Merry Christmas To Us!

I drive past Arkansas Children's Hospital at least once a week, I have numerous friends who work there, and nearly all my therapy clients have a great history with ACH, yet until today I have never stepped foot in their facilities.  Our experience there today was phenomenal.  The admission staff, financial aid staff, nursing staff, anesthesia staff, and neurosurgery staff where all top notch.  We even got to see a nurse who is a parent of one of my kiddos.  She will never know how much just speaking to a familiar face was consoling.  Whether a Pulaski county resident or anywhere in the state of Arkansas, we are truly fortunate to have such an amazing place for answers and resources.  

Andrew and I were the calm, cool, and collected parents today.....until we were told we had to leave in ambulatory surgery for anesthesia.  My legs completely went numb and I couldn't even muster up an "I love you" to her.  While sitting in the waiting room with Andrew and Holly, my mind was blank I honestly couldn't even pray because I couldn't make a complete thought.  There were dozens of families in that same waiting room and their faces were blurs. I couldn't even tell what the room looked like.  When they called our last name I basically left Andrew in the dust to carry all our bags to get back to her recovery room.  I could hear her cry 6 curtains away. When she saw me she reached for me.  I breathed a sigh of relief.  The first step was over.

From our visit today we discovered that Presley has the most common type of craniosynotosis.  Her sagitial suture fused together before birth.  With craniosynostosis, the more sutures fused, the worst prognoses. Here is were our miracle unfolds.  One week ago with the x-rays (unbeknownst to us) all of her sutures showed to be closed.  Today, the CT scan (which is the most accurate) showed only her sagitial to be closed!!!!!!!!! We are without a doubt 100% sure it is a marvelous act due to all the love and prayers sent her way!

Our findings today show that she does not, and most likely will not, suffer from any brain damage, delays, headaches, eye problems, hearing loss, etc.  Surgery is still an option.  It is recommend by the neurosurgeon we saw today to still plan on surgery.  Although this thought sends chills to my deepest bones, a huge weight has been lifted that it is not "life or death".  We will meet with the craniofacial team in January to discuss her future.  The surgery is highly recommended before her 1st birthday. I cannot speak for Andrew on this thought, mainly because we have only spoke of good thoughts since 12:40 today, but we can now move on knowing her brain isn't at jeopardy at this exact moment. Surgery brings a whole new world of thoughts, emotions, fears, and questions.  We will cross that bridge in January.

When I was pregnant, one of my therapy moms asked me if I was happy that she was a girl (after our gender reveal).  I told her what sounds like the cliche answer "I am happy she is healthy".  I meant every word of that statement then and now.  This mom of a child who has had a huge journey with her medically fragile child told me; "Tasha, no one prays for a child with disability, but you learn to love more than ever".  This past week, I know now what she means more than ever.

There are no adequate words or expressions to convey our gratitude for the love, support, and outpouring of kindness we have been shown in the last few days.  We appreciate every little thought that has helped our Presley, the love of our life, to have good news. Thank you all!