UPDATE

Jack is still limping on the left side. It is worse depending on activity and how much walking he does. He has had a few really bad nights. He has been crying with leg pain. He asks for his legs to be rubbed and usually falls back to sleep. His reflux has been bothering him more lately also.

I talked with his specialist in Cleveland. He gave a list of things he wanted done. I told the specialist here and he ordered the labs. He refereed us to an orthopedic surgeon for the x-rays and said we would come see him in 2 weeks. We would after having the results from the labs and the ortho appointment done go from there with referrals. He made the prescription changes that the Doctor from Cleveland wanted also.

We went Thursday for Jacks 3 year old check up. His regular pediatrician doesn't deal much with the disease stuff. He said if we need any help with referrals let him know. Jack was due for a shot which he did.

Then we went Friday to the orthopedic surgeon. She talked with us and examined Jack. She had him walk up and down the hall to watch him. She said she has never seen a gate or walking pattern such as his. She was also concerned about the limping. I talked with her about the left side issue and the new limping. I also talked with her about these periods were he cant walk at all and the difference with the episodes. She did x-rays after the exam. The x-rays showed that YES there is something going on with Jacks left side. Jacks hip is not sitting in the socket correctly. His knees and ankles look good. She said the reason his knees look bad when he walks is due to the hip. He doesn't need and she doesn't want to do a surgery at this point. Regarding him complaining of the foot she said maybe there was a hair line fracture or just a sprain. She said regarding the episodes were he cant walk at all that she agrees with the other doctors that it is nerve related. She is going to refer him out to a rehabilitation specialist regarding the nerve problems and not being able to walk at all. She ordered a bunch of labs. He had 10 viales drawn. She said depending on how they came back it wouldn't hurt to refer him to a rheumatologist also. Regarding the hip she is going to see him every 4 month to monitor the hip and legs. We will watch it and he is a definite person who will have hip issues. Surgery we will do when it is totally necessary due to his age. She said if he is not totally done limping in two weeks to call her and she will order a MRI which he will be put under for. She also said that the left side hip issue is definitely due to the mitochondrial disease. She wrote that on the report as the diagnosis and cause of the hip problem. So more appointments coming up. We will see the specialist here in a week and a half. At that time he will do more of the referrals. They are all in agreement that both issues are mitochondrial disease related.

Just pray that Jack starts feeling better. We pray this down turn is temporary and he will bounce back and feel better for a while. We realize that down turns will happen many times in Jacks life. It is hard because him doing better is still having issues. This down turn has been very scary. You cant help but to think of the future and sometimes be upset. We have to just look at Jack and his attitude and it helps us. Jack has a great spirit and attitude no matter how he feels. He inspires many people around him. How can I complain or be down with him so happy. Even limping around he is happy. When he is in pain in crying that is the hardest. He still in the middle of the night, in pain asking for his legs to be rubbed is so sweet." Mommy please rub my legs" he says as the tears run down his face. I rub his legs and with his eyes closed, tears on his cheeks he says in the silence "mommy I love you"! What a little gem he is!