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!
I had good intentions: "Go to the playground. Take a walk. Play Soccer with my mom." Well, my brain and stomach had a different plan.
It was such a pretty day outside so when my mom suggested going to the park I was very excited.
Things started off really well. I climbed, carefully-- played hopscotch (whoa balance issues), kicked the soccer ball around.. and ate lunch in the sun.
About an hour and a half in... I could feel the pain coming on. Mom and I took breaks, but I decided to take a longer one.. We left and went to the bowling alley and a tournament was going on. Well, once the deep headache set in, then came nausea. After that it's all downhill from there. We changed the plan from going to the store and get veggie dogs to grill and came straight home so that I could take a nap in my dark closet apartment.
I missed the Children's Miracle Network telethon appearance for the first day. But I have to set limits for myself.
Here's my video from my playground time yesterday!
Short video dancing outside
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!