Life as a Leach

For those that are not friends with me on Facebook, our visit to CHOP yesterday included cultures of the wound and new twice-daily cleaning and debriding procedures.  Since we live in a rural area with limited access to home nursing resources, this lovely job will fall on me.  Every morning and evening, I have to remove the bandage, wash the wound with soap and water that stings, and then dig out any infected tissue using sterilized scissors, tweezers, gauze, and applicators.  This is a painful procedure that Abby naturally hates, and her screams and cries break my heart every time.  I feel awful for having to hurt her.  But by stripping her body of the infected tissue on the outside of the wound, she can heal from the inside out.  I have to cause immense pain in order to help my daughter to finally be rid of the infection that has caused her so many hospital stays and surgeries.  What a hard thing to put a six-year-old child through. But then ...

Our whole family has had crud of varying kinds this last week.  Now it's my turn, except that moms can't get sick! Chloe has been keeping me company, and Matt has been great about taking care of the kids!   I am feeling a lot better and am just waiting to be fever-free for 24 hours before I get close to the kids again.  So we prayed and sang like this tonight before bed!   I would LOVE to have a snow day tomorrow, but my chances seem to be slipping through my fingertips. :(

Today I spent three hours working at my other job.  No, not as an ESOL teacher, although I worked 3 1/2 hours at that job as well.  The job I'm referring to is being Abby's personal assistant.  :) This afternoon after I got home from my paying job, I had plans to vacuum, mop, and clean bathrooms.  I vacuumed 1/2 of a room before the phone rang.  From there, I spent three hours talking to the insurance company 4 different times, dealing with two different service providers on two different insurance appeals we have filed, giving updates to our Model Waiver case manager, and emailing/calling CHOP multiple times because Abby's surgery date was changed.  Needless to say, the cleaning did not get done. I haven't shared about the appeals we have made, but they have both been very stressful and frustrating.  One involves us having to pay a large sum of money for Abby's medical care, and the other has become a federal case of fraud against our account (not...

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, an...

I realized I didn't post on here our updated surgery date.  If you don't follow me on Facebook, Abby's date was moved up to September 8th.  We were really happy about this because her kyphosis is getting worse and the concern for spinal cord injury is real. I'm so thankful that Abby gets to start school on time, even if it's just for a week.  She needs that little bit of normalcy and it's a "first" that should be celebrated! Speaking of normalcy, Matt and I talked the other night about our constant need to cram in as much normalcy as possible while we can.  Crafts, trips to the zoo, pool time...so much fun, so little time.  In my urgency to give them so much normalcy, I'm reluctant to just hang out and rest at home.  The rain today forced us to have a day at home.  After church, we got some things done around the house, the kids played Disney Infinity together, they went over to our neighbor's house for a little while, I made dinner, and we...

Have you joined the millions of others who have flocked to the theaters to see Finding Dory ?  NO???  What are you waiting for???  GO!!!! We enjoyed this gem of a movie a few days ago and I am in love.  It wasn't the story line, although it was cute.  It wasn't the music (there really wasn't any) or cinematography.  It was the message.   Finding Dory  is all about celebrating differences and loving people for who they are.  Like I tell my kids all of the time, everyone has different strengths, and the movie focuses on Dory's.   I also really, really loved the way Dory's parents were portrayed.  They recognized that their daughter had some challenges (short term memory loss) and gave her skills and strategies to cope.  They didn't get angry with her; they weren't in denial; they didn't try to "fix" her.  They simply figured out ways to help her be independent.   But they also quietly worried about her, which...

Have you ever knelt next to your child as he or she gets sick, or cuddled your baby with a raging fever, and just wished you could take it all away?  As miserable as it is at the time, you are so grateful when it gets better and you forget about how bad it was. I feel this way all of the time, except that it is not going to get any better--at least any time soon. Watching my little girl cry from the intense back pain that she has recently been experiencing makes me wish it were me instead of her.  I know how bad it is when she actually asks for the pain medicine that she hates to take.  We aren't sure if she needs an expansion or if her kyphosis (hump) is getting worse, but it's definitely affecting her.  Hearing her sadness when she realizes she can't participate in her first dance recital because she'll be recovering from surgery brought tears to my eyes.  I didn't realize that she didn't know, but she sobbed when I had to break the news to her.  I ...

After the Shuffle, a reporter from The Baltimore Sun interviewed us about our experience with the House.  Caleb is featured in the article, and I think his words are wise beyond his years. You can read the whole article here: http://www.baltimoresun.com/news/maryland/bs-md-red-shoes-walk-20160410-story.html You see, RMH is the one place where everyone does really look at us the same way.  No one judges, no one gawks, no one teases.  We can all just be.   That's the beauty of The Ronald McDonald House.  It's so much more than a place to sleep.  It's a community of people who get you in a way that no one else can.  They love you through the hard times and celebrate the successes. It really is The House That Love Built.

Being a special needs parent is vastly different from being the child with special needs, or from being the big brother.   I am hoping to start a new series called In Their Words  that allows Caleb and Abby to share their own perspectives.  Abby is getting old enough now to share some of her frustrations and fears about her surgeries, and I think it is important for her to feel like she has a voice.  Caleb is often so reflective that I know he will have lots to share. Who knows, maybe In Their Words will make it to The Mighty! Today, Caleb is going to share what it is like being the big brother to a child with special needs.  This is written in his own words, with me as the typist.  :) Abby's big health concerns are her spine, her breathing, her hearing, and her seeing.  She has to have a lot of surgeries on her back and ribs.  She has special needs, which means you need special stuff to help you with sickness or special things that othe...

This sweet girl has been home with us for 5 years!  I will never forget the day we brought her home--so many happy tears! Thank you, Lord, for 5 years of having laughter and joy fill our home!

To the siblings who sometimes feel invisible...I see you. To the ones who have celebrated Christmas and Thanksgiving in the hospital instead of around your dining room table...I see you. To the kids who get shuffled from one family member to the next during hospitalizations...I see you. To the children who trade video games at sleepovers for blown up medical gloves during hospital visits...I see you. To the students whose parents have missed games, performances, concerts, and school presentations...I see you. To the kids who turn speech and physical therapy into fun games…I see you. To those who have blown out birthday candles in hospital playrooms...I see you. To the kids who share their houses with nurses and therapists...I see you. To the students who have been picked up unexpectedly from school, only to find out your sibling has been taken to the hospital again…I see you. To the children who had to grow up too fast and have way too...

There have been so many blessings that have come out of our journey the last five years.  At the top of the list is most certainly the Ronald McDonald House of Baltimore.  The staff has created such a warm community there, and it really is our home away from home.  We love it and shout that from the rooftops! We were so honored that they invited us to their Hamburgala fundraiser.  The kids presented flowers to the chair of the committee, and we all held signs to direct people to dinner.  It was such a fun evening and a great way to raise money for the new house! Abby loved her new dress and enjoyed twirling in it! Caleb got so many compliments on how sharp he looked. Abby decided to practice her princess wave for Disney World while we waited for the shuttle to take us to the Gala at the Four Seasons .  :) Our menu for the night. Everything served included McDonalds ingredients!  (but much fancier!)...

Our newest additions!  #thisisserious #wedontmessaround #noflushotnovisit

Did you know that today is Governor Hogan's last day of chemo?!  Woo hoo! I have been SO very impressed with Hogan's transparency and willingness to turn his difficult circumstances into a way to raise awareness for cancer.  During each inpatient chemo treatment, Hogan has often been found visiting other cancer patients and sharing their stories. Of course, the Ronald McDonald House was one of the organizations he was able to visit and promote during his cancer battle.  He has supported and loved the families these past few months, so RMH wanted to show Governor Hogan that our family loves and supports him too! So the RMH staff decided to surprise him with a big pep rally---Hogan thought he was just comign to serve dinner!  Instead, 50+ RMH residents, Ravens cheerleaders, the Oriole Bird, and some of us "lifers" greeted him with noise makers, cheers, and smiles. Here's an article about the surprise!  The staff pulled it off and Hogan was totally surpri...

62 Days and counting until Disney World!!  Abby has a super cute Elsa countdown chain that our friend and wish granter made for her.  It starts at 60 days and Abby is uber excited to start the "official" countdown! I ordered some adorable Make a Wish shirts (we get one from the organization, but lots of people suggest having multiple) and they came yesterday!  Naturally, we had to wear them today...all of us...Matt was thrilled about that!  :)  My intent was to get a family picture this evening, but Caleb had art today...enough said.  Ugh.  Here are the kids this morning before orange paint splattered all over the front of the boy child... So, I wore my wish shirt to run a bunch of errands...I was in several stores, several medical buildings, and a school.  I realized something as I wore it. I was someone to be pitied. I cannot even tell you how many sympathetic looks I got as people realized what my shirt meant.   Now, I was not t...

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 ba...

We moved to another floor this afternoon...the surgery floor...NOT pulmonary!!! (This is exciting because it means she doesn't have respiratory issues!!).  Abby is doing fantastic!! She sat on the edge of the bed 3x and stood next to the bed 3x as well!  I think tomorrow we will definitely get her walking.  She is such a rock star! She did get sick this evening while eating dinner, so we slowed down her feeding rate.  I thought we had it slow enough already, but apparently not.  We had a nice evening of playing with play dough and doing princess sticker scenes (sneaky OT...lots of reaching, punching, pulling, etc with both hands!) and she watched a movie.  It was a nice awake time, so I think she will sleep better overnight.   God has blessed us so much.  We have an awesome little boy who is often the one "left at home."  He loves his sister so much and is her fierce protector (look out, bullies!).  This isn't easy on him either.  I...

Our friend Karsyn has an entire carnival named for her, to celebrate Down's Syndrome!  Abby and Karsyn are friends from the Young Athletes program, and we love to support the carnival.  It's huge and I just found out today from Karsyn's dad that they had over 1,000 people come!! Caleb's favorite game was this one, where you shot nerf guns to knock down little people. Abby wasn't too interested in playing games, but she loved the animals! They had a decorate-your-own-cupcake stand, which is always sure to be a fun, messy activity! Caleb also liked this catapulting game. Yes, that's my kid in long sleeves and jeans in 80 degree weather. Spidey Selfie! No characters for Abs, but she'll take a selfie with Momma! It is always such a fun event to raise awareness and funds for Down's Syndrome.  Karsyn's family is exceptional, and I'm so proud to know them!

On May 13, 2008, the Santorum family welcomed their seventh child into the world. Isabella Maria was born with a rare genetic condition called Trisomy 18, or Edward’s Syndrome. Only 10 percent of children with Trisomy 18 are born alive, and 90 percent of those children do not make it to their first birthday. Faced with these bleak statistics, doctors told the family to prepare for Bella’s death. Instead, they chose to celebrate her life. Over the next five miraculous years, the Santorum family adjusted to life with a special needs girl—and watched her transform the lives of everyone around her. In many days of sickness and joy, she became an inspiration to her community and, ultimately, to the nation.  Bella’s Gift  details the peaks and valleys, the joys and sufferings, and the incredible value of life with a special needs child. In a world that often measures worth according to usefulness, Bella’s story is a reminder that our real value lies in our capacity to love. Ra...

“Blessed are the pure in heart, for they will see God.” Matthew 5:8 In this book, the Bruins join the Bear family for a cookout and bring their cousin Tommy along. It isn't long before the cubs start up a game of baseball and Sister soon notices that Tommy doesn't play like the rest of the group. When Sister asks about Tommy, Mama takes the opportunity to talk to Sister about how God makes each of us unique in our own way and reminds her that we all have special gifts and talents to share with the folks around us. I'm a sap.  I'll be the first to admit that!  I cry at sweet commercials, tear up when my kids say something cute, and regularly cry on Sunday mornings during worship time.  So no one should be surprised that I cried while reading this book to my four year old special needs child! There are so many things I love about this book:  the simple message it conveys, the way the kids just play with and accept Tommy the way he is, the wise words his au...