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.

Monday, April 12, 2010

Go White

Saturday was the annual Orange and White game at Clemson. Of course Anna Grace couldn't pass up a chance to cheer for Uncle Caleb. (Who by the way, had a great game) Anna Grace loved everything. She waved at the players as the ran on the field and especially loved the snowcone she got to try out. Hollywood Not too sure about Uncle C in those big pads.

Friday, April 9, 2010

What do you think?

So what do you think of the new look? A dear family member, Jessi, designed our new look and set up a button that you can put on your blog to direct people here. The main goal is to generate lots of prayers for Anna Grace as we continue on this journey.

Lets face it the next couple of weeks will be diffcult and we will really appreciate all prayers!

Stop by Jessi's blog- so inspirational and hilarious. You won't be disappointed.

On a different note. I am so close to having a mobile baby. Whew. My blood pressure shot up just typing that. Last night was the first time she officially got up on all fours and rocked back and forth with the biggest grin. She is fearless. I love it.

Monday, April 5, 2010

Ressurection Weekend

We had a blast over the weekend. Adam was home from work on Friday and we spent the day planning our garden. Adam had spent a few nights last week tilling and preparing the land for the big day. After much advice on when to plant and when not to we have decided to wait a week. Apparently the ground is too wet from winter! During all this major decision making we went to a really neat nursery that had all the plants we needed plus baby chicks. I really wanted to buy a chicken. How South Carolina redneck is that? I can see me now with 500 chickens roaming around my yard. Don't think it would go over very well with our HOA. At least Anna Grace and I got to watch them play and see a few bunnies. Sweet little things.

I have such great pictures from Saturday but don't have them loaded on my computer yet. Saturday morning was spent at Adam's mom's. Where the Easter bunny stopped off with a few treats. (Side note-Anna Grace ended up with 6 Easter baskets!) We had a great time at the egg hunt and just being with family.

Anna Grace has really started playing with her cousins. For now they see her as being in the way since she is not walking. I have a feeling in a few months they might be in the way.

Saturday evening my Mom's family got together. There is never a dull moment when that group is together. Anna Grace touched her first fish and held her first worm. Mom has great pictures of those moments. She proceeded to stick her hands in her mouth before we could clean them off. Daddy and Pop said a little fish goo was good for her...yuck.

Then beautiful Sunday morning was wonerful. We spent a wonderful morning praising our Lord and fellowshippig with our church family and then spent the afternoon wth more family.

It was a LONG weekend and by last night we had a really tired little girl but it was worth it to see everyone.

Two weeks from today we will be in Cincinnati for the big day. Please continue to keep us in your prayers as we prepare for that week.