Saturday, February 23, 2013

Disneyland - Extra Pictures

I have some extra pictures to post and wanted to make sure I got them in. These will be the last photos for our Disneyland trip. 4 posts for 2 days, I can't imagine how many posts we'll have from the make a wish trip...

Here we go:

 Hailey's School aid and I worked together to make Hailey these Disney Shirts. They really turned out GREAT!! Ms. Sallie helped with the embroidery and I did the iron ons.

 I loved how they turned out and we can even use them again when we go to Orlando! 
 Did you know that there is a place in Disneyland that you can buy a coffee for $2.99 and get FREE refills ALL DAY LONG?!?! Too bad I am not a coffee drinker. Inside you can also pick up these old fashion phones and listen to the Party Line. If you listen to the whole things it's really pretty funny. Long story short there is a lady calling the fire department because her barn is on fire and when the fire department asks for an address the lady keeps saying it's the only barn that's on fire in the small town. I told Josh to listen but he didn't have patients to hear the whole thing.

 One of my FAVORITE types of Candy....TAFFY!! It's the only thing that doesn't cost a fortune either.

 So happy after meeting the princesses. Josh was awesome enough to take Hailey back to the hotel to change a poopie diaper and let me go on Star Tours with my niece. It's her favorite ride. 
 I don't know if this bear is really carved out of real wood. Most likely not but if it was...HOLY cow. 
 I got a picture of this duck. They just wander the park and eat the dropped popcorn and such. I was hoping to spot a cat. Fun Fact: Did you know that Disneyland releases over 200 cats on to the park at night to help control the rodent population. I did see a cat but it was at Downtown Disney. 
 These are the Bear Brothers from Brave. They were voice activated to Merida when we met her.
 I really wanted to stay to watch Minnie's Fly Girls but they had LOUD jet airplane sounds that Freaked Hailey out. It sounded like a plane was going to land on you. 

 I thought this was cute. My Joshua won't wear Mickey Ears. So this is as close as we'll get. 
 I saw this and I HAD to have it. It's a Chocolate covered caramel coated Minnie Mouse Apple. It had marshmallows for ears and a chocolate bow. It was $10.00 but it was SO worth it. YUM!!!! They also had ones that looked that Jack from Nightmare before Christmas. It was cute but not as cute as this Minnie Mouse One! 
 Hailey's goodie bag from the boutique. They put a hair brush, and left over makeup in it. 

 Flo's V8 Cafe...So Cute!!
Inside the track of the ride that was closed.

I am so glad we were able to have these memories with Hailey and share them with you. Thank you to Sasha and Olivia for coming out and surprising us. Having you guys with us was so awesome. We know it wasn't easy or cheap. Thank you to everyone who bought Hugs for Hailey necklaces and helped us take Hailey to Disneyland. We appreciate it so much! Thanks to the cast members at Disneyland who helped us with what ever we needed and who also went above and beyond for our little girl. 


Friday, February 22, 2013

Disneyland - Bibbidi Bobbidi Boutique

A few hours after my sister and my niece got to Disneyland the girls had appointments at the Bibbidi Bobbidi Boutique. The gist of the place is that you get to get your hair, make up and nails done by a Fairy Godmother in Training. It's pretty cute. Again I was uncertain how this was going to go down. They couldn't have Hailey stay in her wheelchair so I put her on my lap and sat in the chair with her. We told her that we are going to get princess hair and right away she wanted her hair to be PINK. She's always wanted pink hair. She gets that from her Aunt Sasha.

 Olivia was very excited to become Merida!

So during my conversation with our Fairy Godmother in Training she had asked if we had done the boutique before. I had said no, that this was our trial run for our Make a Wish that we are doing in April. She had also asked if we saw the 2 newest princesses Rapunzel and Merida. They each have their own "Area/houses." I had said no the lines for those princesses are way to long and Hailey needs to be hooked up to her feed and have medication back at the hotel soon. Our Fairy Godmother had said that she would love to take the girls over for a special meet and great if we had time for that. I said we'd appreciate it. She took us over to see Rapunzel who was about to go on break first. 

 Hailey had just watched her movie the night before and was pretty excited to see her. Olivia had her stuffed Pasqual and he got in the picture too!

As this picture was being taken our Fairy Godmother started to cry. I gave her a hug and I said thank you for this! It means a lot to all of us. She said it was such a small thing but she was happy to do it. The smile Hailey had was thanks enough for her. 

 Merida was up next and she was a lot of fun! I loved her accent and her hair was amazing! LOL!! 
 Merida was really sweet with Hailey and took extra time with her!

 They had asked us if the girls could go meet Ariel, Cinderella, and Snow White before we left. Our answer, "OF COURSE!!"
This was amazing! Thank you to Hailey's Fairy Godmother for doing this for us. You have a place in our heart!

To be continued...

Thursday, February 21, 2013

Our Trip to Disneyland Part 2

We slept like a pile of rocks after our first day at the parks, but I still woke up extra early to get ready to go to Disneyland. This cookie was calling my name! I am such a sucker for a sugar cookie! I heart them! It was a no brainer this cookie was coming with me! 
 I was hoping today would be better with meeting characters. I had a hunch what might work and I took a gamble. I bought Hailey one of those autograph books and told her that we were going to see how Pluto and Mickey and all their friends write their names and then if they do a good job we'll take a picture with them to show her friends at school. I don't know if she was having a better day or she just bought what I had said but that stinking book WORKED!!!
The first characters we see are Mary Poppins and Bert. What kid under 10 knows Mary Poppins anymore? Hailey didn't, so I was sure she was going to freak, but she handed over her autograph book and they signed it, then Hailey SMILED for a picture. Yes, smiled!
 (Here, sign my book please)


I couldn't believe it! She loved that book and we took it everywhere we went. Our first stop was breakfast. Something that wasn't 90% sugar. I had gotten a phone call from my little sister saying that she and her daughter had drove the night before and were going to meet us in Disneyland. They were going to spend the WHOLE day with us! Hailey didn't know, but she was going to find out right now. 

Here they are sneaking up on us. Look at that smile on my nieces face. That smile made me so happy

We knew from experience that popular characters gather long lines so we decided that if we saw short lines we'd jump on those characters first. We walked passed Pixie Hollow and 2 of our favorite fairies were there. By the way if I didn't get directions on where Pixie Hollow was I would have NEVER found the place. First up, Periwinkle (she's tinkerbells sister)

Got to sign that book first! 

Now we are full of smiles! We are getting the hang of this now!
Next up was Vidia! Loved her purple hair and her attitude. It's all about Vidia and I loved how she was in character and talking about how great she is! LOL!

Our first ride all together was the Finding Nemo Submarine ride. This ride was pretty cool! It isn't very disabled child friendly though. Josh had to carry Hailey on his shoulder while going down a wet spiral staircase. I held my breath the whole time!
This is Darla or Dah-la from Finding Nemo. It's the only good picture I got in the submarine. It was pretty compact in there. Not for anyone who is claustrophobic.
Josh got this picture of the monorail in front of the Matterhorn. Did you know the Matterhorn has a half court basketball court built in for the mountain climbers that are taking a break! Fun Fact! I have lots of those!

Both my niece and Josh enjoyed a whirl on King Arthurs Carousel. Walt Disney's wife has her favorite horse on that carousel and that horse has a golden tooth! 

My little girl was having such a great time and she sure did deserve every single minute of it! We had yet another little surprise that turned into a very huge surprise for all of us later this day. That's coming up next!!

Wednesday, February 20, 2013

We're Going to Disneyland Part 1

We had received word that Hailey's Make a Wish will be in April. I had been wondering if traveling and doing Disney World would be too much for her and too much for just Josh and me to handle. We had wanted to take Hailey to Disneyland for a LONG time, but then we ended up spending month after month in hospitals and seeing Dr.s and it never happened. Josh and I both decided that getting away and giving Disneyland a trial run would be an awesome idea for the whole family. 

Packing for a trip like this was nerve wrecking! I had to remember Hailey's formula, her feeding pump, THE CHARGER, formula bags, Syringes, Medications. Enough medical supplies for the duration of our trip. I made notes and crossed off as I went but I still second guessed myself. It's in my blood to forget SOMETHING.

The car trip down there was an easy one but we still had to do our stops along the way to make sure Hailey was comfortable. We stopped in Victorville and walked the mall while we hooked Hailey up to feed and then give her meds. 

We figured out that the easiest place for us to stay would be at the Disney Grand Californian. It had easy access to the park and if we needed to go back to the room for anything we wouldn't have to take a shuttle. There was a lot that I expected staying at that Hotel that didn't happen but we didn't find this out until our first day at the park which wouldn't be until the next day. So after we checked in and settled into our room we took Hailey to Downtown Disney to take a look around. 

The first thing that caught our eye was the LEGO store. Not that Hailey would be able to play with any of the legos but we like seeing what can be created with a lot of little tiny plastic bricks. 

Woody and Buzz Lightyear larger then life! 

Belle and the Beast! 

Then we walked into the largest Disney Store I've ever seen! I had to be a block long! Josh took this picture and I LOVE it! 
It was getting pretty late and I knew we had a BIG day tomorrow so we headed back to our room. I had made reservations for Hailey to have "breakfast" with the princesses in Ariels Grotto at Disneyland California. The Hotel staff had informed us that there is an Early Magic Hour for Hotel guests that allows you into the parks at 9 instead of 10am. Tomorrow was Tuesday and Magic Hour was at Disneyland not at California and our reservation was at 9:30 at California. So...what do we do? I asked but NO one knew? It was like this was their first time ever being asked this question which boggled me since they do this every week right? So since we can't get into California until 10 but our reservation was at 9:30 we ended up having to ask at least 6 people how we can go about getting to where we need to be when we need to be there. Confused?
Since we have access to Disney California via our hotel I thought that we would be able to just walk in through there but they told us we had to go through Disneyland to get to California. It was a fiasco and a lot to type out but long story short we did end up walking to Disneyland then across to California then waiting for someone to figure out what we were suppose to do, then passing us off several times until we got to Ariel's Grotto.

 They didn't charge us for Hailey to eat because she wasn't able to but our first course was fruit, cheese, and pastries. Those Disneyland people can certainly get their food on. Everything was so yummy!

Josh and I shared this monster of a waffle. Then the princesses started coming out and it was like Hailey was seeing monsters or something. She freaked! Each time a princess arrived they sounded the horns and trumpets and announced the princess. Hailey was frightened repeatedly. As soon as I calmed her down the horns blew and the tears flowed...breakfast with the princesses was not the best idea.
Then I calmed her down and she got a button. The button made her happy. Then the horn blew and Sleeping Beauty came out...Tears

 Disneyland had the BEST hot chocolate I've ever had! So yummy! I made Hailey laugh by putting whipped cream on her nose:
 So even though Hailey cried 80% of the time a nice lady sitting next to us offered to take our picture as a family!

 So breakfast  was over and it was time to walk the park. I thought, "well, she didn't like princesses maybe she'll like the characters that she watches EVERYDAY." Nope!

 They had a couple of street shows and we saw one of her favorites. Phineas and Ferb! She loved it! Finally! 

 I knew that she would like this characters if she gave them a chance. She just didn't know what she was suppose to do with them so I told Josh to stand by Pluto and try and show her.

 Lucky for us it was the most perfect time to be at Disneyland. We didn't have to wait in any lines for rides. At Disney California there were more rides that Hailey was able to be transferred on. The "cast members" were extremely nice. They saw how much effort it was to get Hailey out of her chair and on the ride and offered for us to go on the 30 second ride again without having to wait in line. I could NOT have done this trip without Joshua. He lifted her every time. Hailey is 60 pounds now and it's not an easy task.

 A new part of Disney California was Cars Land. I knew Hailey would really love this! How'd I know...? In August of last year (2012) I had been potty training Hailey again for the 4th time. She was doing great though. Her last episode was in June but she was already walking and talking like nothing happened. She had pooped in the potty and for her big prize I gave her a mini Mater Pillow Pet.

She was happy!! We were seeing Mater live and in front of us. She couldn't stop staring at him! YAY!!
 We didn't get a photo up close with McQueen he was off "refilling his gas tank" so this is as close as we got:
 I LOVED Cars Land! All the details! Then they also had new rides. One of them was quite exciting. There was NO one at any of the other rides. They were ALL at the New Cars Land Ride, Radiator Springs Racers. The wait time in line was 150 minutes. Josh and I took turns in the single riders line and it took us each about 15 minutes to ride the ride and it was AWESOME! I loved it, even if I rode by myself.
Loved this!
 The Cozy Cone just like in the movie! 

So we were going to spend the rest of the day in Cars Land but then without prior knowledge we found out that there was going to be a private party in Hollywood Land (where the tower of terror is) and Cars Land. They would be closing the park for the party 3 hours before the park closed. They still charged you the same amount to be at the park but they were taking 3 hours away from you without telling you. That was crap...

Before they closed they had a parade that we were able to sit and enjoy! It was the Pixar Play Parade. All the Pixar characters!

 Roz from Monsters Inc. That was a fun ride also by the way.
 That baby from the Incredibles even caught it's hair on fire! LOL! 
 Crush from Nemo. They also had an attraction called Turtle time with Crush and Hailey enjoyed that!
 Dory from Nemo
 Jelly Fish Dancers.
 Heimlich from A Bugs Life. 
 BUZZ Lightyear! 
 This Army man shook our hand!
 Slinky Dog! 

Our first day was coming to an end and we were going to head back to the hotel. Disneyland was only open until 8:00pm. On our way back I took this picture and I really like it!

The morning started off pretty rough but it sure got better as the day went on. That was our first day and we had lots of fun! Tomorrow was going to be our Day at Disneyland and we were in for such a FUN SURPRISE!!!

Monday, February 11, 2013

Therapy at Home

I've said it before, but a reminder about our insurance...I have been trying to get Hailey Physical, Speech and Occupational therapy for MONTHS almost a year. Right now they will allow for 12 visits and that I pay for those 12 visits out of pocket until our deductible is met. Right now our deductible is $10,000 a year and Hailey is still pending Medicaid and I haven't heard anything about Katie Beckett. With Hailey's infusion services costing us $3,000 a month just to feed her we will reach that deductible soon, but I will still only have 12 visits of therapy available to me, which is NOT enough. No where NEAR enough. So I have been doing "therapy" at home. I know I have no formal training in this, but I can't sit here with her and not try.

For Speech we use these Oral Motor "Chewies" to try and work on her facial muscles. We try and blow bubbles and we have also experimented with pudding. I put a bit of pudding on her lips and try to get her to lick it off. Your tongue has to work in order for you to talk right? We also read Hailey's favorite books that I know she knows by heart and I encourage her to say the sound of the words that come next. The words she practices that most is mom, or I should say, "MOOOOOOOMMM!"

 For Occupational and Physical therapy I often group them together. First we do our stretches, which at first was a battle, but we have a system now. I compare different things and ask Hailey if she likes that item a lot (Big stretch arms up) or a little bit?

I will put Christmas bows on her head and encourage and help her to take them off. She LOVES this and thinks it's funny. When I first started this she could barely get her hand to her nose and when she did the spasms would kick in and she'd hit herself a lot. If I guide her that happens less, but I want her to try and get a hold on her muscles. She can now take her sunglasses off her face!!

 I purchased some RING crayons at Target on clearance for $0.30 a pack and I place them on her hands and we draw. She used to love writing H for Hailey so we practice our letters, shapes and colors.

Everyday we attempt to bare weight on Hailey's legs. We sit on a little chair and scoot to the edge until her feet touch the ground. Hailey is still unable to bare weight without assistance but I have gotten her to try every day. I hold her up under her arms and she attempts the walking motion of one foot then the other. I wish I could do it more with her but with me bending over to hold her up my back starts burning pretty quick. We weighed Hailey last week and she is at 61 pounds! Yes, 4 years old and 60+ pounds! Oy!

She doesn't like being on her stomach, mostly because she can't hold her head up off the ground and she gets really upset. I get nervous because if she does try to hold up her head and loses control I don't want her to hit her face on the floor. We use the boppy a lot to do tummy time. The iPad comes in handy when doing this. We've used the iPad to "Play Piano" and Hailey really likes that.

We finally got the rifton stander so that will help Hailey to put weight on her legs safely. I am fully aware that ever seeing Hailey walk again is probably never going to happen so I don't do these things with any expectations. I just want her to use what muscles she has. I think if she keeps trying to control her muscles maybe the spasms will decrease and she'll be in less pain. She's a tough cookie and as long as we do all these things as "playtime" she participates.

With insurance denying Hailey the therapies that she needs I feel like they are saying, "You're child has a terminal illness. She's not going to get better. Why would we pay for something that isn't going to make a difference?" Well I feel like it's going to make a difference and I will keep fighting them to give us more therapy and I will keep on working with Hailey on my own.