Today was another good day. Honestly, each day that passes is a good day, because we have Jessie with us. She is still very weak, but the fire is building...you know the fire that I'm talking about if you have read much of this blog. We have a long way to go, but Jessie is on her way back.
They removed her feeding tube (Nasal Gastric tube) today. That felt so good for her to get that thing out of her nose. This means that the Doctors believe that she is getting enough nutrition without having to worry about NG feeding. Hooray!!!
Also, they took out the central line in her neck and disconnected the IV in her arm. That means that the doctors think that she is getting plenty of fluids without an IV. They left it in her arm just in case, but Jessie is free of lines. It makes going to the bathroom and moving her around MUCH easier. We have to carry her everywhere and move her by hand anytime that she needs to be moved. Believe me, this isn't an easy job after she put on 20 pounds of steroid weight!!
We are also working with her left arm, and left leg continuously to see if we can get ANY strength and/or movement. Not much yet, but we're still praying. Right now, she has complete hemiplegia on the left side. from her tongue to her toes, it's all limp on the left side. In addition to what Hopkins is doing, we are doing the Hall Family Rehab until we get over to Kennedy Krieger Institute for in-patient rehab.
The highlight of our day, was a visit from Kelly Dawson and her family, including Kelly's mom. Her daughters, Alex, Tarin, Abby, and MacKenzie were with her. They were sweet girls, and very well behaved. The brought some nice gifts for Jessie. We all went down to the Johns Hopkins Hospital Cafeteria for lunch. Jessie's first field trip out in the general public went well, but really wore her out. She got some major stares from those looking at her scars and staples, but we beamed with pride. We were so proud to have her out and her wheel chair was decorated with a pink feather boa!!
What really makes this trip special, though, is the hope that it brought us. Not because Jessie went down and ate with friends, but because Abby Dawson (6) had a hemispherectomy 3 years ago. She walked down with us for lunch and ate with Jessie. She's just a regular little girl, with a slight limp and a brace on her left leg. She smiles and plays and laughs and loves life, and she is missing the right half of her brain. God Blessed us with the gift of hope once again and brought the Dawsons to visit us. Thanks to God and thanks to the Dawson family for taking the time to drive from out-of-state and spend some time with us today.
Little Macey, from next door, came over to play Candy Land with Jessie today. She is such a sweet little girl; soft spoken and well mannered. I prayed over and over today for her and her family. I pray that her body responds to the treatment and her body begins nourishing itself and the color comes to her face and she is healed.
I'm praying for her again tonight. Cris