Duke and My Beautiful Girl

3 1/2 months. I can't believe she is getting so big! This week we took Grace to Duke and saw a pediatric dermatologist. Here is Daddy and Grace being patient in the waiting room. After our appointment we walked around the Duke Gardens, beautiful!



Here is the letter I sent out to our family and friends giving an update on how the appointment went:

Hey Family & Friends,

Wanted to write and let you all know how the doctor’s appointment went this morning. I know some of you have already heard, but it’s good to get it in writing! Obviously this is our first time dealing with this kind of situation, so if there are any questions you can think of that we should ask the doctors or thoughts about the treatment plan, please feel free to send them!

First, the doctor at Duke was wonderful! She is the head pediatric dermatologist there and she knew what she was talking about! Not only was she a wealth of knowledge but she was also very cute interacting with Grace. Grace could not get enough of her, she just talked to her the whole time we were there! That made us feel good.

On to the important stuff: There are two different types of hemangiomas both types can be superficial (just the red on the surface) or deep tissue (the black/purple underneath) or a mixture of both.

The first type of hemangioma is present at birth (the one on Grace’s back/shoulder) This hemangioma on Grace is a mixture of the superficial and deep tissue kind. These hemangiomas either go away very quickly (with in the first year of life) or they are permanent and require “cosmetic” fixing. It is too early to tell which one Grace’s will be – but I am guessing the permanent one as it has gotten bigger since birth.

The second type of hemangioma presents its self within the first weeks to months of life (the one on Grace’s nose) This hemangioma on Grace is just a superficial one, only on the outside of the skin. These hemangiomas will grow much bigger before shrinking down, however they will eventually shrink down. The problem with these hemangiomas is that once they shrink down often you are left with extra skin/scaring.

In order to prevent the nose hemangioma from growing much larger (blocking the nose opening, or creating extra skin/scaring) we are going to go ahead and start treatment. We actually will do the treatment on both hemangioma even though the one that is a concern is the nose. The treatment we are starting is a topical ointment that we will put on Grace’s nose and back twice a day. We take two drops and rub it into those areas. It is actually a kind of eye drop that they have found works on hemangiomas, although at $40 for a tiny bottle, it better be amazing!

If we do not see improvement on the hemangiomas by our next appointment at Duke on February 15^th, then we will switch and begin an oral treatment. The oral treatment is actually a blood pressure medication that they found works, however it comes with additional problems. 1. We will have to monitor Grace’s blood pressure to make sure she is not having a negative reaction. Keeping up with blood pressure on an infant is challenging, they wiggle a lot. It took us three times at the doctor office before we finally got a good read! 2. We would have to keep up with Grace’s blood sugar levels. If she is eating normally then all will be fine, however if she doesn’t get enough food in her belly, her levels could drop with the medication, which would bring on a whole set of its own problems. 3. There is some rare thing that can happen to their heart if they have a certain, hard to detect, heart problem. So, before going on the medication we would have to do an ERG. Basically they would put pads on her chest and listen/look at her heart rhythms.

Ideally we will see progress with this ointment we are using and quickly so we don’t have to go to the other treatment plan. However it’s nice to already know what to expect. Again, any additional thought that you all have please feel free to share!

Thank you for all your prayers and thoughts!

Kendall, Gabe, and Grace

So many different angles of this little face and every one adorable! I am so glad that I get to spend the rest of my life taking pictures of this little girl.

On Friday Auntie Jen and her boyfriend Seth came over to visit. They were both at Grace's dedication so it is fun for them to get to spend time with Grace as she grows.
This picture was actually taken two weeks ago when Mimi was actually here visiting, but I wanted to put it in this week. Mimi's Birthday was on January 27th, here Grace is holding her gift for Mimi. She gave some yummy blueberry tea! Notice how she is holding the bag ALL by herself!
More pictures of my sweet girl. She is sooo serious, it cracks us up. We think half the time she is wondering whether or not we are crazy, which we are! One thing is for sure, she will know how much she is loved.


We love you Grace Jacklyn. Can't believe you are getting so big! We put all your 0-3 onsies away this week. You still fit in most of them... but Mommy was ready for a change! You still wear your 0-3 pants, I think those will be out for a while! Also we heard your first consonant this week! You said "gggg" Of course that makes sense seeing as how you hear "Grace, Grace, Grace" all day long. Can't wait to see how you change this week.

xoxo

Mommy & Daddy