NEWS ON THE BIOPSY

I got a phone call today from the specialist in Cleveland. He got back some preliminary results regarding Jacks muscle biopsy.

It is all very complex but I will break it down the simplest way I can. They found three major abnormalities. One Jack has more mitochondria then he should. They appear to be normal but he has more then he should. Complex 2 and 3 our not working correctly ( inside the cell). There is a problem in the forming in complex 2 and 3. This is were genes are involved. The fat component is not being processed how it should.

What that means is Jack has confirmed mitochondrial disease. Unhealthy complex 2 and 3. He said that it is more uncommon. He is sending the muscle out for more specific gene testing. He is meeting with his colleagues at the end of the month regarding Jack. He will get back to me with more test recommendations at that time. He still wants him to have the gene test that my insurance doesn't cover. It is still the same in that there is no cure and no prognosis. He is contacting Jack's specialist here to discuss medication. What this confirmation does is allow for more genetic testing. It also allows for more things to watch for and more treatment possibilities. We would want to pursue more genetic testing now in hopes of pin pointing gene issues. Plus he said at this point he cant rule out another genetic disease primary which could be causing the abnormalities and the confirmed mitochondrial disease could still be secondary. We can be on a better road now to finding that out. Either Mac and I our both carriers of the disease or just me or just him. This is something we might never know, but the more we know the more we can find out. We would like to know as much as possible for our other son also. He could be a carrier he could also not carry the gene at all. It could mean others, cousins, uncles, ect.. could be carrying in there line and not be aware.

I am glad we got results. What a answer to our prayers.Some would be upset to know for sure there is a issue with there child.. Deep down I always new and this gives me hope. Hope to be on a road to confirming or denying another disease as primary, and Knowing better what we are dealing with. What is hard is there at this time is no cure, no prognosis. What I hear is he will get worse with age most likely not better. It is frustrating because mitochondrial disease is so complex and fairly newer in the medical community. Things are changing every day. What is even said through the MDF is always changing. I thank God Jacks Doctor (one of only two specialists in the US) is the main one for all the research and papers you read. We have someone wonderful and knowledgeable on our team. We believe in faith Jack is going to have a great testimony someday. The cards are stacked against him, but he is going to win the fight and give the glory to the Lord above.

Update 4/15

Today Jack walked for the first time. He was standing on it yesterday, but said it hurt. Today he is walking on it. He is favoring the leg and walking a bit funny but is doing well. He shows discomfort when you pull his paints down or up. He doesn't want anyone to touch it. If you carry him it hurts him also. The doctor said no rough housing or major activity for 2 to 4 weeks. I think that is going to be difficult. The doctor said that is how many times the incision gets riped open.
Noah is still sick. The fever seems to go down and he feels a bit better, but then spikes. It was 103 in the middle of the night. He was throwing up and having diarrhea yesterday but hasn't today. Hopefully he is on the mend.

Thanks to all of you who emailed or called. It helps to know people care and they are praying and thinking of the boys. It makes all this easier to have support.
We now just pray we get answers from this test and that both boys start getting back to normal.

I also wanted people to know if you click on the link for Charity for Children(the link is on the left side of the blog page) you can see Jack's story. There is a place over on the right side of the page of the Charity for Children website, titled Jacks story. If you click on it it tells you how Charity for Children helped us and a picture of Jack. The letter I wrote starts out telling a little about Jack and what we have been through. I would like to say again that this is such a worthy Charity to donate to. If you find it in your heart to donate you can make the donation in Jack's name. I also encourage anyone who wants to know more about mitochondrial disease to check out the link on the left of Jacks blog page for the united mitochondrial disease foundation.

Back from Cleveland

We are back from Cleveland! The hotel was excellent and things went smooth. The people were helpful and the trip as far as traveling went pretty well. The way down Noah was sick in the car and threw up twice. He was sick and seemed to get worse not better during the trip. Jack did well with the trip and the surgery went well. The ride home was OK. They both were not feeling well. Jack had a stomach ache and Noah a high fever. Last night Jack was in some pain and had a hard time with sleeping. He is a restless sleeper and all the moving made him cry in pain. Noah was throwing up and running a fever and coughing a lot.

Today Jack is doing OK. He cant walk and is having some pain , but as long as you don't touch the area or move him, he is in good spirits. We took Noah back to the doctor because today should have been the start of day 7 with the flu and he seems to be regressing. They said the flu had moved into definite bronchitis possible pneumonia. He just went for a chest x-ray we should know something soon. Either way they put him on medication so hopefully he will start to get better. We are just trying to take care of both of them. The sickness has made its way around. I have bronchitis and my mother is ill also. We hopefully all will be on the mend soon.

Thanks to everyone who is and was praying. Besides the sickness, the trip was smooth and I really saw Gods hand upon the whole trip. Keep praying for Jack and Noah to get well. The biggest prayer need from there will be that in a few weeks we get answers from the procedure. We believe in faith we will.

Prayer / Update

We took Jack's brother to the doctors this morning. He was still very ill. He tested positive for the flu. Even though Jack has had a flu shot they were still concerned. They prescribed a medication in hopes of preventing Jack from getting the flu. The issue is he was taken off all meds due to the biopsy. They wrote me a script and told me to call the Cleveland Clinic and speak to the surgeon. (mind you it is Saturday) To make a long story short I finally got a answer. They said there is a chance with the medication for the flu that it could cause the muscle to be inflamed and mess up the biopsy. The chance of that is on the low end , but could happen. If Jack gets the flu the hole procedure is off. They feel we should give him the medication in hopes of it preventing him from getting sick and go through with the biopsy. That is what we are doing. Jack did have a flu shot, but that doesn't mean he cant get the flu. The doctors did tell me he needed a flu shot. They never told me that every member in the house should also. I thought as long as he had one that would be fine. They told me today all of us should have one (especially Jacks brother) so we don't spread the flu if we were to get it,to Jack. I feel a bit as it was my fault. I should have known, I have been so on top of things. Why didnt I think of that?

Anyway- All we can think is to pray. PLEASE pray that one, Jack doesn't get the flu. He is just starting the meds today and has already been exposed. We are keeping him away from his brother but who knows. PLEASE also pray that the medication doesn't inflame the muscle and mess up the biopsy. PLEASE pray we get answers from the biopsy and that we don't have to do it again. PLEASE keep Noah (Jack's brother) in your prayers also. We pray the rest of us don't get it and we end up in Cleveland well and on time with know issues or problems.

All we can do is pray and turn to others for there prayers and support. We believe in faith God is in total control and we will have quite the testimony someday.

Cleveland Trip

Well we just got a phone call today in the later morning,from the Cleveland Clinic telling us that the surgeon scheduled to do Jacks surgery will have to reschedule. You can assume that didn't go over to well. They are moving it up to this week. We will be leaving for Cleveland on the 10th and the plan is we will return on the 12th late. That is if all goes well. Jacks pre testing is on the 11th and the actual surgery is scheduled for the 12th. It was a lot of phone calls and moving things around but it looks like it is all working out. It is a rough weekend to have to get ready to go but we are sure it will work out.

Jack is doing OK this week. He has had some sleeping problems and tremors a bit more then normal, but he is OK.

Please keep Jack in your prayers regarding the surgery, and the outcome. We are praying we get answers and that he doesn't go through this for nothing. There is a 10% chance that could happen. We are believing in faith we will get answers. A big concern and need for prayer is that Jack doesn't get ill before the surgery. Jacks brother has taken ill this evening with a fever and cold symptoms. Please pray jack stays well and doesn't catch what his brother has.

I will update everyone when we get back regarding how Jack made out. I hope in a month or so I can report that we got some answers from all of this. Please keep us all in your prayers. Thank you for your continued support.