Well this is the week we go for Jacks check up with the specialist in Cleveland. His appointment is Friday and we are leaving on Thursday to go.
Jack is limping a lot again. His stomach is still really being an issues and he is having some weird things with his eyes going on.
I will talk to the Doctor in Cleveland regarding all the stuff that has been going on. I did speak with him on the phone and we took his advice and recommendations. Now we need to update him and go from there. As far as the nerve issues and periods of not walking at all the other doctors are a little Leary and wanting to leave things up to him. We will see, that is all we can do. I hope we get some answers.
It has been very frustrating for us as parents lately. A lot of things regarding his hips and knees that the orthopedic surgeon and rehabilitation doctor have mentioned. They are not sure things and not 100% sure they will help. We find it frustrating because if some of these other doctors would have listened to us and refereed us when Jack was a year old it would be easier to try these treatments. We had spoken about his left side and seeing an orthopedic surgeon around one and had mentioned it repeatedly to a few different doctors.
We have a lot of hard discussions and unknowing coming up. It is putting a huge financial strain as well as mental on us. Please keep us in your prayers and pray we make the best decisions for Jack. We get very frustrated with some of the physicians, especially the physicians who don't know much about this disease.
We are doing all we can and everything is effecting everything. We don't get into detail on this blog to much. We just like to keep people, that want to be informed some what up to date. We don't want to appear like we are whining or not trusting in God. All I can say is it is hard and keep us and especially Jack in your prayers.
With out going into a tone of details, if it is not one thing it is another lately. Jack and this down turn and everything else!
Just keep praying, that is all we can ask for! We know it could always be worse. It just seems like when it rains it pours lately. I am sure many of you can relate.
I will update the blog and let everyone that checks it know about how we made out when we get back!
Monday, July 30, 2007
Friday, July 20, 2007
Appointments, Appointments
Jack has been doing the same lately. He has been really bad with stomach issues lately. Dry heaving every day or throwing up, complaining of stomach aches also. He wakes up at night with a stomach issues or leg pain. Both problems have been occurring during the day also, especially the stomach issues.
Jack will go on the 13th , to be put under and do the hip MRI. The specialist here is checking with the specialist in Cleveland regarding doing another test. He had said they would probably do it. Then I talked with him a couple days ago and he wants to leave it up to the specialist .He no longer thinks it is the best idea. He said they don't need the test for diagnostic purposes and it would require Jack to be under Anastasia for an extra 45 minutes to an hour. He said kids with mitochondrial disease can have trouble coming out of Anastasia. Jack never has but the longer they are under the better the chances of them having a problem. He will leave it up to the specialist In Cleveland. August 30th he is being put under and having a scope and biopsy done to the stomach. The medication should be helping and it is not. They need to see if the stomach muscles are working correctly and if anything else is going on. July 30th he is going to be fitted for some foot to ankle braces. The rehabilitation specialist is requiring that. They are also wanting his PT to do some taping of his knees in hopes to reduce muscles pain. September 17th he is going to the ENT to have that area followed up on. In the meantime he has a couple other follow up appointments including Cleveland to see the specialist.
Jack is pretty high spirited and full of it. He is quite the little joker. It is hard when he fatigues out or is in pain. He gets frustrated and that is hard to watch also. He hasn't had a good day in many months and that is frustrating for us as his parents. We just have to keep our trust in faith in the Lord.
We have so many wonderful friends and family here for support. With out you all we would have trouble keeping our chin up at times. One of these great friends have started a website for Jack. The web address is http://www.loveforjackmclean.com/ . You can also click on the link on the left of this page to be directed to the web site.
Jack will go on the 13th , to be put under and do the hip MRI. The specialist here is checking with the specialist in Cleveland regarding doing another test. He had said they would probably do it. Then I talked with him a couple days ago and he wants to leave it up to the specialist .He no longer thinks it is the best idea. He said they don't need the test for diagnostic purposes and it would require Jack to be under Anastasia for an extra 45 minutes to an hour. He said kids with mitochondrial disease can have trouble coming out of Anastasia. Jack never has but the longer they are under the better the chances of them having a problem. He will leave it up to the specialist In Cleveland. August 30th he is being put under and having a scope and biopsy done to the stomach. The medication should be helping and it is not. They need to see if the stomach muscles are working correctly and if anything else is going on. July 30th he is going to be fitted for some foot to ankle braces. The rehabilitation specialist is requiring that. They are also wanting his PT to do some taping of his knees in hopes to reduce muscles pain. September 17th he is going to the ENT to have that area followed up on. In the meantime he has a couple other follow up appointments including Cleveland to see the specialist.
Jack is pretty high spirited and full of it. He is quite the little joker. It is hard when he fatigues out or is in pain. He gets frustrated and that is hard to watch also. He hasn't had a good day in many months and that is frustrating for us as his parents. We just have to keep our trust in faith in the Lord.
We have so many wonderful friends and family here for support. With out you all we would have trouble keeping our chin up at times. One of these great friends have started a website for Jack. The web address is http://www.loveforjackmclean.com/ . You can also click on the link on the left of this page to be directed to the web site.
Wednesday, July 11, 2007
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!
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!
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