My Little Warrior : Month 1!!

Whew, we have made it to one month!!! Each day that passes I breathe a sigh of relief. Adalynne is doing very well most days. She still has tremors and does stop breathing also has had some seizures. On top of those things we have started to see her head is started to get bigger in the front from an excess of water. We will continue to watch the growth and eventually decide if surgery is a best to help ease her pain. Each day is different with her feedings I continue to pump and give her a bottle because she has trouble latching on. Some days her muscles do just fine but it’s slowly starting to be more challenging. A big thing that happens with children with this condition is the muscle decay and eventually the muscles will draw up like children with cerebral palsy. I have started to stretching and range of motion work with her to hopefully prevent this from occurring since it can be extremely painful. Even got a baby yoga book which I am ecstatic about doing with her!
There is an issue I would like to touch on. I have had a huge amount of people who have told me they are praying for me and keeping me in their church groups, I appreciate this to an infinite amount. But, one thing I need you all to realize is… there is no hope for my daughter. And as I type those words my throat clenches and I blink back tears but, it’s the truth. And as much as I know it's peoples best intention hearing someone say hoping for a miracle is just a stab in my heart because I know the real truth. No amount of hope, strength or prayer will give my child a brain. She is missing over a third of it and medicine is not at the point where a brain transplant is available. What I ask of everyone is to pray for my family and friends the strength to get through each and every day. That when the day comes that my sweet warrior leaves to go have her great grandmother in heaven teach her how to dance and hold her hand since I won’t be able to anymore that my family and I can heal and rebuild ourselves and our lives in her honor. That at those times when I sit in the shower and cry uncontrollably I have the strength to stand up dry myself off and go on with my day, loving my daughter with every ounce of my body and soul as we spend our days together. Send strength to my amazing family who help me each day. And not to sound like a cliché Disney movie but, we are all in this together. The huge amount of support we have has truly blown me away. But as my little brother told me “anyone who doesn’t love this little girl is a punk, she is too cute” so I guess in the eyes of an almost 7 year old (tear) it’s easy to see why we have the support we do. Even still I thank you all from the bottom of my heart. Each message is read maybe not responded to but I read them all, and sometimes I even go back and reread things you all send me when I’m feeling really down. As always love to all you beautiful souls out there. I’m forever promising to write on here more but keep failing. One day…. One day…. Haha
Good night everyone my little warrior is waking up to eat!

P.S. Huge thank you to my Aunt Donna and cousin Sarah for coming to mine and my mothers rescue when we have gone to far without good sleep. You both are awesome and I'm thankful to have you both here.