Surgery, for both warriors

So as some of you who are friends with me on my facebook probably have seen mentions of a meeting with a neurosurgeon that I had. This meeting was to discuss the options for having surgery to get the water in Adalynne's head under control.  Before we thought a shunt was the best options but after meeting with the doctor we have decided to do a surgery called Chorord Plexectomy, I call it the CP because no matter how hard I try I NEVER get those words correct. Nonetheless, what happens is the doctors go in and remove a piece of bone to get to the part of the brain that produces the cerebral spinal fluid and they clamp it and cauterize it. The fluid is made in several areas of the body but this will dramatically reduce the massive amount being made in her brain cavity. I'm waiting to see if hospice/medicaid will cover this and then we will be having this done ASAP. The longer we wait the more risk to her the water becomes. Now, I need to make something clear to you saps out there(no hard feelings) this isn't going to "fix" my daughter. I have finally allowed myself to see the MRI done after she was born.... and unlike what I had said earlier about missing a third of her brain, well, its the opposite. She has a third and is missing the rest. Knowing she has this is one thing but really seeing her picture next to a "normal" brain is.. breathtaking in the bad way.  I know the fate of my child, but I don't need people telling me to believe a miracle will happen. She is the miracle, its already happened I got her out of the delivery room, enough said. This surgery will help make her life more comfortable, her head is rapidly expanding and will start to cause much more issues and make caring for her way more challenging.  Its already effected her ability to hold her head and fit in clothes and holding her is more about having quick reflexes to catch her head when it swings from the weight of the water. Adalynne is still moving and luckily has the part of her brain that allows spontaneous movement so hopefully that will somewhat continue. She is now 9 lbs 2 ozs!! Feedings come and go with the challenging aspects I've already mentioned in previous posts. We haven't had many spells needed morphine or breathing issues recently. Had pretty good week with Adalynne. Just my health has decreased but hey, who needs a gallbladder anyway?? Lame organ with its bile storage and whatnot. hahah I'm on the track to recovery and I'll  be better in no time and able to hold her normally again after weeks of pain and now 5 more scars to this vessel of stories.
Time for a bath and snuggles with my warrior and our song All Of Me

Goodnight all, have a great rest and happy day. love to you all

P.S. she just threw up laying on my chest, oh the joys of motherhood. Ha gotta love it!

Great visit 

First park visit

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. 

That Tongue <3 

Thank you to Capturing Hopes Photography for these 

<3 from my longest friend, i love you 

After bath hair, get me laughing everytime

Thank you to Deborah from Now I Lay Me Down To Sleep for these hours after Adalynne was born

 

<3