Tuesday, June 22, 2010

Shared Randomness

In an effort to get back to blogging I thought, why not share some randomness with you?? Here are some pictures I found on my phone, from the last few weeks. I thought it might be fun to share and perhaps even a touch cathartic.

Our new favorite garden center (Ash's) had this wonderfully whimsical n clever gate. I say Dreamy!!! I will copy this and know exactly where I want it ;)

The hubster mulched all around our front yard trees. We found these vibrant Zinnia's and also grabbed some of my all time favs-Lavender, in white n purple flowers! They make me happy. I just adore the way they sway in the breeze.

I found our hightsy sleeping in her favorite hot spot. She is a sunbather at heart.

Bored one night I put my face on a bunch of different photo props. I love these iPhone apps.

Mr. Nelson was strangely fond of this one :)

A pic I snapped for no apparent reason waitong in the ER for Gavin to be seen. I have an iPhone app that creates wonderfully strange environments around the shot.

ER waiting room.

Notice the balloons way up high.

Once at The Childrens Hospital of Philly, I would roam around at times looking for beautiful things to lift my spirits.

Wonderful common area for children and loved ones to share a smile. Lots to touch and feel and play with.

the elevator ceiling was lit up with a vibrant starry moon lit night.

Renee Brittenbucher prints were a soothing sight for my eyes.

Just lovely spirited pieces. These reminded me that the most simplistic things can have a big impact.

Smitten as a kitten with this floor at CHOP.

A sweet girl dressed up as a lemon to celebrate the life and legacy of Alex of Alex's Lemonade Stand.

Art All Night in Trenton each year is such a great event. Watching art created live is dreamy.

Plus the 1000's of pieces on display from every skill level and medium is a delight!

A fun lamp I wanted to bring home.

Oooh this piece too!! I was head over heals for this photgraph of which I could not grab a decent shot of due to the glare. That is why you need to frame these things in glareless glass. You'll never even see it in your own home as normal lighting will glare it up too.

Rory Mahon and crew heat iron and other metals until it is molten. The poured this molten iron right in front of us into the molds and created Art All Night 2010 medallions for collectors. Amazing artistry.

Finally, I leave you with a pic of Lisa and myself. I met Lisa through the world of STJ many months ago. We met up this week as she had oodles of goodies to gift me for use in display and marketing of our STJ Soiree this October 16th, 2010. How cool right??!!
Lisa was also awesome enough to help us sell raffle tickets at the convention. You just never know when you will meet a new friend!
Thank you Lisa for your generosity towards STJ and your friendship to me. Hugs abound!!

Posted using BlogPress from my iPhone

Friday, June 18, 2010

Our Family

Hello all sweet readers. Michael and I want to thank you all for your unbelievable sweet comments, emails, texts and posts in support of our Gavin. Our Gavin is home for 3 days now. He has a long road ahead and quite possibly more bumps to come but he is in good spirits and such a level headed young man, so it has not proven to be too difficult for him to handle.

The short version is he had contracted the common teenage virus: EBV aka Mono. The large majority never know they get mono or are only mildly affected. Needless to say Gavin got hit by the Mack truck of Mono viruses.
While in hospital (CHOP) they discovered some other concerns; strong possiblity of Crohns disease and a remote chance of a cancer (not blood). This harsh case of Mono may have turned out to be a blessing in disguise.
Gavins White blood cells are very high and his platelets are pretty low. His Spleen is still enlarged (common for harsh virus cases).
Blood results today revealed his platelets have barely risen in numbers so more retesting on Monday.

He is undoubtedly better compared to those super scary first days. Until his body recovers from this Mono the other specialists cannot do further testing to deny or confirm the other concerns.
So, it will be a few months before we have more answers. Gavin will finish his schooling at home and make up exams hopefully this summer.
We have been told it can be up to 6 months just to recover from the Mononucleosis. Who knew? Not me!

Surprisingly this is seemingly ok with all of us. I think because we believe all will be ok. So for now we are going about each day as normal. The only difference is helping care for Gavin which I could do for the rest of life x a gazillion years. He is our love (Austin too ; ) and we will make it all work so he has everything he needs.

I know a number of you have children with disorders, diseases and some of them had to pay the ultimate price. My heart breaks for each and everyone of. Please know that our thoughts and prayers are with you, Always.

Much love & joy-
Dani, Mike, Gavin & Austin

- Posted using BlogPress from my iPhone

Thursday, June 10, 2010

A Scary Time Update

I just popped into a "healing room" here on his floor. They have these rooms filled with 2 computers, sofa, round table/chairs and tv. You can put a sign on the door that says "healing in Progress" so you can be left alone. I am around the corner from Gav as he spends time with a friend who came to visit. He was cleared of "catchy cooties" so now can have all visitors.

Saying, Thank you just seems "airless" to me...like it doesn't carry enough weight in how grateful I am for all of your prayers and well wishes. HUGS x a gazillion ;)I am doing well. 1 crying jag on the phone with Brandi yesterday when they brought up some crazy scary diseases (since ruled out) and 1 when the doctor came in to prep us for the oncologist talk. Unfortunately, I was unable to hide that jag from Gav but I was able to quickly "pump the brakes" and pull myself together.

I got a shower today which healed me bunches.I needed to do laundry, which they offer for free here. Clean clothes and a shower and I feel so much better. So crazy how I took that for granted before.I went upstairs to the top floor- Connely Center and found they also have a great resource center so you can find any and all info on your child's illness(es). They also offer nap rooms. 10-3pm daily you can reserve a room to get rest. This will be helpful as Mr. Nelson stays at home nights with our Austin and comes back days to spend with Gavin. I can get some real rest in a real bed that doesn't remind me of medieval torture.

I was able to borrow a nap room from 2-3pm today and although I did not sleep it was a worthy visit. They offer those same rooms at night for parents with children in the intensive unit. If one becomes available (sometimes they do), I will get a room at night which would be wonderful. Close enough to Gav to be there and still sleep in a real bed. Again, something I just took for granted.

I am starting to feel a lil bit more comfortable here (unfortunately) and venture from the room which I am pretty sure Gav likes ;) LMAO..that poor boy. Sick and stuck living with his mother in the same room..really quite funny. A teens nightmare for sure!

Also comical how every doctor looks at me so perplexed, stunned, shocked-they stare-no exxageration. They all think I am WAY younger than my age. Seems they all think I had him at about 10 yrs old..lmao. I suddenly feel ashamed of how young I look to some people. I know I do not look my age but I can assure them Michael is not Elvis and I am not Priscilla and married at some unfathomable age ;)

So back to reality..tomorrow yields full body scans for Gavin with dye/contrast looking for cancer and/or proof of Crohns disease. sigh...................

Wednesday, June 9, 2010

Scary time for us

I am sitting in what looks to me like a reflection bench. Time to sit and think. Plenty of room to have personal space. I wonder how many 1000's of people-parents - loved ones before me sat here reflecting on what their lives have become. This is CHOP- childrens hospital of Philly. Our son Gavin was brought in last night from our area hospital via ambulance. Gav is 17.5 years old and an EMT himself. So this was undoubtedly strange for him to be the one wheeled around. He is a proud young man with a high tolerance for pain. I knew something was quite off when he agreed to let me take him to the ER.
Many tests and hours later all we know is his spleen is very large. His White blood count is scary low and his platelets are also too low to be healthy.
I truly feel like we are in an episode of House. Tons of tests and no answers. At least not yet. The doctors and staff so far are wonderful. They have kept his severe back pain limited with warm compresses and meds. I finally left the room so I could stretch my body. I need to avoid letting my usual rituals go in fear I will have a strong Fibro flair up. I can't imagine letting that happen. I need to be here wholly for Mr. Gav.
My walk revealed something wonderous and yet overwhelmingly devastating. The sheer scope of this hospital is undeniable. It is 100% dedicated to just children. I am sitting looking over a common area 4 floors up. Surround this and me is rooms on top of rooms on top of more floors of rooms for some very sick children. It iscwonderful here and yet as scary as any horror film I have ever seen. The littlest angels are wheeled past me with their mommas in tow, seemingly to another test. Mothers and fathers sit on nearby benches staring in oblivion, holding their heads in their hands, some crying, one fixing her makeup to hide her tear marked face others sharing with others their battle stories of how they are trying to save their childs life.
My heart is the heaviest it has ever been and I wonder where we will fall in with our beloved Gavin. Will this place become apart of our forseeable future or will we get to sneak away with our baby never to return?

- Posted using BlogPress from my iPhone

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