Thursday, January 29, 2015

Thankful Thursday

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.  You know you are working so hard, but you always wonder if you should be doing more.  You get more creative and find activities that "kill two therapy birds with one stone!"  

So many questions ran through my head as I entered that conference.

Is she participating in class?

Are the other kids be able to understand her?

Can she express herself?

Are her hearing issues getting in the way of her learning?

Is she behind on her academic skills?

Do her fine and gross motor delays cause her trouble in class?

Does she have friends?

And then you hear that this.  After four years of worrying, after endless hours of therapies, after nine surgeries, after so many prayers from so many people, you hear that your child is just as typical as all of the other kids in her class.  It hasn't been an easy road, but it's been worth it. 

All I can say is thank you.  

Abby has had a wonderful group of therapists and teachers who haven't made excuses for her.  They have pushed her, cheered her on, and come up with creative ways to help her learn.  They hold her to a high standard and celebrate her accomplishments.  I know they are cheering for this one too!  Thank you.

So many people have prayed for Abby over the years.  Many have prayed specifically for her development.  I don't doubt for a second that these prayers have contributed to her success!  Thank you.

We have said since Abby's birth that our God is bigger than statistics.  We don't need Him to prove it, yet He has once again.  He has shown us in so many ways that He is with us every step of this journey.  Thank you.

So and every day.

Tuesday, January 27, 2015


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. 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 it.  Cue tough Momma!  Go get your snack yourself, buddy!  :)  He's doing much better now.

In the middle of the night Saturday-Sunday, Matt got up with an aching Caleb.  I stayed in bed until I heard a loud thump and thought maybe Caleb had fallen.  I went in there to find Matt face down on the floor.  I called his name several times and realized he was unconscious, making a humming noise.  I worriedly asked Caleb what happened and all he knew was that Daddy fell over all of the sudden.  I shook Matt a few times and he came to, but he definitely passed out. Thank the Lord that he fainted the direction he did, or he would have hit his head on a dresser and gotten a concussion!  He was white as a sheet and very shaky and dizzy, so I told him to stay seated while I got him some orange juice.  I went downstairs and suddenly felt dizzy myself while pouring the juice.  My ears started pounding and ringing in the same way that has happened before when I have fainted.  I laid down on the floor to avoid falling, but I crawled to the bathroom because I thought I was going to be sick.  I looked in the mirror and my lips were blue.  My forehead started tingling and feeling very, very cold.  I drank some orange juice myself and managed to crawl back up the stairs to give Matt his.  When I described my sudden symptoms, he said he had exactly the same symptoms.  The only difference was that I was having a lot of trouble breathing, but I think my cold and asthma were playing a part in that.

Meanwhile, poor Caleb was still in a ton of pain and neither of us could tend to him!  After 20 minutes or so, we finally felt better enough to help him, then dragged ourselves back to bed.  Telling this to my mom and sister the next morning, they started thinking it was mold, carbon monoxide, or something else environmental.  My brother in law brought over their carbon monoxide detector, but it was fine.

Sunday, I felt absolutely horrible and was very sick.  Matt had similar symptoms but was at least not vomiting--that put him on kid duty!  After talking to others who said they had similar issues, we are attributing all of this to a crazy, nasty virus that our kids have so far managed to avoid.  

I took Nyquil, put a little essential oil concoction in my diffuser, and went to bed before 8 on Sunday.  I slept for a solid 12 hours and felt like a new woman.  Matt took a nap on Monday afternoon and is feeling much better now too.  Hopefully, we are all on the mend, but it was scary!!!

Monday, January 26, 2015

I Run 4

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 with a buddy in just a few days.  Meet Ally!

Ally and Abby ran their first 10K on Sunday!  :)

Ally is the mom to a baby boy who is currently living in the UK...but get this!!!  She's going to be moving to Maryland next year!!!  Her husband is in the military and they have already gotten their orders.  We are very excited to meet her when she moves here! Ally has been on the waiting list for Irun4 since July, and she seems as excited to have Abby as we are to have her!  Abby has enjoyed getting to know Ally over the past week and seeing pictures of her.  We are looking forward to building a relationship!

If you are interested in learning more about Irun4, either as a runner or as a buddy, visit

Who do you run for?!

Friday, January 23, 2015


"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."

Thursday, January 22, 2015

My Little Helper

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!

Wednesday, January 21, 2015

All the New Things

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 keep her food down and gain the weight back!  Hallelujah!!  As of tonight, we are finally able to start weaning her nighttime formula requirement!  Woo hoo!!!!  (This is what we were supposed to be able to do almost as soon as she had her surgery, because she was never supposed to come home on gtube feeds in the first place.  Best-laid plans...)

*  I am trying really hard to live a healthy lifestyle.  I'm excercising regularly, eating very healthy foods, and drinking Shakeology.  (Don't worry--I don't sell it!!)  I gotta's not a whole lot of fun.  But I'm trying to eat foods that help me to stay full and enjoy snacks of fruits.  I'm also trying to declutter by selling stuff on the online yard sale.  I am loving earning a little extra money while clearing out some of our extra "stuff."  Of course, I'm buying a few things off of the site too!  :)  My most recent purchase was a loft for Abby!  It has stairs instead of a ladder and lots of storage space.  She is SO excited! We are going to put it up this weekend.

*  Chloe has become quite a playful pup!  She chases her toys all over the house and loves to run around outside.  Ever since we got our back yard fenced in, she just loves being outside.  We played frisbee with her today and she had so much fun!  But she also really loves lying right in front of our gas fireplace.

*  There's like nothing new with Matt except that he's gelling his hair!  :)  Lol, I really can't think of anything!

Here's a picture from today.

Abby and Chloe had a tea party while I cleaned out her armoir (we are going to sell it with the matching crib, since the loft has plenty of storage space).  Chloe is such a good dog!!

Tuesday, January 20, 2015

Joy in the Journey

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!

Friday, January 9, 2015

A Letter to My Son

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!), 


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.  But you handle it so well, Buddy.  And to say you adore your sister is an understatement!  I love watching you with her.  The two of you have such a special bond.

 I love you, Caleb.  You're my favorite little boy!  Happy birthday!


Saturday, January 3, 2015

Joy Jams!!

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: 

You can also be part of the Facebook event here:

Orders can be placed between now and January 29th to be included in the fundraiser, and everything is shipped right to you!  

If you've seen Jamberries before and want to know more, just ask!