Life as a Leach

A friend posted this , and I casually clicked on the link because the photo that was there was of a baby in the NICU.  I figured I might be able to relate in some way and wanted to check it out. Oh my, the tears!  Could I relate?  Oh yes! If you don't have time to read the entire post, read this part below where she describes the thankfulness she has for her daughter and know that this is totally my heart.  What a beautiful expression of gratitude.  Thanksgiving is every day. I don’t need a calendar for Thanksgiving now , all orange and brown, marked by apple cider and falling leaves. You rolled over and it was Thanksgiving, hot summer sun beating down on the window. You spoke a single syllable and it was Thanksgiving, snow falling softly from the night sky. You took shaky steps toward us and it was Thanksgiving, blooms still in buds outside. I know that our story could have ended differently and I’m still counting the Thanksgivings with heartbeat...

A new take on gratitude on this Thanksgiving.  I love this song.

My boy loves World War II.  This book is a pretty intense, high-level book.  He absolutely loves learning about each battle, examine the maps that show the invasions, and identifying the "good" guys and the "bad" guys.  He has a lot of questions, so it's a good thing that WWII is my favorite too! My van is in my garage for the first time in 3 years.  We got a beautiful storage shed, threw a lot of stuff away, took a lot of stuff to the thrift store, and loaded up the shed.  It's wonderful to have my van back in the garage!!! Abby got Lambie (from Doc McStuffins) a few weeks ago.  I think she's the new favorite.  She goes everywhere! This is the rough draft of a thankfulness book Caleb is working on in school.  He's such a sweet boy.   I'm thankful that he "gets" it!

Recently, Abby's preschool took a trip to a local farm to learn about the animals and pick a pumpkin.  (If you are keeping a grand total of pumpkin-picking, we're up to 6 pumpkins.)  Sadly, they didn't decide on a date until the last minute and I was already leading a staff development on the day that was chosen, so I wasn't able to go.   Thankfully, Matt is off on Mondays and enjoyed a little Daddy-Daughter time. Plus, anywhere with Anna is fun! Matt was my photographer, so I have no idea what this is.  A dog?  A goat?  A gigantic rat?  Who knows, but she's petting it!  Kids enjoyed time in the corn pit! Everybody checking out the animals! I have more pictures, but I'm very careful not to post pictures of non-family members without permission, so I've limited it to the ones that don't show faces.  But I think you get the idea.  Abby loves going to the farm, no matter where it is!

For whatever reason, it seems we talk about Heaven and dying a lot in the car.  I guess Caleb runs out of topics and his mind just wanders to it. So, we were again talking about Heaven in the car and Caleb said that he wanted to do two things in his life. 1.  Stop smoking in the world (not a bad wish, I have to say!) 2.  Die when he gets old, like older than Momma.  (glad he doesn't consider me "old" yet.) I told him that I hoped he would live a long, full life and die when he is very old.  I also reminded him that God wouldn't take him a second before He wanted him. My sweet boy then commented on how he is more happy for Christians when they die, because they get to go to Heaven and be with Jesus.  He's just sad that they're gone. Before you are too amazed by that... ...his next thought was, "And I can't wait to go to Heaven, because it's perfect.  So you know what's in Heaven?!  More Legos!!!"  Oh, Caleb. ...

A few weeks back, we had a visit from Grammy and Pop.  They hadn't seen the kids since May, so it was nice for them to catch up and see how much they've changed! We went to a pumpkin patch with some of their cousins.  It was a chilly day, but it was fun! We picked out some pumpkins... ...went down the inflatable slide... ...visited a poor turkey with a destiny with a carving knife... ...played on the moon bounce... ...took the obligatory head-through-the-hole pictures... ...and even threw a few tantrums! It was a fun day with cousins and grandparents! Later that night, mommy the kids carved their pumpkins. We only get to see Grammy and Pop a few times a year because they live in North Carolina, so the kids really enjoy spending time with them when they are here.

Dear NICU doctors,      You probably don't remember me.  The last time you saw me, I was hooked up to a ventilator, had a trach, and was fed through a gastrostomy tube.  I was a mere five pounds when I was transferred to the rehab hospital, and I was only even allowed to wear clothes for just a few days before my departure.  I had lots of salt and pepper hair and huge brown eyes that seemed to stare right into your soul.  This picture might help you remember.      I'm Abby, and I'm a miracle.      I'd be willing to bet you don't remember some of the conversations you had with my parents.  After all, you have hundreds of tough conversations each year.  But they remember.  They remember how they were stopped in the hallway and callously asked what they wanted to do when I coded.  After getting over the initial shock of that question, they begged the doctor to do whatever he could to save my...

This little cutie is on the ad that was sent out by RMH Baltimore about the Give a Hand fundraiser going on at McDonalds.  If you haven't already, please consider visiting McDonalds and purchasing some Give A Hands to support the Ronald McDonald House.  All Give a Hands purchased in Maryland will go right to our second home in Baltimore!  (Or, if you aren't local, your donation will go to your local RMH, which is awesome too!)  Thanks so much for your support! 

Last week, we went to audiology and ENT.  We were following up on Abby's not-so-great hearing test from last March because our ENT wanted to make sure that her hearing really was getting worse before we put her under anesthesia for tubes again.  With the airway being such a huge concern, we really have to weigh pros and cons.  In March, her left ear was border-line and her right ear was showing moderate hearing loss. Well, the decision this time was pretty quick and easy because Abby's hearing in her left ear was significantly worse and the right ear stayed equally as bad as it was in March.  So now that Abby's showing moderate hearing loss in both ears and we're noticing issues at home as well, our ENT said it really was time to do tubes again.  This will be set #3 in two years.   He wants to get the tubes in soon because, as we know, the hearing issues also affect the speech.  However, we're waiting until after our upcoming pulmonology appoint...

Head to McDonalds sometime this week and buy a Give a Hand.  All donations will go to the restaurant's local Ronald McDonald House (so all Maryland McDonalds will donate to our Baltimore House!) I know some people have issues with McDonalds' food (although I seriously love their iced tea!), but consider sacrificing your diet to help out a good cause, just this once.  :) And I just found out that if you donate, you will get a coupon for a free french fry!!!!

Have you ever felt awkward and inadequate when trying to give comfort to a person facing a major medical illness?  I used to stumble over my words or just give a feeble, "I'm sorry."  I may have even been guilty of saying, "This is all part of God's plan" a time or two. Now being the mother of a daughter with chronic health issues, and having been the recipient of lots of well-meaning cliches, I understand that people just want to show their support.  They may not quite know how, but they want to let you know that they love you and are pulling for you.  I appreciate that! I did want to share a few phrases that, in my opinion, are not very helpful when you are in the midst of a medical crisis.  (Note:  if you're reading this and think you might have said one of these to me, please know that I was not offended and appreciated your support!!)   :)  This is just something that I have talked with other special needs parents about and read about...

I finally went to the doctor yesterday for an annoying cold I've had that wouldn't go away.  I always wait as  long as I can because it upsets me when I do go and the doctor says there's nothing he can do.  Welp, it was a good thing I went this time, because I had a definite wheeze and was working on pneumonia!  I'd already been taking my inhaler several times a day because of coughing fits.  Now I'm on a strong antibiotic, Prednisone, and a nasal spray. No cough syrup seems to be helping me get through the night, so here I am up at 3:00 a.m. with Prednisone Munchies and a hacking cough.  Blogging seemed like the logical choice. I mentioned our RMH friend Reagann a few days ago.  She is still in need of prayers and a miracle!  She has a syndrome called ROHHAD that complicates her respiratory status, among other things.  But this illness is unrelated to that.  The way I understand it (and I could be wrong because it's all pretty comp...

As a special birthday treat for Abs, I set up a home spa for Anna and Abby to enjoy.  They LOVED it! First, we started with the foot soak.  This went pretty well until the splashing started. Then it was time for facials.  The girls both thought this was hysterical! Soaking off the face mask. I braided Abby's hair for the first time.  She loved it! I put a little make up on her too.  Anna didn't want any, saying, "Make up is for Mommies!"  I think she's heard that a few times when she's been caught playing in her mom's make up!! I straightened Anna's curlies.  She thought it was beautiful, but Amy prefers her curls.  I do too.  It fits her personality. After the spa time was over, they watched a few episodes of Abby's new Hello Kitty movie.  I simply love how close these girls are.  Heading in from the playground the other day, Abby put her arm around Anna and put her head on her s...

We always wake the birthday girl or boy up with a rousing chorus of the Happy Birthday song.  October 22nd was no exception. Abby was just a little confused. She got over it quickly though! Abby opened her presents, which included: a recordable Cinderella book.  Every time she listens to it, she gasps when she hears me say, "I love you, Abby!" at the end and asks, "Didja hear that?!" She loves her Strawberry Shortcake house and car! The tutu was also a big hit.  She wears it just about every day.  :) Ignore the early morning faces...