Life as a Leach

I often think back on my life and realize how God has prepared me for so long to be a special needs mom.  During last night's insomnia, I was thinking about what I would say to a younger me. 17 year old me, it's not by accident that you are working with that student with special needs and a trach each day as a guidance office assistant.  God is exposing you to trach life and allowing you to see how much more there is to a person than his or her special needs.  You are able to see that having a trach is just another way to breathe, and it's not as big of a deal as it seems.  You will draw upon that often in the first few years of Abby's life. Young, married, pregnant with your first child me, you sat on your old couch one night in your tiny little house and told Matt that you felt like God had called you to be a parent of a child with special needs.  You didn't know what that meant at the time and wouldn't for nearly four more years.  Matt will remind yo...

I started this 3 years ago or more, when one of Abby’s specialists started asking us, “When’s the next big thing?”  He meant surgery, of course, and I hated how the “big things” in our lives were Abby’s surgeries.   That night, I used the chalk board on our coffee table (really a repurposed toy chest) to write The Next Big Thing.  Then I listed all of the fun things we were looking forward to and their dates.  This practice has stuck with us, and the kids love it!  They get excited to see their birthday on there, or that a special event they are involved in made the board.  It keeps our focus on all of the fun things we have going on instead of drifting toward the negatives.   I updated the board today.  As you can see, we have lots to look forward to in the next 2 months!

My Facebook memories showed me a video of Abby from 5 years ago today.  It's a sweet little clip of her nearly 3 year old self yelling, "No more tubie!!!" and showing me the band-aid that covers where her gtube was.  I remember that day so well.  We went to a feeding clinic appointment hoping that we would get the okay to pull the tube, since she hadn't used it in over three months, but figuring we would need to come back for a separate appointment to do it.  I was ecstatic when the GI told us he could take it out right then!  This was momentous because it was the first day in Abby's little life that she was officially free of all medical devices.  I cried many happy tears that day. When that video was taken, we didn't know that she would be getting that tube surgically put back in just a little over a year later, thanks to a major jaw surgery that would make her completely tube dependent for many months.  We had no idea how far she would regress i...

Today, my girl walked back into her school with her brother, hand-in-hand.  After being diagnosed with sepsis in May that attacked her respiratory system and forced her surgeon to remove the hardware on the right side of her chest wall, causing it to collapse, Abby's lungs began to fail.  In October, she was officially diagnosed with lung failure and we were told that since she was no longer eligible for a trach due to fusion in her c-spine, there was really nothing else they could do.  We put her in a proverbial bubble and prayed that she would stay healthy.  We celebrated her birthday and Christmas, silently acknowledging that it could be her last. Once again, God performed a miracle in Abby's life.  Her lungs began to improve and she became less reliant on the ventilator to help her breathe.  We started exploring the idea of her going back to school in the spring.  Abby continued to become more active and was able to play and enjoy time out...

Those of you who are friends with me on Facebook most likely already saw Abby's excited video, but I wanted to share here as well.  Abby will officially be going back to school on April 23rd!! This start date has been a long time coming with many meetings and we have jumped through about 37 revolving hoops, but we did it!  Our poor pediatrician has been so patient with the paperwork that we kept bringing to him (the school system just kept requiring MORE documentation!) that I got him a gift card for Panera.  He really went above and beyond with all of the paperwork. Abby is absolutely ecstatic to go back to school.  She seriously cries every night because she misses school and all that comes with it.  Caleb and I secretly made her a chain link countdown while she had her piano lesson yesterday so that there was a visual reminder of how many days left.  He was so sweet and painstakingly decorated each link with her favorite stickers.  It was really...

I learned long ago that PT is much more effective when it is fun and infused into every day activities.  To really improve gross motor skills, you need to be doing frequent movement--not just "going to PT."   I often say we have a therapy lifestyle, where we just incorporate therapy into everything we do.  That means we set up obstacle courses, have gladiator battles standing on stability squares, ice skate around the kitchen, see who can stand on one foot the longest, swing on the disc swing, etc.  Most of the time, Abby doesn't even realize she is doing therapy.  If you have a therapy mindset, you really can get a lot in just by playing! Last weekend, Abby's cousins were over and they were putting on a show for me, as they often do!  Today's performance was The Lion King , and they were singing, "Can You Feel the Love Tonight?"  There's a rather long musical interlude, so I announced that they should all pretend they are differe...

Our CHOP appointments last week were productive.  Her plastic surgeon was thrilled with the progress of her wound.  It should be closed by the end of the month!  We will see him in mid-October and if everything goes well, Abby will be cleared to proceed with the VEPTR reinsertion!! We had some fun at the aquarium after her appointment.  Abby really loved being out and it was the perfect scenario--the place was empty!! She had her MRI the next day and recovered well from that.  We came home Thursday night to a very happy boy and dog! This weekend has been kind of rough, sadly.  Abby's respiratory rates have been very high and her saturation levels have been low...we want them the other way around!  She's been on her bipap a lot this weekend and we have had to stay inside.  Even then, her respiratory rates have been in the 70s.  She has been SO out of breath and has been really frustrated with herself. She is literally gasping for breath while ...

Abby loves to water the flowers with her watering can! We visited the puppies one last time before they go to their new homes.  She is going to miss these dogs!  They have been a bright spot in her summer. Abs hasn't taken a "real" bath since December because of her open wound.  Just think about that for a second....sponge baths and hair washing that takes 2 people for 9 months. Lying down on a bath bench to wash your hair to avoid getting the wound wet for 9 months.  (Well, actually, she had 4 months in the halo when she couldn't bathe or wash her hair at all!!!) Crazy.  This girl LOVES her bath and has so missed playing.  She asked if we could put a little water in the tub tonight so she could walk around in it.  She had the BEST time stomping, sitting on her bath bench kicking her feet, and playing.  💜 Tomorrow morning we head to CHOP for a few days.  Abby has an appointment tomorrow with plastics.  We know he is going to be excited ...

What an awesome day!  The weather was beautiful with low temps and humidity, which meant Abby could be outside!  We took full advantage of this today!  Her cousins were staying here, so they played in the water table, laid out on the hammock, and played with the fairy houses on the deck.   Later, some friends came to visit and we sat on the deck and ate had popsicles and played with light sabers.  There was a lot more hammock time too!  They all had a great time running around. In the late afternoon, we took a rare trip out of the house to our local beach!!  There were only a few families as far as we could see, the weather was gorgeous, and the kids had a great time playing in the sand, collecting shells, and getting their feet wet.  (Getting truly wet is a big no-no for Abby for several reasons, so we just told everyone not to go in any farther than mid-calf.) After a while, sweet Abs was so tired that she laid on the beach blanket!  She ac...

This week is going to be a busy one around here.  Abby has 2 appointments in Baltimore on Wednesday.  She needs her hearing aid mold redone (it squeals constantly!) and she has a pulmonology appointment.  Not too much has changed with her breathing--she is usually still requiring daytime bipap, and sometimes needs it twice during the day.  There doesn't seem to be a rhyme or reason to it, except that it is always in the afternoon.  We have kept the temperature in our house lower in hopes that heat will not be a factor, but the weather has really been pretty mild anyway.  I don't think our pulmonologist will change much at this appointment, since there really haven't been improvements.  I have a feeling we will just "stay the course" with daytime bipap as needed, respiratory treatments and airway clearance 4x a day, and inhaled steroids 2x a day. On Friday, we have appointments at CHOP with the infectious disease team and our orthopedic team.  Th...

Abby got her new furniture tonight.  This was her while she was waiting for the guys to set it all up.     Chloe approves too!!   One of Abby's favorite things is that she can open all of the drawers by herself--with just one hand.  Her antique furniture was very difficult for us to open, let alone her!       She is one happy little girl!  I have some work to do tomorrow with organizing everything and we are still working on figuring out the best place for the feeding pole (it's making the dresser have to be off-center).  I'm going to get a new book shelf, get a twin dust ruffle, move the mirror, and put a new white wall shelf in.  There's work to do, but it is definitely an exciting day!

  Abby got this sweet snow globe ornament today from Make a Wish!  It's flat on the back with a magnet on the back, so we can use it all year.  Such a fun surprise! We enjoyed going to my family Christmas party today.  Since we weren't sure we would be able to be there, we were especially glad to go!  The kids had fun playing with their cousins and they all seemed to enjoy their gifts.  The girls were all given JOY shirts by my aunt in support of Abby, which were really cute! We are so grateful for all of the love and support my family gives us!  They are the best! Tonight ended a bit teary when Caleb broke down while he was praying before bed.  We had suspected that there was a lot going on in his head, but he hadn't expressed it until then.  So the four of us had a little hug fest and then I climbed in bed with Caleb for a while and let him ask all of the questions he wanted.  He often does that, but understands that it's not good to d...

I posted about the flu mist on Facebook a few days ago and had a great response.  So many had no idea that the flu mist was a problem for medically fragile kids. If your child is otherwise healthy, it should be fine.  It's the ones who are susceptible to germs and have chronic diseases who are at risk, because it is a live virus. If you're choosing between the flu shot and flu mist for your child (or no flu vaccine at all...), consider this:  medically fragile kids cannot be around those who had the flu mist for up to 3 days because it is a live virus.   We have to keep Abby home from school on the days these are administered. There are 2 days, because kids getting it for the first time need two doses. I found out they usually use the pre-k room to administer the flu mist!  (No worries--that is going to be moved!)  If your child had the flu mist, please let me know so that we can avoid contact for 3 days after.   Also, anyone who chooses  not to g...

"Code blue, 7 south, room 21.  Code blue, 7 south, room 21." I look up in alarm as ten staff members take off in a dead run down the hallway.  The alarm continues to repeat the location as more staff members head that direction.   I'll never get used to it.  Somewhere down the hall, someone's child is fighting for his or her life.  Next time, it could be room 6.  Somewhere, there is a mom praying that her child will make it.  Tears roll down my cheeks for her, because I've been there.  The image of 15 staff members crowding the room to attend to my daughter as her oxygen levels plummet will forever be sketched in my head.   And I know that up and down the hallway, there are moms and dads just like me praying for the situation, but silently thanking God that it wasn't their child.   This time. Because, you see, parents like us--we live  in the woods with our kids.  They are never truly "out of the woods."  We have just lear...

Abby's handprint on her first Christmas at 2 months old.  She was SO tiny!  Whenever I see this handprint, I'm reminded of God's faithfulness and I'm so thankful for how far she has come!!