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.

Saturday, November 20, 2021
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.
Wednesday, April 22, 2020
Our Disney Cruise: So Much Bad and So Much Good
- Food: The food onboard the ship was excellent. There were so many options. There was a good mix of "fast" foods by the pool, and these were pretty good at accommodating food allergies. If you have major issues with cross-contamination, these stops likely wouldn't work for you. For our kids, though, they were fine. The only issue here was that anything "special" you needed took a VERY long time. There's nothing fast about it unless you can eat exactly as is. There was also a buffet that was open much of the day. There was a vast array of foods available, and you could also talk to a chef to request something diet-friendly that accommodated your allergies. Again, expect to wait, sometimes quite a long time, to get what you need, but the food was really good and they had numerous options. The main dining was amazing. They knew your allergies before you arrived and the wait staff really went out of their way to accommodate your needs and make sure that you'd have dinner and dessert available. I was very nervous about feeding myself because my diet is so extremely limited right now and even a different seasoning can set me in to hours of stomach pains. Thankfully they were very good at figuring out what I could eat, and I was well fed the entire time. The wait staff was also great at entertaining the kids and made our time there enjoyable. The dinner shows were fun and engaging. It was something all my kids looked forward to, as did the adults.
- Pool: I'm going to go ahead and get this one out of the way because it was probably the most disappointing part of our trip. Before going on the cruise I got this letter in the mail. You'll notice it discusses the availability of pool lifts, but does not get in to much more detail than that.
- Kid's Club: I'm going to go ahead and get this one out of the way too. This was another huge disappointment. They had Kid's clubs based on age, from infant on up. They have tons of activities (like costume parties, movie nights, games, etc...) and fun things they host in the Kid's clubs. What they didn't tell us before we got there, though, was that children have to be able to take themselves to the bathroom in order to be dropped off. Again, I was told about the kids club BEFORE I booked our trip, and that was never mentioned. That works for one of my girls and Conner, but doesn't work for the other two. I would never expect someone else to take my child to the bathroom, nor would I let them. I, however, would of course make sure they were always taken care of in that area. Since they are on an efficient timed bathroom schedule, I was not worried, but again, those were the rules. Conner loved his club and spent a ton of time there. It gave him freedom to have some independence and we knew where he was at all times. He made quite a few friends and loved the scavenger hunts and activities they offered. They called to ask why I hadn't sent the girls (a little odd to me because they really, really, REALLY pushed you to put your kids in clubs, but that's a different story. I think they really wanted the adults out spending money on alcohol 😉). I told them it was because they were not fully independent in the bathroom. They apologized but reiterated that was their rule. Their solution was to go during an open house, when families could attend together. We thought that seemed like a fun idea so we took them during the next open house. What we didn't know, though, was that there were no guided activities during that time, so basically they had out ipads and video games, as well as a few coloring pages. The girls were slightly entertained for a bit, but I didn't spend thousands of dollars for them to play on ipads. I had expected them to have some fun activities for them. Unfortunately they didn't. The girls lost interest fast and we didn't go back. Again, you don't get any sort of discount for not being able to attend, even though the vast majority of their planned activities are there. You are just expected to miss out.
- Shows: The shows on board the ship were amazing. They were very high quality, we were given good, accessible seats, and the girls especially loved every single one. They also had a magician one night and all of my kids loved the show. They had deck shows as well. Those were very crowded and hard to maneuver in, but they did help us find good, safe spots where the girls could see and enjoy the show. This was by far one of the highlights of our trip. They loved the music, the dancing, the performances, and everything about them. They were loud, so my noise-sensitive children did cover their ears often, but had I known to plan, some ear canceling headphones would have helped a ton. They also had fireworks one night and that was really magical for the kids. This was the biggest advantage of the Disney cruise for us.
- Onboard Activities: Again, much of what they offer on the ship is the pool and water slide, kids club with ongoing activities, and the off boat excursions. We were unable to participate in any of that though paid the same as everyone else. That was quite disappointing. They did offer other activities, though, such as character meet-and-greets, crafts, and drawing courses during the day. They also had ongoing movies in the theater, as well as pool-side movies and trivia. We participated in many of these activities and the kids enjoyed themselves. Though we had less to chose from, we made the best of it and the kids were able to find multiple things to keep them happy and busy. They had a costume night and pirate night and those were a ton of fun. Most people onboard participated and dressed up. They had allergen-friendly candy in addition to regular candy they gave out. It was a bit crowded and hard to maneuver, but we had extra hands with us so it worked out just fine. It was really fun to see everyone's costumes. The entire boat was also decorated for Halloween, so it was a really neat experience.
- Adult Area: They had a nice adult-only pool, as well as a few bars and clubs meant only for adults. There seemed to be many people utilizing them. We didn't do most of it since we weren't able to put the children in care, however, my parents did watch the kiddos one evening so we could head out by ourselves. We had a drink and played shuffleboard, then just walked around and talked. It was a nice time together. Luckily we are both pretty happy just to have a few minutes alone, and that was enough for us.
- General Accessibility: Overall, the ship was accessible, though there were many inconveniences. One issue was the carpeting. It was very, very hard for the girls to wheel themselves on it (and trust me, they are very strong). They can wheel themselves on most carpeting just fine, but this was a very sticky, unusually hard to wheel on carpet. Luckily we had extra hands and it was fine, but an adult chair user may have a hard time wheeling independently over the carpeted areas. Thankfully only the hallways to the rooms were carpeted. There were elevators in the front, middle, and back of the boat. Unfortunately no one wanted to use the stairs and it was always very crowded. People often cut in front of us and took elevators we were waiting for. The elevators were small so we had to split up. Again, luckily we had my parents so we were able to do this. We could fit two chairs in a few of the elevators, but often only one. Sometimes we waited 20 minutes to get us all up or down a level. It would be really nice if accessible rooms had special key that operated a different set of elevators. I had to get pretty verbal and be ready to run when the door opened so we could get in. That's not something I enjoy and it wasn't fun. We made it work, I just think there's room for improvement there. Another issue was the doors. Only certain doors were accessible. Unfortunately many were also not functioning right, were being repaired, or were totally broken, meaning we'd get out one, not be able to get back in, and then have to walk quite a bit to find another accessible door. When I informed them of this issue, they were very receptive and started testing doors, which I really appreciated. The dining rooms were tight, but there was enough room to comfortably move around and they always helped us find good seating.





































