Happy Birthday/San Diego

Hi everyone!


First of all, this blog turned one year old on April 9th 2014! Wow hard to believe it! It seems like just yesterday my friend Kianna inspired me to blog! So now that we are 1 have a piece of this birthday cake I found on Google!

Now, I promised I would blog about my trip to San Diego, and I don't break promises. 

So, San Diego was my first time flying with someone who is not my mom (I went with my dad). So Tuesday we were supposed to fly out to Charlotte and get a connection to San Diego, it snowed in Charlotte so instead, my dad and I got picked up via a limo around 3:30am and took a direct flight from Philly to San Diego. 

The view outside our window

Daddy <3

Hey! 

Pizza!

We went on a lunch date and my dad got this salad which was bigger than me

Coming from this brutal winter, I loved the palm trees

I would not want that job....

Such a tall beautiful building

So pretty!

Sign in the hotel

This is pretty cool! 

Doctor Harmatz, the doctor who started the company on MPS research and I

Doctor Harmatz, the doctor who started the company on MPS research my dad and I

Doctor Harmatz, the doctor who started the company on MPS research and I

The BioMarin booth had some nice white leather couches to lounge on

The top of the hotel at night

Again

Here's the set up

All the speakers 

My new friend Kendra and I (Kendra has a different MPS, MPS VI)

My dad, Kendra and I

My dad, Kendra, Kendra's mom and I

The panel!

This was on the screen as I spoke

Panelllllll

Speakers

Speakers

After this, we had dinner and flew back the next day. 

Hey everyone!

It has been absolutely forever! You would not believe the 1 or 2 months I have had! First of all, early in February, my family and I found out that my maternal grandfather "Poppy" Tex died of a heart attack, we were very close to him when I was young so that was hard for me to cope with. The next thing was I dyed my hair!

At first it was a very slight red

Then after that I went to San Diego to speak at a genetics conference (which will be its own post in itself soon) then a couple weeks ago I dyed my hair again

Now its a very drastic little mermaid like red

Now on to my past week....

So last Tuesday, I felt okay, normal, but had a bit of a sore throat, which I thought nothing of, until I got to infusion on Wednesday and had a nurse listen to my lungs and gasp as she listened, which scared me. It was just because there was wheezing. So my doctor and nurses made a decision to not do infusion. So they gave me Albutral and sent me on my way home. 

This is what an Albutral treatment looks like, in case anyone is curious.

I stayed home Wednesday, Thursday, and Friday. On Saturday, I felt the worst, I was tired, Oh so congested and had a horrible headache. So, my mom took me to my pediatrician to see whats up. They tested me for strep (they swab the back of your throat, I gagged), they tested me for the flu (shoving a q tip up your nasal canal to the spot where your nose and forehead met, I cried and screamed) after both came back negative, we had to go to the local emergency room (I have never been to an emergency room in my life) and get my lungs x-rayed to see if I had pneumonia, yet again, negative. So Saturday was just filled with me on the couch watching movies after being prescribed amoxicillin  (finally got to see Monster's University, it was so cute!) then yesterday I still did not feel good so I laid down and watched movies again (I watched Saving Mr. Banks, Frozen and Wreck-it-Ralph, I love and recommend all three), then I went to sleep at 8:30, had a HUGE coughing fit in the night last night and was woken by it at 12:30 and couldn't fall back to sleep until 3:30, luckily it was pre-determined that I would stay home and was woken by my dad leaving for work at 7:30. I am feeling a bit better, hopefully tomorrow I will go to school (I will if A) No fever B ) I don't wake up in the middle of the night C) My throat feels decent ) So here's hoping!

Sincerely,

Sarah