Life as a Leach

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