Thursday, January 13, 2011


This was an exciting moment for me. Ellie has not watched T.V. at all, and for about ten minutes, I caught her soaking it in. This would be useful for echos and other moments that even ten minutes here and there would be priceless. I know some of you are probably thinking that it is totally wrong to have our kids watch t.v., but it would be nice for a few minutes in a day. I just think this moment was so cute with Claire even being glued to the t.v.

My girls usually start every morning off with a bottle. Ellie's has one of her meds in it so that's why she still drinks a bottle.

"She is nick named "Smiley" for a reason. She is so proud of her accomplishments.

One of the very few with them all looking at the camera. I took about two dozen of this pose and this is the best I can come up with.

Meeting daddy for lunch. Ellie has to have a hat on just about everywhere we go. She's especially attached to this blue one. So if you see us and it doesn't match, no I am not color blind.

Claire wearing an adorable hat her cousin made for her.

Wow, those pictures are totally random, along with this post, but what the hey! It's been a while I know, but I do intend to go back and fill the events of the last few weeks. I have jotted down all my days of being thankful, I just need to get them on the blog. It's been a little crazy with the holidays. My mind has been spinning lately and I have been a little on the "thinking side." I feel like I have so much to do. But Claire has been sleeping so so so poorly lately I am just too exhausted to do anything else. Lately, I feel like it is a victory to get out of bed and get us all dressed for the day. It absolutely amazes me that Claire can get up and act like she has all the energy in the world. Why can't I do that. I really should be sleeping right now but I wanted to see if any of you have any advise. (I sure hope that someone still reads my blog after my lack of posts.) ;)
We had a great Christmas, with a few minor bumbs. Including a trip to the E.R. for Claire instead of Ellie. I feel like the worst parent ever. It involved a waffle iron and a hanging cord and a permanent triangular shaped indent in her head. Luckily no permanent damage or bleeding on the brain. Just a permanent scar on my heart for allowing this accident to take place under my care.
We also had a record breaking night on Christmas eve after putting together a thousand piece doll house. Fun times Eh! We ran out of time to finish the doll furniture that I was making for Adrie. So we put it in a box along with the ribbon and flowers and when she opened it, I said "cool, it's one of those kits that you get to put together your self." She lit up like a Christmas tree and thought that was the coolest gift ever. Now she can't wait to put it together herself. Score!

I wanted to give a little update on where we are at with Ellie. On the last Cardio visit, most everything went well except for her valves are leaking more than the last echo. We know that some day she will need her valves replaced, but we are hoping that is way down the road. This caught me off guard because she has been slightly improving the last few visits. Also, her blood pressure has been consistently high. So they ended up increasing her meds. Not a big deal, or so they say. But this is where my worries kick in. A week later we go to her pediatrician to get her $7000 shot of synagis. (Thank goodness for insurance.) And the Dr. noticed that she heard her heart murmur really loud when four weeks ago, she barely heard it at all. Plus, in the middle of December, she had two weeks of totally random vomiting. With no symptoms of being sick. (sign of heart failure) I am not so sure what to think, but cardio doesn't think they need to see her unless her symptoms get worse. Can your heart fluctuate between good and bad like that? I know that because of the cardiomyopathy, there is always the chance she will need a transplant. I know I worry more than I should, but it's hard not to after what we have been through with her. She has never chosen the path of least resistance in this battle. Then I worry that the cancer is still there and we are not doing anything about it. I came across a blog today with a kid with the same cancer as Ellie's. A neuroblastoma. I don't know a whole lot about this cancer, except for what I have researched online. Which I don't recommend. It can be quite scary. He has been fighting this battle for four years since he was two. And has been pretty successful until recently when the cancer keeps coming back. It is such a rare cancer and it is a childhood cancer so not a whole lot is known about it. I wish I had a magic magnifying glass that I could peek inside her body on a daily basis to see what it's doing. I know they say the tumor has been stable, but how do they know it's going to stay that way. I took this quote from this boys dad. "No matter the words chosen by our doctor, this was the question. Surrender to an enemy that is too much of a coward to fight an adult like myself, but rather it looks to steal our small innocent son." I wish this was a battle that we could help our kiddos fight. But it is their bodies that have to fight on their own. Every once in while, I am reminded that we have that cancer lurking in the background. On the news today, there was a story of a fifteen year old athlete that just lost her fight with cancer. Cancer Sucks!!! I hate that anyone has to go through this let alone all the kids that have to fight this disease. I have felt from the beginning, let it be my fight, not hers. Same thing with her heart. She's too young to deal with a failing heart. I will get over this funk and be back to my same self soon. I promise! I will get to that happy place and live in the moment instead of dwelling on the what ifs. I just hate to see an innocent child loose their life early. I have seen too many recently that have lost their battles. I want to stay on top of Ellie's. I do know that having an MRI every day is unreasonable. But how about that magic thingy.
Anyway, I know, it's heavy stuff. So on a lighter note, Nate was talking the other day and mentioned that he just might kill over. So Adrie's response to this was " it's o.k. Dad! You'll just get resurrected if you do."