An Upsetting Experience at Holiday Inn Anaheim Suites by Disneyland and a Warning for Families Needing Elevators

Here's a link to their response and an update...  http://www.aworthyjourney.com/2017/10/an-update-from-our-holiday-inn.html

First off, let me start by saying we are on vacation!  YES!  We were all ready for a break from the craziness of life, and were so excited about our yearly trip to California and Disneyland.

Unfortunately we've had a pretty bad experience, and for the sake of families that come after us, I feel like we need to share.  Things like this shouldn't happen, period.

Finding a hotel was interesting.  We had a close family friend joining us, and finding a hotel room to accommodate 7, that was also within walking distance of Disneyland, was quite the feat.  I was SO excited to find a 2 bedroom, 2 bathroom suite with a living room area and pull-out couch at the Holiday Inn and Suites in Anaheim, half a mile from Disneyland.  With our "extra" potty stuff with the girls, and having an extra adult, I knew one bathroom wouldn't be enough, and we also needed a room with enough beds to fit our family, plus our friend who needed her own space.  It was out of our price range, but perfect for our situation, so we decided to splurge and get what would meet our needs.

Wednesday morning we left for California.  When we finally went to check in, after driving 8 hours to get there, we realized there was NO ELEVATOR to our section of rooms, and we were on the second floor.  There were elevators to every other part of the hotel, except for to ours, even though the website clearly stated there were elevators, and gave no exceptions to this fact, even when booking the room.

Now, let me just say, I did not reserve an accessible room, because it was not needed.  Based on the photos of our room and the website description, an accessible room wasn't necessary.  I still lift the girls on and off of the potty anyhow, and the room had a shower that the girls could scoot right in, so no additional accessibility was needed for us.  All that we needed to be able to do was to get up to our room.  The website clearly stated they had elevators and were accessible, and DID NOT state anywhere that these particular rooms were not accessible by elevator, so I honestly thought things would be smooth and we would have no issues.

After spending some time getting out the girl's wheelchairs and looking for an elevator, we called the front desk confused.  That's when we were told that section had no elevator.  The front desk manager was apologetic and felt really bad.  She spent some time trying to find us an alternative room.  At first, she offered us a one bedroom room with two queen beds and one bathroom (aka one standard room).  I informed her that we would not be able to fit in a room like that, and additionally, because we had 3 adults and 4 kids, it would be a fire hazard.  Next she offered to put us in two separate standard rooms with a conjoining door.  She said that we would only pay for one room, and then they would switch us to a two-bedroom suite on Friday when they were able.  I told her that we would be at Disneyland, but they offered to move our luggage, so we agreed to that arrangement.  She was apologetic and tried to help.  They helped us get our luggage settled in the alternative rooms, which ended up being down the hall from each other, not conjoining.  It was late by that point (almost 9pm), this whole ordeal had taken almost an hour to fix, the kids were tired and hungry, Conner was crying because he had to be down the hall with our friend and not right next to us (I needed the girls with me due to potty issues, and it wouldn't have been appropriate for David to stay with our friend.  Conner loves her and feels comfortable with her, she's like family to us, but he was expecting to be in a connecting room), so even though the situation was frustrating, we were glad to finally be settled and be able to feed the kiddos and put away our things so we could go to Disneyland the next morning.  

On Friday, they moved our rooms for us, and we were SO thankful to finally be in the right room and have enough room.  The other rooms were cramped, not designed well for our girls, the bathroom was so tiny the door hit the toilet when we opened it, there were bugs, and overall, it wasn't the best experience.  

The rooms the put us in (two standard rooms with two queen beds each)...

Here's some photos of the suite, for comparison reasons.  This is what we were able to stay in the last two nights, and what we were expecting to stay in the entire time (except we had booked a pirate theme, but the room layout was supposed to be the same).  Obviously there is just no comparison, and we shouldn't be paying the price of this room for the nights we couldn't stay in it, because there's clearly no comparison in size or quality)

Bathroom #1

Bathroom #2

Living room with pull out couch

 One of the two bedrooms (with doors for privacy)

On Sunday, we went to check out.  We were shocked by our bill.  Yes, we were charged for one room, but they charged us for the two bedroom suite the ENTIRE TIME, even though we couldn't stay in it Wednesday night or Thursday night because there was no elevator access.  David talked to the front desk manager, and she told him that she had no power to adjust rates, even though she is the one who originally told us we would only pay for one room, and that we would need to talk to the assistant general manager.  I went back, upset, telling her that this is NOT what we agreed to, and that it was not our fault there were no elevators.  If there were going to be no elevators, they needed to CLEARLY state that on their website, which of course they did not.  Had they disclosed that fact,  or if they had elevators to each section of the hotel, like it sounded like they did, we would not have had an issue to begin with.  I was upset (I was raising my voice at this point, which I feel bad about, but it was just the icing on the cake for me.  We work SO hard at advocating every single day, and sometimes, the fight gets the best of me and I just want a chance to relax.  I just want to be able to book a hotel, stay in it, and not have to fight.  Not to mention I was exhausted from cramming a bunch of therapy and doctor's appointments in before the trip, had multiple late nights prepping, multiple consuming phone calls that had to be made before we left, bills that had to be paid, a seizure/ambulance ride/ER visit we had a week before the trip for Madi, packing all the regular stuff, in addition to all the meds, oxygen, urinary supplies, etc..., and everything else that goes in to  being able to take my family on vacation (don't worry... it's all worth it)), but was told, again, that we needed to talk to the general manager.

After leaving I was still upset at how the situation was handled, and how we were completely misled when they said we would only pay for one room.  We thought the room we would be paying for would be the one we actually stayed in, which was at least $200 less a night.  According to them, however, they appropriately accommodated us by moving us, and "did us a favor" by only charging us for the suite, since according to them it was our fault for not calling in advance to notify them that we would need an elevator.  Wow. Even though they gave us two rooms it was still not comparable, because it lacked the extra living room area that the suite had, and the extra large bathroom we needed for our girls.   After this, I called and filed a complaint with guest relations.  I was told this should not have happened and that they would get back to me by the next day.

Today I still hadn't heard from them, so I called and talked to the assistant manager at the hotel.  She was so terrible to deal with.  Mean, uncaring, and just plain harsh.  First she said that they took the suite price and split in in to two rooms.  The problem with that, though, is two rooms is STILL cheaper than the price of the suite.  Then she said they only charged us for one room and comped the other one.  I said that charging us for the suite as the room for two nights when we didn't stay in it was not ok.  The suite is far more expensive than a standard room.

The assistant general manager said it was my fault because they are ADA compliant and I should have told them I needed an elevator.  I told her that their website stated there were elevators, and NO WHERE did it state that the suites did not have elevator access, but she didn't care.  She also tried to tell me we checked in at 5pm, and I informed her that she was completely wrong.  I called at 5:50 to let them know we would be checking in late.  I have proof on my phone.  When I told her, she just sat silently.  She tried to tell me that David originally agreed and that we had no problems until the day we checked out.  Of course he did.  He agreed to have a room comped for us, but they never ever informed us that they were still charging the suite rate for that one room, even though we couldn't stay there half the time.  Of course we didn't complain, because we didn't see the bill until we checked out.  How could we know??  This whole situation is just so wrong.  I had my husband call back and she was just as rude and harsh to him.  He told her that we were told a room would be comped and we would only pay for one room those first two nights, and she told him we were (because they charged for only one room..... the expensive suite we weren't in), and that she would not be adjusting the price.  After that he said we would keep moving up the line, and even contact media if we needed to, because this is just wrong.  She told him he didn't need to threaten her.  As if David has EVER threatened anyone in his entire life.  But the fact of the matter is, the way this is handled was not ok.

Here's my phone records.  The first call was informing them we would be checking in late.  The second was calling because we couldn't find accessible parking by our rooms and I needed to let them know I would have to double park, and the third was while I was talking to the desk manager, trying to work things out. 

And here's my photo of us attempting to unload and not being able to find the elevator.  You can see that it's dark, and the time on my camera, so it was clearly not 5pm.  Though, honestly, I'm not sure why that matters or why she attempted to argue that point with me.  It doesn't put an elevator in their hotel, or fix the situation.  

Though the guest relations personal told me that there was no decision yet, the assistant general manager told David that they knew I had posted on facebook about the issue (I posted on my personal page), that they were watching social media and knew everything, and that she had already talked to corporate and they were in agreement.  I really hope that's not the case.  I really pray they don't actually find this acceptable.  

The issue is, even if we were billed as they stated we would be, there is still a major problem here.  They should have to disclose that those rooms have no elevator access.  It should be very clearly marked.  They should not be able to state they have elevators, without stating that part of their hotel does not.  The assistant general manager should not be harsh and rude to her customers.   At this point, they can't fix how upsetting this has all been.  They can't fix that this had made our trip unnecessarily stressful.  They can't fix the anxiety they have put us through, or the hour we were waiting to get in a room, or the fact that my kids were starving and left waiting (I fed them snacks, of course, but we had planned on eating at the hotel restaurant with them, and by the time we got in our room, the restaurant was closed). They can't fix the inconvenience, or the bugs, or the ongoing issue this has become.  What they can do, though, is make right with what they offered us.  Most importantly, though, they can fix their website wording and description so this NEVER happens to another  family again.   

Life will go on for us.  We will still have a fun trip.  We will never return to Holiday Inn, but we won't let it ruin our time away with our kids.  I pray, though, that this never ruins any other family's trip.  Just because our girls use wheelchairs, doesn't mean we don't deserve the same accommodations as every other family, and the ability to chose which rooms work best for us.  We just need those rooms to have an elevator.  In this day and age, that shouldn't be asking too much.

We Made it to the Beach

Conner perked up this afternoon so we decided to pack up and head to the beach.  He said he would take it easy and not go belly boarding, but that didn't last too long.  Of course he made it in the water pretty quickly.  He had a blast, though, and is feeling much better.  The girls still only want their toes in the water, but they all enjoyed the ocean as well.  Deena took to playing in the sand right away and really enjoyed her first big beach trip.  I'm glad we were able to go! 

In the future, we need to look in to sand wheelchairs, but for now we are able to carry them to our spot, so that's what we do.  It'll keep us strong :). 

(See the little boy in the waves back there?)

She covered me with mud; thanks kid....

My feet are always happiest in the sand!

Running Away Day 2... California Adventure

Today was day 2 of our yearly vacation and we spent basically the whole day in California Adventure park.  It was crazy, crazy busy again, but we managed to get on most of the rides the kids were hoping to ride.  Keeping people from bumping in to Deena has been interesting, but with some gentle assertiveness and my protective shield (aka my arms) we have done ok.  People really don't watch for wheelchairs well, and Deena's is low to the ground, so that makes it challenging, especially when it's so crowded. 

Tomorrow is our last day here before we head to the beach.  The kiddos are pretty excited about our next phase of vacation as well.  Here are some photos from our fun day...

Conner, his friend Ethan, and his "cousin" Keegan

Rob gave Madi a Listerine strip right before the picture.  I told him she wouldn't like it, but somehow she ended up with it anyhow.  You can see how well that worked out for us...

These 3 are inseparable  

Deena and Aunt Adella (Adella and I sandwiched her in to keep her safe)

I usually don't let the girls wear makeup, unless we are just playing around with it.  When we do, though, I keep my red lipstick away from them.  Today I let them wear it (though Ramya didn't want to) because hey, it's vacation, it matched their cute dresses, and you only live once.  They were super excited.  I had to re-apply about 5 times.  They wanted a photo to remember what their lips looked like.

I thought we were going on the tires ride, but apparently it's now the singing cars.  The kids liked it anyhow.

Busy, Busy, Busy Bees

As usual, we have been keeping ourselves quite busy.  We've had quite a few appointments and have found lots of fun things to keep us from betting bored.  I'll update with medical first, and then get to the fun stuff.

Medical Updates:

Ramya and Madi had their first appointments with our new orthopedic surgeon, Dr. Vincent.  Both girls are doing really well and nothing big is needed right now.  Ramya is due for a small wheelchair and HKFO (Leg braces that go up to the back) adjustment.  She hasn't grown much, but just enough to need a small tune-up.  Ultimately we think Ramya will be able to use AFOs to walk, but her strength, leg muscles, and confidence isn't quite there yet.  The doctor asked if I would like to put her in AFOs (for therapy) and start using those instead of the HKFOs.  My gut tells me she's not quite ready, though.   She still has some major fears of falling we are working through and she still fatigues very quickly, but I asked if we could go ahead and get AFOs to start working with, but also keep up with her HKFOs for now also, so that we have options with her mobility and therapy. He agreed, and I got her fitted a few weeks back so those should be ready any time now. 

Madi has grown right out of her HKFOs and we have decided to try RGOs (reciprocating gate orthotics).  They will be similar to the HKFOs but a bit heavier and more sturdy.  Because they are heavier they should give her more support and keep the metal from bowing so much.  We chose not to use them when she was little because she was so tiny and we didn't want to add any extra weight to her leg braces, but we are hoping this will actually give her more stability and help her with her walking now that she is bigger.  She also got fitted a few weeks back so we should be getting them pretty soon. We are very lucky that Ron, our favorite orthotics maker at Hangar in Phoenix, has a brother here that owns Hangar in Tucson.  We were able to get in to see him and I know he will do a great job with the girl's orthotics.

Madi has also grown out of her current wheelchair so we will start working on getting her a new one.  She needs something lighter weight that moves with her better, so I'm looking in to different chairs for her.  I would love to get her a Box chair, but insurance does not usually cover them. That doesn't mean I won't fight for it, though ;). 

The kiddos had dentist appointments to get their teeth cleaned.  The dentist just told me she doesn't think she can help Deena, though, because she thinks she will have to go under anesthesia in the hospital for her dental work (she has multiple rotten/broken teeth and her poor mouth is a mess), so we are searching for a new dentist for her.  Dental is hard with OI because it's hard to find a good dentist that has any experience with kiddos with OI.  I have a few calls in, so we shall see.  Ramya's little mouth is a mess too.  She holds food in her mouth, didn't have dental care before coming home, used to grind her teeth really bad when she was mad, had adult teeth come in without loosing the baby teeth, had her 11 year old molars come in when she was 8, and her mouth is very very crowded.  We already pulled the baby teeth since they weren't budging and they were causing her a lot of gum pain (the grown up teeth were pushing forward and the gums were getting pinched between the two sets).  Next up is dealing with a cavity she has, getting her sealants repaired, and getting her in to an orthodontist to see about expanders.  I realllly wish we had dental insurance right about now.

Ramya started vision therapy, so now both Ramya and Conner are in vision therapy on Wendesdays.  Conner finished his first 8 weeks and has made huge strides, but still is reversing a lot of his letters.  We start a new 8-week round with him this week.  Ramya needs intensive one-on-one therapy, versus Conner's group therapy, because having a lack of visual stimulation when she was tiny lead to eye muscles not coordinating and working together correctly.   Her homework right now is to watch a show on the computer using special red and green filters and special glasses.  When she's having a hard day, I put on a calming video with calming music from youtube and it not only helps her with her emotions but it also helps her eyes, so it works out great.  I have to say, I also really wish we had vision insurance. 

Tonight Preferred Homecare delivered the medication and supplies for Deena's first PAM infusion at home.  She will get them quarterly to help with her bone density.  We are so so excited to see her bones get stronger!  Her first infusion was supposed to be tomorrow but they had staffing issues, so it is now on Thursday.  I'm praying they get the IV in quickly, on the first try, and that she doesn't have any major side effects from the infusion. 

The Fun Stuff....

Now for the fun stuff!!  We tried wheelchair tennis with JAWS and the kids really loved it!  Soon they will change to wheelchair basketball and the kids are excited about that too.  Med students from UofA come and play with the kids, and siblings are allowed to use chairs and play too if they would like.  Conner was in Heaven and had so much fun using a sports wheelchair too. 

We had friends from Sweden visiting in the US and they were able to make a stop in Tucson to meet with us.  Their son, Arven, was in Ramya's second orphanage with her (Ashraya).  Though Ramya does not remember her time in that orphanage very much and did not remember Arven, it meant so much to her to have that connection and get to see him.   Ramya moved so often between being in 3 orphanages and in and out of the hospital during her time in India.  I'm not sure if she just doesn't remember a lot of what happened, or if she has blocked it out, but I know she really longs for connections.  She doesn't remember her friend's names from India and doesn't remember her caretakers, even when we show her photos.  She will tell me she misses her friends, and of course I tell her that it's ok to miss her friends and that I know they were very special to her.  She can't recall any of their names, though, and will tell me the names of friends she has heard Deena talk about, but ones I know for a fact she never met.  Having special visitors was just what she needed!  Now she has a friend she can talk about and remember.  Arven and Conner hit it off right away and Arven ended up staying the night even though the rest of the family stayed in a nearby hotel.  The boys had a blast playing Minecraft together and have decided that we will meet up in two years in Disneyland for more fun.

One of David's brothers and his wife were in Phoenix for 4th of July weekend.  We decided to make a trip down to Phoenix to visit and had a lot of fun swimming and BBQing with family.  We had a fire pit (oh man was it HOT!!!) and Deena enjoyed her first s'more.  Deena also loved her first fireworks and is still talking about it.

Other than that, we are doing some light homeschool activities this summer but are not doing our full curriculum.  The kids have been enjoying extra crafts and science experiments.  We have also been swimming a lot and are happy to have a pool at our rental house.  Deena is like a little fish and has really taken to the water!

(our light up fairy jars)

(bouncing bubbles from our Sick Science kit)

(pendulum painting from Kiwi Crate)

One a personal note...

On a more personal note, it hit me yesterday that I miss having my friends close.  A while back I realized that I wasn't invited to many girl functions any more.  Between our unpredictable schedule, just being plain tired and not always feeling up to socializing, that fact that I stink at initiating things when we are busy, and the fact that I never feel comfortable going very far from home (in case I need to get back quickly for an emergency), I realized I said "no" to a lot of things, and soon wasn't on the invite list.  It was a hard realization to come to (I wrote a post about it if you would like to read it), but it made me even more thankful for the amazing friends that we have who are always there for us.  We were blessed with friends we could invite over last minute, even if our house wasn't perfect.  We were blessed with friends who brought us meals after hospital stays.  We had some really close friends that eat like us, also homeschooled, and had kiddos that our kiddos loved to play with, that we saw often.  I had girlfriends that God had gifted the ability to know when I just needed to talk, needed coffee, or needed a hug, and would always call or show up at just the right time, without ever being asked.  I had some close girlfriends who also had kids with special needs and who totally got it.  We had an amazing Church and homeschool community we were plugged in to as well.   Though I'm so thankful to still be able to talk to my friends on the phone and to visit with them when we go back to Phoenix, I'm starting to feel the distance between us.  I don't have any friends that live close any more, so I have no one to go out with for girl time.  I know I will get there and just need to give it more time.  I was so blessed, and am still blessed, with some amazing relationships and it will always mean so much to me.  We have started to make connections with other families and have enjoyed playdates and social events, so we are thankful for that, and it definitely helps.  We also found a Church we really like, so that's been great.  I'm also thankful for Social Media because it helps me feel connected.  Oh, and I also was given a really sweet letter and giftcards from a neighbor we lived next to for many years growing up.  God knew I needed a little encouragement, and it really meant so much.  A little kindness can truly make a big impact in someone life!

  

I think that's about all I have for now!  Please be praying for Deena's upcoming infusion and I will try to update in a more timely manner about it.  Thank you for following along in our journey and for all of your love and support!