More News!

Our days have been filled with more appt. this week: neurology, endocrinology, GI, and home health nurse. Today we went to endocrinology. Carolione is blowing spit bubbles and working on moving her head from side to side from a tummy position. This is a true struggle due to lack of muscle tone. We have more PT on Monday and back to see Dr. Spence on Wed. for results of our skin punch chromosome test and hopefully more info concerning Caroline's diagnosis.
Caroline is 7lbs 10 oz. today! So big!!! We are so glad and can tell a physical difference already!
Mimi left to go home today and we will make our first car trip to Greenville, SC for Papa's birthday weekend. We also took Carley and Caroline to her fall festival last night. Carley was a pirate and Caroline was just her cute little self. Caroline giggles and laughs and is quite responsive. We take joy in these milestones and do not take them lightly.
We met with Dr. Parker today. We loved him! He was a very good listener paid me a very high compliment. He asked me if I was a PH D, nurse, or doctor. I smiled and humbly said, "Just a mom who has read, researched and listened to many doctors! His response was, "You are not just a mom and a teacher and I am so glad you are well educated." This is worth all the hours of research and heartache. Back to Caroline's diagnosis. I have researched many things, but have spent a lot of time with moms on a list serve for children that have a specific genetic growth syndrome called Russell Silver Syndrome. Most docs are not all familiar with this, but the specialists at least know of it. So for about two months I have read about treatments and things to do with babies like Caroline, but my hands are tied after I have been exposed to the knowledge. There is a well known doctor who specializes and treats kids with RSS and knows all about growth problems in babies. Her name is Dr. Harbison in NY. I have read wonderful stories about her and the families she has helped. Today was a huge answer to prayer. Dr. Parker knows all about her and says I am onto something and believes I could have possibly diagnosed Caroline myself. She has too many commonalities. It is complex, but oh so interesting to me. He took pics of Caroline and sent them to Dr. H in an e-mail and is referring us for an appt.
So maybe in Jan. we may be taking a plane trip with Caroline to NY. There is much insight and medical help with a diagnosis, especially to help Caroline reach her full and possible potential. I rest in Him for my hope and my strength. Love to you all.