October 7, 2009

Johnny,

It's Wednesday...We are not really sure what the plan is now. It doesn't seem like it's going to go as planned. Mom hasn't heard from Bluecross Blueshield or Baylor. Dr. Espey at Texas Specialty wrote up a letter of medical necessity and it was faxed to Janine with Baylor along with summaries from physical therapy and speech therapy this morning. She was to send them to Diane Ellis with BCBS who will get with the medical director. Politics....what more can you say?

Mom was with you from 9:30 until noon today. They put a patch behind your ear to help with secretions. Mom said she started to peel it off until she saw that it had some silver metal on it. That's so funny! When I visit you, I pick things up around the room and throw things away. I'm always finding stuff in the bed with you. Ugh! Some nurses are so lazy! Mom found out that the nurses were told to stop giving you the meds that helped to wake you up in anticipation of you getting the baclofen trial so you had more tone and would not wake up for therapy. Jerry had you first on the mat and after a brief time, put you in the chair. Jerry asked you during therapy, "what do you want johnny?" and you said, "Wa"...(water) So, Julie gave you some pieces of ice that are mixed blue dye. You held it in your mouth, swallowed and then coughed. When they suctioned you, you did not have any blue. That's good news! Four months with out water in your mouth...I'm sure that's hard. It's the little things, the simple things we take for granted. Mom sat with you and rubbed you with aspercreme on your hands and arms - she said, all of a sudden, you woke up. You pointed to yes and no in response to questions and even said yes and no verbally, several times each. You took the pegs out of the peg board on command and by color and handed them to mom. You even tried to put them back in the peg board. Mom said you kept pulling at your sheet so she asked you if you were cold to raise tow fingers and you did. Mom said when you finally got back in bed you were exhausted. She told you, "good night johnny" and you said, "goo nah".

Well, tomorrow is the 8th...we still don't know what's going to happen. I fully believe that God is in control and it's on his time, not ours. It's really hard to wait. I just know that once you get the pump, you will really start to progress and do things that the spasticity is holding you back from doing. I have confidence in you Johnny and I'm excited to see what's next.

Love you little brother!! xo Jen