Thursday, May 24, 2007

Highs & Lows

Hey everyone! It's been a crazy past 24 hours. Tracee graduated!! We were so proud and she looked so pretty. I can't believe she will be moving out on her own this summer?!! She is going to have so much fun. She is going to be an amazing nurse - or whatever else she might decide to change her major to.

Onto other news, Tuesday night our neurologist called me around 11pm. Both the MRI and the genetic testing results had come in. There wasn't anything the radiologist had to say except for what the doctors can already see by looking at Charlotte. However, the results of the genetic testing officially diagnosed Charlotte with a genetic syndrome called Beckwith Wiedemann Syndrome (the following site is very helpful http://www.beckwith-wiedemannsyndrome.org). This syndrome is the cause of many things, it's why she was premature, its why she was so big for her gestational age, it's why her left kidney is larger than her right and it's the explanation for all the little things doctors have noticed or commented on. She is doing fine and so are we. We now have to go to Emory to see a pediatric geneticist and he along with our pediatrician will begin a regular screening process for Charlotte that she will continue until she's in adolescence. Children with this syndrome have an increased chance of growing abdominal tumors - so they have to have regular ultrasounds to ensure nothing is growing. They already have our first ultrasound scheduled for next Wednesday at Scottish Rite and thankfully the pediatric geneticist at Emory is taking new patients so we have our first appointment with him Aug. 22nd. Other than that she will just be monitored over time and with time her physical characteristics will even out. All of us have to undergo genetic counseling. So this summer is going to be a lot of research and doctors visits!!

I appreciate everyone's prayers for us. I know this wasn't the outcome we had hoped for, but it's good that we know what we are dealing with. We are SO lucky to have a pediatrician, Dr. "May", that was observant and diligent enough to get to the bottom of Charlotte's little intricacies. She was just as disappointed yesterday on the phone as I think we were. It's really comforting to know we are walking through this process with such great doctors that really care about Charlotte. We are very blessed. Thank you again and keep praying for us.

Friday, May 18, 2007

Charlotte's MRI

Hi everyone! Just wanted to write a quick post about the MRI today. Charlotte did great. We fed her the biggest breakfast ever at Waffle House this morning before 8am with eggs, bacon, waffles, toast, grits and sausage. It was a good thing, because she wasn't able to eat or drink anything until 5:50 tonight. She didn't cry when they stuck her with the IV or when they pushed the sedative through (which the anesthesiologist said burns really bad). She didn't cry at all. She's a trooper and the nurses at Scottish Rite are just amazed by her. We will get the results next week (hopefully) and we aren't expecting any abnormalities. This is just a standard test the neurologist ordered. Thank you for your thoughts and prayers.

Wednesday, May 16, 2007

Hectic Blessings

It's been a hectic past week but a wonderful one. Laura-Kate is perfect. She never cries or fusses, she loves to cuddle, she slept through the night last night and she is just beautiful. Kelly is doing an amazing job, she is so relaxed and just glowing. Rick is even doing well. He and Sarah-Grace were left alone today with the baby and they changed a dirty diaper together with no help. They were very proud.

Last week we spent a lot of time at the pool. We love our new pool. Sarah-Grace is swimming everywhere with her swimmies on and she goes right down the water slide. Charlotte is a crazy girl. She refuses to go in the kiddie pool. She will latch on for dear life if you try and wade her out to the "deep" end (a whopping 1 foot) where the mushroom is. But, put her in the regular pool and she screams for you to let her go she can swim by herself. She even wants to go down the water slide. She gulps in a mouthful of water and comes up coughing and choking (a sign that most children take to mean they are drowning) and she just squeals and plunges her head back underwater.

Tad was Scoops again last week at our Bruster's fundraiser. He spent 3 hours in a huge waffle cone charater costume in 85 degree weather. Sarah-Grace was so proud and excited. She hasn't stopped talking about him doing this since last year. Charlotte was freaked out the entire time. We even showed her Tad's face in the costume and she still didn't want anything to do with him. She kept asking when "Tad" would be there. She didn't even like me speaking to Scoops.

A few more updates, Charlotte has started saying "actually" all the time. For instance, when I asked her if she had snack at school today she responded, "actually, I had goldfish". Sarah-Grace went to the dentist for the first time on Monday. She did a great job. She went all by herself and never asked for Tad (even during x-rays). She got a diploma for doing such a great job brushing everyday and now she's obsessed with flossing.

Charlotte has her MRI on Friday at 2pm. Please pray for us (mainly for the fact that she has to fast for 6 hours beforehand - no fun during lunch). We have at least 3 more weeks until we get any results from the genetic testing. We're just waiting.

Sunday, May 13, 2007

Laura Kate

Hi everyone! Laura Kate was born today, on Mother's Day. A very fitting gift to a very deserving couple!! Here are a few pictures...