Friday, November 29, 2013

The Rhythm of Thanksgiving

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 heartbeats, a new rhythm of life where all of the smallest things really do call for rejoicing.
“Thanksgiving always precedes the miracle.” – Ann Voskamp

Thursday, November 28, 2013

Gratitude



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


Tuesday, November 26, 2013

4 Random Pictures

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!

Sunday, November 24, 2013

A Day at the Farm

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!

Friday, November 22, 2013

Calebism

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.

Then his cousin Sara added that Heaven also has more American Girl dolls.  :)

Wednesday, November 20, 2013

Sunday, November 17, 2013

Grammy and Pop's Visit

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.










Saturday, November 16, 2013

A Letter to the Neonatologists

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 life.  My parents will never forget how that doctor responded with, "Really?"  

     They remember the geneticist who diagnosed me.  My mom can picture sitting in her hospital bed attempting to take notes of what the geneticist said as her world came crashing down around her.  She can quote how the geneticist told them that I would be "little more than a vegetable."  She remembers being told that I would be trach and vent dependent for life, unable to hear, see, speak, or walk.  They will never forget the kindness of the chaplain who gave them so much support in those moments.  They remember the tears they shed as they read the xeroxed page from the medical journal from the 1970s that the geneticist left with them.  It was practically a death sentence as it described my syndrome.  I could hear the anguish in my momma's voice as she quietly prayed by my bedside.  Often, she didn't...couldn't...say anything but please let me have her.  I'll take her any way.  Please just let me have her.  By the way she held my hand so tightly, I could tell she was willing me to fight.  I tried so hard to tell her with my eyes that I was.


     My mom certainly remembers how hard she had to fight to get my therapy started.  She knew the importance of early intervention and wanted to begin working on loosening up my tight hands and strengthening my oral motor skills.  But yet, you resisted.  You kept saying something about letting "nature take its course."  I finally began therapy, but I think it was mostly to get my mom to leave you alone.  It didn't work.  She just moved on to something else!  :)

     She also remembers the kindness of the NICU fellow who believed in me.  She was the one who got the second opinion about my diagnosis and helped us contact the researcher in Boston.  She gave us the support that my parents often felt they didn't have in some of the other doctors.  Do you know that we still keep in contact with her?  That's how big of an impact she had on my mom during that time.

     Pretty soon, it became evident to everyone that I was here to stay.  People commented all of the time on my strong will and sassy personality.  I grew, got stronger, and fought harder day by day.  I remember that beautiful January day when I finally got to see my home for the first time.  It was wonderful to finally be around my whole family at one time!  There were a few close calls and one time when my momma really thought she was going to lose me.  But still I fought.  

     One by one, I crossed off my list of "Abby Will Nevers" as I did them.  First I crawled, then I started taking food by mouth, then I stopped using the vent during the day.  I got my first set of tubes in my ears, I walked, then I got rid of the vent altogether.  I learned some words and signed even more.  Just a few months after being weaned off the vent, I was decannulated and I've never looked back.  That was when my talking really took off.  Two months ago, I got my feeding tube taken out.  I now eat everything by mouth and am doing great!

     On October 22nd, I celebrated my third birthday--trach, vent, and gtube free.  While I have worked hard for every milestone, I am a happy, thriving, typically-developing three year old.  



Have I mentioned that I'm still pretty sassy?!


     Please, the next time you have a baby in the NICU who may seem like a lost cause, think of me.  Give that baby every chance at life.  Fight for that baby!   Remember that baby is a person, not a patient.  Listen to the parents who love that baby more than life itself.  Pour yourself into helping that baby survive.  Research, discuss the case with other doctors, and make phone calls.   And celebrate every milestone that baby makes, knowing that you helped make it happen.  

     Most importantly, don't underestimate the power of our God.  He is greater than any illness.  He is greater than anything.

Wishing You Faith, Hope, Love, and Joy,

Abby Joy


Friday, November 15, 2013

Can You Give Kids Like Abby a Hand?


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! 

Thursday, November 14, 2013

Medical Update

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 appointment at CHOP** to make sure she doesn't need anything else done at the same time.  We'll call to schedule the tube surgery right after we get back from CHOP.


**We are required to see a CHOP pulmonologist prior to scheduling Abby's Pulminary Functioning Test because they apparently think their doctors are better than Hopkins those are the rules.  I tried my darndest to get out of this appointment and offered a variety of letters from our pulmonologist, but they wouldn't hear of it.  So...we will be driving 4 hours, staying overnight, and driving back 4 hours for an appointment that will most likely be 10 minutes.  I'm going to just sit in the exam room for an hour to make it worth my while.


Meanwhile, I also asked our ENT (probably our favorite doctor, next to our pediatrician!) about his thoughts on Abby having a pulminary functioning test done under sedation at CHOP.  He asked a lot of questions and feels comfortable with our thoracic surgeon, knowing that we are part of The Center for Thoracic Insufficiency Syndrome.  That right there sounds pretty official and reassuring!  But he was concerned about the PFT lab (similar to where a sonogram would be done) and that trained medical professionals wouldn't be present.  It's usually just a lab tech and a nurse.

I'll semi-quote him:  "Well, if you were having it done here, IIIIIII would have the test done in the operating room with an anesthesiologist present who is trained in fiberoptic intubation.  But that's just me!"

So, yes, I will be speaking with the pulmonologist when we go in a few weeks to discuss this!  I whole-heartedly agree that Abby would be safest having this test done in a structured environment with everything set up and ready to go.  

I made sure I got our ENT's permission to give the CHOP pulm his name and contact information in case he has any questions.  I have a feeling he will be calling to discuss the pushy mom who is demanding an OR spot for a simple PFT test.  :)

Have I mentioned how much I love that our ENT is so protective of Abby's airway?!?!  He went to great lengths to try out every form of intubation under anesthesia before taking Abby's trach out so that he could keep her safe while finding out how/if she could be intubated.  We know exactly what kind of intubation she has to have.  

He is a genius.  

AND he's nice.  

I'll take genius over nice any day when we're talking about surgeons, but getting the total package is even better.  I just love him.  

Wednesday, November 13, 2013

Monday, November 11, 2013

Give a Hand


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!!!!



Sunday, November 10, 2013

What Not to Say

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 on other blogs, so I fee like it is worth sharing.

1.  God won't give you anymore than you can handle.  This just isn't true.  It's not even really biblical.  CCMS is a whole lot more than I can handle on my own.  I'm pretty sure Reagann's mom is feeling like she can't handle ROHHAD right about now!  I can remember considering this phrase in the NICU and saying, "Ok!!!  That's enough!  I've reached my limit!!!"  The key is that God will give you the strength to handle whatever you are given.  We have this saying hanging on the wall of our living room as a constant reminder that "I can do all things through Christ who gives me strength."  Philippians 4:13.  It says, "God doesn't give us what we can handle.  God helps us handle what we are given."  Check out this blog for more on confronting the lie.

2.  This is all part of God's plan.  At the risk of sounding completely unchristian, please don't ever say this to someone who is dealing with a major illness!  Does a mother really want to hear that it is God's will that her newborn daughter lie helpless in a hospital bed hooked up to countless machines diagnosed with a syndrome no one has ever heard of and a xeroxed page from a medical journal with an almost certain death sentence given to her by the geneticist lying on the table?!?!  Nope.  Is it true?  Absolutely.  Is it pretty awesome to reflect upon as you continue on the journey and are out of the thick of the medical crisis?  I can say it really is.  Is it helpful to hear when you're in the midst of the pain?  Nope.  Don't say it.  Ever.

3.  You're so strong.  No I'm not!  I have screamed and cried and cussed and questioned God with the best of them!  And sometimes when people would say that in the middle of our crisis, I felt like I had to apologize when I would break down.  You shouldn't have to feel bad about being vulnerable and real.  But statements like that made me feel like I always had to put on a brave, positive face.  Yes, our mantra is Choose Joy, and we try.  But do I always?  No.  There have been times when all I could say was this sucks.  (Sorry Mom.  I know you hate that word.  But I think it's accurate here.)  

4.  I don't think I could handle what you go through.  This one really gets me, and I have heard it a lot.   In fact, it's the one I hear the most often because people say it even now about all of the appointments and surgeries.  It's basically saying, well better you than me!  Does anyone really want to face these types of medical struggles?  I don't think so.  My typical answer when people say this is yes you could.  If it were your child, you would cry for a few days, then put your big girl panties on and figure out where to go from  here.  It wouldn't always be easy, but you would do it.  Because you love your child and will do whatever it takes.  And honestly, just because your child was born "normal," (I still hate that word!) doesn't mean that there's any kind of guarantee that he or she will be exempt from medical issues for life!  Pediatric cancer is the leading cause of death now in children!  Car accidents happen every day!  Heck, a bad fall from the monkey bars could result in a traumatic brain injury!  Not trying to scare you into putting your child in the proverbial bubble, but it really could be you crying next to that hospital bed.  And you could do what I do, and so much more, if you had to.

So what can you say???  We have all felt inadequate and even uncomfortable as we try to give support to a friend in need.  I think the card that meant the most to me was the one a friend wrote where she said she had started her card several different times and nothing sounded right.  She finally wrote that she really didn't know what to say, but she just wanted me to know she was praying for me.  That friend didn't have to come up with some eloquent saying to let me know she was there.  She said exactly what I needed to hear.

1.  Let them know you are praying for them, and DO IT!  OFTEN!  I could 100% feel the prayers of so many friends and family.  Don't try to say you understand.  Just pray.

2.  Be intentional with your offers of help.  Instead of saying, "let me know if I can do anything," just go ahead and give a day and time you're going to bring a meal over.  Or arrange to clean your friend's house--without judgement!  :)  Or invite the kids over for a play date.  I never quite got the hang of asking for help, but I was so appreciative to the ones who didn't wait to be asked.

3.  Send gas cards and care packages.  If your friend is traveling to a hospital, gas bills add up quickly!  Practical gifts like gas or restaurant cards are really nice and don't take up space in a tiny hospital room.  :)  Care packages are fabulous too.  Include lots of consumable gifts like on-the-go snacks, microwavable meals that can be heated at the hospital, hand sanitizer, quarters for the snack machine, a bottle of water, a pen (I ALWAYS needed a pen!), or maybe some treats for the person in the hospital--but find out what is allowed first--nothing like sending snacks only to find out the person is NPO!!  

4.  Buy hospital parking passes.  Most big hospitals require a fee for parking (don't get me started on my rant of capitalizing on sick people in their time of need...), but a lot of them sell parking coupons at a reduced rate.  For example, you can buy a book of parking stickers at Hopkins and it ends up being significantly cheaper than paying each time you go in--especially if you are staying overnight.  Purchase some of these parking passes for a friend who is going to be traveling back and forth often.  Make sure you find out about expiration dates and vehicle requirements, but this is such a nice gesture.  Parking, on top of gas, gets very expensive when you do it often.

If you have faced a medical crisis, what do you think?  Do you agree with my thoughts, or did you have a different experience?  Did something someone did for you during your time of need really touch you?  Please share!

Saturday, November 9, 2013

Late-Night Sick Blogging

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 complicated!), there is a tear somewhere in her thoracic duct and her body is leaking lymphatic fluid (which is also infected with some sort of bacteria) into her lungs.  Her doctors have drained off several liters of fluid in less than two weeks, and there's no sign of it stopping.  They did a procedure yesterday to try to find the tear, but they can't.  This will most likely mean a major, very complicated thoracic surgery.  Given Reagann's already delicate respiratory status, this is not good news.  Please, please pray for Reagann!!


Friday, November 8, 2013

Spa Day

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 shoulder.  Anna put her arm around Abby and said, "Best friends forever!"  I'm pretty sure the teachers' hearts melted a little bit.  I hope they always stay this close!


Thursday, November 7, 2013

Birthday Morning

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...