Saturday, October 24, 2009

Capillary Venous Lymphatic Malformation and us

First of all, if you prayed for us THANK YOU! We felt those prayers. I am not going to go into details before the trip because most of you know that Anna Grace was diagnosed with Lymphangioma at 20 weeks. This was a very scary day. At birth we were expecting a NICU stay but our strong little girl would have nothing of it. She was doing great and we came home two days after birth like normal. She has thrived. Nothing has stopped her at this point. Our next step was to go to Cincinnati Ohio for a MRI and meeting with her medical team (and by team I mean TEAM!) They are incredible. So here is the outline of our trip, her diagnosis, and our feelings about it. Feel free to ask questions and I will answer them to the best of our ability.

On Sunday, October 18, we headed for Cincinnati or Cincy as we came to know it. She did so good on the trip up and I was a proud Mama. Sunday was spent figuring out how to get to the hospital and checking into our hotel.

Monday- Anna Grace was fed at 1:30 am for the last time until after the MRI. I expected a major meltdown in the morning but she was terrific. In fact I couldn't get over how well she handled it. Once at the hospital, Adam and I took her back for a check in. She actually fell asleep ( I am telling you the prayers were working!) We were given details for the MRI and then we had to LEAVE our baby awake. It was so hard to walk off knowing she was about to stare at strangers and be scared to death. The MRI lasted two and half hours. Bless her, when she was done she couldn't keep her temp high enough to go home so she got to hang out in a heated blanket thiing. When she saw Adam and I you could see it on her face. It was priceless. She did well all day, pretty groggy but we were able to go to dinner at Dewey's pizza.

Tuesday- At noonish we met with her team. An incredible group of doctors who are in love with my child. Anna Grace was diagnosed with Capillary Venous Lymphatic Malformation. I will break it down for you. Anna Grace has a large wine colored spot on her left side. It takes up her whole side. This is the Capillary side. She also has some blueish markings that are her Veins, hence the Venous. Lastly, the Lymphatic. Her Lymphatic system did not develop completely. On her left side its between her skin and muscluar wall. She also has some fluid internally thru her lower tummy and on her little bottom.

What this means for Anna Grace: For now, she is doing very well. As if, she had no issues. So for now we will monitor her. She will deal with this for most of her life. We will be going to Cincy twice a year for her to visit with her Doctors and will begin Physical Therapy while she grows to make sure she can handle the extra weight on one side.

Many have asked about another child for Adam and me. I did have a tough pregnancy and this has been the hardest thing we have ever dealth with but I can assure you if God has another child planned for us we would be delighted! The chances of another child having this problem is the same chance Anna Grace had, very slim.

Developmental, Anna Grace is right on track. She doesn't have much desire to roll over but can do it. Other than that she is doing great.

Please feel free to ask any questions that I have not answered and we will continue to keep you updated with her progress. Again, thank you for praying! Check back soon for an update on eating cereal and bouncing!

Monday, October 12, 2009

Been Busy!

Ok so I have been a little slack on updating but I am going to get better. Anna Grace is growing like a weed. She babbles on all day and is becoming a busy body. Right now she is screaming her little head off because she wants her Daddy to walk around and bounce her and well he rufuses. If he were to stand up she would stop crying. I seriously need to get this on film. :)

We went to the pumpkin patch on Saturday and picked out Anna Grace's first pumpkin. She loves the outdoors so of course this was a hit!

We leave for Cincinati on Sunday. Everyone is nervous for the trip. We are tying and praying hard to stay well. Our trip was postponed in September due to Anna Grace's first cold. It was hard but I knew it was God's timing. Please be in prayer for us as we make this trip. We will be getting lots of information and it will most likely be overwhelming. I promise to keep my blog, facebook and twitter updated while we are there.

Here is our pumpkin sitting up in bumbo. I think she grew 3 inches the first time I sat her in here.

I am not sure who "won" but AG quit crying and is slowly falling asleep. :) Daddy will call this a victory I am sure!