Tuesday, March 30, 2010

Baby Steps!!!

We are feeling great joy right now. In more ways than one. Ellie had her heart echo last week. And the result is that we are seeing a slight improvement. Her injection fraction went from 17% to 19%. They are not really seeing improvement month to month, but looking back from October is where they are seeing a difference. This is a big step considering they didn't think her heart could show improvement this far out from her surgery. What does this mean for Ellie? Well, we continue on the wait and see road. They would like to see her I.F. get above 26% so that as her body grows, her heart can keep up with her. In the meantime, this gives us the time we need to get the tumor to go away. And we hope and pray that it will. If she does need a heart in the future, we need her tumor free for a year. So while we wait, we take baby steps, hopefully in the right direction. Down for the tumor and up for the heart. Man she is complicated. But she continues to melt our hearts and can make anyone smile with her cute sign language and babbling words like "ta-choo" for thank you and how she says "ahhhhhh" after she pretends to take a drink. She needs to be on the coke commercial. She also puts her hand up in the air when the grandfather clock strikes the hour and taps out each chime. The cutest is during prayer, she bows her head, puts her finger to her lips and says "sshh, sshh, sshh" the whole time. It's funny what they pick up, even when you don't realize that your doing anything.

On another "baby steps" note, our little Ellie is starting to walk!!! She's got the arms in the air, and looks extremely unsteady on her feet, but she is doing pretty well. We are trying to savor these next few weeks and days before the new baby arrives. Ellie might have a fun time adjusting to not having all the attention.

Saturday, March 13, 2010

Reality Check!!!

Wednesday night, we spent the evening in the hospital with contractions that were every three minutes apart. It kind of hit us that we are really not prepared for this baby. Ellie has been a great distractor for this pregnancy. Even though she is not due for another six weeks, so many things ran through my mind. Including that we have yet to find a double stroller, get Ellie moved to the other room, buy a car seat, and oh yeah, we HAVE NO NAME! We have always gone to the hospital with a couple names in mind that we really like, but nothing is sounding right. So here is where you come in. I need suggestions. Any suggestions will be very helpful. We have a few that my kids put on the list and and few that Nate hasn't totally said "no" to. So thanks to Mimi, she gave me this idea. We are going to have people help us with the naming process. But to make it a little interesting, we are going to throw in a little incentive. There is a surprise if we choose a name that you suggested. And you get the honor of helping us make this difficult decision. In a few days we will come up with a short list and do a poll to see what are the favorites. Thanks for your help!!!

Thursday, March 4, 2010

Good News!!!

Ellie in her cute hospital scrubs waiting for the MRI. We were supposed to be starting at nine and here it is almost ten. Not bad for having gone without food since midnight. She kept rolling her stroller back and forth in the tiny room.
Ellie can't resist something to climb into. Any drawer or box or basket is where she wants to be.

We had our MRI yesterday for the tumor in Ellie's neck. She did well with no hick-ups. We waited anxiously till they called us and informed us that the tumor appears to be shrinking again and that the lymph nodes that they were concerned about are back to their original size. (They were concerned because the lymph nodes were only enlarged on the side of the tumor, so they were worried the tumor was spreading). Yea!!! This is a big step for Ellie. We recently talked to Dr. E, our cardiologist, and discussed the tumor issue. She said that they won't list any kids for transplant, unless they are cancer free for one year. But unless the tumor is removed, they still don't know for sure if it is a neuroblastoma. They think it is, but a biopsy must be done to know for sure. We are just hoping that it goes away completely so that we can focus on her heart. If she needs a transplant, I want her to have that chance. It's hard to sit back and wait. That's what we have done since she was two months old. Thank goodness for the advancements that have been made. And the six medications that she is on right now. It is hard for me to think where she would be if she were born even five or ten years from now.

On another note, after being intibated yesterday, she is really struggling with her airway. She sounds awful! I feel so bad for her, because this happens every time she goes under general anesthesia. We deal with about two weeks of raspiness and coughing and throwing up till her throat gets better. I wish there was an easier way.
Ellie had another pass out last Saturday night, and the interesting thing is that she had her synergis shot five days earlier. I wondered about this when she was hospitalized last month for this. Looking back at her calender, she has been passing out four to five days after she is getting the synergis shots since November. They usually last for a few days and then we don't get another one for about a month. It's sure a big coincidence if they are not connected. I do think it has helped to have her on iron, because she only had one so far this month.

Anyway, we will take the good news for now and hopefully get more good news at her next cardiology visit. Thanks everyone for all your prayers. They truly lift us up and carry us through days like this.

Tuesday, March 2, 2010

Ellie's MRI tomorrow!

After being delayed a week, due to some scheduling problems, we have gotten Ellie four weeks with no illnesses. She's ready for another MRI. Yuck and yeah and the same time. I always dread MRI's! Her last one went pretty well so I am praying that this one can be uneventful. This one is just for her tumor. Dr. E thought since we have an echo soon, that they did not need to worry about the heart this time around. If you could please keep Ellie in your prayers and also the doctors so they will know what to do with the tumor. We hope that it is shrinking again. We will update you as soon as we can.