Update

Jack's birthday party went very well. We thank all of you who came and gave gifts so generously. He had a great time! It was very exciting for him.

He has been not doing very well muscle wise lately. Since Saturday he has had 3 episodes of collapsing and not being able to walk at all. If you pick him up and set him on his feet he goes right down. He is complaining of leg pain and his feet hurting during the day as well as waking up at night. This has been becoming more frequent the last month or so. It is hard he goes and goes, but then crashes. Yesterday he couldn't walk at all and had to rest for awhile before he was able to walk. When he is walking and he is not doing well his legs cave in and he has been falling. His walking is unsteady at best and when he is like that he has points were a leg or legs give out. It is very hard, and very bothersome. The doctor is calling me soon regarding there meeting he is having with his colleagues. At that time I want to know what tests they are recommending and what other diseases and disorders they have or are checking for. We go back to Cleveland for a follow up appointment on August 3, 2007. These muscle issues go with the mitochondrial in some ways, yet don't in others. It is getting very scary when he cant walk at all. His Physical therapist is noticing things as well. People who don't see him every day or for any lank of time think he is doing well. She sees him and says his endurance level is worse then last summer, and is noticing the muscles things as well. She has been dealing with kids for 20 years in this area and has concerns. Something is just not settling right with me. This is how much of Jack 's life will probably be. We don't know for sure what is going on and can only hope for the best and more answers. I thank God we are were we are. I started video taping Jack so I can show the physicians exactly what is going on. When they see him after a car ride or on a semi good day , they don't get to see everything. There is no cure or prognosis, but if they are searching for something else primary this may help.

He starts with all his new prescriptions tomorrow so we will see how that goes. His CPSE meeting went well and we are looking to get him into a program for the fall. I have lots of concerns and what ifs going through my head. We as his parents can only take everything one day at a time.

Just keep Jack in your prayers. Pray we can get more answers to possibly help Jack more.

Update

Jack had his appointment yesterday with his specialist here in Syracuse. We have not seen him since before Jacks surgery. He explained some more to us and answered some questions regarding the preliminary results. He is putting Jack on a vitamin cocktail to help in maintenance and prevention. He said some kids see results some do not. He said it would take 4 to 5 months before we would notice anything. He said if anything it is to help these kids when they crash or get sick. It helps boost there system so hopefully a illness or crash doesn't end up with hospitalization or turning into something worse quickly. We will see how he does. It will take a few days for the prescription to be ready. We could either get like 7 separate prescriptions that would be given 3 x a day, or combine them into one. He said either way it would be a fight he said they taste terrible. We went for the combining. There is only one pharmacy inside of university that does this. He isn't sure if my insurance will cover it we will see. If they don't we will deal with it. Jack needs it so we will see.

He also talked to us a lot about important care for Jack. Some we new some we didn't. He explained the seriousness over these kids with over heating. He also talked about his daily care, fatigue, crashing, sickness. He talked about prevention and seriousness of sickness and what we would do. He said Jack right now is looking good. He said to deal with things day to day and when problems arise. Respiratory, and stomach issues, and muscle pain is what we are dealing with now. He is seeing the necessary physicians and doing testing for those areas.

The doctor also explained the Complex 2 and 3 being uncommon and tried to explain the mitochondria again and the process. He also tried to explain how Jack's fat with in the mitochondrial is not processing correctly and how that works. All very complex and bottom line, there is no cure and prognosis. We are waiting for the specialist in Cleveland to meet with his colleagues at the end of this month regarding Jack. He said we will wait to see what testing they suggest to be done. He said we will then try to fight the insurance again, and he can write a letter. If they still will not pay we will see what we can do if anything. Hopefully the tests recommended will be able to be done in Syracuse. We will go back to formally see him in 4 months. He will call me regarding what steps are recommended next and we will do them. He did order some blood work and we will go from there.

My feeling was it was a good visit. It Made me even more aware about prevention of illness and injury for Jack. It made us realize the seriousness of caretakers with Jack and needing to educate them. It is frustrating because we cant just do something definite to make Jack better. I am very thankful for how well he is doing. I cant think about the future and what could happen, how bad he could get, how young he could die. I have to take each day as it comes and thank God he is doing as well as he is. He is a walking testimony already. I believe in faith he will live a long life and beat this and have such the testimony.

We are rejoicing that God blessed us with Jack. His spirit sick or not is wonderful. His personality and sense of humour amazing. His energy level amazing considering his condition. He is a inspiration to his family! Complain not, it could always be worse! Take life as it comes and cherish it and the many blessings. Be a light and a walking testimony for the Lord every day. Your reward will be great some day.

Jack is turning 3 tomorrow and we are rejoicing in his birth. We are having a big party for him Saturday due to his rough year. We look forward to making the next 3 days exciting and all about him. We will be thanking the Lord for him, all of him and I wouldn't change him for anything. Heal him, take the pain away yes, but never change his spirit. It is a precious, priceless, spirit!

UPDATE 5/16

Jack is doing OK lately. He had an appointment today with a pediatric GI doctor. Children with mitochondrial disease can have many stomach issues including reflux. This I knew, but he said that also. Anyway he thinks the choking and throwing up, stomach aches, ect.. could be from reflux. He told me to keep him on the previcid since he hasn't been on it long. Next Friday he has to go for a barium swallow. Then we will see the doctor again in the beginning of August. He said depending on what he sees on the swallow and if I see a improvement with the previcid we will go to the next step. The next step would be for him to put him under and do a scope and while he is in there do a biopsy. He thinks we will end up going that route, unless I see a huge change due to the medication.

I got the break down bill today from the Cleveland Clinic from his surgery. The bill was much more then I expected. Thank God my insurance paid for more then I thought they would. We are still stuck with a very large bill.
I got a answer back from the insurance regarding the 4000.00 dollar test that I appealed. They still are saying No to paying. There are a few more things the specialist wants done and genetic testing we would like done on us and especially Jacks brother. We are talking alot of money in tests that we would like done and some they see totally necessary and the next step for Jack. People would be amazed if I said how much the surgery and testing of the muscle bill came too. Way more then ever expected!

Please pray that God makes away financially for us to get these test done . Pray also that he gives us a way to pay these medical bills. We are also praying this week that Friday Jack's CPSE evaluation goes well. His only therapist actually showing up is his wonderful PT and his case worker. We are hoping we don't have to fight regarding services. It has been recommended by an outside agency that Jack get teacher services 5 times a week in a integrated setting. They are also recommending 2 times a week, PT, OT, and Speech services. Just pray the meeting goes well and we don't have any problems.

We just have to keep pressing forward and giving the glory to the Lord. It is very hard sometimes. We don't know how, but we know God will make away for everything!