Monday, April 14, 2014

We've got a birthday coming up!!

Hailey's 6th birthday is just around the corner less then a month away!! I have been asking her what kind of birthday party she would like to have. Since we can't do bounce houses, playgrounds, or laser tag. I told her to pick her favorite character and we will have a fun family and friends party at our house. Speaking of house. We are in the process of a short selling our house, so I hope to have an idea of where we will be living before this party...

So Hailey and I sat down and looked at different character themes for a few days. At first she narrowed it down from 10 different ones to 4 favorites. The winner and theme for this years birthday party is....

You would think this child would be sick of DOCTORS, but I guess since that's the majority of what she knows, it's what she wants! So it shall be!

I have already reached out to all the major party suppliers asking if they would like to donate any party supplies but I've been rejected. It won't stop me, there are plenty of images online that are available for me to use and I even found a few things at the Dollar Store. This will be a very DIY party! One thing I can mark off my list is the birthday cake. I have been in contact with a wonderful local bakery who will be donating a grand dream cake to Hailey for her Birthday! I can't wait to see it and show you all. 

So in the mean time, I will start the guest list, update Hailey's Amazon wish list, get my scissors ready, and plan for a few late nights! It's going to be a lot of fun for my little girl and her friends. Let the countdown begin!! 



Friday, April 11, 2014

Michael Jordan Celebrity Invitational Event

Last weekend we were excited to be invited to attend the Michael Jordan Celebrity Invitational Golf Tournament at Shadow Creek here in Las Vegas. It was a beautiful day out, not too hot and not too cold. The cool breeze came in the late afternoon, but it was still a great day to spend out on the golf course. 

 It was very exciting to see the celebrities up close! I think that Josh was pretty excited to see someone he admires so much playing a sport he loves. If only he could be on the course with MJ. 
 Hailey was very excited that her best friend, who is also a Make a Wish kid, Amanda was there. These 2 are inseparable. They would quietly go up to the rope and watch the celebrities hit the ball and they would both wave at each one. They caught the eye of a lot of celebrities. One that came up to the girls was Mauricio Umansky. He's one of the top real estate agents in Beverly Hills and is married to Kyle Richards who is on the Real Housewives of Beverly Hills. Yes I'm addicted to all the housewives shows. It's my guilty pleasure. He asked Hailey how old she was and what her Make a Wish was. He signed the girls flag and took a picture with them. Hailey gave him a Hugs for Hailey bracelet and he has since began following Hailey on Twitter!! 

The one celebrity that Amanda was especially looking forward to was Nick Jonas. This is as close as we were able to get to Nick. He did give us a quick wave as he played passed us. As Amanda was excited Hailey was excited. Just a simple wave and you get such big smiles from the girls! 

We brought Hailey's stroller for the long walks in-between holes but it didn't bother Hailey because Amanda was by her side the whole time holding her hand. She's such a great friend to Hailey. 


We got to say hello and get an autograph and a picture with Greg Maddux, a retired major league baseball player. He was very nice to the girls! 
 While at the event, we had to say hello to our favorite people. The ladies at the Make a Wish tent! 

The girls got a quick autograph from Baseball Pitcher Roger Clemens!


The crowd went WILD when Michael Jordan made his appearance to sign a few autographs for the kids. Even with us in the front row and we had the girls in front of us there was a lot of pushing and shoving. They even said he would only sign for the children, but it didn't stop the adults wanting memorabilia to be autographed. There was even a man there wearing Michael Jordan Shoes on his feet with plastic bags over his shoes striving to get the autograph. 



 Other celebrities we saw that stopped to sign our flags were: Ray Ramano from Everyone Loves Raymond, but the girls knew him from Ice Age! 

Alan Thicke from Growing Pains stopped to sign their flags.

Penny Hardaway NBA player was a really nice guy to the girls. He signed their flags and posed for a picture. So many cameras going off Hailey doesn't know where to look! LOL! 

Actor Flex Alexander was SO nice to the girls!! He even gave each of them a HUG. 

Flex was kind enough to follow Hailey on twitter as well. He even left the girls a message on Twitter! 



Brandi Chastain, professional soccer player,  stopped and really took time with our girls each individually. She asked Hailey her name, how old she was, what her favorite color is. Hailey gave her a H4H bracelet to wear! 

We owe a HUGE thank you to Daryl who is head of security at Shadow Creek. He saw Hailey and Amanda and started up a sweet conversation with the girls. He asked if they were Wish Kids and they both said yes. He asked me how we were enjoying our day. I said it's been great day. It's events like this that bring smiles to our children's faces and helps us create memories. I told him that Hailey has a terminal brain disease and it's organizations like Make a Wish that help us create those memories that we cherish. Hailey went right up to him and gave him a Hugs for Hailey bracelet. He said that he loved that she was full of smiles. When we went to get autographs for the girls he made sure that the security staff kept the girls safe with all the pushing and shoving that was going on. We really appreciate his help! 

Very awesome that they offered complimentary photos of families with the golf course as the background. 

It was another wonderful event that we are grateful we were able to enjoy with Hailey. She had a smile on her face the whole time! 

Thursday, April 3, 2014

A new way to see the world.

Hailey has been seeing an ophthalmologist since her very first episode in 2011 when her eye crossed and she couldn't look at me. They have always just monitored her vision and kept an eye on her optical nerve. When she had her feeding tube placed and she stopped speaking it was harder to test her because she could not communicate the different shapes/pictures that were being shown to her. As her speech progressed she was able to tell us what she could see. It always deteriorated a little more with every visit, but we always ended up leaving without a prescription until the latest time just a few weeks ago. 

We took Hailey to her yearly check up along with a note from school saying Hailey had failed the testing at school. I wasn't too concerned that she didn't do well at the test at school because I didn't know if they took into consideration that Hailey was a child with special needs and a terminal brain disease. An eye test can't be the same for all these different types of children. Can they?

That's the part that drives me nuts. When they told us that they suggest Hailey get glasses and we get the prescription I had no idea that Hailey's eye sight could be SO bad! It felt like going 0-60. I would have thought that her vision would have slowly gone bad, but her right eye is pretty bad. When I ask her if she can see better with them her answer changes every time. When she wears them she has a lot of trouble with depth perception. I have no idea what to think of these glasses and the prescription. I know Hailey goes to a board certified professional and they have to have a lot of knowledge to do what they do, I guess it's just hard to take on one more thing that leads us in the direction of her disease. 

SO...we took Hailey to have her pick out the frames that she likes best. Too bad for her there were none that were completely PINK. We did find a pink and purple combo that she was pretty happy with. She'll start off wearing them for a few hours at a time until it's an all day everyday thing. 

So far Hailey is okay with a few hours of wearing her new glasses. We will work our way up to more hours little by little. I have 2 sisters and now each of us have a daughter that wears glasses. Isn't that odd? 

I didn't think our Hailey could get any cuter, but I was wrong! 




Tuesday, April 1, 2014

American Girl Cafe


Before we headed back home we had one more surprise for Hailey. We took her to have lunch at the American Girl Cafe located at the Grove. The Grove is a very hip place. It has all the fun stores in one place. Sprinkles Cupcakes, Dylan's Candy Shop and the American Girl Store all on the same block. The American Girl Store is 2 floors and lots of fun at very corner. 

 Hailey did great with her walker, but I think her feet were moving faster then her brain was telling them to...It was almost impossible to get her to go inside the cafe because she was having so much fun window shopping. 
When we did get her inside she was so happy and looking all around. So many little girls just like her with their dolls getting ready for lunch. 

We knew that Hailey wasn't going to be eating her whole entire meal being on a feeding tube, but as I said before, we want her to experience life as a normal little girl. 

 Her favorite thing to do during lunch was to feed the doll her food. I thought it was very cute to see Hailey do as I did with her when she was a baby and mimic saying "AHHHH!"
 Everything at the cafe was adorable. So cute and tiny!
 When desserts start coming out each girl that was there for their birthday was sung to. 

During dessert a little girl, named Alexa, came over saying she had something for Hailey. She handed Hailey a bag with a gift card to the store inside!! Hailey's smile was HUGE and I got teary eyed...again
 Hailey was more then happy to give Alexa a hug as a thank you for such a great gift. Alexa and her family really made Hailey's lunch so much more exciting. Thank you Alexa!! 

 Speaking of exciting as we get ready to pay for lunch we were told that there was a family that had taken care of our bill and wanted to remain anonymous. That has never happened to us before! We wanted so badly to say thank you for the kindness and generosity. It really made us so appreciative of the good people out there. People that are strangers that touch our hearts helping with making memories for us with Hailey. 
The staff at the American Girl cafe was great as well. They congratulated Hailey on her 1 year anniversary and even gave her a fun goodie bag filled with surprises!! 

All in all this was a great trip! I loved sharing the trip and our pictures with all of you. Thank you to everyone who commented on our posts. I really love knowing that what I say is being read and acknowledged. It takes so much to blog about anything we do. I always end up blogging with a box of tissues next to me as I relive our experiences. 

Saturday, March 29, 2014

Disneyland Day 3

The night before our 3rd day at the parks we get a message saying that even though hotel guests get to take advantage of Magic Mornings where you can enter 1 hour early, the last day it wasn't going to be available to us. That magic morning hour is kind of a joke anyway. I thought that during this extra hour we have we'd get to the places that were going to have the biggest lines and go there first but that didn't turn out to be true. I thought I'd get in line to see the Frozen Princesses but they don't get there until 10 am and that's already an hour after the park is open to the public. Then I said I'll just go to ToonTown to see Mickey because that's pretty popular, but nope, ToonTown didn't open until 10 as well. It didn't make sense to me...

So while there was nothing to wake up early for we slept in on our 3rd day. When I woke up my feet felt like they were in cement. It was so hard to move! Walking is no big deal. Pushing a 40lb wheelchair with a 57 pound kid in it uphill and back around a huge park takes a toll!!

When we asked Hailey what she wanted to do she right away said, "Disney Jr. Live!!!" Here we go AGAIN!! Out of the 3 times we went Josh only went twice. It's easier on the little kids when a huge 6'4" man isn't sitting in front of you...LOL! Josh went and stood in line so he could go on the roller coaster and I went in with Hailey. I totally didn't mind. I really liked the show! It got better and better! 
Selfie of Hailey and Mom! 

After the Disney Jr. Live show we waited for Josh and Hailey loved the trolly car people that drove by and sang. They reminded me of Newsies! 

We saw Donald again, but he didn't have time to stop and take a picture so he just waved as he passed us by. 

We looked EVERYWHERE for the Toy Story characters and couldn't find them anywhere. Finally someone said that Buzz would be around soon, so we waited for him. Hailey really wanted to see Jesse but they said she wasn't going to be there...sad face! 
 Goofy didn't have time to stop for a picture either so he fist bumped Hailey and went on his way. 

We did get a photo with Pluto! 
 Hailey wanted to kiss his nose. It was against my better judgment because who knows how many children have kissed that nose before us...
 Hailey saw Daisy Duck out of the corner of her eye and started freaking out. I had no idea what was going on until you hear Hailey say, "DAISY!!!!!!" 
Daisy was very nice and took extra time for Hailey and her hugs. 
After all that we did Luigi's Flying Tires...AGAIN and we then we did something that we weren't too sure of and it may have been a good idea at the time, but in the end it wasn't too smart. We passed Soaring over California and I asked the line guys what they thought about us taking Hailey in. You sit in a row and there is just a seat belt and it wasn't spinning or jerking. He said that she'd probably LOVE the ride. I asked Hailey if she wanted to go flying. Hailey asked if it was a plane? Well...sort of. Now if you are just a regular normal person this ride is pretty amazing. You feel as if you are actually flying over California scenery. If you are a person with balance and brain issues it feels as if you are ACTUALLY flying over California with nothing to hold on to. Hailey was shaking and having spasms cause she felt as if she was suspended in the air and falling and flying. It was very rough for her. I didn't know if I should cover her eyes or what. We were stuck in the ride for the full 60 some seconds and it felt as if it were forever. It really did a doozy on her. Not a good choice and now we know... We did some window shopping afterword.  I love how Disneyland has the caramel apples in the shape of different characters for $10 each. That was going to be my souvenir from the trip!
Hailey had patiently waited 3 days for a Mickey Balloon so Josh snuck off to get her one and she was ecstatic! We ended up leaving the park pretty early that day and heading back to the hotel. We took the long way through Downtown Disney and checked out that HUGE Disney Store. I think Hailey would have been happy spending all day in there! 

So while day 3 is over we still have 1 more day of fun planned for Hailey right before we leave the next day. Hailey didn't know it but tomorrow we were going to have lunch at the American Girl Store and it was going to be very memorable!! Stay tuned!  

Friday, March 28, 2014

Day 2 at Disneyland 2014 - Autographs Galore!!

Princess Hailey was ready for day 2 at the Parks. Today will be mostly about meeting characters and obtaining autographs. This will be the highlight for Hailey. Since we aren't having the greatest luck with the new Guest Assistance Pass and there are only about 5 rides total Hailey could go on, this is our mission for today. 
One place you are sure to find Mickey is in ToonTown, at his house. This day Fantasia Mickey was there. We've never seen him before, we've seen regular Mickey. Again Hailey was determined to stand on her own and I was in the background holding my breath ready for a quick catch if necessary.
Oh happy day!
 Hailey insisted we get a family photo. We don't have many of these so I was glad she suggested it! 
 The most wanted Disney characters were Elsa and Anna from Frozen!! 
 Mary Poppins and Bert were going for a stroll through the park. I don't know if this is a new thing or just something I have never seen before. You can walk with them and they will sign your autograph books. It's a little harder to do in a wheelchair. I was afraid I'd run over someones foot...
 Hailey's ABSOLUTE  favorite princess is Merida from Brave. Last year Hailey was NOT able to bare weight on her legs or get out of her wheelchair. Lucky us this was the same Merida as last year and she REMEMBERED Hailey!! That meant SO much to us! She told Hailey that Hailey was a Brave girl and that she was so happy that Hailey came to see her and that Hailey was standing on her own!

This is a picture from last year compared to this year! What a difference a year makes!             

Merida made Hailey pinky promise that Hailey would keep being Brave and would come back to see her again next year and every year after that. 
 Again I teared up. Hailey listened so intently to the words Merida was telling her. Merida might never know how much that meant to me and how I know that Hailey will remember this moment, but I wish she did.
 Hailey was the last child before Merida "had to go feed Angus her horse." Merida asked if Hailey could go for a stroll and I could only nod my head because if I spoke I'd cry. Hailey got to walk with her favorite princess! Last year at the hospital before we went to Disneyland and Hailey was wheelchair bound we were told she'd most likely never walk again. Her disease was progressing too fast. One year of not being able to walk and tons of physical therapy and leg braces and determination and our little girl is taking steps at Disneyland with a princess.  
 Merida had so much patience as she walked with Hailey and I knew that this would be once of the best experiences for Hailey to have. We took a video as well and posted it on our Facebook page. 
 One last very long hug. Hailey did not want to let go. This was the most amazing moment of our trip. I think of all the issues we had during our trip and when I see this photo or see the video I forget all about that and think back to this moment when my daughter was elated with happiness!! Thank you Merida! 
 Another character we had found while on a stroll was Alice. Hailey hasn't seen Alice in Wonderland but that didn't matter. Alice was so nice and held hands with Hailey and signed her book for her. Alice had to hurry, because she was chasing a white rabbit who was late for a very important date. That was her story and she was sticking to it. I loved how Hailey said she wanted to go look for the rabbit too...
 Hailey knew right away who the next charter we found was. From her chair she pointed and yelled, "HOOK!!" She talked about her friends Katie and Bry who love pirates and made sure I let them know we found Hook! This was the first time ever seeing Hook for any of us. 
 We now know that we can NOT go to Disneyland without an autograph book. When that book isn't being signed Hailey is flipping through the pages over and over. She LOVES it! 
 With Pixie Hollow kinda being tucked away the lines aren't too terrible and Wheelchairs ARE allowed. Last year we saw Periwinkle and Vidia, today we found Tinkerbell. We've never met her before either. What a day of firsts!! 

We had found Mickey and now we were on the look out for Minnie. Hailey could have just spent all day in Minnie's house in ToonTown. Everything was her size and she was having a ball looking at every single detail. 
It was a little bright so Hailey had her eyes closed, but it was still a cute photo! 
 Hailey loves Minnie's autograph by the way! 
 The only place you can catch 5 princesses in one place and guarantee you get time and an autograph is over at Ariel's Grotto for a Character Dining experience. I made reservations to have lunch with the princesses and Hailey was beyond excited for this. If you remember last year this did NOT work out very well. This year and this experience was awesome! 
 Hailey again looking at the autographs. 

With the issues we had about not being able to take wheelchairs through character lines I talked with Josh about doing this lunch. Yes it's expensive and No Hailey doesn't eat any of the food, and they don't give tube fed children a discount, me paying $100+ is almost worth not fighting the lines.  

First up was Ariel herself that welcomed Hailey.  Hailey made sure that every princess got the biggest hug ever!
 Cinderella!! 
 Snow White!
 Sleeping Beauty! 
 Belle! 

 After "Lunch" we went in search of even more characters. 

Another photo comparison. These were also taken 1 year apart. Last year the stimulation was a little overwhelming. Part of her disease during an episode is over stimulation. This year we are all smiles and no tears!!! 


While wondering around looking for characters we spotted a few we knew and loved...
 Phineas, Ferb, and the Campfire Girls! 
 These guys were dancing in the street so I stood by while Hailey joined the party. 
 We couldn't get a photo with Phineas or Ferb but the Campfire girls were happy to pose with Hailey. 

Yeah!!! Another family photo!! LOVE! 
 Have you ever met the residences of Buena Vista Street? Here are 2 of them. Molly and Phi Phi. These 2 are so silly and fun! 
Here is RED the firetruck. We asked him to turn off his engine and sirens and we took a happy family photo with him! 

Another Mickey and a HUG!! 

While waiting in line for Mickey we met the most wonderful family. Thank you to Bryan and his family for taking time to talk with us and interact with Hailey. Bryan had the most entertaining story that he shared with Hailey. He started out with a dollar bill and as his story went on he would fold the dollar into different shapes. There was a bird, a canoe, a bow tie... Each person in his family showed Hailey love and gave her hugs and kisses and I love that Hailey touched their hearts! His daughters even posed for a selfie with Hailey and she loved it! Hugs to your family Bryan, and it was great meeting you all!! 


Before our day had even started I had remembered that I forgot sunscreen. I had to stop at the gift shop to spend a small fortune on some Coppertone. While there Hailey spotted a little boy wearing a Make a Wish t-shirt and she said to him, "I HAVE that shirt too!!!" There was a family that was there on their Make a Wish trip and we told them that they are going to have SO much fun and that it was Hailey's 1 year anniversary. This family was staying at the same hotel as us and we were happy to wish them the best day ever! Little did I know I'd run into this family again. You would think that Disneyland is SO big you'd have a hard time seeing the same people twice, but it was meant to be. While in line for the Disney Jr. Live show (which we've seen 3+ times) we ran into the same family again! I started talking with the little boys grandmother, Missy, and we just instantly clicked. We got on the topics of g-tubes somehow and as soon as I mention "tubie" Hailey wants to show off her new belly pad she had on. Missy hadn't heard of tubie/belly pads so I told her that I have extras and since we are in the same hotel I will send one over to her. She can sew, and it wouldn't be hard for her to make her own. Her grandson, Bubba who is battling Neuroblastoma for the 3rd time, has trouble with granulation tissue and I told her Hailey had the same issues. I didn't know about these pads until my friend Mary sent Hailey some and they have been the best thing ever. 
 The next day when we left the park early I got a message from Missy saying that she and Bubba loved the belly pads and she was going to go home and get started on making them herself. She had needed some syringes and I had extra so we met up at he hotel and sat down to talk. It felt as if I was talking to a friend I've had for years. We are staying connected on Facebook and I am so happy we met! Hailey right away wanted to share the Mickey lollipops she got and she even let Bubba pick the red one! That's true friendship!

I didn't used to be able to just start talking to people I didn't know. I was so shy growing up. If it wasn't for Hailey and our situation I don't think I would be able to just start talking to people. When I learn something I want to share it. I know there are other people like me who are doing this whole parenting medically fragile or a child with special needs for the first time, and don't know what to do sometimes. The things that people have shared with me I'm very grateful for and I feel good passing along the information. We are all in this together.

Day 3 is just around the corner and maybe 3 days at the park is a day too much. We'll be sleeping in tomorrow and taking our time. Stay tuned to find out how we spent our day!