First Few Days...

So far so good…we have had a great few days at Barrow’s. I must say, they waste no time here and get to work. Luke had a barium swallow study today, and that went well. As we expected, he can tolerate up to nectar consistency, which is just under thin liquids. It seems the problem is mainly that is soft palette is not closing off his nose, although no liquids actually come out of his nose. We are told time and him holding up his head can help strengthen this. If any Speech Therapists that follow Luke have any suggestions, we would love them! In PT and OT, they are working on his left side, and are making a splint for his left hand. They are encouraged because he does still have a full range of motion which is good, and they have gotten him to do a few things with his hand. The PT today was great! She found Luke a wheelchair just his size, that he can move by pushing the wheel or moving his foot. He thought it was funny when they told him to run me over. I told him he needed to steer it because Daddy always says I am a bad driver:)He laughed at that. So, the wheelchair we came home with after PCH which cost almost $6,000 (insurance paid for) is basically of no use for Luke. As the PT told me today that is a good thing, because it means progress is being made. They are also going to order new AFO’s which are the foot braces he wears, which will fit better and allow him to move his feet more when trying to walk. It has been a great day and a half so far. The room we are in is big, and we are at the end of the hallway which is nice. We are also able to take him for walks around the place. Tonight I took him on a walk down the bridge they have here. It is a good workout for him to maneuver the chair around. I also can not say enough good things about everyone here. They are all great! One of the nurses has given Luke the name, “King Luke;” he thinks it is funny when she calls him that. Tomorrow the speech therapist is going to do some cognitive/communication testing with him. Thanks for all of the birthday wishes for all of us, and all of the thoughts and prayers. Please continue lots of prayers for healing and restoration…believe…good things are happening!