We are so thankful! The icing on the cake was that Abby's blood draw was super quick and on the first try.  We were in and out in 5 minutes!  Side note:  A year ago today, Abby cam...

My girl brought home her first foot for PE today!  She has done 25 laps to earn it...a pretty big accomplishment for a girl who was never supposed to walk and who has a spinal cord injury! PE is modified for Abby to meet her needs, but walking this much is still pretty challenging for her. Look at my girl go!!!!  We are so proud of her!

Looooove good news days!!!!   We came to Philly last night for appointments today and tomorrow.  We got into RMH, so Abby enjoyed playing with another little girl and racing remote control cars in the playroom.   Today, Abby had a CT scan, X-rays, orthopedics, and plastic surgery.  Obviously, our biggest concern was Abby’s lung volumes and the future of her chest wall reconstruction.   Abby’s lung volume on the right side (the side that has no veptr) has improved significantly!!  Dr. Campbell is really happy and we can schedule an expansion for the left side for August!  Her plastic surgeon was also pleased with her back healing!  Woo hoo!!  We are absolutely thrilled and thankful for the healing God has been doing in her little body!   To celebrate after a busy morning of appointments, we visited the Please Touch Museum.  The ceiling of the museum Tons of toys make up this torch!! Riding the carousel The baby needed an MRI :) We fo...