Saturday, October 22, 2016

A Letter to My Daughter

My Sweet Abby Joy,

This has been quite a year for you!  You finished pre-k, started kindergarten, and grew up so much!  I can't believe you are 6.  But then again, you're as sassy as a teenager!  As we've said, you are 6 going on 16!  You've certainly got the eye roll down.

I love your personality--every single sassy ounce of it!  You say some of the funniest things!  But I love your character even more.  You are such a helpful girl.  You love to help me make dinner, clean the house, and put laundry away!  Just the other day, Caleb found you cleaning the bathroom with Lysol Wipes just to make your family happy!  When you do get yourself in trouble, you are so remorseful and sad that you made us upset.  You have such a sweet heart, which is evident in the way you love babies, animals, and your family!

It has been another year of lots of medical stuff.  You've had 4 surgeries in the last year.  One major surgery didn't work and had to be corrected with another major surgery.  Then, you had a severe infection that landed you back in the hospital just a few weeks ago.  But you know what?  Through it all, you have shown just how brave and resilient you are.  You are such a tough girl and you look for the good in everything.  Even though you're in the hospital, you love music therapy, crafts, and the play room.  You'll find the fun no matter what!

This past year, you have developed a love for food!  We have been thrilled with how much you are eating and how much you are actually enjoying it!  Some other things you love are My Little Pony, Calico Critters, Legos, crafts, and animals.  At this point, you are saying you want to be a veterinarian.  We'll see if that pans out!

We love you Abby, and we are so thankful for your life.  You are created for a purpose, and that purpose is becoming more and more evident with each passing year.  You are a world changer!  Happy 6th birthday, sweet girl!


Thursday, October 20, 2016

I Have Sweet Kids!

I really do!

Yesterday, after I finished making Abby's seashell cupcakes for her birthday party, Caleb said, "Mom, you do the best parties.  I love how hard you work to make them nice!"  I told him that meant a lot that he appreciated that!

Two days ago, Abby was taking a long time in the bathroom and Caleb went to check on her.  She was cleaning the bathroom with Lysol Wipes!  When Caleb asked her why she was doing that, she said, "To make my family happy!"

I'm so thankful that my kids are striving for Godly character.  They do very well in school, but that will only take you so far in life.  Being a person of integrity and someone people can trust is so important!  I pray that they continue to show Godly character as they grow up!

Wednesday, October 19, 2016


Abby's hospitalization was fast and furious.  I couldn't blog during the hospitalization because my app on my phone doesn't like the new IOS update, so if you missed the Facebook updates I'll try to catch you up.

Her incision started getting pretty red, so I took her to our pediatrician last Tuesday.  He put her on an antibiotic, but was pretty sure it was a superficial infection.  Neither of us were worried.  After PT that evening, Abby got a fever that just kept climbing even after Tylenol.  I called CHOP and the resident called our surgeon.  He confirmed that we should come in to be admitted so that he could go in and clean out the wound.  So we threw some things in a bag, dropped Caleb off at my parents' house, and left for CHOP at 10 p.m.  We got to the ER around 1 a.m., and by that point Abby could no longer walk because her legs were constantly asleep and she was in so much pain.  Her fever got up to 103.4 with another dose of Tylenol.  They finally got it under control and admitted her to the orthopedic floor at 6 a.m.  At 6:30 a.m., the nurse came in to ask us to give Abby a bath so she would be ready for surgery.  They took her at 7 a.m. down to the pre-op area, and she was in surgery at 8 a.m.  She was out by 10:30 a.m. and the rest of the day was talking to doctors, getting IV antibiotics, and trying to keep her calm and happy.

Infectious disease ran the cultures for MRSA, regular staph, and other infections.  We got the results on Friday that it was regular staph (thank goodness!!), and then they were able to switch her to an oral antibiotic.  They believe that this infection started during or immediately after surgery and has been growing for quite some time.  It was down to the rods and most likely started there and worked its way up to the surface.  We were discharged Saturday afternoon with a hefty oral antibiotic for the next 3 months.

Abby's immune system is shot right now and she is very susceptible to germs.  We want her to be able to go to school, so her awesome one-on-one is being careful about having Abby wash her hands often.  Her birthday is on Saturday and we were going to have her party at our house, but we moved it to avoid having any extra germs here.  We are asking anyone within close proximity to Abby to have had the flu shot, and she definitely can't be around people who are or have recently been sick.  Only those who have been vaccinated for the flu will be able to come to our house, so that we can keep this our "safe zone."  Abby has, of course, been vaccinated, but she relies on herd immunity to protect her because she is still so susceptible.

This was scary...really scary.  The infection escalated quickly and could have been much, much worse if everyone hadn't moved so quickly.  I have to say that CHOP is amazing.  So is our pediatrician, who called during the hospitalization to check on her and talk to me about her bloodwork and later faxed over the culture results he got so that they could compare.  We are so thankful for everyone who had a hand in this!  God gave everyone the clarity to act quickly, and he was certainly watching out for Abby.  She's back in school and no worse for the wear, but I got a few more gray hairs from this last hospitalization!  Poor Caleb missed out on having me chaperone his field trip, and Abby missed her trip to the pumpkin patch as well.  Both of them were disappointed, as were we.

Thank you for your prayers and love.  I'm hoping that we will be home and settled for a while (until her next surgery in December, at least!)  Never a dull moment around here...

Sunday, October 9, 2016

Living in the Middle

We live in the middle.

Being the parents of a medically fragile child, we have certainly had our share of crisis moments. Abby was in the hospital for the first three months of her life and we faced each day not knowing if it would be her last.  In the two years that she lived ventilator-dependent, we had the constant fear of her catching a potentially deadly cold.  Several "harmless colds" landed her in the PICU, and a case of RSV left her fighting for her life.  Since Abby has been decannulated, she has had numerous major surgeries to reconstruct her chest wall, spine, and jaw.  Just shy of six years old, Abby recently had her 20th surgery.  Her 21st is already scheduled.

But we also have many moments of normalcy.  Our family loves to visit museums, aquariums, zoos, and other cultural events.  We enjoy going to our local farmer's market on Friday nights and chatting with friends we see there.  We love singing along to musicals in the car, and we can certainly down our share of popcorn at the movie theater.  We enjoy volunteering at the Ronald McDonald House as a family.  Our kids play with Legos together, hit each other with pool noodle light sabers, take turns smothering our poor dog, and get fussed at for jumping on the couch.

There are times of crisis, and there are times of normalcy.  But most of the time, we live somewhere in the middle.  We bounce back and forth between school and doctors' appointments, between American Heritage Girls and physical therapy, between fencing lessons and speech therapy, between craft time and feeding therapy, between vacations and hospital stays...between our regular life and our medical life.

So where do we fit in? We aren't quite severe enough anymore to truly hang with the medically fragile families who used to get us.  But, then again, we aren't really normal enough to sit around with families with kids our age and simply chat about soccer and homework.

I like to think we have the best of both worlds.  We have been blessed with many special needs families we are privileged to call friends.  They have encouraged us, cried with us, and empathized in a way that others just can't.  But we also have so many typical families that have come along side of our family and loved us through it all.  They have made meals, sent cards and gifts, given hugs, and prayed with us.  They have held us up during the tough times and celebrated with us during the good times.  Both groups of people have become so important to us during this journey.

So yes, we live in the middle, sometimes slipping into crisis mode, and other times dipping our toes into the normalcy.  But with friends like we have, it's not such a bad place to be!

Thursday, October 6, 2016

This is something I have been thinking about recently.  My girl is so tough.  She has to work SO hard at things most people take for granted:  walking on the grass, standing on her own when I change her clothes, making it through a day of school, and even breathing easily when her ribs hurt or she is winded.  She has been through more than most of us will go through in our entire lives.

Yet, she does it all with an eye roll and a sassy smile on her face.  I do love my tough girl.

Friday, September 30, 2016

So long, brace!

Well, it appears that the brace was short-lived.  Abby's incision wasn't healing well and was started looking pretty nasty.  The brace runs against the area of her kyphosis and is keeping it from healing.  I sent pictures to our surgeon on Thursday and he said to take the brace off.  After some emailing back and forth to discuss how long, he said that it needs to stay off until her incision is completely healed--and at that point, the brace won't do any good. more brace.

Abby is thrilled, because she pretty much hated it.  Matt and I are conflicted.  While it's much easier on us not to have our daily fight to get the brace on Abby, she was much safer in it and her posture would have improved as well.  

Her wardrobe suddenly improved tremendously, since button-Down's and leggings were about all she could wear with the brace. 

In other news, does anyone need some plaid shirts?!

Monday, September 26, 2016

Hey, Guess What?!

We are going home tomorrow!!!  Things are done a little differently in rehab, so this date is pretty scheduled and definite.  We have known for a few days that it was the goal, but Abby had to prove she was ready.  She got all of her sign-offs today and her therapists have communicated with her school and home therapy center, so....WE ARE READY!!  Yippee!!!!

We are thrilled to be able to head home and close this chapter of the novel entitled Rehab. :). But I will say--if ya gotta go to rehab, KKI is most certainly the place to go!!  We have had an awesome experience and I have been very impressed.  If you know me, you know I don't hand out undue praise!  This facility is truly amazing!

Thank you for all of the prayers, well-wishes, cards, texts, gifts, and meals for the boys.  We love you all!