Dylan is such an amazing big brother and often leads the way to sissy. He knows the routine and right where to go. Things that kids should never even know how to do, but he does and has had to learn, and he never complains.
We still haven't been able to hold our girl, but when they change the bedding out we get to hold her standing for a few minutes at her bedside, I soak up all the lovin' I can in those few minutes.
Here is a recent picture of her tummy incision. We are so happy with how well it looks and how nice it is healing. We were pretty nervous about it before but it looks really good and doesn't seem to bother her at all. She is back sleeping on her tummy most nights which is nice.
She really has been in good spirits most of the time. She is no doubt stir crazy and ready to bust out of there but we keep rotating toys and child life brings in some amazing fun things for her, and us too. We are so grateful for those amazing volunteers!
They are looking at doing surgery either tomorrow or Friday to replace the shunt. This is where I beg for your prayers. This is where I get down on my knees and call and cry out to God to PLEASE protect our baby girl. We are sick about it and so nervous. This will be different, but I know that with your prayers and our prayers and the best docs in the world, that she will be ok. Here is the purposed plan, but as we all know, it could change, but as of yet it hasn't. Ok here goes:
They will place a Ventricular Atrial Shunt in Danielle's brain and run the tubing......to her heart. Yes, to her heart. This is where I almost throw up because it makes me so nervous to say that and to even think about this. Friends you thought our girl was fragile before, well I want to put her in a glass case now and protect her even more forever. and ever. and ever and ever. That's not reality either but this just makes us incredibly nervous, because its new.
Here is what it looked like before going into her tummy, and here is what the new shunt placement will look like going into her heart.
So I am calling out to my prayer warriors. I am asking God to PLEASE protect our baby girl over the next few days and beyond. Her little body is so fragile. She has endured so much pain and suffering. It is time to get this behind us and let this little beautiful 7 year old girl be a kid and grow and learn and play all the rest of the days of her life! No more surgeries please! We want our baby girl home.
Thank you so much for your love and support over the past 6 weeks and beyond. If you've got them in your heart for awhile longer and would be so kind to send them our way, we would love it so much. We will continue to keep you posted on surgery as we know more. Today Daddy is spending the entire day with his girl and tonight, head shaving party! Yep you've heard it right! Over the past 3 years with all of her surgeries they have only shaved parts of her head that they needed to, we would then let it grow and it would be pieced together at several different lengths. Well Brad and I have been talking and we are ready for our girl to have a fresh, clean start. This girl has rocked the pixie before and now we are going to shave her head so it is all one length and let it grow as one. As we are praying this surgery will do for her, it will be the end resolve for the past 3 years of issues and the old will be behind us and shaved away, only to grow and flourish from now and beyond.
Our Beautiful girl a few years ago when the front of her head was shaved. How beautiful is she and how beautiful are those eyes!
Make today count friends. Hug your babies and show your gratitude today to ALL Veterans.Thanks for checking in.