Spinal Cord Society

It’s that time of the year again, the Spinal Cord Society’s annual golf tournament is coming up Monday, September 14 and will be held at Olde Liberty Golf & Country Club in Franklinton, NC.

Remember my friend Stephanie…

This July marked the 25th anniversary of her accident that left her confined to a wheel chair. The anniversary also comes at a time when the Spinal Cord Society has made great progress in cure research for chronic spinal cord injury. Unfortunately the promising news comes at a time when donations are at a extremely low level. We all are tightening our belts and being very selective in the causes we support. Please consider putting your efforts and donations where they will offer the maximum return.

And of course there's Uncle J ;)

The Spinal Cord Society does not have a lot of marketing or glitz, but is filled with grassroots support of friends and family of the paralyzed community. Every dollar you submit will be used only for cure research and support of the trials needed to expand the knowledge required for cure. The Spinal Cord Society operates its own lab from grassroots support and does not solicit government funding. Several breakthroughs in areas affecting the spinal cord injured have been pioneered by the Spinal Cord Society. The recent break through has been submitted for peer review in leading scientific journals. When published, the information will be available on the website. http://www.spinalcordsociety.com

There are several ways that you can show your support:

1) Join this cause on face book:
http://apps.facebook.com/causes/328057/76089378?m=bf068487

2) Become a sponsor of the 2009 Scramble for a Cure.
http://www.spinalcordsociety.com/chapters/raleigh/2009Brochure.pdf

3) Purchase Event Tickets by contacting me or calling Stephanie (919) 554-9627

4) Donate online at: http://www.spinalcordsociety.com/fundraising.html

4) Drop Stephanie an email in support of her efforts: mailto:scs-nc@nc.rr.com

You can view pictures of last year’s golf tournament and benefit auction at:
http://www.spinalcordsociety.com/photo.html

Head Shots! ;)

Here's a few recent pictures that were taken at Crewe's birthday party, while Grace was trying to talk to her Gigi...

Crewe's 1st Birthday Party

Sunday evening the family gathered together to celebrate Crewe's first birthday!

We had the cutest cake squares!

Is it time for me to dig in yet?

Here Mom & Dad, have some too...

A little for the hair...

My nephews are too cute!!

Happy Birthday Crewe-Bear! We love you!

Boat Ride

On Sunday, July 12th we went for a boat ride to Plymouth. I had never been to Plymouth by water, so it was a first for me! Here are a few pictures of our ride!

Dermatologist

During the first six months of life, 5-10% of hemangiomas ulcerate during their rapid growth phase. Although the hemangioma itself, isn't painful, the ulcerated lesion is and is at risk for bacterial infection. Traditional therapy includes topical antibiotics, and local or systemic steroids.
Grace has been on topical antibiotics for just over 2 weeks now. We went back to Duke yesterday for a check up and while we were there they went ahead with the laser treatment. Laser treatment has been found to accelerate healing and reduce pain within few days, often after a single laser treatment. Laser-treated lesions heal in one to five weeks.

They hit me with the laser on the bottom side of my arm so I could see what it felt like. It felt like a light pop of a rubber band. Then they zapped Grace's 3 ulcers. The process took all of 15 seconds and we were out of there. Grace did squeal, but after a bottle, she was fine. We go back next Thursday to determine if more laser will be needed. They seem to think that the one closest to her neck will need more than a couple of treatments, but it will be determined on a week by week basis.

Just thought I'd give you an update! Hopefully these ulcers will go away soon!

Crewe

Happy 1st Birthday Crewe! We Love you!!

Lilley & Grace

Yesterday Jenn & Lilley came over to visit! We got a chance to take a few pictures of the girls together!

2 Month Check Up

Grace went in today for her 2 month check up!

She now weights 10lbs. and is 23 inches long.

She screamed/cried during her shots and a few seconds afterwards, but other than that she's been fairly good so far (knock on wood).

Hope everyone has had a great Thursday!

2 Months Old

Grace is 2 months old today! :) Wow, does time fly!

Isn't she precious?!?! Grace has recently found her hands. She loves sucking on them. She does a lot of smiling now too. She loves to swing in her swing, read books with me, and snuggle with her Daddy! We go to the doctor tomorrow for her 2 month check up. I'm looking forward to seeing how much she's grown but not looking forward to those 2 month shots!

Hemangioma

Some of you may have seen or maybe not, but Grace has a hemangioma on her left shoulder. We took her to a dermatologist back in the beginning of June but I didn't feel as comfortable with what he told us so we took her for a second opinion on Monday.

Just a little background:
Hemangiomas are a type of birthmark that is a self involuting benign tumors of endothelial cells (the cells that line blood vessels). In most cases it appears during the first days or weeks of life and will have resolved at the latest by age 10. Hemangiomas are connected to the circulatory system and filled with blood. The appearance depends on location. If they are on the surface of the skin they look like a ripe strawberry, if they are just under the skin they present as a bluish swelling. Females are three to five times more likely to have hemangiomas than males. Hemangiomas may break down on the surface (ulcerate).

Hemangiomas go through three stages of development and decay:
1. In the proliferation stage, a hemangioma grows very quickly. This stage can last up to twelve months.
2. In the rest stage, there is very little change in a hemangioma's appearance. This usually lasts until the infant is one to two years old.
3. In the involution phase, a hemangioma finally begins to diminish in size. Fifty percent of lesions will have disappeared by age five with the vast majority gone by puberty.

When Grace was first born we thought it was a bruise that happened during delivery. If you look carefully in this picture of her just after birth you can see that the skin is red on her left shoulder...


After talking with the pediatrician while in the hospital it was determined that it was either a hemangioma or a port-wine stain but then later at our first dermatologist appointment he told us it was just a hemangioma. Now, here's a picture of it at just almost two months:

Grace's hemangioma is on the surface and under the skin, therefore she has the ripe strawberry look and the bluish swelling. In the past 2 weeks it had begun to ulcerate which means that the skin is beginning to break down in places. The doctor we saw on Monday seemed to think that Grace's hemangioma should fade for the most part by the age of 5. He took pictures of it to begin the monitoring process and said he will be with us every step of the way to help us monitor it. He gave us medicine to put on the parts that have begun to ulcerate. There are 4 small spots. We go back on July 15th to see him again to determine if the medicine is helping the ulcers. This doctor showed us before & after pictures of another little girl who had this same type of hemangioma on her arm and it was amazing the difference after a few years. Just thought I'd educate those that read the blog about Grace's hemangioma as well as to document it on her blog so that when I print it out into a book there will be something about it in there for her to read one day.

We are so blessed to have a beautiful, healthy baby girl! :)

4th of July Weekend

Grace was such a trooper this past weekend and LOVED all of her boating adventures! Friday afternoon we took a quick ride over to the Sandy Beach...


Scott & Jacquelyn playing CornHole

Saturday morning we all got up and went to Durants Island and spent the day. Grace slept the whole way there and the whole way back. There were lots of boats that went. We found a spot on the waters edge and played in the sand and the water.