UPDATE

Jack has been doing about the same lately. Still having a lot of stomach troubles and muscle and leg pain. He is still limping from time to time also.

We went last week to see his specialist here and he said to call the pediatric orthopedic surgeon back due to the limping. He had him walk up and down the hall and could still see it. He also said for us to call his GI doctor because with the medication he should be doing better and we see no improvement. He refereed us to a rehabilitation specialist and rheumatologist.

We went yesterday and saw the rehabilitation Dr and her team. She said she thinks there are several different things going on. One the left side limping is due to the hip and she had the orthopedic surgeons report which says the hip is degenerating. She also said the left side in general is looser and appears worse. She was very concerned with his knees and says she is a 100% sure they dislocate and pop back in at times causing him pain. She said the crying at night or other times saying his legs hurt is muscle and joint pain. He is extremely low toned with a tone of movement in the joints and basically his bones move all different ways they shouldn't. She said for the muscles and joint stuff she wants him to have some ankle braces. She also wants his PT to do some taping of his knees. She wants to see if it cuts down on his pain and wakening at night. I go back in a month and we will go from there. She said the next step would be the medication for the nerve pain as the specialist from Cleveland suggested. She is more dealing with the pain and bouts of crying saying his legs hurt. The not walking at all will be dealt more with by the specialist in Cleveland in August. Medication for the nerves is probably were they will start. Jack may have periods in his life that when he experiences a down turn he has these times of not being able to walk. All we can do is try to prevent them. They usually come with activity . The left side and hip will be dealt with more by the orthopedic surgeon.

They called today and Jack has an appointment August 13 to be put under and have a MRI done of the left side. The orthopedic surgeon wants it done because he is still limping. While he is under his specialist here wants a few other tests and MRI's preformed. We will take Jack to Rochester in October to see a rheumatologist. The rehabilitation Dr and the orthopedic surgeon and the specialist from Cleveland all think a Rheumatologist would be a good idea.

As of now that is were we are at with Jack. August 3rd he has the appointment in Cleveland. Hopefully I will have a lot of these reports available for his specialist.

Jack is definitely having a harder time lately. Tremors more frequently, drooling, chocking, but he acts the same. Happy, playing, singing, joking, he is amazing!