Life as a Leach

Are any of these phrases new to you?  Try using them in everyday conversation!

As you can imagine, COVID 19 has caused us quite a bit of stress!  We are doing everything we possibly can to keep Abby safe, including working from home and not going anywhere.  We used Instacart to grocery shop and wiped everything with disinfectant wipes on the porch before bringing anything inside.  We also wore gloves!  There are many unknowns right now regarding Abby's surgeries.  Her orthopedic team canceled all of the pre-op appointments we were supposed to have next week and in April because all outpatient appointments are being postponed for the time being.  This means we will not be meeting with ortho, infectious disease, plastic surgery, pulmonary, and ENT right now.  All elective surgeries in New York have been canceled for the time being, but it is unclear as to when that order will end.  Right now, the orthopedic team still has Abby on the schedule for her surgery and subsequent inpatient stay in May.  It would take a miracle or two to be able to reschedule all o

Many of you found the academic activities I shared to be helpful, so I have compiled some more.  I know doing the same thing can get boring and variety is key...especially if we are out of school for much longer than originally planned. 😒 *  This is a set of free printable maker station (STEM) activities.  You will want to scroll through and probably just print the ones that appeal to your kids.  I do like that there are QR codes for each activity with additional resources. * Check out this list of online field trips and even more online field trips ! Kids really enjoy these.  Just make sure there's a writing component involved so that they aren't just clicking and scrolling!  Have them write in a journal about what they learned.  For older kids, you will want to move them past the "fact listing" and have them write about how they can use the information they learned or how it applies to something else they already knew. * I share this one with caution.   When

While being on an extended break with my kids and being responsible for their learning isn't that big a deal to me because I do this for a living, I recognize that not everyone is a teacher and isn't able to come up with educational things for their kids to do each day.  No one wants their kids to just play video games and watch TV all day!  I figured I would share some things I have found that would help others while their kids are at home. All of the websites I will share are free or just require a free registration!  Unless otherwise noted, I have checked these links for viability.  I hope you find these helpful.  Please let me know how you use the activities! * First, let me say that writing should be a part of just about everything you do.  If your child does a science experiment, have him/her write claims and evidence about the experiment.  If you explore an online museum together, have children share about three of the most interesting exhibits.  Writing is key!  *

When I wake up in the morning, I automatically look over to see if you are in your bed. But you're not there. I get myself ready, then go downstairs to make coffee. I call for you to go out, not even remembering that You are gone. The house is so quiet. When I get home from work, Reality smacks me in the face When you aren't there to greet me with your whippy tail. I subconsciously glance out onto the deck To see if you are ready to come back inside. But no one is waiting at the door. The house is so quiet. There's a chill in the air, So I turn on the fire and look to see If you are in your favorite seat in the house. But it's empty. You loved that fire. I sit in your spot and cry. The house is so quiet. Daddy cleans up some toys in the playroom And the squeak of the wheels of a car Sends him sobbing. Why? Because it was the last thing you reacted to Before you were gone. The house is so quiet. Night time is the hardest for the kids, Whe

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 would you want to meet?   Idina Menzel beca

Thank you for all of the purple pictures and well wishes!  Abby made it through her MRI and we are on our way home now.  The mri took 2 hours.  The first hour was great.  She took a break, went to the bathroom, and then the second half was rough.  It probably would have been better if she had just plowed through and not taken a break, honestly.  Her back was really hurting and she cried the last half an hour. 😢. But she finished!! Here are some pictures from last night and today:  A visit to Carlo’s Bakery  The Stage Door Tour at Radio City Music Hall meeting a Rockette visiting the AG store having fun at a Valentine’s Day party at the hospital I totally forgot to take a picture, but we also finally got to meet another VEPTR mom friend who lives in NYC!  She is the sweetest and brought Abby a big basket of treats, which made her day! We are grateful for your prayers and grateful to be going home!

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 acting troupe AND students from Julliard performe

Tomorrow, we will head to New York to CHONY.  We have a tour of the hospital scheduled in the afternoon and need to hand over the MASSIVE amounts of medical history CHONY needs from CHOP!  On Friday, Abby has a CT scan and an MRI.   Until today, we thought Abby would be doing the MRI under anesthesia.  During my pre-op phone call with the nurse, they didn’t like that Abby had recently been on an antibiotic for lung issues.  She wasn’t sick—it’s just the way her lungs our.  Our pulmonologist said she was fine for the MRI, but CHONY didn’t want to risk it.  To avoid the nightmare it would be to attempt to reschedule, Abby will be doing this MRI awake.   She did it awake once before out of necessity (long story, but she couldn’t be intubated).  It was NOT pleasant, but she did it.  Please pray that all goes well.  We have music and I’m going to read aloud to her. We are also hoping Child Life will have some tricks.  If she can’t do it, we will have to come back and do it under anesthesia.

A huge THANK YOU to all of you who have purchased shirts to show love to Abby and support our family!  If you would still like to get a shirt, the sale will end Tuesday evening.  There are tshirts, sweatshirts, long sleeved shirts, tank tops, and youth sizes available.  Shirts will begin shipping on February 5th. Click here to choose a shirt style. Thank you so much for loving us!  

I often think back on my life and realize how God has prepared me for so long to be a special needs mom.  During last night's insomnia, I was thinking about what I would say to a younger me. 17 year old me, it's not by accident that you are working with that student with special needs and a trach each day as a guidance office assistant.  God is exposing you to trach life and allowing you to see how much more there is to a person than his or her special needs.  You are able to see that having a trach is just another way to breathe, and it's not as big of a deal as it seems.  You will draw upon that often in the first few years of Abby's life. Young, married, pregnant with your first child me, you sat on your old couch one night in your tiny little house and told Matt that you felt like God had called you to be a parent of a child with special needs.  You didn't know what that meant at the time and wouldn't for nearly four more years.  Matt will remind you of

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 for Fellowship of Christian Athletes.  They have really taken on

My days off are filled with phone calls, emails, looking for housing (but not anymore!!), and locating medical records these days!  Yesterday, I was able to talk to a Child Life Specialist at CHONY about the possibility of getting a tour of the hospital when we are there for Abby's MRI.  Abby is still very anxious about switching from CHOP.  Honestly, she seems much more worried about that than she is about the surgeries or halo!  Child Life is amazing in general, so I knew that I could get some help if I reached out.  This specialist was so sweet and happily scheduled a tour for us.  She even asked for some info about Abby so that she could personalize it to her needs and interests.  She also let me know that they are very familiar with working with kids with halos and will make sure she has plenty of fun while she is there.  Another nice thing is that this Child Life specialist who will give us the tour will also be the one who will be with Abby during pre-op and post-op, so

Thank you so much for all of you who have helped us to find affordable housing in New York City!  I tell you what, this was TOUGH!  Most rentals were going to cost us over $10,000 for the time we were going to be there, and that's just not doable when we already have a mortgage to pay!   After a lot of number crunching and weighing the pros and cons, we realized that the amount of time Matt is going to actually be up there does not warrant paying for an apartment for 3 months.  While it would be nice to have a stable "home," it just isn't financially responsible.   So we started looking at Air BnBs that we could rent for just the times he would be there.  That was also a challenge because the vast majority would only refund 50% of your total cost just 48 hours after booking!  Since he doesn't really know when he will be there for sure, booking this far in advance is hard. We do know two dates that he will be there, so we were trying to go ahead and book tho

If you are interested in learning more about Abby's spinal surgeon, I am including a few articles.  He truly is brilliant and widely known as one of the best spinal surgeons in the world.  He only takes the most complicated pediatric cases, and I'm left with mixed emotions that he accepted Abby's case!  All of this is just a tad bit terrifying!  Regardless, we know we are in the best of hands. Top Reasons to Choose Dr. Lenke Article About a Teen Who had a Vertebral Spinal Resection CNN Article About a Teen With a Similar Degree of Kyphosis as Abby Interview with Dr. Lenke

My sister made these wonderful shirts as a way to allow people to show support for our family.  We asked people on Facebook for a word they would use to describe Abby, then my sister used the description to make a heart.  Aren't they awesome?!  If you are interested in purchasing a tshirt, you can click here to get to the website.  There are several different styles to choose from!  Included on the page is information about how we will be using any funds raised through tshirt sales.  Thank you so much for loving our family!

Dear Caleb, 13! A teenager!!!  Wowsers!!!  How the heck did you get so old??  (I'm not old though, mind you.  Just you.  Don't forget that!)  It seems like just yesterday you were the little guy with an amazing vocabulary!    Now you are a much bigger guy with an even more amazing vocabulary! This has been a good year for you, Buddy.  You have done a lot of growing up and are figuring out who you are in this world.  Your life is filled with music and theater, which makes you so happy! Your schedule is just as full as anyone who plays a sport!  I love watching you up on the stage because I know how much you love theater. Listening to your sing your songs as Horton puts a huge smile on my face.  I can't wait to see the finished product! You are SUCH a smart kid--sometimes too smart for your own good!  Ha!  You absolutely love getting lost in a book and have so much knowledge about so many subjects! Your most recent interest of quantum physics kind of baffles m

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 surrounding area.  It seems that the hosp

My blog app on my phone isn't working right now, which means I can't blog if I don't have access to a desktop computer.  I shared this on Facebook and wanted to make sure any blog readers that aren't Facebook Friends with me know what was up! We went to New York Presbyterian on Friday to meet with Dr. Lenke, who is a world famous spinal surgeon.  Many professionals say he is the best in the world.  W e felt like we did the first time we met Dr. Campbell-like we were in the presence of greatness. Dr. Lenke is very similar to Dr. Campbell in his assuredness and knowledge. Dr. Lenke said nothing good will come out of the wait an d see approach because we know what will continue to happen. Her lungs will continue to decline until we lose our window. He emphatically said that the rib to rib VEPTR is not the right choice for her at this point because her kyphosis is the biggest issue. He said her health is not stable enough to put veptrs in and she would almost definitel