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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, October 16, 2017

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

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!




Sunday, August 27, 2017

A Quick Deena Update

Deena's surgery went well, and we are so thankful!!  It ended up being right about 3 hours, which was a little longer than I expected.  Her orthopedic surgeon spent a little extra time making sure her rod was in just right, so it was a good reason for it to run over. 

We were able to get the anesthesiologist we love, and we were grateful for that.  She's wonderful with Deena and has been there for most recent surgeries, including her dental surgery.  She lets me go in and sing Deena to sleep, which we really appreciate.  I missed so much in her early years, and it means a lot to be able to be there for her now.



The rod looks great and she is healing really quickly.  We were in the hospital for about 24 hours, but Deena was anxious to get home and did much better once we were discharged and she could be with the rest of the family.  




The kiddos wanted to paint rocks to give to our neighbors and it was the perfect down-town activity for Deena.  We left them by our mailboxes and all of our rocks found new homes.  Some of our neighbors even wrote the kids "thank you" notes, which was really sweet.  The kids really enjoyed it.



We also got out on Monday to view the eclipse.  We made viewing boxes and had a lot of fun learning about the eclipse.




We're back to homeschooling and getting back in our groove again.  It feels good to be all moved in, settled, and getting back in to a routine.  Life is good!











Thursday, August 17, 2017

Surgery is Set for Tomorrow

Little Missy's surgery is all set for tomorrow morning at 10.  We are all excited about getting her last rod in place.  Please pray for a smooth surgery, quick recovery, minimal pain, and no seizures for Madi while I'm gone in the hospital with Deena.  Thank you!!


Sunday, August 13, 2017

We are Alive and Well

Wow, I can't believe it's been so long since I've updated!  I just wanted to pop on and say that we are alive and well.  We've had a ton going on, but things are great!  I'll highlight all of the "big" stuff and try my best to catch everyone up.

House:
Our rental house in Tucson was having problem after problem.  We had multiple leaks, found mold in many different areas, had remediation multiple times, and just kept having more and more issues.  The issues kept just getting band-aid fixed, and we got tired of having the same issues over and over.  We finally decided it was best to move and purchase a house of our own.  We moved in May and are loving it!  I underestimated how much work it would be to pack up (again), move with 4 kids, homeschool, and settle.  The house we moved into also had no storage, not even a pantry (technically there was a pantry, just no shelves), and we downsized from our rental.  There were many projects we had to do in order to make it work for us, and we were crazy busy, but it was worth it.  We are all settled now and it feels great.

The house we found is in a quiet little neighborhood.  The roads are nice and flat, allowing the girls to walks and bike ride safely.  It backs up to the riverwalk, giving us miles and miles of paved biking paths to ride on.  Our house has three stories, but also has an elevator.  The kiddos, of course, think that part is amazing.  It's a patio home, so all of the houses are super close together, but we like our neighbors and are enjoying less maintenance and upkeep.  There's also a community pool, park, and dog park, so there's plenty to do.  It's pretty wonderful!



Puppy:
The day after we moved, our new puppy, Chewbacca, aka Chewie, came home.  We were expecting him not to come home for a few more weeks, when he was a little older, but his siblings were all getting picked up and we didn't want him to be alone.  Getting a puppy the day after we moved was crazy (and tiring), but he's a great dog and we love him so much!  He's a double doodle, so he's a labordoodle/goldendoodle mix.  We found a great trainer and are working towards training him to be a service dog.  Even though he is only 4 months old, he's doing great.  He is such a smart boy, and we can't wait to see everything we are able to teach him.  He just got his service-dog-in-training vest and has been going out with us to work on exposing him to as many different places and situations that we can while he's little.  We are having  a lot of fun with him.





Deena Update:
Deena had dental surgery and it went great.  They successfully removed all of the teeth they couldn't save, filled all her cavities, and put in a spacer to maintain the gaps in her mouth.  She came home afterward and was back to her normal, spunky self.  She's amazing!  

Unfortunately Deena had another break.  Her left tibia got a stress fracture at therapy on Thursday.  Thankfully we already had an appointment that day scheduled with her orthopedic surgeon.  They were able to take her early, so we left therapy and went straight for x-rays.  The fracture occurred on her last curved bone that wasn't yet rodded.  We knew it needed rodding, but were giving her the summer to swim and play before straightening it.  It had started bothering her a little here and there, but she was her normal, spunky self.  She was still wanting to bear weight on it too.  We think that it had started to crack under the pressure, because it was so weak, and Thursday it just gave away.  The doctor splinted her and then said we could either push up surgery, or he could heal the bone and we could wait on surgery a bit longer.  We decided it would be best to just go ahead and rod her as quickly as possible.  This way she can heal from the surgery and the fracture at the same time, getting her back to normal quicker.  He also said she would likely fracture again because the bone will be even more curved after this fracture.  We want to minimize her breaks as much as we are able to, so this was another big deciding factor.  Right now we are aiming for surgery Tuesday, but it will depend on whether or not we can get in a rod from Canada in time.  The company said we are able to, but we are waiting on the hospital to approve it all.  If Tuesday doesn't work, it will be Friday.  She's ready and is excited to see how straight her leg is afterward.

Here's a cute video of Deena and Chewie the morning before the fracture....

video

Deena was also granted a bike of her own through Athlete's Helping Athletes.  It should come in about a week or so and she couldn't be more excited!  She has been wanting a bike of her own for so long;  it will be such a blessing!!

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The other kiddos are doing great and are loving our new house and neighborhood.  The move was hard on Ramya emotionally, but she's settling in now and has been a lot more confident and talkative, which is great to see.  We've started homeschooling again and it's nice to be back in a routine.   They are all enjoying our new activities, especially the science experiments and art projects.  I think that's all the big "stuff" for now. Thanks for checking in, and hopefully it won't be so long before I post again!

Sunday, April 2, 2017

A Quick Update on Madi and a Prayer Request for Deena

For those of you who are our friends on Facebook, you may have seen that Madi was in the hospital this weekend.  On Friday she woke up seizing, but it wasn't a typical series of seizures for her.  After maxing her out on her rescue med, I called 911 and asked to be taken to the hospital.  She was awake the whole time, but I think she was hallucinating because she kept talking about seeing Sponge Bob and skeletons; two things she never talks about or watches on TV.  At the hospital she had another seizure are required IV meds to stop it.  After that she finally fell asleep and I knew that the worst had passed.  We had to change rooms because they were understaffed and were moving everyone over to the adult ED section, but she slept through all of that, thankfully.

While we were at the hospital they ran tests to try and see why she had a seizure.  Her shunt series came back just fine, her urine looked great, but they came back and said her blood work looked terrible.  Her white and red counts, as well as her platelets, were very low.  They told me they needed to transfer me to another hospital so that she could see a hematologist and prepared me for the fact that she might need a platelet transplant.

They let me transfer with her, so I was very thankful for that.  This is the first ambulance ride she remembers, and she was pretty excited, but also nervous and wanted me to hold her hand the whole time.  I'm thankful I was able to be there to do that for her.  

At the next hospital the brought us directly to the PICU.  We were put in a room with a nurse that already new Madi, and she was really sweet with her.  You could see in her eyes, though, that she was worried for her and what news might be headed our way.  They sent the hematologist to talk to me.  She started using words like "leukemia" and "cancer" and we were starting to get worried.  They wanted to re-run her tests to get a baseline there.  Thankfully they were able to use the ultrasound machine to find a vein in her leg, so the blood draw didn't bother her at all.  Normally it is very traumatic and upsetting for her.  

After a long day of waiting, they got her blood test results back.  Everything looked perfect.  Not one thing was low.  They transferred us to the hematologist unit and out of the PICU and the doctor came to talk with us again.  They basically said that they couldn't believe the blood work was from the same child.  The doctor did say she has seen this happen one other time, where things went from looking terrible to looking just fine.  She said she wasn't sure what happened, but we were all so relieved.  God is watching out for our sweet girl for sure.  We stayed overnight for monitoring but were discharged the next morning.

It was a crazy and stressful whirlwind, but we are so glad to be home as a family again.  Madi is back to her normal, spunky self, and we couldn't be more thankful!



Next up... Deena!  Sweet Deena has dental surgery tomorrow.  She's needed it for months but this is the first opening her dentist had available and we are thankful the time has come.  She came home from India with some rotten teeth, lots of cavities, and a special little mouth that's missing most of her adult teeth.  In addition to having OI (osteogenesis imperfecta), she also had DI ( Dentinogenesis Imperfecta).  Tomorrow they will pull some of the teeth that are beyond saving, repair those that can be repaired, and cap those that can be saved with a cap.  The surgery should last about 1 1/2 hours and should be outpatient if all goes as planned.  The long term plan is to keep her teeth as healthy as possible, going to partial dentures when needed.  Please be praying for a safe surgery and fast recovery.

Thank you!!







     

Sunday, March 26, 2017

We're on the Move Again

Due to an unplanned series of events, it looks like we are moving!  We didn't think it would be this soon, but here we are.  We are excited to settle down (again); this time in a place of our own. 

We have found old leaks and mold in our rental house multiple times (4 now??), and the house is currently getting remediated.  Though we have a lease through December, the owners are really wanting to sell the house and be done with it.  We've been living out of half of the house for a while now because of all the issues, so we are ready to move on as well.  We've been crazy busy, looking at houses any free moment we had. 

It was very difficult to find a house that would work for us because we have so many limitations due to area, house size, needing a flat street, etc....  Tucson is very hilly, and most houses have multiple steps and/or steep driveways.  We finally found a house that we think will work out great for us.  It's 3 stories, but has a residential elevator.  It's in a small gated patio-home type community, but still offers a lot of privacy and great views.  They yard is small, but there's also plenty of side and front yard, all that is private and not shared.  The roads outside are completely flat and great for walks and bike riding.  It backs up to the river walk and (about 25 miles of paved, flat biking roads), and has two private entrances.  The path is amazing for the kiddos to bike on and is going to be great for us.  There's also a community park, two dog parks, and a pool.  The downsides are how close together all of the houses are, the fact that my van won't fit in the garage, and the fact that we really need that elevator working.  Residential elevators tend to go down often, so we will need to be careful to get it serviced often since we will use it so much.  We may also get a chair lift from the first floor to the second floor, just for a back-up plan. 








We have a 45 day closing so it looks like we will be moving in May.  The next 45 days are going to be filled with packing, packing, and more packing.  If you are close by and want to help us fill some boxes, we will be very grateful! 




In other news, we are getting a puppy!  My sister-in-law's sister just bred goldendoodles and momma pooch is due any day.  We didn't think it would work out because it was looking like we wouldn't be able to find a house in time, but now the timing looks just about perfect.  The kids are on cloud 9 and can't wait to have a dog again.  We hope to work on training it to be a service dog for the girls as well so that he/she can come with us wherever we go.  I need to find a company here to help us still, but we have some time before we need to have one.  Here's a picture of the dad and mom...


Other than that, life has been chugging along.  We spent a long weekend with David's parents in California and had a lot of fun. 



Deena has had her cast off for a bit and her leg is healing well after her rodding surgery.  Dr. Vincent took it off about 3 1/2 weeks post-op after she gave her word to take it easy, since technically it was still broken from surgery.  She kept her word and has been doing well.  He just said she can work on weigh-bearing now and she is very excited.  The girls are playing on an adaptive baseball team and are proud to be MuckDogs. 



Ramya turned 10 at the beginning of March.  She requested a movie and cake with family, so we went to see Rock Dog with mine and David's family, then went to lunch at Smashburger and had cake.  It was a simple party, but she really enjoyed it.  We love celebrating her!


Other than that, life has been chugging along.  We will keep everyone updated on our big move.  Please be praying for a quick close and for Ramya, as she does not do well with change and is already having a lot of regression and big behaviors as we prepare to move.  Thank you!