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Do you shop at Amazon.com or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi, Ramya and Deena's link and pass it on... every order helps! http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20

Monday, November 6, 2017

Deena's New Adaptive Bike

Deena was granted her very own adaptive, hand-pedaled bike through Athletes Helping Athletes and Roadunner Sports.  She was SO excited to be able to ride with her sisters and have independence.  Anyone who knows Deena also knows she's a bit of a daredevil and she LOVES to go fast.  After talking in length to her physical therapist and her orthopedic surgeon, we decided to go with a hand-pedaled bike.  Though her rods have made her legs beautifully straight and so much stronger, we know that more breaks are in her future.  Since most of her breaks are in her legs, a hand-pedale bike will give her the freedom to ride even if she's in a cast.  We also liked the tricycle type wheel style for added stability and safety, so we ended up with an Invacare bike, just like her sisters have.

Deena's bike came the day before her last rodding surgery, and she couldn't wait to heal enough for a ride.  Between the heat and vacation it took a bit to get her out and on the road, but we've been out for a few rides now and she really is loving it.  It's such an enormous blessing to be able to have ALL of our children out, riding together, and just being kids!



We just want to say a HUGE "thank you" to Roadrunner Sports, their Athletes Helping Athletes foundation, and everyone who donates to their fundraisers.  You have impacted our children's lives immensely and we are SO thankful!




Sunday, November 5, 2017

And Now for the Fun

We came home from vacation to a big flurry of appointments, laundry, and therapy while we played catch-up from being gone.  Life has pretty much settled back down (as much as it ever settles), so I wanted to make sure to check in and post photos from our vacation.

Right before we left, Deena had an appointment with Dr. Vincent, her orthopedic surgeon, for a final surgery follow-up.  He said her leg was healing beautifully, she was cleared for all regular activity, and (barring any emergencies) we don't need to follow up for 6 months!  It's so exciting!  It was nice to be able to head out for vacation with a clean bill of health.

First up on vacation was Disneyland and California Adventure, of course.  We contemplate not going every year, because of the cost, but the kids love it so much and we always seem to end up there.  The parks were packed and a bit difficult to navigate, but it didn't stop us from having a blast.  There were multiple times I had to make a human blockade around Deena to keep people from bumping her, but we managed and it was totally worth it.  The girls favorite part was getting the princesses autographs and riding Dumbo, It's a Small World, Radiator Springs Racers, and the Haunted Mansion.  Conner loved all the fast stuff, with Guardians of the Galaxy being a favorite this year.  Here are some of my favorite pictures from the parks this year:




















After spending a few days at the parks, we headed over to Carlsbad and spent a week on the beach.  It was exactly what we needed; time to relax and recuperate, with no agenda.  We found a really nice, clean beach that had two beach wheelchairs, and the girls had a blast being out in the water.  Conner spent most of his time boogie boarding and couldn't have been happier.  We also spent time with my birth mom and her husband, as well as my birth dad and his wife.  It was really nice to get to see everyone, and the kids really loved visiting.  They have so many people who love them; we are so blessed!  We also spent part of a day at SeaWorld because they had their kids-go-free in October deal going on, and Ramya's been asking to go.  It was nice and slow, so it was pretty relaxing even though it was another park.  The kiddos all had a blast, and their favorite part, hands-down, was putting their hands in the tank with the fish that clean you.  They crack me up!!  We probably could have used another week on the beach, but we are so thankful for the time that we had.   









(This is Deena's face when she is "not cold")







Though there were a few bumps in the road with hotel issues and the crowds, we found most places to be really accommodating.  We are so glad we got some time away to re-connect and relax.  I have a lot more  "life stuff" to share, but the rest will have to wait.  Thank you for checking it!


Tuesday, October 24, 2017

An Update from our Holiday Inn Experience

I just heard from the IHG corporate office and wanted to update those of you who are following our story.

The gentleman I spoke to on the phone had read my previous blog post and addressed my concerns about our recent stay.  He was apologetic and corrected the issues that we had.  IHG has agreed to..


  1. Give us a partial credit to our account so that we are charged in accordance to the rooms that we actually stayed in, as well as what the front end manager had offered us when we were moved (to pay for one room, not two).
  2. Credited our rewards card with bonus points towards a future stay.
  3. Most importantly, they will be updating the website for that specific Holiday Inn (the Holiday Inn and Suites in Anaheim by Disneyland) to reflect that the section of the hotel with their themed suites does NOT have elevator access.  

Though we will not stay at that specific Holiday Inn again, due to the assistant general manager and her treatment towards us/our situation, I am satisfied with the follow-up that we received from Corporate, and I am thankful that they are going to take steps towards making sure this does not happen to other Holiday Inn guests.

Though this incident was stressful and time-consuming, we still had a good vacation, and are still thankful for our time together.



Monday, October 16, 2017

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.






Sunday, October 1, 2017

Straight as Straight can be

Deena got her splint off and her leg looks AMAZING!  She was so excited to see how straight it was; we all were!  



The three things she was really missing were baths, using her own wheelchair (she was in a transport chair with an elevating leg rest), and wearing pants.  The first thing she did when she came home was take a bath.  I'm pretty sure she played in there for an hour.  She was on cloud 9!  

Deena is officially cleared for weight bearing as she feels able.  She's been up for short periods of time and has remained pain-free.  It's going to take a little time to regain her strength, but she's going great.  

Other than that, life's been chugging along.  We've had company 3 weekends in a row, which was nice.  Though we've made some great friends in Tucson, the kids have been missing their Phoenix friends.  They enjoyed all the extra time with some of their best friends.  


The weather has cooled down a bit and we are loving the time outdoors.  Deena was grated a bike through Athletes Helping Athletes (more on that to come), so we are officially able to bike ride as a family, which is amazing!  


Deena just got her latest round of pamidronate and is doing great, with minimal side-effects.  She gets stronger and stronger every day.  We have a great nurse through Preferred who lets Deena help, which we are thankful for.  Deena wants to be a vet when she grows up, and I can totally see it.  She's such a smart girl!



Oh, and a few weeks back there were therapy ponies at the Children's Clinic.  Not only did the girls get to lead them around, but the ponies also wore tiny build-a-bear sparkly pink shoes.  It really doesn't get any better than that.  Life is good and we are so incredibly blessed!