Life as a Leach

On Monday, Matt and I met with Abby's preschool teacher for a conference.  She meets with all of the parents to discuss strengths and weaknesses before kindergarten (Abby has another year, but she's in a class with older students).   I couldn't stop the tears from falling when she said, "If I didn't know that Abby had concerns, I would never suspect anything."  This woman has known our family for so long and she is well aware of how far Abby has come.  Her words meant SO much to me.   When you have a child who you were told would be little more than a vegetable, you learn to be thankful for every milestone.  You try not to compare to other kids and just celebrate as she gains skills, but you constantly Google age-appropriate skills to see where she falls.  You pray from the beginning that she will have a natural love of learning and are so thankful when she does.  You incorporate learning into everyday play and live a therapy lifestyle.  ...

Our family had a rough weekend! First, on Friday, Abby's gtube really started hurting. The site turned red and was raised and spreading.  We called our pediatrician on call (who just happened to be OUR wonderful pediatrician!) and he suggested an antibiotic cream that I had in our med box.  You start a collection of those sorts of things when your kid has multiple stomas!  He said to call him on Saturday if the stoma wasn't better or if it was oozing.  Welp...it was.  So I called, and our wonderful ped saw her on Saturday morning when the office was closed.  He is SO great!  Abby got on an antibiotic and is turning a corner now! Saturday afternoon, Caleb jumped down out of his friend's truck and landed weird.  Saturday night, his knee started hurting really badly.  I took him to the ER Sunday morning for an xray.  Thankfully, it's not broken.  They didn't give him crutches and said that the best thing for a sprain is to walk on ...

Recently, I learned about an awesome organization called I Run For.  It all started two years ago when a guy who liked to run named Tim decided to dedicate his runs to a boy with Down Syndrome named Michael who had physical challenges that left him unable to run.  Since then, Tim and Michael have created an organization that matches runners with special needs kids!  The runners dedicate their runs and workouts to their buddy.  You don't have to run marathons--or any races at all, actually--to be matched.  The main focus of the organization is to help build relationships between special needs kids and loving adults who want to be part of their lives. The coolest part of this whole thing is that there is a waiting list of over 2,000 runners waiting to be matched with a buddy!!!!  I was floored when I found out that SO many people were excited about building a relationship with a special needs child! I signed Abby up last week, and we were quickly matched ...

"When I grow up, I want to be a mom just like you.  I can't wait to be a mom!" "I wish baby Jesus would come to my house so I could hold him and give him kisses!" "I hope I get to go to the hospital and play in the playroom again!  I just love the hospital!" "Chloe, you are so sweet.  I just love you so much!" "I'm an adult now because I'm four.  You don't make the rules anymore."

Abby has really started to enjoy cooking with me!  She loves pulling a chair up to the counter and helping me measure and dump things into the bowl.  Yesterday, she announced she wanted to make her own peanut butter "samesh" (sandwich).  Well, you bet I jumped on that one!  And guess what?!?!  She ate a ton of it!!  Woo hoo!!! My girl loves to wear her apron and be my "little helper."  She loves our "girl time" even more and tells me that whenever it's just the two of us!  Not gonna lie...I love it too!

Oh my.  I've been neglecting my blog recently.  Between illnesses (and therefore going to bed very early), attempting to work out on a regular basis, and working on a project for work after the kids go to bed, there hasn't been much time.  I don't blog while the kids are awake, and those precious few hours have been spent doing other things! So what's new?!  *  Caleb turned 8!  We had a fun laser tag party the day after his birthday.  He loved having some of his close friends and cousins with him.  I only questioned my sanity a few times!  :)  No, it really was fun.  Pictures are coming--promise!  Favorite gifts include some new Lego sets, lots and lots of books, several Amazon gift cards for his Kindle, and an awesome microscope and slide set.  He is a happy kid! *  Abby's pancreas and liver issues appear to have subsided. Her blood work is back to normal and the new reflux medicine has finally allowed her to k...

My dad recently saw a bumper sticker that said "Joy in the Journey."  He knew we would like it, so he looked for it on the Internet but couldn't find it.  So what did my awesome dad do?!  He made one!  I love it!  It fits right in with my other bumper stickers (rare disease and RMH!). Thanks so much for the thoughtful gift, Dad!

Dear Caleb Boy, I can't believe you are 8!  I still remember your birth like it was yesterday.  I was so scared, and nervous, and excited, and anxious...all wrapped up in one!  You took forever to make your appearance, but I remember the first time those sweet little eyes looked up at me.  All of the stress from the day melted away, and the reality of I am a mom!  set in.  You made me a momma!  I am so proud of the little man you are becoming.  You are a kind, compassionate, quirky guy who loves God,  Star Wars (perhaps it would be better described as an obsession!),  dancing,  and your family.   You're still quite a hugger, which I love, and you promise me that you will never be too old to give me a hug and a kiss goodbye!  I'm gonna hold you to it!   Our life isn't easy at times and I don't pretend that Abby's frequent hospitalizations aren't hard on you.  Bu...

Have you ever tried Jamberry nails?  They are nail wraps that make you look like you got a fancy manicure for a fraction of the cost.  I got into them a few months ago and have enjoyed trying out different styles of Jams.  These are my current Jams: A friend of mine, Chenoa, is hosting a Jamberry fundraiser to benefit The Baltimore RMH. 30% of all proceeds will be donated to RMH in honor of Abby!  In addition, Chenoa has custom designed a beautiful Joy Jam to honor Abby Joy! This Joy jam is $18.75 plus tax, and needs to be ordered by contacting Chenoa on the email address on the picture.  I've already ordered mine! :) All other Jamberries are typically $15 and are also included in the fundraiser.  Visit this website to place your order:   http://chenoaherrick.jamberrynails.net/party/?uid=4fa2ff10-f97b-43f8-b2c5-c70ee0a37514   You can also be part of the Facebook event here: https://www.facebook.com/events/633581033430807/ Orders can be placed betw...