Labor Day Weekend

Last Friday, I went down to the beach with my friend Heather and her two boys, Luke & Ayden. We went to lunch and Heather and I took turns shopping/sitting in the car while all the kids napped! Then we went to the Aquarium. I hadn't been since they redid it a while ago. It's probably been 8-10 years since I was there last. It was really neat!

Ayden


Luke

On Saturday afternoon before heading back to the beach to take Mom out to dinner, Grace and I got some pier time!

And again on Sunday too! Scott even took the day off and hung out with us!

Sunday night was the annual Bulls Bay Labor Day Weenie Roast. This year it was down at Mr. Ken's playground.

Grace slept just about the whole time we were there!

Gigi's Birthday

Saturday night we went out to Tale of the Whale for Mom's Birthday dinner! Dinner was delicious and the fellowship with everyone was wonderful!

Sorry I dont have pictures of everyone there, I so wish I did! For those that came, thanks for helping us celebrate Mom's birthday! :)

Labor Day Update

Happy Labor Day! Well it's hard to believe that summer is coming to an end and fall is fast on its heels. Much faster than I thought with the cooler weather we've been having lately. We got to enjoy a nice relaxing weekend with friends and family and I will post some pictures soon. Meanwhile, I wanted to give everyone an update on Grace.

She'll be 4 months tomorrow. My how time flies. I was talking with my friend Sandi who is due anyday (today's her due date) and she's now having contractions 20 minutes apart (hurry up Jaxon, we can't wait to meet you). Talking with her today, it seems like just yesterday I was anxiously awaiting Grace's arrival and beginning to wonder if each pain or movement I felt was the beginning of labor. While I enjoyed having her all to myself and being able to feel each and every movement, it was the best day of my life when they laid her on my chest and I was able to finally see her beautiful face! And now, here we are, 4 months later. Wow!

We went back to the dermatologist last Thursday and we'll be continuing our current treatments of the propranolol and ointment. Her doctor and I are pleased with the results of the propranolol as the hemangioma seems to continue to not look so "angry" and continues to lighten up some. The new ulcers I had talked about previously are now each about the size of a dime, and there are 3 of them, in addition to 2 others that look like they want to get started. Grace is still uncomfortable when being held at times and especially when her bandage is being changed or we're taking off / putting on clothes. She did have another laser treatment when we were there. So now she's had a total of 5 treatments. She was running a low grade fever as well, so we're keeping a close eye on her. We're not sure if the fever is from some infection in the ulcers or if its "teething" time. We continue to pray every day that she will find some relief soon. Thanks to everyone that has sent us encouraging emails / notes and sent up a prayer for us as well. We love you all!

Tummy Time

Hey you guys! I'm learning to like tummy time more and more now that I can pick up my head and look at some of my surroundings. But I only like it in short spurts. Although I have a ways to go, this is a good start!


But boy does this stuff wear me out...


Love to All! XOXO - Grace

Hemangioma Update

Last Thursday we went back to Duke for Grace's dermatologist appointment. She weighed in at 11lbs. 9oz. and her blood pressure was fine. We talked with the doctor and she was pleased with the way the oral medication seemed to be reacting to her hemangioma, as we can both tell a difference in the color and feel. It seems to be less red (and angry looking) as well as not as raised. She has now been at the target dosage of propranolol for 5 days.

We continued with laser and she lasered the 4 small ulcers that she has as well as one of the older ulcers, but overall those that she's had for such a long time now are looking much better. She has one in her armpit that had really bothering her and keeping her from using her arm like she use to. I was really concerned with this particular ulcer because it just didn't look/smell right. It was like fighting her to get her to lift her arm and that would just make her mad as fire because that spot was so tender and painful to her. They did a bacterial culture on it to send off, as they think it is infected. She has taken us off of our old topical ointment and put us on a new ointment that will help with infection. As of today, that particular ulcer seems to be much better. There is no odor and Grace is beginning to use the arm a little more now.

I found this post online about another baby with an ulcerated hemangioma. She photographed the ulcers at every stage so you can see what one that is ulcerated looks like. I'm not sure what type of treatment she was on though. Ulcerations in the hemangioma are caused when the birthmark grows rapidly, causing breakdown of the surface of the lesion. That's the main reason for the propranolol is to hopefully keep the hemangioma from growing anymore, stopping the growth of any more ulcers!

So, that's all for now! We go back to the dermatologist in 2 weeks.

Here's a few pictures of my Sleeping Beauty...

Grace & Haley

Here's just a few pictures taken a couple of weeks ago that I've been meaning to post.

Fun in the Sun

Well not really, we were in the car but check out these cool shades our Bulls Bay friend, Heidi, sent us along with a cool hat and some socks!

She actually didn't mind them being on her face either! :) (Sorry for the blurry picture, it was taken with my camera phone.)

Hemangioma update: We are still taking the propranolol. Tomorrow we will increase the dosage for the third time and only have one more increase until she's at her target dose. So far the only side effects I see from the medication is that her feet (& sometimes hands) get cold very easily. So I'm keeping socks on her as much as possible. We go back to Duke on Thursday so I'll have more of an update then. As far as being able to tell a difference in the birthmark after being on the medication, the hemangioma doesn't look as swollen to me overall. We're still battling the ulcers though. She has had many more that are creeping up so I'm interested to see what the doctor says about those Thursday!

On a fun note, Grace has begun to coo a lot in the past few days. It's actually like she's carrying on a conversation with you. Maybe I can video tape her and post it to the blog eventually. It's just so darn cute!

Love to all! XOXO