Surgery #10

This morning Colten had surgery #10. Thankfully, it was a simple outpatient one and we are already home!

If you look back on posts, you’ll notice there is no defined surgery #9. His big 13-hour surgery this past summer was #8 (bladder work) as well as #9 (intestinal/bowel work).

The primary surgical procedure for today was related to his big surgeries this past June. Today he had a dilation done to combat a somewhat common issue called stoma stenosis. It requires sedation, which he despises. I don’t blame him!

(Excuse me while I scatter throughout this post some fantastic photos of this kid’s expressions from our trampoline…)

I’ll come back to that in a minute…. because there was a second piece that came into play this morning.

When Colten’s first round of ear tubes (placed April 2015) worked their way out, one of the tubes got stuck in the ear canal that was full of wax, despite the ENT office telling me such a thing was “highly unlikely” when I called about it. I could see the tube through our home otoscope (yes, we own one, and I’m sure you’re not surprised by that by now!). The ENT checked him out he determined the tube was in fact stuck in there, but so deep that he preferred to remove it while he was sedated. So the ENT pulled it out under sedation while putting in Colten’s second round of tubes and removing his adenoids (March 2017). Fine… All good.

About a week ago, guess what fell out (as they are supposed to), and guess what, although “highly unlikely”, got lodged in the same child’s ear canal, again!!!

So knowing Colten would already be under sedation for the dilation, my Momma Bear wheels started turning. How convenient if they could just remove the ear tube while he’s already sedated. Right? Of course right! (Cue Fiddler on the Roof music…)

Medical Advocacy Tip: It never hurts to ask… you might get exactly what you want and exactly what your kid needs.

So last week, I texted his AMAZING urologist, Dr. Liss, who would be performing today’s procedure and said, “I know you think I’m already crazy but…” and explained the situation and asked him if he could just go in there and snag that tube out while Colten is under anesthesia. Within about an hour, he had secured an ENT to come in during surgery and get the ear tube extracted so that we don’t have to deal with another sedation in the near future for something so minor!

This is not the first time we have requested multiple yet unrelated procedures or exams all done at once within a single anesthesia with him. It reduces how many times he has to get put under when we can group these things together. It takes some push and heavy coordination but we’ve experienced success at both U of M Mott Children’s and Beaumont Royal Oak Children’s. I highly recommend this when feasible for any child. You can dictate and coordinate your child’s medical care if you push for it and have doctors that truly care about what’s best for the child.

On that note, let’s go back to Colten hating sedation. This kid has experienced it enough times that he knows he hates the mask. He hates the smell, and he hates “going to sleep.” So I asked Dr. Liss what options we had. Either mask or an IV inserted. For a couple months now, I’ve talked with Colten about these options, as a hypothetical. He kept telling me, “I’m still thinking about it.” Then finally I asked him, if he absolutely HAD to choose, which one did he prefer. He chose “the poke” (IV).

Medical Advocacy Tip: Involve your child and let them help make appropriate decisions. They will learn to be their own advocates.

So when anesthesia called for the surgery pre-consult a few days ago, they thought it was quite comical that a 5-year-old was requesting what type of sedation he wanted! But he got it!

This morning was a bit emotional though. We had not told Colten that this surgery was scheduled, to avoid any undue stress and anxiety he would have leading up to it. We’ve been struggling every day for a couple months now with this one particular stoma and talked with Colten about getting it fixed. I had repeatedly told Colten that eventually we would need to get it fixed, but we would wait – it wasn’t urgent. I even said we would wait until he agreed to it. #momfail

But the process has become so difficult at times that it just had to get done. Knowing spring break was coming up, we were able to slip into the surgical schedule while everyone is home from school. This morning, Richard and I woke him up with a big hug and a kiss. As he wrapped his arms around me, I said, “Daddy and I are taking you to see Dr. Liss today. He needs to fix your belly button.” And then came the tears. I was at least relieved that he didn’t get mad and angry; he was definitely sad and scared. I pretty much carried him around the house for the next 10 minutes or so as we got ready to go – he didn’t want to let go of me. When we got to the hospital, we asked if he wanted a piggy back ride in or wanted his wheels. He said, “No wheels – just carry me, but not a piggy back ride.” Absolutely buddy. Absolutely.

We reported to Royal Oak Beaumont this morning at 9:30am. We were called back to pre-op rather quickly and then there were more tears (this time from me) as Michelle, from Child Life, came to greet us. She was incredible through our summer procedures and extended stay here and her meeting us this morning as we came in was just an incredible, touching act of kindness. I was quite touched that she remembered Colten and us, and she even recalled that he enjoyed Paw Patrol!

Once in pre-op, Colten remained on my lap, on the bed, through it all. While not a lovely experience, Colten did pretty well with the IV considering it’s a big needle and poke. Such a brave kid. He amazes me that he wants to watch, know what everything is, and wants to understand what is happening. It’s definitely a coping mechanism for him and we find he cooperates much better when he understands what is going on.

Due to some morning surgeries for other patients taking a bit longer than expected, Colten didn’t get wheeled back into the OR until 12:10pm. The Versed through the IV worked much better for him than the oral doses in the past so I wheeled back with him to just outside the surgical room and left a very groggy, sad boy calling for Momma. Always breaks my heart…

At 1:30pm, Dr. Liss came to talk with us as surgery was done. He was able to do exactly what he planned with the dilation, and placed a MIC-KEY button that will remain in place for at least six weeks. He did a full scoping of all the bladder work from June while he was in there and everything looks beautiful! Yay!!

After we returned to the waiting room, Dr. McBrien came out and said she cleared quite a bit of impacted wax from both ears and that BOTH tubes had dislodged and were stuck in the ear canals. She said his ear drums had already healed up nicely and there was no fluid at this time; she’s hopeful he won’t need another set of tubes but that will only be determined with time.

We went back to see Colten at about 2:15pm, got him to eat a popsicle, some Golden Oreos, and were headed home by 3:30pm.

Since I promised this kid a trip to Build-a-Bear after this surgery, that’s where we are headed later this evening! Off we go…

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Disney – A Few of Our Favorite Things

I asked the kids as I prepared this series of posts, “What were your favorite things about Disney?” And after hearing them say “everything!” repeatedly, I kind of forced them to drill down. But I will say, Disney is a daily constant in our house. Christmas was filled with Disney related gifts. They’re obsessed and they want to save every dollar they ever get to go back. I decided to recap a few of their favorite things here, along with some of my favorite pictures of each of them, in case you skipped the other posts! If you saw the other posts, you likely saw these pictures already….

Colten: All of it. (Which rides?) All the rides. (Which characters?) All the characters. I liked all of the Mickey Mouse characters! (What all did you buy there?) I bought a hat, keychain, stuffed Sorcerer Mickey, bubble wand to share with Sophia, and a light saber. (Anything else?) I liked the plane ride, not when we were taking off. I kind of liked the mine ride, but not that much. Momma, type that I got captured by First Order Storm Troopers and got to meet Kylo Ren, Chewbacca, and BB-8! TWO TIMES!

Parker: Everything! (Favorite ride?) Star Wars Star Tours and Test Track (Favorite character?) BB-8 (What did you buy?) Necklace at Animal Kingdom, BB-8 pin, light saber, Indiana Jones Mickey, Pezz dispenser, and a droid build.

Maxson: The dinosaur ride (Primeval Whirl) (Favorite character) BB-8 (What all did you buy?) Mickey Mouse, light saber, knife at Animal Kingdom, big Buzz Lightyear toy, a droid build, and a Pezz dispenser.

Sophia: Minnie and Mickey (Favorite ride?) Rocket ships (really?!) Yeah! (Favorite character) Minnie & Mickey! (What did you buy?) Lots of Minnie’s! (Minnie Mouse, Princess Minnie, light saber, bubble wand to share with Colten).

Richard: Hollywood Studios (Favorite ride or experiences?) That’s not easy to answer! I really enjoyed the Lion King show, Indiana Jones show, and Test Track at Epcot with Parker (Favorite character?) Kylo Ren (What did you buy?) I splurged and bought a custom Avatar action figure, a mini Kylo Ren lightsaber, a pin, and gifts for the family

Kate: Seeing how excited they got over everything and getting to experience something SO incredibly magical with them. My favorite rides were the Mine Ride (clearly from the picture of the boys!) and the Primeval Twirl because Parker and Max actually went on another roller coaster after the Mine Ride. I thought for sure I ruined them! My favorite characters were Mickey, and then (and I cannot believe I’m saying this) the Star Wars characters. They were so IN CHARACTER, it was amazing! It wasn’t just a stand-in-line-and-snap-a-picture sort of experience like most of the other characters – these guys interacted, said lines from the movies, and seemed so very authentic. What did I buy… OH, yes, a magnet. Yup, just a magnet that says “Disney” in a fun character font. I used the rest of my gift card to cover some extra food items here and there, tips at some of the sit-down meals, the groceries we had delivered to our room (we ate breakfast in our room each day), and a coffee at the park one morning. I’m not big on souvenirs and was happy to be able to have my card as “slush money” wherever we needed it.

And so here we are weeks later and Sophia STILL sings Disney songs. Almost EVERY DAY she packs her little backpack and says she’s going to Disney or to Magic Kingdom. She is obsessed with Minnie Mouse – so much so that I convinced her to potty train by giving her Minnie undies – and it worked! Our Christmas was full of Disney related items and the kids still want Mickey pancakes.

It was an incredible closeout to 2017. We know our struggles and the aftermath of this surgery will still be part of 2018, and that Spina Bifida/Hydrocephalus/etc, etc, never go away, but we are so glad we ended the year on this note and that Colten was chosen to get something this amazing. He deserved it!!

So thank you to the sponsors…

Kroger  /  Children’s Hospital of Michigan  /  Jersey Mike’s  /  Better Made  /  LaFontaine  /  Lear Corporation  /  Absopure  /  MASCO  /  Qwik Park  /  US Ice  /  Angels of Hope

Thank you to the 100.3 WNIC iHeartRadio team, especially Jay Towers, Allyson, Chelsea, and Cody.

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Read more: Disney Intro / Day 1 / Day 2 / Day 3 / Day 4 / Day 5

Disney Day 5: Last Day! Divide and Conquer!

We had planned on Epcot for our last day. It was a shorter day as we had to be back at the hotel at about 2pm to meet all the Jay’s Juniors people for final interviews and get ready for bus loading. But we really had to be back closer to 1pm because of Colten’s needs. After looking at Epcot’s attractions and asking Colten what he wanted to do on his last day (“ride more rides!”), we decided I would take Colten and Sophia back to Magic Kingdom and Richard would take Parker and Maxson to Epcot. We packed everything up from our rooms and checked it at the bell stand, then off we went! It was a rainy, overcast day but that didn’t stop us from enjoying our last few hours.

Sophia was excited to see the castle again, and we went on some rides we never made it to at Magic Kingdom (we really could have done 2-3 days at Magic Kingdom alone!) – Aladdin’s Magic Carpet ride, the Carousel, and It’s a Small World (a repeat for Sophia) – a song Sophia has continued to sing every single day since she went on the ride. Every. Single. Day.

(This part is narrated by Richard, as Kate was with Colten & Sophia) Parker, Max, and I headed to Epcot.  On the bus ride over Parker quietly admitted that he (like his siblings) wanted a stuffed Mickey and the one he wished he had bought at Hollywood Studios was the Indiana Jones Mickey.  We did a quick app search and found that the only other location selling that specific Mickey was at Epcot, which would become our first priority once we got to the park (more on this Mickey later).  The boys loved Mission: Space and were excited to go into Spaceship Earth.

We ventured over to the United Kingdom to hopefully meet Mary Poppins at 11, but the staff said that Mary was busy with the Banks’ children and wouldn’t be visiting until 1pm. Unfortunately we will have to save our stories for Mary of the boys being Jolly Holiday penguins (in Dakota’s production) for another time, as we couldn’t stay late enough to see her.   We rounded out our time at Epcot with shopping for pins, gifts, and Parker’s Indiana Jones Mikey.

(Back to Kate narrating…) When I got back to the hotel, I had to collect our medical suitcase from the bell hop. We had requested a late checkout to accommodate Colten’s bathroom procedure (it takes about an hour), but they told us to use the bathroom in the fitness/spa area. There was one bathroom. After some panic and stress about water temperatures that I couldn’t control (then realized I could using the shower water), barricading Sophia into the bathroom with us for an hour, and having to tell people that came to use the bathroom that we would be occupying it for about an hour, we just settled in and did our thing.

(Richard narrating) Parker, Max, and I returned from Epcot and swung through the resort gift shop on the way to meet the group . Parker started playing a Marimba (something he’ll get to make later in the year for Cub Scouts) and casually set his stuffed Mickey on a shelf.  Later, as the group was getting packed up and loaded on the buses, Parker noticed that his Mickey was missing.  I frantically talked with store staff, searched the lost and found, then tracked down someone that had been near us in the store earlier (wearing an Avatar Banshee on his shoulder) and still came up empty handed.  On a whim, I looked on the store shelf and there tucked next to all of the “Safari” Mickeys was Parker’s Indiana Jones one. The staff said “oh yeah, we don’t sell that one, of course it’s yours”. Phew, crisis averted!

(Back to Kate now…) Then we were done – on the bus, with the two littles falling fast asleep, back to the airport.

Once near our gate, they had a special area setup with Frozen playing, snacks all over, Christmas decorations, and another gift bag for the Jay’s Juniors kids. Do I even need to say it? Tears.

We had a packed flight home, and all three boys wanted to sit together so Richard and I were across the aisle from them with Sophia. Colten again did NOT care for take off, and I was in panic mode as the pilot repeatedly said, “We expect some severe turbulence as we make our ascent.” Thankfully, we had a delay that caused us to miss the storm and the flight was mostly okay. We worked it out with my parents to meet us near baggage claim and grab our car key. Then they went to get our car so we could avoid lugging everything and everyone to the shuttle and we were able to get into a warm car and get our family home. (Huge thank you to them for that.)

I realized two things:

1: Disney doesn’t take away medical complications or procedures. You still have to deal with cruddy stuff even at Disney.

2: If we have to deal with cruddy stuff, doing it at Disney is better than anywhere else.

We can’t ever truly escape or ignore the reality of things that need to get done every few hours, or medicine that needs to be taken, or other procedures that carve out time in our day. But if we have to do those things, doing them at Disney definitely takes a little of the edge off. That’s what this trip is about. Some of those kids on the trip were in the hospital the day before we left. Some were going into surgeries days after we got back. None of us truly escaped the realities of caring for medically complex kids. None of the kids really escaped the daily routines they are subjected to. But to have giraffes and zebras, castles and characters, rides and treats, to have all that surrounding you definitely makes you focus more on the fun than on the grind. And that’s what it’s about. The radio station and sponsors know that. They know they cannot cure our children, or take away their pain, or stop medical interventions. But they realize they can give us a break from home, a break from focusing on the medical and a chance to enjoy every single minute of every single day while sneaking in the necessary medical stuff.

Thank you Jay, Allyson, and Chelsea!

Thank you Cody for pulling all the pieces together!

Thank you 100.3 WNIC and iHeartRadio!

Read more: Disney Intro / Day 1 / Day 2 / Day 3 / Day 4 / Disney Favorites

Disney Day 4: Hollywood Studios

Since the boys are all big Star Wars fans, this was a much-anticipated day as well! We stuck the “mild” day at Animal Kingdom between Magic Kingdom and Hollywood Studios on purpose, but the evening before was such chaos, it sure didn’t seem mild!

We did the same routine this morning upon getting to the park. Richard took Parker and Max in with no bags (quicker way to get into the park), and I kept my backpack, Richard’s backpack, and the two littles. I’ll say, this was a PAIN IN THE BUTT to do this solo, but it did allow Richard to get the boys signed up for the highly popular Jedi Training which fills up super fast and we couldn’t FastPass. Colten didn’t want to do it (until after he saw the boys do it – and at that point it was too late), so I took him and Sophia strolling through Hollywood Studios. We didn’t get far before we saw a short line and Daisy Duck, so we jumped in line and miraculously, Richard and the other two boys made it back to us after getting their time slot signed up.

After the picture, we did have to part ways because the boys had an early Jedi Training time slot. So I continued through the park. Colten spotted Storm Troopers and we ran to catch up. I guess they don’t stop in the park to do pictures. They kept kind of moving about so that kids couldn’t really get pictures with them. It seemed a bit odd. So we went into their apparent walking path so I could snag a picture with Colten as they walked up behind him, but what happened next was kind of crazy and only this video will help describe it…it’s kind of long but the first few minutes show you how in-character these guys get! Apologize for the chaos of the video – trying to push two things and record was a struggle, then the handler took Sophia from me which helped, then she ended up taking the camera. So don’t get dizzy 😉

If you really don’t want to watch, the short version is that I guess Storm Troopers go through the park and “capture” kids (seems like it’s often kids with special needs from the stories I keep hearing)… I’m actually tearing up as I write this because it was just amazing. Colten was captured and we had to hightail it through the park following these very-much-in-character Storm Troopers. We were taken to a private photo shoot area that only kids captured by storm troopers get to go to. Other people on the path to the other Star Wars characters were all asked to keep walking – “private photo op in session”! Colten actually got kind of scared at this point because he thought they would put him on a scary ride – my naivety and excitement building didn’t help and I had to finally whisper to him at one point that “nothing bad happens at Disney” and reassure him that everyone was here to just give him a good time.

After pictures with the Storm Troopers, and getting two very nice pins from them, we were led the back way into the characters photo area. He was whisked in through back doors to the front of the lines to see Kylo Ren (he was VERY scared – again, these characters were very much IN character and Kylo is scary!), Chewbacca (who got some great hugs), and BB-8 (who got the biggest smiles).

It was amazing and while I was so excited for Colten, I couldn’t believe this happened when our biggest Star Wars fans weren’t with us!! I said to Colten as we were pointed to the exit area, “Your brothers and dad are going to go crazy when they see these pictures!” The handler that was with us said, “Do you have more people in your party?” I responded that my husband and two other children were in Jedi Training right now. She said, “I’ll be in this area for the next couple hours – when they’re done over there, you all come back here and we’ll do this whole thing again!” And of course, I cried. And of course, we came back. This time, Colten was way more sure of the situation and was ALL smiles!

Max wouldn’t take his eyes off Kylo Ren and his lightsaber. I’m pretty sure he was trying to figure out if this was the real deal. He actually looked more nervous in these pictures than when he was on stage fighting him!

I’m a bit out of order here, because actually, BEFORE going back through the Star Wars characters with Richard, Park, and Max, we had met up with Richard to watch Parker and Maxson do their Jedi Training on the other side of the park. So awesome – they LOVED it! Tons of pictures plus there are two videos included below of their actual light saber fight with Kylo Ren. They embraced this with so much passion, they spent time later in the day passing on their training to Colten and Sophia (pictures further down).

The other excitement at Hollywood Studios included the various Star Wars parades, Indiana Jones show, another photo op with Goofy, meeting Sofia the First, and the Toy Story ride.

Colten kept trying to use the force on the Darth Vader statue…

We enjoyed another character dinner at Hollywood & Vine, a last minute change of plans that I’m so glad we did! It was very heartwarming to see how into the characters the kids were (even our very stoic Parker!) – and the “original” characters at that. They would get so excited to see them coming, all get into photos, and all get hugs. It was awesome. I grew up a big fan of Mickey and had many opportunities as a kid to go to Disney. It was awesome to get to see my kids have this experience!

As we closed out the night, Richard had to get pictures selected from the Jedi Training, so we strolled out of the restaurant and headed to the customer service area. The boys all had their souvenir lightsabers…

Sophia insisted on having her own. “Me be a Jedi! Me get a lightsaber!” So with the money left on her card, I took her to the store and let her pick one out. Silly me for thinking I would get at least one non-Star Wars obsessed child. Fittingly for her, she chose the dark side. (Before Sophia could really even talk, she would of sing/chant “Ma-Ma-Ma Ma-MaMa Ma-MaMa” to the tune of Darth Vader’s theme song – no lie!!!) After asking the cashier to “open it! me want the lightsaber!”, she walked out of the store holding it firmly in front of her repeating, “Me a Jedi! Me a Jedi!” As we approached the customer service area, Parker and Max had been teaching Colten the ways of the Jedi from their training earlier, and Parker quickly took on the training of Sophia as well. It was a really cool ending to this day.

I’m putting two videos in here because Max has a great line at the end of one and the other gives a good glimpse into Parker’s eldest child personality as he teaches Sophia how to be a Jedi.

Read more: Disney Intro / Day 1 / Day 2 / Day 3 / Day 5 / Disney Favorites

Disney Day 3: Animal Kingdom

The day started off overcast but it was still warm and way nicer than Michigan!

We quickly realized that having me take the two littles and all the bags allowed the older two and Richard to get through the entrance much faster and get in a line that was sure to be long. So we did that and they went off to one area of the park and once I got through the line, I went to a different area of the park more suited for Colten and Sophia. We all saw some beautiful scenery and animals, including the Tree of Life, and got on some rides.

Colten and Sophia enjoyed DinoLand quite a bit and we happened to be in the right spot at the right time and were first in line to meet Safari Donald!

As the day moved on, the older boys met us in DinoLand and Parker and Max agreed to another (tamer) roller coaster, Primeval Whirl! Given their experience the day before, I was so thankful they agreed to this, and that they enjoyed it.

We took in The Lion King show which was incredible. As you can see from Max and Colten’s faces in those theatre photos, they were enthralled! (Parker was in processing mode.)

We thought we would head back midday again, but we found that there wasn’t a TON we wanted to do here, so we stayed a bit later, till almost 3p, and figured we would enjoy the hotel pool before dinner. We had reservations at Tusker House, but I ended up calling the reservations line to find out if we could get into a character meal instead. Thankfully they were incredibly helpful and got us into Chef Mickey’s at the Contemporary Resort for a very late dinner. We didn’t mind – all our meals were late and we snacked between. We knew the kids really wanted to see these characters though and lines at the parks were forever long. I’m addition to that change, once we got back to the hotel, Richard snagged a FastPass for the Test Track at Epcot that Parker had really expressed an interest in. We figured they would go there and meet us at Contemporary. (Much bigger smiles on Parker here!!)

This was a great plan until I decided that me and the three other kids would go find their souvenirs before going to the Contemporary. I had initially sent Richard with the list of things they saw at Magic Kingdom that they wanted (we held them off in case they found more stuff at Animal Kingdom), but the lines were so long for Test Track even with the Fast Pass, that they were going to cut it too close. So I decided to load up Max, Colten in his wheelchair, and Sophia in the stroller, and get on the bus from Animal Kingdom to Epcot, get through the entry gates and checkpoints, and go shopping. Please don’t ever do this on a tight schedule. This took way longer than anticipated and I literally had to run through Epcot to the store pushing the two of them and not running over Max, find the items they wanted (we had looked on the app already so that helped), then run back out to the monorail station. We missed the monorail by minutes and had to wait, on an incline, for what felt like 30 minutes. And Max had to go to the bathroom. But they all had new stuffed buddies to occupy them so we were good!

They enjoyed the monorail ride and we got to the Contemporary a few minutes past our reserved time. Because our entire party was not there – Parker and Richard were at least 20 minutes behind me still, they postponed our reservation. I was just glad they didn’t cancel us!!!

Chef Mickey’s was temporarily moved out of the actual restaurant into the convention center but having no prior experience, it was still amazing! There was a huge gingerbread house and dessert display in the middle of the room, with plentiful buffets all around to eat from. Again, more food than we needed! We met Goofy, Minnie, Donald, Pluto, and finally Mickey! All the kids fell asleep on the way home from this one!

Richard snagged a picture of the artwork the boys did on the table – mostly this corner was all done by Parker as evidenced from the cursive writing (he LOVES writing in cursive!) and artistic ability…

Read more: Disney Intro / Day 1 / Day 2 / Day 4 / Day 5 / Disney Favorites

Disney Day 2: Magic Kingdom

Due to long opening hours at Magic Kingdom this day, we packed in a LOT!

It was beautiful weather and we got there early so we were able to jump in a few ride lines without a FastPass. Very first ride? Astro Orbiter. We could all go on – and Max even got a pretend “birthday” so he could be 7 and ride with Parker or alone instead of a parent. Thank you to the very nice ride staffer that permitted this.

Max somehow remembered this grand lie every time someone asked him. His mother on the other hand, was so honest that she almost spoiled it a couple times. Thank you Disney, for teaching my child to be a good liar finally…. The kids enjoyed driving cars after that, then flying high with Dumbo.

We stopped for a snack and still don’t know why/how this happened but the cart worker gave Richard two free hot pretzels that morning! Score!

We followed that up with the Buzz Lightyear ride AND getting to meet the big man himself – our first character!!!

Then onto the teacups – we had a #teamspinfast (Colten, Parker, and me) and a #teamspinslow (Sophia, Max, and Richard). Everyone enjoyed this one! (As evidenced by the short video of #teamspinfast)

Then we hit the Little Mermaid ride (Sophia reached out and waved at every Ariel and said, “Hi Ariel!” repeatedly to each one. Also, Richard looks overly excited in this picture….). That was all before lunch!!

Our initial plan for each day was to stay at the park until about 1pm. We would eat lunch right before that and then head to the bus stop. This would allow us to hopefully get back to the hotel about 2pm, handle Colten’s needs and let Sophia nap. Then we would return to the parks around 5pm, do a few more things, then eat dinner late. That was our plan. In reality, I’m sure we never left a park before 2pm, Sophia napped on the bus every day, and we were able to get back to the parks sooner than anticipated.

As we pushed to leave Magic Kingdom for our “midday” break (it was 2:30pm), we came upon the parade and of course, had to stay and watch. Sophia had fallen asleep in the stroller but we woke her up for Mickey and Minnie at the end as all she talked about leading up to the trip was meeting Minnie and we hadn’t seen either of them yet.

I’m so glad we stayed and just enjoyed it instead of rushing back. Thankfully Colten’s not on a strict timing with his needs so we can flex sometimes. While I handled Colten’s stuff, Richard took the other kids down to the pool for a bit to swim and play with the activities nearby, such as a giant Connect 4 game.

Because Sophia slept in her stroller and on busses, we only attempted napping her once at the hotel – and this meant we weren’t at the hotel as long and could get back to the parks – it worked out way better than I anticipated. As I mentioned, Magic Kingdom was open late that day and we for sure wanted to see the fireworks and lights shows. Arriving back at Magic Kingdom at night was simply beautiful – the castle lights were mesmerizing!

Earlier in the day, Max had asked about doing the Seven Dwarfs Mine Train ride and the wait time was horrible and we couldn’t get a FastPass either. I promised him we would stand in line later that evening if he still wanted to ride, but I didn’t want to waste daylight standing in line! So, Max, Parker, Colten and I all went to the Mine Train ride and stood in line for maybe about an hour and a half or two. The boys were incredibly well behaved – we played some trivia and “would you rather” games, and they played the games that are along the queue, and we snacked on candy. Richard and Sophia fit in about three other rides while we stood in line! It was totally worth it – although after seeing their faces, I was sure I had lost any future roller coaster buddies for the week!!! The Mine Train was so shaky, there were parts of the ride where I reached forward and held Colten’s head – I was sure he was going to either hit his head on the side or conk heads with Max! There were some tears when we got off the ride, but if you ask them now, they say they liked it – EVEN COLTEN!

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Disney Day 1: Travel / Hotel / Hoop-Dee-Doo Revue at Fort Wilderness Lodge

When the parking lot shuttle (also paid for by Jay’s Juniors sponsors) dropped us at the airport December 5th, I was a bit worried how we would manage getting everything into the airport (6 suitcases, multiple carry-on bags, stroller, wheelchair, and 4 young children). I should’ve realized by this point that EVERYTHING was taken care of. EVERYTHING. We were met at the shuttle drop off by a swarm of radio station staffers that quickly helped us grab bags, push the stroller, push Colten, and guide us to where we needed to be to get our bags checked. We were welcomed at the escalator with a Jay’s Juniors sign (and my parents!) and proceeded on to check our luggage.

Once that was done, we moved through TSA as quickly as we could expect to. By the way, a lot of medical supplies (especially things like lubricant and sodium chloride solution), get read by the scanners as potential explosives. This made for some interesting searches through our bags because we had backup medical supplies in some of our other carryons in addition to our carryon suitcase. When we got to the gate, an entire group of superheros and disney characters were waiting for us – including Paws! Tons of hugs, stickers, and cuddles followed…

Each of Jay’s Juniors were given a goody bag of treats, then each family was given ANOTHER bag of stuff from Delta – eye masks, ear plugs, more snacks, waters. I keep going back to tears and overwhelming. All I could do was hope that I didn’t cry throughout our whole trip, because it felt like I had been crying happy tears since October 31!

On the plane ride out, we had three seats in one row and three right behind. Richard was with Sophia and Parker; I was with Colten and Max. This was Colten and Sophia’s first plane ride – and likely the first plane ride Parker and Max would remember. Colten did NOT like take off. All other children were not phased by flying. Once we were up, they brought all of the Jay’s Juniors cupcakes (let’s go back to our magic word – overwhelming!).

We were very glad that we had a plane with screens at each seat – some of the kids watched movies, one little one slept. Overall it was an easy flight. I can say that now after downing quite a few Xanax for my flight anxiety!

Once we arrived into Orlando, we were moved onto one of the Disney’s Magical Express busses along with luggage and taken to our hotel. Breathtaking!

Everything at Disney was decorated for Christmas and we had the pleasure of getting to see some massive Christmas trees at each park and our hotel. We were given two rooms, connected, for the size of our family – one had two queen beds and the other had a queen bed and a bunk bed. Don’t judge but Richard and I each enjoyed a spacious queen bed to ourselves throughout the trip!! The boys rotated a bit between the queen bed and the bunks, and Sophia actually had a pack and play / crib that she slept in. Plenty of space, and glad we had two rooms because due to Colten’s bathroom needs, having a second bathroom was so helpful. And yes, we saw animals right outside our balcony!

Since we were in Disney five days and had a four day park hopper, we had carefully plotted out what parks we would get to on certain days. If you haven’t been to Disney in a very long time or ever, reservations for meal times, shows, and rides are almost critical to getting everything in that you want to do. Only having a couple weeks to plan after getting our ticket information, we got some great advice from our friends (thanks J&J!) and were able to secure some highly recommended shows and meal options. Our pre-planning (ok, MY pre-planning) was a huge help to laying out our trip but I was surprised at some of the last minute changes we made that worked out way better than anticipated. So five days, four days in the parks – this meant one day with no parks and we figured that would be day 1. We would be tired from the travel and just spend time exploring our hotel grounds. So we arrived, walked around looking for animals, grabbed lunch and played on the playground for a bit, then back to our room for our luggage, handled the medical/bathroom stuff that needed to be done, and figured out our timing for the rest of the day. Disney is so massive they suggest you give yourself 90 minutes when traveling around. We had found a great website that helped us plot a little better in terms of timing, but there doesn’t seem to be a way to know when a bus will actually arrive at a station (except “20 minute intervals” or something like that – no actual TIMES), so we had to buffer everything anyhow.

We had reservations for dinner at Fort Wilderness Lodge, for the Hoop-Dee-Doo Revue, the longest running dinner show at Disney World! This show came HIGHLY recommended (and contested by me because it would take up TWO of our sit-down meals and I was already nervous we wouldn’t have enough meals to feed everyone all five days!) and did not disappoint! I think a lot of the humor went way over our kids’ heads, but it was very entertaining, lots of music, tons to look at, and family style eating. And drinks were included so that was a nice end to our evening! Eat, drink, and bus back to the hotel!

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Disney – Jay’s Juniors Trip 2017

Magical. Overwhelming. Exciting. Joyful. Exhausting. Incredible. 

Those are the words I used to describe a brief social media post with some preliminary pictures and they still hold true. The stories behind the trip though – absolutely amazing.

(This post is probably one of the longest I’ve ever written with more pictures than you probably want to see, so I’ve broken it up into multiple posts, one for each day, plus a closing post. I provide links at the end of each post to get you back and forth to where you want to go, if you want to read more.)

While the call from Jay Towers, Allyson, and Chelsea came in on October 31, we couldn’t say anything until it was announced on the radio the following week. Thankfully we didn’t have to wait long! But it was a bit surreal. Then it became way more real when our email arrived with our lodging information – I think I cried for about 30 minutes when I read “Animal Kingdom Lodge”. I had totally anticipated one of the more baseline hotels – I mean, they’re sending 19 kids and their families! When we showed the kids videos on YouTube of the Animal Kingdom Lodge, they were over the moon! Giraffes and zebras outside our window? Yes please!

Move forward a bit to November 20th when our Magic Bands arrived! Once we received our hotel reservation, we could go online and customize our colors and have them sent right to us. I really tried to convince Sophia NOT to get pink (personal distaste for the color), that the purple looked way cooler, but she was not having it.

The very next day after our personalized bracelets arrived, we had a Welcome Party at the radio station offices with all the other families. We got to meet Jay, Allison, Chelsea, and Cody, as well as other staffers.

Colten wore his Superman shirt that day, which got him a pass up to Jay’s office, which looks like a shrine to Superman. He even got to pick out a Superman figure to take home!

While at the party we received our goody bags of tickets and AGAIN we were simply overwhelmed with it. We got 4-day park hoppers plus a water park for everyone in our group. We received information that Delta would cover ALL luggage (this was a big concern of mine leading up to the meeting as 6 people traveling plus medical supplies in a suitcase of their own would quickly add up at $25/bag!) and would be super flexible with carry-ons, weight limits, and number of pieces. They simply wanted to provide a worry-free experience. Joni from Delta was incredibly helpful in relaying information about traveling with medical supplies and equipment – and even went an extra step for us: My mom, never afraid to ask anyone anything, had spoken with me prior to the trip and said, “We would love to see you guys off at the gate. See if we can get in somehow.” I replied to her that with security measures, that was highly unlikely – she would need a ticket. Of course her response was, “Just ask!” (I totally wasn’t going to ask!) As Joni explained at our party how things would go – a special TSA line, people to help with our luggage, special baggage check line, I decided I would ask. Sure enough, Joni offered to get my parents two gate passes that would allow them through TSA to our gate for the morning. Crying again.

In addition to our boarding passes, luggage information, park tickets, Memory Maker gift card (we were able to get all the professional photos taken around the park downloaded to our phone at no cost to us!), the sponsors also provided spending cash. As this was a bit vague, we weren’t sure what to expect. Tears again as I opened up an envelope that had six, SIX $100 gift cards – one card for each person in our family. We were so overwhelmed and appreciative of this. We allowed each of the kids to have their own gift card and that would be their spending money for the trip for any souvenirs they wanted. That was ample for them and allowed us to not stress at all about taking ANY extra money. We had even more trinkets in our bag of stuff, including a super cozy blanket from Childrens Hospital of Michigan that Parker and I now fight over on the couch because it’s the absolute warmest blanket!

We kept a countdown at home for the trip, each kid responsible for a week of marking off Mickey numbers. They added to the wall by coloring a ton of pictures and the excitement continued to build as we got closer and closer!

Mickey pancakes were made, and I even found some matching shirts for the kids at very low prices, which was helpful to get them matching each day and keep tabs on them!

We also received special “press passes” and Jay’s Juniors shirts to wear on the departure day.

We were packed and ready to go December 4th! Over the years, each of our kids has received a suitcase on their first Christmas from one of my sisters. The kids always get excited to use them, so while I could’ve packed them into 1-2 larger suitcases and had less luggage, they really wanted to take their own! We managed to get each kid’s items for the week stuffed in there, plus an extra suitcase for medical items. Then we had the two older boys take their backpacks with travel stuff – snacks, activity books, reading books, etc, as carry on bags.

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A Slice of Happiness

It’s been a long five months. A very, very long, difficult five months. June feels like forever ago. Colten’s surgery feels like forever ago. It’s been rough – I won’t lie about that. This was a huge surgery and we knew it would be rough. While Colten appeared to recover with relative ease (except for that damn blood clot and a lot of medical anxiety/PTSD), the aftermath of surgery took a toll on us. We went back to square one with his bowel routine and it took months to get the solution back to working – we continue to have issues even now. That was somewhat expected, but still so frustrating. And messy. We also ended up having to do more shots for his blood clot than we expected, and instead of getting easier, it got harder. He was so tired of them. I hated giving them.


Without divulging much else, I’ll just leave at this – the past five months have been an experience we would prefer not to relive and we are glad that what seems like the worst is all behind us. We still feel we made the best decision for him, his care, and his future – it just has been exhausting. He still feels positively about the outcomes, except for the regularly occurring accidents of course.

[Sidenote: The pictures in this blog post have nothing to do with the content, but it’s always more fun to see pictures than not, and these were some cute ones from the past few months!]

Add into those five months the entire rest of our lives still going on… My work ramps up in the fall big time and I’ve had three week-long, out-of-state trips for work, managing conventions and exhibition shows. That puts a totally different spin on our lives during those weeks, and changes Colten’s care a bit to accommodate for me not being there every day. School started for the boys back in September of course, and that brought with it some interesting meetings with our school district in regards to appropriate care for Colten while he’s in school. Our older two boys are in cub scouts – Richard is the cub master and I’m a co-den leader…and we run the popcorn sales for the pack (over $48,000 in sales this year!!!). And lastly, our kids’ school fundraiser runs the entire month of October and the chairperson for that is, you guessed it… me. The community did an amazing job and raised $21,000+ for our little school – I’m in awe of how well they did but very thankful that is done for the year. It’s a lot of work every single day in October at an already incredibly busy time of year.

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Maybe we need to do less. Maybe we need to say “no” more often. Maybe we need to be less busy. But right now, this is life, and life with four kids with two working parents who enjoy being involved in the school/community is just busy. But busy turns into stress and stress is the part that can hurt. As we come to an end on all of this crazy fall stuff – my conventions are over for the year, popcorn sales are done, the fundraiser is over… we are finally starting to breath again. Just in time for holidays, right?!


In the midst of all this, as I carted children place to place, or drove to meetings, I kept hearing on the radio about Jay’s Juniors. If you are from the east side of Michigan and listen to 100.3 WNIC, you may be familiar with this program. Each year for the past four years or so, they take kids that have terminal illnesses, extensive medical needs, and/or physical disabilities, and send these kids with their entire families to Disney. Entirely for free. Richard and I comment every year about this program because every year we get a bit teary-eyed listening to these stories. Mostly because it pulls at our heart strings. Partly because we get it and it hurts when you have a kid that has to go through all this and it’s amazing that there are people in this world that offer these types of things to families that go through so much to help and care for their children and fight for their children.


This year, as I listened and heard the ad over and over, I thought to myself, I know quite a few kids that I could nominate for this. I kept telling myself to go online and get the application – how cool would it be to nominate one of these kids we know and have them surprised with something like this?! So I did. I went online, pulled the application, and read through it. But I could not nominate the other children. You have to nominate your OWN kid, sign the waivers, provide detailed information only a family would be privy to. I sat and stared at the application for a while. It felt funny to nominate Colten for something like this – not because HE doesn’t deserve it, but I felt like our family didn’t need this as much as some other family might. So I tucked it away.


A week or so later, I continued to hear the radio announcement just about every time I was in the car. I kept thinking about our summer. I kept thinking about the past five years since this boy was born. Nine surgeries – a major spinal surgery, two brain surgeries, urology surgeries, two bilateral eat tube surgeries plus adenoid removal, a major reconstruction and rerouting surgery of his entire bladder and bowel systems. Therapy after therapy after therapy. Braces that he’ll wear for the rest of his life. Bathroom experiences every single day that no child should ever have to go through. Almost 100 injections over the summer. More medical appointments than even I can handle some weeks, let alone him. I don’t know how this kid does it. I don’t know how he stays so awesome, happy, smiley, precocious, friendly, caring and genuine.


So after talking through it with Richard, we realized that if we felt Colten deserved it, we should nominate him. If the contest people didn’t feel that his experiences warranted such a trip/prize, then they wouldn’t pick him. So I submitted a nomination for Colten.

On Tuesday, 10/31, I got a phone call from Jay Towers himself. They picked Colten and we’re going to Disney!!!

[ See the radio release online. ]

[ LISTEN (new link) to the audio from our Facebook Live post this morning. ]

During the call they asked me more about him, more about Spina Bifida, and then invited our family to Disney this December. That phone call was so overwhelmingly emotional to take, AND I COULD NOT TELL ANYONE except Richard and our kids. But I couldn’t tell our kids because I know they wouldn’t keep it a secret…so it was just Richard and I holding onto this amazing news. We are incredibly excited for Colten – and all our kids – to experience Disney this way. WNIC and the sponsoring parties pay for our entire family’s airfare, hotel accommodations, park tickets, dining, and even provide spending money.


There is still a big part of me that feels like someone else deserves this more – but then I look at this kid and what’s he gone through and how much he has overcome, and I’m glad he gets this massive slice of fun and happiness coming his way. He deserves it. And I look at what his siblings have learned and been through along the way. They deserve it, too. So thank you, Jay Towers and crew, for putting together this opportunity. Thank you WNIC and all the sponsoring organizations that help make this type of experience a reality for families!

Our kids don’t know much about Disney – when they hear Florida, they think of their great aunt that lives there and LegoLand. So Richard put together a little video that allowed us to give them some sneak peeks into what Disney is and let them know we’re going…


I recorded their reaction, but it was really a non-reaction. There were no children jumping up and down, no smiles, hugs, tears or screams. More like blank stares. Our children have NO IDEA what a Disney Theme Park is – which kind of makes this crazy cool because they’ll be overwhelmingly excited to get there! They know characters and movies of course, but just have no frame of reference for what “going to Disney” means. We have since showed them some videos of parks and hotels, etc… And now they are VERY excited and have tons of things they’ve seen on the videos that they want to do. So in less than a month, we’ll be off!

30 Days Post-Op

We are still here, we are still home – for a few more days at least. Colten has done pretty well recovering since we got home. He’s taking his injections like a CHAMP – no need for a second person to even hold him down or keep him from hitting me. I really wasn’t sure I would be able to do this after our first couple days home because it was just pure overwhelming – he hated the shots, he hated the meds (and threw them up a couple times), he couldn’t move himself anywhere, and we went from a quiet hospital room of just us two to our bustling home with all six in our family.

Two weeks later though, we are in a pretty good place (that will all get disrupted Wednesday). As I said, his shots are going quite well finally. He takes his oral medicine with ice cream now. Not my ideal method, but he has continued to lose weight (one pound this past week, two pounds after discharge). He’s down five (5) pounds total since he was initially admitted, before surgery. He is struggling to regain his full eating habits and I’m struggling with feeding a kid ice cream just to get him to keep his weight.


We are on a constant mission to get him to consume enough liquids to flush his system and keep him hydrated – along with getting him to eat enough protein and fat. All the other stuff we need to do to care for him now is going well. Home visits from the nurse have all been positive (minus the weight loss) – incisions and stomas look great! We finally switched to a different type of drain bag that is smaller and can strap to his leg and this gave him quite a bit more independence (perceived and real). He’s finally walking SOME around the house. Today has been quite an off day though and he’s refusing to walk anywhere. When his aunts were here earlier, one of them had way more sympathy for him than I did. Lucky for him 😉

(Eating some homemade pumpkin pie from Cousin Pat.)


Wednesday we go in for the second part of this surgery which is definitely easier than the first part!! The surgery should be less than two hours. We should expect to be in the hospital through Friday. Then we are home! Our road is far from over at that point – and in fact, our lives will then be lived in two-hour blocks with him as his bladder learns to adjust without a constant drain. This two-hour window, in time, will hopefully become a four-hour window. Only time and his body will tell though. Once the tubes are removed though (on Wednesday), he is free to swim, free from drains/tubes, and will be much less sensitive to touch around his belly (hopefully).

(This picture was the first shot he took without screaming and having someone hold him down.)


I know I can never say this enough – so I’ll say it again. Thank you! Thank you to those of you that sent food, came to visit, mailed cards, sent gifts, delivered goodies, texted, called, cut our lawn, watched our kids, gave us a hug, had a drink with us, and on and on and on. It’s always an awkward position to be put in when people bestow some of these things upon your family and child, so if we’ve been caught off guard or in the moment, our responses might not always be the best. Often we’re quite emotional about it inside and not sure how to react. Thank you though. Thank you from the bottom of our hearts. And thank you to all of reading along and following. Your support is much appreciated and we can tell how much this little boy is loved and we hope it’s something that carries with him for his entire life!