Life as a Leach

Abby has had a wonderful week at school!!  She has enjoyed getting to know her classmates “for real,” as she says. She’s tired at the end of the day and has been in bed by 7 every day, but it’s a good tired!  Her one-on-one says she has a group of mostly boys who hover over her and report her every move! 🤣. She is reminding them that Abby can do quite a lot!  She spends most of her time on the swings at recess, but has also enjoyed drawing with chalk with friends.  Caleb’s recess overlaps, which they both love! Resource is during her afternoon bipap, which is actually the safest way for her to participate in PE.   The physical therapist comes often to PE to help modify activities for her.  She’s great! We are so thankful to everyone at her school for all of their hard work in helping to make this a smooth transition.  It has been a great week!

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...

5 short days before Abby heads back to school!  It became real today when we said goodbye to her Home/Hospital teachers.  I’ve been shedding a few very happy tears!  So thankful!!

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...

Flying with a person with special needs, especially one with a lot of medical equipment, can be daunting.  I'm really glad the first time we flew with Abby was without the bipap, neb, and cough assist!  If my first time was with all of this stuff, I think we might be driving to Vancouver!  :)  This will be a long post with a lot of information, but bare with me. I think you will find my personal experience and the links I share helpful. My number one piece of advice for flying with a person with special needs is to NOT assume that anything is fine!  Ask about EVERYTHING!  Contact your individual airline's special needs consultant to make sure that any equipment you have is safe for the flight.  Not everything is and sometimes only certain brands/models are allowed.  Certain batteries aren't allowed, so check for any equipment that runs on battery.  It can also vary by airline, so please call and ask.  The last thing you...

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...

I have learned a whole lot during this cruise process about cruising with a child with special needs!  I have seen a lack of blogging for families with special needs, so I thought I would designate some blogs specifically about that to help others.  The thing that really sets Disney apart from other cruises is the support and accommodations they offer for people with special needs.  It's not that other cruise lines don't want to have those with special needs, but Disney has really gone above and beyond. There are quite a few accommodations Disney offers in the staterooms.  You can see a complete list here.   We didn't need any of them because Abby is ambulatory, but it is nice that they have them!  There's also information about wheelchairs on this page.  I plan to stow Abby's wheeelchair in our stateroom as long as we can find room, but there are wheelchair designated spaces in the ship.  There are also areas to keep them when you go to the the...

F -Fourteen years seems like both a lifetime and just yesterday. O -Oh, were we so young on our wedding day! U -Understandably, we had no idea what we were getting into. R -Reality set in, but our love stayed strong. T -Then having Caleb rocked our world (in a good way!) E -Everything changed again when we had Abby! E -Even though this life isn't easy, I'm glad we are facing it together. N -Never could I picture myself with anyone else. I love you, Matty!  Happy 14th Anniversary!

Our sweet Chloe girl has had some health issues recently.  She had 3 suspicious spots removed and 2 of them were cancerous.  One of the cancerous spots did not get clean margins, so we are watching it closely and will take her back if anything else shows up. I took her to get her staples out and that incision was so inflamed that he wasn't able to see them all.  It was very painful for her, so I of course had to reward her with some doggie ice cream!   Unfortunately, that incision was infected, which earned her the cone of shame and twice daily wound care.  (I totally felt like Oprah here...You get wound care!  You get wound care!  Everybody gets wound care!!) You can imagine how much she loved that cone, and I spent one very sleepless night on the floor in the living room with her needing to constantly be touching me and shaking uncontrollably.  Fun fact:  I absolutely CANNOT be touching anyone while I am sleepin...

Since we really only had 2 days off of school, it's really not a Spring Break...more a Spring Long Weekend.  However, I was thankful for a few days to spend with my lovely family! On Thursday evening, Caleb finally was able to see Newsies, which was his birthday present.  The performance was at a dinner theater and it was incredible!  They had some really talented people and it was awesome to see them do so much dancing in a small space!  They brought Caleb a special dessert and acknowledged him before the show.   Although Abby wasn't overly excited about going because there aren't enough girls in Newsies, she really enjoyed the dancing!  My sister watched the kids on Friday so that Matt and I could go out on a "date" to buy new kitchen chairs.  Ours were cheap and are literally falling apart.  I took one of the spindles that had actually broken off to match the color!  We purchased really nice, oak chairs with a stain that matches o...