Our Day with Campbell’s Crew Cares

Our friend Campbell, who founded Campbell’s Crew Cares, had his mom contact me and see if they could take my kids shopping and let them pick out all their own clothes.  I have never actually taken them all shopping to pick out their own outfits and I knew they would have SO much fun with it.  We coordinated a day when we had to be in Phoenix for a neurosurgery appointment and met them at Walmart.  They had volunteers there waiting to take the kids around and let them pick all their own clothes. It was so fun to see what each kid picked and watch their individual styles come through.  It was such a blessing to have outfits provided for each kid too.  We go through leggings in our house like crazy!  Thank you Campbell’s Crew Cares for taking such good care of the kids.

Our Trip to the Batcave

 We recently had the opportunity to visit the Batcave with the Colton Foundation.  It was such a fun experience that I feel it deserves it’s own post.  Our friend Campbell (he runs Campbell’s Crew Cares) nominated the girls to participate and joined us there.  The kids even got to ride in the Batmobile and Batman’s motorcycle.  The kids had a blast and are still talking all about it.  

We are Alive and Well!

Oh man, I haven’t been on here in so long!!!  We’ve been so busy living our lives, time just got away from me.  Life has been full of lots of good things, but some days it feels like we are constantly on the move.  

I know I shared before that I’ve had some of my own health issues.  Because of that, I’ve had to add specialists and appointments for myself.  It’s not my favorite thing, I won’t lie.  Genetics, Endocrynologists, cardiology,  GI, neurology, my naturopathic doctor, and my mold specialist.  I’ve had a lot of testing too.  I’ve gotten some official diagnoses myself, but no real answers.  It’s a frustrating process, but I’m trying to focus on living life to the fullest and finding joy throughout it all.  Right now they have me on the carnivore diet.  The hope is that giving my gut a break will give it time to repair, and in return, will help me keep my SIBO from reoccurring.  We still haven’t been able to figure out why it won’t stay away.  The current guess is because my IgG count is low in a few areas.  The next specialist I’ll need to see is an immunologist.  

The kids are doing well and keeping busy.  We are officially back in co-op and are still homeschooling.  Being original homeschoolers throughout the whole pandemic was such a blessing. We were able to keep the kid’s lives pretty “normal” throughout everything, and I’m so thankful for that.  After some time off when everything was closed down, Conner has been back in parkour and is loving being a crazy boy and jumping off things. The girls are back in dance and have a performance coming up in December.  They are in three dances and are so proud and excited.  

Madi tuned 13 on the 11th, so we officially have only teens in the house.  It’s so crazy to think about how grown up they all are now.  Kyla, our “year bonus kid” had a baby last fall, though, so it’s been really fun having a baby around again.  Gracie was diagnosed with NEHI, which is an interstitial lung disease.  Kyla is the best momma though and makes sure she always gets the best care.  She’s growing and thriving and is such a happy and fun baby. We see Kyla and Gracie multiple times a week and love it.  

The girls are doing great in therapy and have made big strides. We were finally able to find an in-home physical therapist for the girls, which has been awesome.  Ramya has new AFOs on the way, Madi has a new wheelchair on the way, and Deena’s been doing great with walking with just one arm crutch and SMOs.  They never cease to amaze me.

I’ll post some recent photos of the kids and our recent vacation to California.  You won’t even believe how big they are getting.  They are such great kids and make life so fun.

The Trip of a Lifetime

In June we got some very exciting news.  We had applied through Dream Factory to have a wish granted for the girls, and they were chosen.  They asked us if we would like to go to Florida with Kurt Warner through his foundation, First Things First.  When I checked the calendar, the week they asked us to go happened to be the only week that month that had no extra appointments.  The only things scheduled were our regular therapies (OT, PT, speech, attachment, sensory, and reading), and those are easily movable.  The timing was a God thing for sure, because our calendar is never that empty!  I went through the itinerary with the girls, and they happily agreed.  The plan was to head to Florida, stay at Give Kids the World, and do all the big theme parks.  Some of the time we would be on our own, and some of the time we would be with Kurt Warner, his wife Brenda, and their children and grandchildren.  My parents also joined us for the fun.  

On Saturday, July 6th, we were off!  Our first flight from Tucson to Phoenix got delayed, and then our plane was delayed again in the air.  We arrived in Phoenix and had to run a few corridors to our connecting flight to Florida.  We were the last to load, arriving just as they were calling our name for the last time on the intercom, but we made it!  The rest of the flight went smoothly and the kids enjoyed their time in the plane.  It was late by the time we made it in to Florida, but they had had two people from Give Kids the World there waiting for us to help us with our luggage and to our car.  They had rented an accessible van for us so that we could travel safely around Florida as a family.  It was amazing and I sure miss that van!  We are in the process of trying to apply for a grant to help us get a new van, but that's a whole different (long) story.  On Sunday, the fun started.  We got to spend the entire week there and didn't leave for home until the following Sunday.  Luckily our return flight home went much smoother and there was no running involved.  We even had time to grab food and use the airport restrooms, which was a big bonus.  

We had such a busy trip, but we got to do everything the kids have ever wanted.   Princess makeovers, dolphin interactions, character meals, Harry Potter Land, rides galore, fireworks, getting stuck on a water ride and needing to get carried off by the fire department (ok, ok, that one wasn't on our wish list.  It just ended up being an added bonus I guess)...  You name it, we did it!  The entire time we were so well taken care of.  There were always extra hands to push wheelchairs.  Meals were made to our dietary needs at GKTW so that we could dine there without worrying.  We were provided with an oxygen tank in case Madi had a seizure and needed it.  First Things First even brought us sunscreen, backpacks, lip gloss, raincoats (there was a lot of rain this trip!) and so much more to make sure our needs were met.  The kids were spoiled and were given souvenirs galore.  In fact, they were given so many, it took an extra suitcase just to get us home!  When I say all our needs were met, I mean ALL. They even brought us that suitcase, knowing we would need it to get home.  We felt so blessed and humbled to be part of it all. The memories we made this trip will truly last a lifetime.  

Here are some of our favorite photos from our time there.  As you can see, we had an insane amount of fun!

Give Kids the World Village was an amazing place to stay.  Each family gets a little house with bedrooms, multiple accessible bathrooms, a kitchen, and a washer and dryer.  There were characters dining with us at meals, rides on site, a salon, a movie theater, and a really neat pool.  The kids could even eat ice cream for breakfast.  Talk about spoiled!  

The girls got to add a star to Star Tower at the village.  The celling is covered with stars, each one representing a wish child that has stayed at the village.  Each child who stays at GKTW is on their dream trip through a dream granting organization.  They have so many stars, they've had to build a new tower.  It's hard to put in to words how it felt standing in the middle of all of those stars.  To know that each of those families understands, to a degree, what your journey looks like was an overwhelming feeling.  To know that each star represents a child who faces life-altering disabilities or illnesses took my breath away.  So many unique stories and families, brought together in such an impactful and significant way.  It was breathtaking, to say the least.

Princess Makeovers

Feeding Gators at Gatorland

Universal Studios  (This was Conner's dream, but we felt like it was important to make sure he was included in picking the fun.  He is such an amazing, helpful, and tender-hearted brother.  We thought he deserved to get his wish too)

Disney's Animal Kingdom

SeaWorld

Disney Magic Kingdom (Two Days Worth!)

It was truly a magical time.