Almost every girl likes beauty queens. I love em! I met Miss Pennsylvania before, MIss JUniata Valley, and Miss Teen Pennsylvania before. They were so sweet and we tried on crowns and everything.
This was like that but crazy better! Miss America (Nina as she told me to call her), taught me how to do Bollywood dance and she was so kind and supportive. She told me to never give up on my dreams because they can always come true.
This event was so fantastic and even though mom and I ware jet lagged after coming from Hawaii and the event was like 6 hours long, I got to take a break in a private room and guess who was in there taking a break too? MISS AMERICA!!
Then we danced for a bit after I received my medal!
I am so happy that I had this experience. I feel very lucky and am so grateful. I will never forget this day for the rest of my life. :)
Mickey sent me a special fruit plate for my birthday with all exotic local fruit and Happy Birthday Kennedy written in chocolate! And a personally signed birthday card from him and Minnie.
The day started early when mom and I got up at 6 am to cross the street and eat at our favorite island coffee shop.
These pictures don't sum up 1/2 of what I actually did for my birthday ,but it's hard to put the photos on this site so let me just tell you the point.... it was a BALL. I loved every second of it.
Just when I thought all the fun was over, I had a million more things to do. I hung with Stitch and made space goo, I danced on the sand on the ocean... I met a really cool kid from America's Funniest Home Videos, I ate a ton of good food, and my mom and I raced on the lazy river.
I couldn't have asked for a better birthday and I am so grateful. Like my mom said double digits is a HUGE deal, because most people don't make it to triple digits.
I knew that Hawaii would be fantastic I just knew it. No one knew that I was sick. The plane rides were simply horrible. It felt like forever and ever. My mom downloaded a bunch of new movies for me and that was super helpful, but both of our planes didn't have seats that reclined! My back was killing me. But before I get to all of that, let me tell you how the day of travel started....
A limo came to get us at 3:15 a.m. I was so super tired, but excited to be going. The inside of the limo was amazing. Changing color lights rotating and free cold water!
As we approached the island after a total of 18 hours of travel, I became energized again. I was so ready for my trip to officially begin.
Traveling sucked, but everything else was amazing. I had the best time of my life in Hawaii. No medical restriction on swimming, loving the sun, eating the best most fresh food on the planet, laughing until the sun went down, sitting on the beach, and have a fun time.
All the photos are sideways and I couldn't change them sorry. It was taking too long.
There are way too many pictures to post and it takes a long time to put them on here. I will make a post about my birthday because turning 10 was epic. :) Left Hawaii with a happy heart.
I am so happy to Make-A-Wish foundation for sending me and family on my one true wish. It was to go to a tropical land, being able to swim in warm salt water, have a one on one with Mickey and Mouse, have the paparazzi shoot me and make me feel famous.
I felt all of those things. I swam in the water in the ocean... I swam after dark...I made new friends... No one thought I was sick or different in any way from anyone else.
I know that I have to go back. I just have to :)
So I go to see my new Pediatric Gastroenterologist (second visit) and she gives me the results of my Upper GI with Barium Follow Through study.
Ugh. I am so mad.
Just when I thought I could throw a tea party and relax before Hawaii, I have a medicine regimen that will make me feel sick as a dog for the next two days. Barf!
Oh well, at least I have a few days. I am not in the best of spirits but it will be over soon. Thank goodness.
I am off to think about Hawaii and take my medicine!
I haven't felt that great lately. My headaches are pretty intense, and I haven't been able to do much on hot days. I even missed my Giant Stores Tour :(. I was so sad about it, but my mom let me do a mini tour.
I have new meds my neurologist prescribed, but my mom decided that I won't try it until we get back from Hawaii in case it makes me sick like my last med.
I am so happy that this weekend Make A Wish Foundation is sending me to Hawaii. It is truly my one true wish to go to the Disney Resort there and not have to worry about the things I can't do. And focus on what I CAN do. Swimming is my passion.
I feel so grateful today for my life and I will tell everyone about my new Outreach program for other girls just like me!
Last Friday night I wound up in the emergency room doubled over in pain. I knew things weren't great because I am the one who asked mom to bring me.
She had asked me twice that day, but i am great and being honest about my pain tolerance. Once there, I was ready to go home...
During Summer things can be rough. When temperatures rise, my headaches get pretty bad. Coupled with my new stomach problems...it sucks. Sometimes I watch kids through the window running and playing and it can be hard.
All I want to do is go out there without pain and ride a bike maybe. But riding a bike is something I just won't ever do. Hey, it never stopped my mom from buying them for me. Just waiting for the day I could ride one of them. I love her for that. For always seeing me as just a girl. Normal and perfect.
She and I have started taking walks. My legs hurt so badly but it is fun to see just how much I can do. I feel very proud of myself.
So maybe my Summer looks different from most kids, but I find my ways to have fun and be creative.
Wanna be a pal or teach your kids to be a pal to a special needs middo? Don't harp on what you believe they can't do....focus and find joy in what they CAN do. It makes all the difference.
It was a blazing 6000 degrees when I woke up this morning. My mom prepped me for my hospital visit and all the tests that I had to do.
Why on earth can't I eat before ANY of these tests? Geez with the way medicine has changed it sucks that they haven't come up with a way for kids to eat before hours of testing.
Well imagine my dismay to see the huge bottle of barium sulfate suspension they wanted me to drink. OH yea 2 actually. My mom had the nerve to call it a milkshake. A milkshake??? Are you kidding me? What milkshake tastes like chalk? If so, I will stay away from milkshakes for the rest of my life, Actually she has ruined the work milkshake for me forever. lol
The morning started off well. Mom and I danced and sang in the car the entire 35 minute ride to Children's Hospital. I had some of my same crew in radiology and that is always always always a nice thing.
When I realized that I was going to be there for a few HOURS drinking this stuff and taking tons of xrays, I decided to have a little fun with it. They even gave me permission to walk around the Children's Hospital while it "settled" in my stomach for the next few shots. I like to call my xrays "photo shoots". It's true. We take a few ("turn this way, turn that way. lay still.)
We headed to the cafe and people watched the nurses and doctors on lunch break. I actually eavesdropped on the ladies behind me---they were being totally inappropriate.
I am happy that it is over and I hope they find out what is going on and we can fix it easily and soon! I am so ready for my Summer to begin!!!!!!
For some reason I always think my general doctor or maybe my zillion specialist can figure out when I start having a new problem. But nope. No luck. No can do. I need someone new.
New in my world isn't always great. New shoes? Maybe. New bedtime? Not really. New doctor? PLEASE no.
So my mom called around and read some reviews and found me a great Pediatric Gastroenterologist to help me with my stomach issues. Last week I went to the hospital and did a ton of tests and guess what? She needs me to do MORE! So, take a long guess at where I will be next week?? Yep. In the hospital. Lol. Good news is I will charge all of my electronics and I will not be bored this time around. My mom keeps insisting on bringing books. Would it kill her to bring my iPad?
Well, I am off to watch Beauty and the Beast and go to the pharmacy for my new meds. Let's hope they work!
Well the Summer has officially begun. I have a lot of doctor's appointments, procedures and things to do with Children's Miracle Network AND the biggest thing is going to Disney Hawaii for my birthday next month with Make-A-Wish Foundation!!.
June is packed with appointments. Tomorrow I am up at 5 to meet a new specialist. So nervous!
In the meantime my mom is forcing me to work on multiplication and reading. BORING. The worst part is if I don't do them I can't earn any extra allowance money. She doesn't pay me to learn, but she won't give me extra dollars if I haven't done my assignments first EVEN IF I do the extra chore!
I went to see The Fault in Our Stars.
This movie is about a girl who falls in love with Augustus Waters from her cancer support group. I think I was the youngest person in the movie. It was really good.. Everyone cried but me. I think I want to see it again. My mom cried like a baby and she even wants the soundtrack.
We went to see Maleficent AGAIN but I got too sick to stay for the entire thing. :(
Some of my Summer Plans...
2. We have a few staycations planned. Simple, short, one day trips within a 2 hour drive. Lots of free things to do in the towns. Parks. Rivers. Streams--- you get the point.
3. I have to practice 4th grade concepts and get ready for 5th grade. I missed over 6 months of school and even though I went back 1/2 days, I missed majority of them!
4. Swimming whenever I can.
5. Walks with mom and our dog super early in the morning before the sun starts to beat my brain up. I'm talking like 6:10 am...seriously.
6. Mom and I have a lot of baking planned. We made some Chai Spiced Muffins a few days ago and they were great with tea!
We have tons more planned like walking in the rain, making clothes, rearranging the house furniture, etc. My mom does a great job about making sure that I stay busy with a balance of relaxation.
Here are some tips for Planning Summers with kiddos with Special Needs!!!!!!!
PlayProject.org compiled a great list of Summer ideas/camps etc. See it below...
Summer Activity Ideas:
It is the last day of 4th grade and I have missed a ton of school recently. I haven't been feeling well at all.
My mom got me a few new specialist that I start to see next week, but this week I have to do labs, blood work, and xrays. So while all my friends are signing yearbooks, I will be at the hospital all day.
The good news is that I have a meeting at Children's Miracle Network and am so excited!!!!!
It isn't even 6:30 am and I am off to the hospital. I wish all my friends luck on their last day of school!
Say a quick prayer for me today!
Hey! I am a 10 year old girl living with Autism, chiari Malformation Type 1, Syringomyelia. I love to draw, paint, take photos, make crafts, and hang out with my mom. Life gets tough sometimes, but mainly I'm just a rocking girl like anyone else!