Sunday, October 25, 2009

Cardiology Visit!

Ellie with her cardiology doctor. We love her. She's been there from the first diagnosis with Ellie and we value her opinion. She loves her patients so much and wears her emotions on her sleeve. I almost know what she is going to say when she comes into the room.
When people that don't know her, come up and talk to us, inside I am thinking, "you have no idea how special this little girl is and what she has put the rest of us through."

Cardiology Visit!

Ellie with mom and Grandma keeping her entertained. She actually does pretty good if you have a bottle ready and bubbles.

Cardiology visit!

A little frustrated right now, Ellie is looking so good. We went to her visit and she is clinically checking out physically really well. She does seem to get tired when she plays or is active for very long. But her BNP level is way down. Not normal, but pretty good. And Dr. Everett says she normally doesn't list kids for a transplant until they are in the thousands. We just need her echos to see a change for the better. There is still no change, which if you saw her, you would have no idea her heart was barely functioning. I know that this will not happen overnight but I would like to see the slightest change to know that her heart has a chance to recover. Her next visit they will do an MRI for her tumor and her heart. I have feeling that this tumor is going to be gone from the way the last scans have gone. So instead of doing a cath, they will look at the heart at the same time. If you know how Ellie has giving us the scare of a lifetime during an MRI, we could use some prayers to help us get through this. Just scheduling it gave me the butterflies. I still jump when they come over the loud speaker just to page someone or get a hold of someone. I will never forget feeling so helpless as they called the code blue to MRI imaging knowing she was in there. I still remember everyone running past us to her room and the nurse coming out and yelling repeatedly, "where's the paddles, we need the paddles." You can hear everything, but it's muffled. Everything is in slow motion but going to fast. Dr. Pulchowski came out to talk to us afterwards, and I felt like my eyesight narrowed and I was passing out. My hands and my feet went numb. I was so relieved that she was fine, but physically and emotionally drained. It's amazing after you go through something like that, how you feel like you ran a marathon. Nate and I crashed that night, we never slept so good the whole time she was in the hospital until that night. We know how much prayers are needed and help us. So keep her in mind so we can have a smooth MRI.

Good bye St. George!!!

Well, we have a lot of changes coming to the Cason house. We have decided, kind of hastily, that we will be moving to the Salt Lake area. We have made four trips in September up North. Either for Ellie, or for Nate for an interview. One already in October! We feel at this time, that we need to be up here closer to the hospital during this phase in Ellie's situation. We also have a lot of family that can help us out. We have such an amazing support system. From all our Sis' and folks and friends that dove in to help with out a question. And took on two extra kids all summer. And all our visitors at the hospital that came to watch Ellie so we could escape to the lunch room or go for a walk. We also have a great support in St. George, but there has been many a night that we debated whether to take her to the hospital here or drive to Salt Lake when Ellie chooses to have a rough night. This has been a journey full of twists and turns but I will say that I would rather be on the journey than not. I have a plaque that I got that says, " find joy in your journey." So, I will do my best to make the best of our situation. Good bye seventy degree weather and flip flops year round! I will miss you. The nights with out mosquito's and flying things, good bye. I will not miss you, the tarantula that I found on my porch or the scorpion that we found in our garage that was five inches long. I will miss Tuesday night pickle ball with the ladies and walks all year round. I will not miss cockroaches and the blistering summer heat. We will be back. We have lots of people that would let us stay, right?

Macy on the last day in St. George with her teacher, Mrs. Chadaz. We loved their teachers and were sad to say goodbye to them so early in the year. Macy started to cry which in turn made me cry, which made several of her girl classmates cry. I didn't know whether to laugh or cry some more. The girls and us made some very good friends during our time here.
Adrie and her teacher, Mrs. Hunt on their last day of school in St. George. Adrie loved her teacher and her class. In fact on the first day of school, she came home and said, "that was the best day of my whole life."
Our house in St. George is ninety percent tile. So this walker was perfect for Ellie to scoot around the house in. This is what Ellie did a lot of when Nate and I were packing.

Chillin' like a villian

Showing her flexibility and chillin' with her aunt Jillian. She is always posing for us when we pull the camera out.
Ellie had her eye appointment to look at her Horner's Syndrome. (The tumor that is on her sympathetic nerve caused her eye to droop and be a different dilation than the other.) They give us the dilation glasses and she has worn them every time without taking them off. She kept them on all evening. Here she is eating a graham cracker.