Wednesday, September 30, 2015

My Personal Weather Forecaster

Have you ever heard the old wives' tale that some people can tell the weather based on their aching bones?  Well, it is SO true.  The VEPTR moms have had many discussions on it!

Enter this week's weather case you've been hiding under a rock, Hurricane Joaquin is heading our way.  RUN!!!!  Get your toilet paper and milk!!!!!!

We have already gotten quite a bit of rain, and are forecasted to get much more even BEFORE Joaquin hits.

What I have learned in the last 5 months is that heavy, sustained rain = a bad back day for Abby.  So these next few days are going to be fun!

She was totally fine this morning and it wasn't raining anyway, so I didn't think anything of it.  Then I got a call from the nurse saying she was in a lot of pain but refusing to take her medicine.  Ugh.  C'mon, Abby!  They called Caleb down to try.  Bless his heart, he tried, but she wasn't buying it.  My dear friend B finally convinced her to down it.  I'm pretty sure she needs to be added as a supplementary service provider in her IEP as "personal conjoler."  BUT, I did find out that B was justly rewarded with a shy little "I love you" sign for the first time later in the day.  :)

Turns out, I forgot to mention that she absolutely refuses to drink medicine out of a medicine cup.  Oops.  A large bag of 10 ml syringes is in her backpack as we speak.

Live and learn.  Abby keeps us on our toes!  I expect that she will probably need pain meds regularly over the next few days until Joaquin decides to leave our little town...if you need updates on the weather, just ask Abby!

Saturday, September 26, 2015

The Good Things

I'm not gonna lie.  Life has been challenging recently.  The herniated and torn discs in my back are severely limiting what I can do, and it is frustrating.  I don't live life on the couch.  It's just not me.  And not sleeping is kind of an issue too. 

There's other tough stuff going on right now too, which is taxing on our family.  We would certainly appreciate your prayers.


So let's name a few.  Some are minor, some are HUGE!  In no particular order:

1.  A sweet friend and coworker of mine is finishing her LAST radiation treatment on Monday!  What a celebration that is!  I am so thrilled for her.  It's been a tough 9 months, and I know she is ready to move on!

2.  I entered us in a drawing through our electric company for a fancy new thermostat.  We were chosen and got this $250 wireless thermostat that is app-controlled for free!  It learns your habits and is supposed to lower your electric bill.

3.  Caleb's hunger for reading has just grown so much!  He currently is enjoying Peter and the Star Catchers series and the Percy Jackson series.  If you can't find Caleb, his nose is probably in a book.  :)

4.  Our flight itinerary came today for our Make a Wish trip!!!!  We are so excited!  This really couldn't have come at a better time.  It is such a bright light in a stressful time!

5.  These two have missed each other so much!  They enjoyed playing together at Sara's soccer game today.

6.  Caleb's artwork made the display case for the first time ever, and he was SO proud!  He told me abstract art is his thing.  :)

7.  Mom gave Abby two scarecrows, who have now become her children.  So far she has taught them how to look both ways before crossing the street, put them on the treadmill for exercise, sung songs with them, and put them through an obstacle course.  I am not sure how long they are going to last, but she loves them!

8.  Abby is absolutely loving school!  She excitedly fills us in on every detail each night.  Although she is tired in the evenings, the transition has been really good.  

9.  My dad's birthday is on Monday, and we celebrated tonight with a delicious dinner at my sister's house:  her spaghetti casserole was a real crowd pleaser!

10. Matt and I are going on a date tomorrow for the first time really don't remember.  I think it was for his birthday dinner in July.  That's kind of sad.  With everything that has been going on, we are so very thankful that my parents agreed to take the kids for the afternoon.  We need a little time.

Saturday, September 19, 2015

Tiny Dancer

My tiny dancer had her first dance class on Thursday.  No surprise that she absolutely LOVED it!  

Matt brought her to me afterwards to Caleb's open house so that he could go to a meeting.  In the hallway, I asked her what she learned.  She promptly stopped traffic to line her feet up perfectly to do a pleeeeee--aaaay complete with sound effects. She got a lot of awws for that one. 

Matt filled her teacher in on her limitations, and the assistant knows Abby well--she's the daughter of our wonderful therapeutic recreationalist!  But Abby let me know on the way home that the class did forward rolls on the mat, but she told her teacher that wasn't safe for her. (The teacher wasn't going to have her do them anyway)  So she did bunny hops instead!  Way to self-advocate, Abs!!  Love it!

And she can't wait to go back next week!  So many firsts for my little girl!

A Successful First Week!

Thanks to a bunch of wonderful people, Abby's first week of school went perfectly!  She absolutely loves it and asked today if she was going to school. She was disappointed to hear that we were only in the car to go to Caleb's fencing practice. :)

Our awesome new PT was there almost every second of the first three days (T, I feel like I am almost cheating on you by calling MB awesome!  But you know how much we adore you!) and examined everything closely to see how she could help Abby to be more independent.  One of the custodians heard that Abby couldn't do a particular style of paper towel dispenser, so she switched it out for one she could do! I was so surprised and grateful!  There's a stool there so that she can reach things, and we have trained the bus drivers and assistants (she will ride a different bus coming and going) in all of the safety precautions.  

 Abby's teachers, the wonderful Mrs. C and Mrs. Y, have put a lot of procedures in place to help keep Abby safe.  They even incorporated the word fragile into a vocabulary lesson so that it could be discussed each day last week and then used to describe Abby on her first day so that the class would understand the need to be gentle.  The VP and dean have popped in to make sure everything is running smoothly, and it is!  

 The audiologist has checked in each day to make sure Abby is accessing the information in the classroom.  Her FM system has been ordered and should be here this week.  That is a special microphone the teacher wears that transmits her voice directly into Abby's hearing aid so that she won't miss anything.  The nurse has been right on top of the crazy Code Orange days we have been having, so Abby hasn't made it out to the playground yet....hopefully next week!   

I sent in a little thank you with a pack of Extra Gum thanking the people above for all of the EXTRA work they put into helping Abby have an awesome first week of school.  It's little, but I definitely wanted them to know that I realize this is not the norm and we appreciate it!!

I met with the EMTs at the local fire department to fill them in on her school status (she is already registered as medically fragile, but only at our house--and I needed to give them updates anyway).  If there are any airway emergencies, a helicopter will automatically be dispatched from JHH at the same time as the ambulance.  I like that...a lot.  All of this will pop up on her file if someone calls 911 on her.  They also have multiple copies of her medical history.  

So yeah....a lot of prepping and work for a lot of people, all to keep my sweet girl safe!  But the grin on her face at the end of the day makes it all worth it.  She absolutely loves every minute of the day!  The girl loves life--what can I say?!

Thursday, September 17, 2015

Chloe Lovin'

This dog is SO loved by our family!  And I think the feeling is mutual...

Wednesday, September 16, 2015

Tears of Joy

Today was Abby's first day of Pre-K at our local elementary school!  She did great!  We walked to the door just as the bus was letting off.  Abby said goodbye, joined the line, and walked right in!

I did stay in the building (since the nurse was going to be out), making copies for the 3rd and 2nd grade teachers and pulling a few groups. She didn't know I was there, and I kept it that way!  She did totally fine, and the biggest "issues" were that she wouldn't sit in the chair they provided her per her IEP (she can sit where she wants to sit!  It just needs to be available) and she didn't want to sing.  I do believe the child was showing her sassiness right out of the gate.  :)

A lot of people asked me if I cried.  Yes, I did.  But they were not tears of sadness that she is growing up.  They were tears of pure joy and thankfulness that we have made it to this point.

You see,

When you cried because you couldn't get your colicky baby to stop crying, I was crying watching my infant daughter struggle just to breathe.

When you were frustrated trying to set up a pack-and-play, I was frustrated trying to complete a competency exam on home ventilator care.

When you cheered as you watched your baby take her first steps, I cried in disbelief because she was never supposed to walk.

When you fussed at your child for talking too much, I spent hours learning sign language, programming communication apps on the iPad, and repeating words over and over again in an attempt to get her to communicate in any way.

When you signed your kids up for day camps and summer activities, I cuddled next to my daughter and stroked her hair as she writhed in pain from yet another surgery.

So, when you cried over how quickly time flew as your child went to school for the first time, I cried happy, thankful tears in the hallway with a dear friend and coworker as we marveled at the miracles God has done in Abby's life.

I know full-well about the time we have had.  It has been filled with tears, love, hope, and a whole lot of prayers.  We have spent over 150 nights together in the hospital.  She has had over 50 prescriptions for pain, breathing, and eating.  She has had over 100 feeding therapy appointments, over 200 speech therapy sessions, close to 150 physical therapy sessions, and an average of one medical appointment a week since she was born.  That is roughly 342 appointments in 4.5 years...and that is conservative.

Yes, I know how we have spent our time getting to this point.

Would I do it all again?

In a heartbeat.

Because though her young life has been spent enduring so much more than anyone should ever have to in a lifetime, much less just 4.5 years, it has also been filled with love.

So. Much. Love.

I am proud to call Abby my daughter, and I am SO very thankful to everyone who has gotten us to this point.

To my family, who has stood by us, cried with us, prayed for us, and cheered Abby on from the beginning

To our sweet NICU nurses and the many surgical nurses we have met who have cared so lovingly for my girl in her need

To our wonderful "A Team," Tracey and Carrie, who taught us SO much and gave us so many tools to help Abby develop

To Abby's first preschool/MMO teachers, who gave her a chance when we weren't sure how it would go...and helped her to flourish!!

To Abby's feeding team, who pushed her (and us!) to get her to where she is with her nutrition

To our amazing pediatrician, who has done SO much for our family and who has really watched out for Abby

To all of our awesome surgeons and specialists who have taken good care of my girl on the operating table and in the exam room

To Dr. C., who has given us a reason to have a hope for the future

To every other therapist and medical person we have encountered in this journey

To our RMH family, who has shown us so much love and support and who has given us our Baltimore home

To all of the friends who have supported and loved us along the way

Most importantly, to my God, who has created Abby for a purpose.  We know she is fearfully and wonderfully made in Your image and are loving watching her story unfold in front of us.

To all of you...thank you for helping us get this far.

Today was a beautiful day.  :)

Friday, September 11, 2015

Pre-K, here she comes!

Abby got into prek at SLES, so now the fun begins!  Before she can start, I have to make sure she is completely safe and everyone knows what she can and can't do.  The nurse and I had a great meeting yesterday to create her medical plan, which she will share with the teachers. Nurse K has been really great and seems like she will be very protective of Abby.  She even decided to make her a lanyard with a little "please don't pick me up" sign for her to wear until everyone gets to know her.  

I have a meeting later today with her teacher, and then an IEP revision meeting on Monday.  Somehow, our awesome team pulled off a meeting that fast, and I'm so grateful!  We need to change her IEP to be school-specific, rather than just as if she only receives speech services.  We also need to put in that she needs a 5 point harness in the bus, because she can't ride until it does.  

Abby's start date won't actually be until Thursday, because the nurse will be out and she doesn't want a sub here for Abby's first days.  I totally agree and appreciated her thinking of that!  Abby, of course, is sad that she has to wait SO long! :). 

My high-maintanence girl requires a lot of work on everyone's end to get her ready for school, but she's worth it!

Thursday, September 10, 2015

These Kids

Could they possibly be any cuter?!?!


That word describes me right now!  I'm having a lot of back trouble--a suspected herniated disc that is just getting worse, to the point I really can't stand upright--which is also causing numbness, tingling, and spasm in my leg.  

Insert Restless Leg Syndrome.  

It sounds so leg jerks throughout the night.  No big deal!

Oh, let me tell you.  I don't sleep.  My average last week was 4 1/2 hours.  I haven't slept at all tonight, and it's past 4 am!  This is the worst night I have had, with lots of pain in addition to the other stuff. 

 I decided to take a second dose of "Restful Legs," a homeopathic medicine that is supposed to all them.  

Bad idea.  Even though it had been more than 4 hours between doses, my body had some sort of a reaction and I couldn't breathe.  I was so scared and eventually woke Matt up.  After a Benadryl, several inhalers, and a nebulizer treatment, I finally felt better.  Thank goodness we have a PICU in our house so that I didn't have to go to the ER!  Yeah, I won't be taking those pills again!!!!  They didn't work anyway!  👎🏻

So now it's going on 4:30 with no sleep yet for me.  And this is pretty much how it's been for the last month or more.  I'm not sure that I will be able to function much longer.  All of the medical sites say I need to reduce my stress...ha!  They don't know my life.  

If you see me tomorrow, don't be offended if Zombie-Julie doesn't wave back.  I will be concentrating all of my energies on staying awake.  😴

Wednesday, September 9, 2015

Monday, September 7, 2015


I don't say nearly enough how much I love this man.  He is so sweet to me, even when I'm stressed and nag him all of the time!  He's a great guy.  :)

Friday, September 4, 2015

Wednesday, September 2, 2015