Monday, June 21, 2010

Happy Fathers Day

What a great Father's Day weekend! Friday night, the three of us just hung out. Adam went to visit Papa Burgess and by the time he was home Anna Grace was asleep. But on Saturday she was full on ready to play with Daddy. She still felt a little sick from her shots and the fever she ran but overall she was better. Saturday evening, Aunt Sammie and Uncle Caleb came and kept Anna Grace so that Adam and I could go out on the town. :) We ended up at Fuddruckers and then went to see Toy Story 3 in 3D. I was a little disappointed in the 3D moments but overall a cute movie. Although it was both mine and Adam's least favorite of the three the storyline was nicely finished. Sunday morning, we celebrated Adam and what a great father he is. Adam and Anna Grace enjoyed playing with Adam's present-golf balls. They throw them back and forth to each other. Pepper enjoyed this game too.

My parents came over and had dinner with us. Adam BBQ so some chicken and we had baked beans, cornbread salad, and chips. Then brownies and ice cream for dinner. Anna Grace loves vanilla ice cream. Lately I can't feed her enough of anything. She could eat her weight in Pineapple. Its amazing.

We gave my Daddy a ipod suffle for Fathers Day. He isn't very technilogically savy so we went easy and small. He LOVED it. I thought he would like it and all but he was thrilled. It was quite funny.

I am so thankful for my Heavenly Father and earthly father. I love them very much. Its been so fun to watch Adam over the last year. Last year Anna Grace layed in his lap all day to watch the US open and this year she was all over the place. What a change. Adam has and continues to be an incredible Father!

Wednesday, June 9, 2010

Happy First Birthday Anna Grace

Saturday was Anna Grace's birthday party. We had such a wonderful time. It was definitely overwhelming for Anna Grace at times but over all I think she really enjoyed it!

Enjoying a ride on her new buggy

She ate her birthday cake like she eats cheerio's. Very girly. She didn't stuff it in her face but she definitely knew it was food!

Enjoying the outdoors before the rain started.

It was such a fun day and we are looking forward to celebrating tomorrow as well! If you follow me on Facebook there are a lot more pictures!

Wednesday, June 2, 2010

Crazy Eights Challenge

Ashley challenged me and since I am procrastinating and not doing things for the birthday party right this minute I thought I would take this challenge!

8 TV Shows I watch:

1. Grey's
2. 19 Kids and Counting
3. Young and the Restless
4. Mythbusters (only with Adam)
5. Kate Plus 8 (don't judge me)
6. Seasame Street (only with AG)
7. Tori and Dean
8. Biggest Loser/ Jillian Michaels New show

8 Favorite Restaurants ( I can't eat most of these on a regualar basis but they are still my favorite. )

1. Bronco's Mexican
2. Sonic
3. Melting Pot
4. Pizza Inn
5. Joy of Toyoko
6. Myabi (sushi)
7. Zaxby's
8. Olive Garden

8 things I look forward too

1. 5:00pm everyday- I love evenings at home with Adam
2. Returning to teach dance in the fall
3. More babies
4. Watching my baby grow
5. Watching my children come to know the Lord
6. Going to the Lake
7. Growing old with Adam
8. My sister's wedding

8 things I did yesterday

1. Slept until 7:15-thanks Anna Grace
2. Went to Walmart
3. Found Dr. Thunder 4 for a $1.
4. Did 3 loads of laundry
5. Cleaned my drip pans in the stove
6. Went to see Papa and Grandmama Burgess
7. Listened to the birds that are in my ferns
8. Ate a cheeseburger from Burger King-big mistake

8 things I like about Winter

1. Christmas
2. Christmas Trees
3. Hot Chocalate
4. Lumanaries at Christmas on Limestone
5. Cuddling
6. Anna Grace in footie PJ's.
7. Snow
8. Christmas Carols

8 Things I am passionate about

1. Jesus
2. Adam
3. Anna Grace
4. My family
5. Dance
6. Cleaning...:0
7. Learning to live with a chronic disease
8. Lymphatic malformations

8 words/phrases I use often

1. NO, Anna Grace
2. Crap- this one has to STOP before someone learns that word.
3. I love you
4. What does the (blank) say? (to Anna Grace)
5. Hey babe...
6. Patty Cake Patty Cake (you know the song)
7. Gotch ya.
8. Leave it (to Pepper)

8 things I have learned from my Past

1. God is in control
2. He is good.
3. He is all knowing.
4. I can't control any thing
5. Adam is overwhelmingly patient.
6. I am not patient.
7. I am capable of handling way more than I thought
8. Needles aren't that bad.

Places I want to see/visit

1. Holy Land
2. Ireland
3. West Coast
4. Maine
5. Africa
6. Texas
7. Spain
8. Italy

8 things I need/want

1. A weekley pedi
2. A monthly massage
3. Someone to take the wallpaper down in my kitchen and guest bathroom
4. a Cure for Lymphatic malformations
5. A cure for Chron's disease
6. a good exercise routine
7. New tap/ballet shoes
8. more time with our families

I am not tagging anyone. So feel free to do this if you want!

Tuesday, June 1, 2010

My apologies

First off, we are sorry we haven't updated with the end of AG's journey to Cinci. We just aren't ready to go into full detail and honestly are still processing alot of it. Its not that its terrible news but parts of her diagnosis are very hard to explain and we just don't know how deep we want to go yet. Mainly because you might already be confused by her general diagnosis and this will confuse you more. It did us. Lets leave it at this for now, Anna Grace's Lymphatic condition is so rare it falls under a specific condition only found in about 50 people worldwide. I have always told her she was special. :)

Back to blogging we go. Hopefully soon we will have an easy way to explain more with AG.

As for Memorial Day weekend-we had a blast. Adam and I left Anna Grace with my parents for Friday night. Since our six year anniversary was on May 22nd, we decided to go to Gatlinburg for the night. It was so relaxing and just a wonderful time for us to be together.

On Saturday, we ate a nice lunch and then had our couples massage. Adam was pretty nervous about this expereience. But my assumption was correct. He loved it.

While we were living it up in Gatlinburg. Anna Grace was at Lake Lure with my family. She enjoyed her first boat ride.

Uncle Caleb was a great and held her incredible tight. :) She looked so cute in this picture. In fact when my Mom texted it to us at dinner Friday night, I cried. Right in the middle of the restaurant. You would have thought I had never left her.

After our massages, we drove back to Lake Lu (as we call it) and finished off our weekend.

Sunday we all went out on the boat to tube. Unfortunately that was cut short. We were pulled over for not having a permit. Since Lake Lure is private the new boat to come off the water until we could get a permit. I guess this was Anna Grace's first experience in being pulled over. By the way, its interesting being pulled over in a boat.

Here are few more pictures of our trip!
Caroline showing off her skills Sunday night. We love that big old bed. Caroline, Sally Ann, and I had been curled up there for awhile. You can see a few of us were kicked out but C found her way back.

The River bridge in downtown Chimney Rock-Sandra, Justin (liz's fiance) Sally Ann, AG, and Pop Pop's.

Downtown Chimney Rock really doesn't have much to do yet every trip we find ourselves back downtown. However it is worth it to go get a sack of candy from the Mass Genereal Store.

Big week ahead-Anna Grace's birthday party is Saturday. Can't wait!

Thursday, April 22, 2010

Thursday in Cincy

Yesterday was long. We had a set of X-Rays of AG's spine, an MRI of her lower spinal region to specifically look at the lymphatic issues in that region, met with an orthopaedic surgeon, and met with the lymphatic malformation team. All of that to add to the information set the neurosurgeon wants in order to make am informed decision on the proper course of action.

We have one more specialist to see who isn't available until Friday afternoon. That is very frustrating, but since we can't do anything about it...why worry! After meeting with him, I am going to push for another consult with the neurosurgeon to interpret all of the tests and consults and decide on a course of action. The bottom line is that if we are going to proceed with the surgery, we will stay here as long as necessary. If surgery is not the best option right now, I am ready to get back home.

You may have interpreted by the first two paragraphs, but we are nothing more than tourists today. No appointments at the hospital. Today is Emily's mom's birthday, so we are going to take her for a nice lunch. Also on the agenda is a trip to the aquarium and dinner with Den and Barb (Upward Sports contacts in Cincinnati). I hope that a relaxing day today will help us all manage the next push of appointments and decisions. I for one am on edge.

Tuesday, I called the Holiday Inn Express to cancel a reservation we had made for the others ones coming up to be with us during AG's surgery. I ended up in a confrontation with the manager on duty that I am still sorting out. Yesterday, the visit with the orto surgeon did not go well. He was an arrogant jerk and left the room before I could tell him that. I told his nurse, filled out a formal survey on his lack of professionalism, told our neurosurgeon's nurse that he would not be assisting in AG's surgery, and generally let anyone who asked know how disappointed I am with him. (Then I had a dream last night that I had a mulligan and told him off in the exam room!) Finally, right after that experience, I went to order a cheeseburger in the hospital cafeteria's grill and I got snippy with the poor lady taking my order. It is DEFINITELY time for a little break to unwind!

Tuesday, April 20, 2010

Not as much to share today…which in my humble opinion is a very good thing! We only had one appointment today and that was with the anesthesiologist (just in case we proceed with surgery).

My mom flew in today, so we picked her up at the Cincinnati airport and then we all went to the zoo. While there, I spent a lot of time on the phone with doctors and nurses plotting and planning tomorrow’s itinerary. So here is tomorrow…

10:30am - X-Rays
11:00am - MRI
1:30pm - Consult with Orthopedic Surgeon
Late afternoon - ????
Evening – Dinner with Den and Barb (Local contacts we made through Upward Sports)

After those scheduled appointments, we hope to also meet with the Plastic Surgeon who has been out of the office with food poisoning all week. Finally, we are trying to get an appointment to see the lymphatic malformation team that we have seen here a few times in the past 6 months.

Once all of the above consultations and tests have been completed, we will meet with Dr. C (neurosurgeon) to make a final decision on this visit…surgery or no surgery.

I know I have said this 1000's of times, but thank you so much for the continued prayer and support! Today was a very relaxing and peaceful day. Tomorrow will be a grind. Please pray for Anna Grace as she will be sedated for the MRI. She has always done well, but it is hard not eating for half the day and feeling groggy after sedation. Continue to pray that we make the right and best decisions for her care.

I will leave you with a great picture that capped off the day. Thanks, Doug, for tipping me off to Buca Di Beppo! Good night for now!

Monday, April 19, 2010

Update from Cincy

Well, today didn’t exactly go as planned…but that isn’t necessarily a bad thing. As most of you know, we are in Cincinnati for our daughter, Anna Grace. The plan was to consult with the pediatric neurosurgeon today and he was going to perform a surgery on her to remove a lipoma (fatty growth) from her spine.

We met with Dr. C (the neurosurgeon) and his team at 1pm this afternoon. He performed a fairly general physical exam when he got into the room by checking the sensation on the bottoms of her feet, examining her back and spine, and getting some basic information on her overall health. Then he took us into a room with a huge flat screen TV to go over the MRI films. I will try not to get too medical in my descriptions, but bear with me.

Typically, if someone has a lymphatic malformation (external swelling/fatty tissue) on the outer portion of the body and a lipoma internally, there will be some point where the two are connected. It is so rare that the two don’t connect that Dr. C didn’t fully trust the films when he saw that AG’s didn’t connect at any point. It wasn’t until the physical exam that he was sure this was the case. You may have heard Emily or I talk about the spinal cord being tethered to this area…well the point of connection for the lymphangioma and the lipoma would have been the point of concern for tethering. Since hers don’t connect, that is not a concern. As it turns out, the tethering in her case is internal. This has its own set of concerns, but it is not really vital to do anything about that right now.

So with all of this in mind, Dr. C is not sure if we should proceed with the surgery right now. His major concerns are cutting through the lymphangioma to get to the spine in order to remove the lipoma could cause more trauma and issues with the healing process than the good that would come out of removing the lipoma. The lymphangioma at the point of entry for surgery is just over 1 inch thick. The possibilities for complications during the healing of this area are vast.

With “Plan A” on the ropes, the newly formed “Plan B” is taking shape. We will meet with the Anesthesiologist tomorrow (Tuesday) at 9am just in case surgery still takes place later this week. Then, sometime between Tuesday afternoon and Wednesday, we will meet with a plastic surgeon that will assist Dr. C with the concern of lymphatic healing. Also, there is a good chance that AG will have another MRI to focus on some specific areas that the last MRI didn’t fully cover (that MRI was specifically focused on the spine and not the areas currently being discussed). While we are here, we are also going to try to touch base with the lymphatic malformation team that we have seen up here before. All in all, there are a lot of decisions yet to be made and a number of tests and opinions to be sought.

Please pray for us to make wise decisions and for our team of specialists and surgeons to continue to keep AG’s best interest in mind. Also, pray for us to have the resilience to stay the course. Finally, pray for rest. Traveling is hard on AG and Emily. God IS in control and he knows way more than us what the diagnoses and outcomes are! As information continues to become available, we will update the blog.