Already loving Johns Hopkins, and we're not even there!

I could say over and over and over how much of a relief and uplifting it feels to find a healthcare system that appears to care about your child when you need their help. I could preech until I were blue in the face but the words still wouldn't do justice what my heart feels when I hear someone sympathetic on the other end of a phone call talking about Annabelle.

We are making headway at Johns Hopkins with all the resources they are providing and sharing with our family. When a receptionist says, "I think Dr. -so and so- should see these records", they really mean it. Her records were sent this morning for another second opinion, I assume I will hear something in the next several days... at least next Tuesday or Wednesday. She tells me, "Oh hunny, I am making myself a note to check on the status of these every hour on the hour today. I will call you myself or the doctor will call you personally. If you don't hear something by 3pm, let me give you the two doctors that you will be in contact with and their pager numbers." I was speechless. I stayed in contact with a few physicians last week, they pointed us in two directions that should likely lead Annabelle's case and agreed to stay part of her team. Hematology would need more labs and bloodwork to dig a little deeper but he was concerned about the extensive amount of issues she is having to allow only Hematology lead her care at Johns Hopkins. He wants us to quickly get in touch with a geneticist and also touch base again with Gastroenterology. It's a little bit of a let down to get passed away but at least this time it's with 100% logic and understanding and this doctor is intrigued and wants to remain part of her team.. he just wants us with the best physicians to lead her in this medical system.

Annabelle has been doing well, surprisingly. It's such a relief to see our little girl smiling and enjoying life around her. We have taken advantage of these bursts of energy to make the most of family quality time. She is still struggling to maintain her energy, daily.. hourly.. she still has moments and periods of time where she cries her little heart out with pouring tears and she still has days that she only wants to be held and will not speak, walk or play. She pushes through however. Even on the days we HAVE to leave the house and do errands, she keeps up with our family and rests while she can, sleeps when she's cuddled and runs when no one is watching to keep up. She is doing wonderful ... in her own little way.


I am so proud of her. I am in awe of her spirit, strength and determination through this roller coaster. I hope these blessed brighter times are a sign of good news in our future and not a break between the storms. Our fingers are crossed and prayers are being heard to carry our little girl thru this life a little easier. I have no doubts in my mind that these are not signs and answered prayers from every one of you praying for Annabelle. Please, keep the prayers and well wishes in motion!! They are being heard and Annabelle's little body is being held in loving arms, providing her comfort and peace!