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

PJ's and Caleb

This week was a busy one! Grace is growing up a storm! She is spending more and more time in a seated position. She still needs help to support herself. If you let go she just falls over... not that I've done that. hehe. She still spends lots of time on her belly and on her back looking and grasping things above her.

Lucky for Grace she got to hang out with her best friend (and future husband) Caleb this week! They got to see each other many times and it is fun to watch them start to recognize each other. My favorite is when they smile at each other! It is just so cute!

We also went to a huge kids consignment sale in the area called Kids Exchange. We were looking for big items for Grace's 1st birthday and Christmas, yes I know. I still have 9 months before that happens, but its good to be prepared! Here Daddy is sitting inside an awesome teepee that we got to put in Grace's room. Don't you think it will make a perfect reading nook?? Don't tell Grace - we want it to be a surprise! =)
Uncle Taylor got Grace a really cool chalk board for the playroom! It is a window and the panes are painted with chalk board paint. It fits perfect and its for a good cause! The girls who made it were selling different crafts to help pay for their mission trip to Kenya this summer! Not only does it look great, but its supporting missions. Thanks Uncle T!
Oh Hemangiomas. I wanted to get a good shot of the one on her nose. You can see it here on the left side (her right side) It is the tiny redness that looks like she has scratched herself or has a runny nose. The hemangioma itself is pretty small, but after reviewing the pictures the doctors at Duke want to take a look themselves. We have an appointment at Duke Children's tomorrow morning where we will meet with their pediatric dermatologist. I believe she wants to take some scans of Grace's upper nose and throat. The concern is that the hemangioma might have a tendril that is attached to a larger hemangioma inside her nose/throat. If it were to get larger, as they do, then she would have trouble breathing. Obviously this is something we want to find out about as soon as possible. Next week I will share what the doctors decided on for treatment after reviewing the scans.

The next few shots show her little neck! We always knew there was a neck in there, but now we are actually starting to see it on a more regular basis! Isn't it cute!?!

Above you can see the back of Grace's head. She is really starting to roll and move! Consequently this means she has rubbed the hair right off the back of her head! We think she makes an adorable Friar Tuck!

Below are our series of pajama shots. I realized that I almost never take picture of Grace in her PJ's and she has so many cute ones. I tried taking a picture each night of Grace ready for bed. Remembering to do this 5/7 nights is pretty good for me.

Good night room, good night pillow, good night pajamas and good night Grace.




We love you sunshine. Keep growing sweet girl and we will keep trying to do the best we can raising you. We are so lucky to have you.

xoxo

Mommy & Daddy

1-17-12 Mimi's Here for a Visit

My smiling sweetheart! Lots of exciting changes are going on this week! We weighed Grace using our "at home" method. This means Daddy steps on scale holding Grace, then steps on scale alone and we subtract the 2 weights to get what we think Grace weighs by herself! This week she came in at 11 lbs 6 oz! This still puts her somewhere between the 10% and 25% which is where she has been since she was born! She is growing beautifully!Grace is really starting to show recognition of certain faces. She loves when people talk to her and look her straight in the eye. She is sure to give a big smile if she likes what she sees! =) She is also just as likely to look at you like you are slightly crazy. hehe
This week we went to our new Penn Station located less then 2 miles from our house. This pictures is for you J-Pa. J-Pa told us 3 years ago that Cary had almost everything he needed to move here (the kids and Panara Bread) and that if we got a Penn Station he was packing up that day... well its open now J-Pa! =)
Grace is really starting to experiment with her hands. She loves to grasp hold of things and then let go of them. She can also pass them back and forth between her two hands. She still does not seem to intentionally grab hold of something, but once she has it she knows what to do!
We also got to try out our exersaucer this week! Grace is starting to do a lot of sitting with the assistance of pillows or Mommy. Notice that we have to put the boopy and some blankets under the floor of her exersaucer so that it is high enough she can reach it with her toes! That is right, she is still in the bottom 10% for height. We just love her, every tiny bit!
I downloaded some new photo editing tools and I had a lot of fun playing around with them this week. Here are a few examples of how much fun different shading can be!

Love her eyes in this top one. They are breath taking!

Mimi and Grace hanging out - the top picture is the original. Underneath I changed it over to sketching. I love both! =) It is so wonderful to have the time to watch Grace and her Mimi! It only takes Grace a few minutes to remember Mimi's face! I always tell her, when you were only a week old you spent hours sleeping on your Mimi! =)


MMMM I love this girl! It makes me want to go wake her up from her nap and kiss her! But of course, I will resist! hehe =) Speaking of napping we love Grace's new schedule. It looks like this:

6:00 - 6:45 - Grace is up feeds, diaper change, short play in her room singing songs and looking at books

6:45-9:00 - SLEEP! (Really finishing up her night time sleep)

9:00-10:30 - feed, diaper change, usually running errands with Mommy, we go to Kroger, the library, over to see her best friend Caleb, other lunch dates!

10:30-12:00 - Usually we are still running errands but by this time Grace is back asleep.

12:00-1:30 - feed, diaper change, playing in the playroom

1:30-3:00 - nap!

3:00-4:30 - feed, diaper change, playing with Daddy!

4:30-6:00 - nap!

6:00-8:15 - feed, diaper change, playing in playroom, bath, reading books, praying, feeding again

8:15-6:00am - SLEEPING ALL THROUGH THE NIGHT! YAY GRACE!
Lots of playing with Uncle Taylor and Mimi! Grace is one lucky girl to get so much love.
Here we were playing around before heading to church on Sunday. I just love this little outfit and shoes! Of course the shoes didn't make it to church, she kept kicking them off, but she is so cute!

Well we pretty much thing Grace is perfect! Clothing update: She is still wearing all her 0-3 month clothing. The only thing we have really switched over is her PJ's - she in now in her 3-6 month PJ's but they still look a little big. =) Keep on growing sweet girl. We love you so much!

xoxo

Mommy and Daddy

3 months!

Can't believe it has been 3 months with the sweetest gift one could receive. We thank God everyday for our little miracle. She is growing so fast! The official 3 month mark is tomorrow 1-11-12, but we wanted to post her 3 month photo shots today.

She was moving and shaking almost the entire time we were trying to take pictures! We were thrilled to get a few where she is almost still! We think this one is a great representation of how much she MOVES now! She is always rocking and rolling! Look how big she is compared to her pink teddy bear? In her one week photo she looks only slightly bigger then the bear. Now she is three times the size at least! Such an angel.
Our sweet baby G!
Look at those cute toes! We love how she curls up those toes. SOOO impressive! =)
She is really starting to grab at everything! Here she caught hold of my camera cord and would not let go. hehe
reaching, reaching, reaching!

HEMANGIOMA: An abnormal buildup of blood vessels int he skin or internal organs. Grace was born with two hemangiomas. One on her upper back near the shoulder blade and one on the bottom of her nose. Hemangiomas are supposed to go away on their own sometime in the first 5 years of life. We were told that it would look worse before it got better, but with the recent deepening in color (almost purple in the center and around the edges) we decided to take her to a dermatologist just so get a plan in place! Apparently the fact that the color is turning darker is a good sign. It means it may be getting through the worst part. Mommy and Daddy felt very good because they took measurements and pictures of both hemangiomas so that they could compare when we go back in four months. Here is a picture of the one on her back. AND as a bonus you get to see her cute bottom as well! hehe (sorry Grace... I couldn't resist)

Bath Time!! Look at that curl!

We love taking pictures of our girl giving her smiles! 1, 2, 3, SMILE!
SMILE!
and more SMILES!
All in all it was a wonderful week! We enjoyed relaxing and getting back into our normal routine. We also started going from 8pm-6am with no feedings during the night time! YAY Grace! She does wake up once a night but usually falls back asleep within 20 minutes. We are hoping soon that she will go all night without waking up at all!

We also finally got Grace rolling over! She has been doing it for a week or two, but finally we got it on film! Next step... winning the winter Olympic ice skating competition! =)

We love you Grace. Happy 3 months. We are so lucky to call ourselves your parents.

XOXO

Mommy & Daddy