Jack has been doing OK. He and his brother have been sick. I took them last week to the doctors. They both had bronchitis. Jacks brother is better, Jack still is not. He also got his sinus x-ray done and it did not look good. The allergist wants Jack to add a extra 10 days on to the 10 of antibiotics he had already been prescribed for the bronchitis. This is a total of 20 days on antibiotics. After that he wants him to get another x-ray. We went to the ENT today. He said that he would wait till the summer to get another sinus x-ray. He thinks Jack has been exposed to a lot of radiation lately. He also is ordering some immunoglobulin tests. He said Jack definitely has chronic sinusitis. He said to continue with the allergy testing and take that all the way. Then he will go from there. If in the summer there is the same pattern( Jack has had since birth) then the best bet would be a CT scan of the sinus. He said the removal of the adenoids and tonsils did help the snoring and obstruction. That is good from the disease point of view. As for the chronic sinusitis the next step would be a surgery. He said Jack is pretty young for that so we will exhaust all the other possibilities first. I also talked to him about a article I read. He encouraged me to talk with both of Jacks specialists for the mitochondrial disease about it. It was a possibility and something he had read about.
The UMDF sent there news letter as always. There was an article that made me feel for once not alone. It was about kids and adults with Jacks disease and how they are finding they have recurrent infections. Never seeming to recover fully from colds. Having a cold turn into bronchitis or pneumonia's. Having to be hospitalized frequently when having pneumonia or bronchitis and other recurrent infections. Parents feeling like antibiotics just don't seem to help or be enough. It explained why with mitochondrial disease this is. It made so much sense. Long story short they are starting to use low doses of immunoglobulin injections for people with mitochondrial disease with recurrent infections. The article sounded a lot like what we have been going through with Jack since birth with( the one of many issues) him always being sick. I will talk with his specialists further about this. The people in the article have seen improvements. It is definitely something to talk about.
Jack has still been having the tetany and muscle pain. The tetany has been a bit less this past week. The tremors and leg pain more. I just wish I could figure out a pattern. it just seems there is not one.
I could make Jacks appointments, searching for answers, and daily chores a full time job. I thank God he gives me the strength to do all that, work and more.
Tuesday, January 29, 2008
Friday, January 11, 2008
Update
Jack is doing Ok this week. He is still experiencing a lot of the episodes of the tetany. It is very painful and at this point the medications are not helping with that. He is still having a lot of eye issues and instability. His fatigue seems to be up this week and endurance down in the afternoon and evening.
He went for some allergy testing on Monday. They did some very basic scratch tests. They didn't see much, but one reaction. Jacks nasal passages were swollen. His eyes were glassy and red. Based on all that the doctor wants a sinus x-ray and wants Jack to come back for some more extensive testing in a couple months. He wants to see what the x-ray shows. He also wants to wait till he recovers more from the last surgery. He still felt he was in the process of recovery. He is keeping him on his current allergy medication. We will see what the x-ray shows and do the rest of the testing then.
Today he went for the nuclear med test. It was 4 hours long. Jack did well. We hope to get some answers from that soon. The test has given him diarrhea. He is not feeling too good. We will just be watching that closely. That for him can turn serious. We trust and pray it will not last.
Jack despite all this is in good spirits. A bit clingy and not feeling that great, but managing.
We will trust in the Lord for next week as we do every week. Praise be to God. We just thank him for Jack and all of are family and friends.
He went for some allergy testing on Monday. They did some very basic scratch tests. They didn't see much, but one reaction. Jacks nasal passages were swollen. His eyes were glassy and red. Based on all that the doctor wants a sinus x-ray and wants Jack to come back for some more extensive testing in a couple months. He wants to see what the x-ray shows. He also wants to wait till he recovers more from the last surgery. He still felt he was in the process of recovery. He is keeping him on his current allergy medication. We will see what the x-ray shows and do the rest of the testing then.
Today he went for the nuclear med test. It was 4 hours long. Jack did well. We hope to get some answers from that soon. The test has given him diarrhea. He is not feeling too good. We will just be watching that closely. That for him can turn serious. We trust and pray it will not last.
Jack despite all this is in good spirits. A bit clingy and not feeling that great, but managing.
We will trust in the Lord for next week as we do every week. Praise be to God. We just thank him for Jack and all of are family and friends.
Tuesday, January 1, 2008
A New Year : 2008
Happy New Year to everyone! We want to thank God for 2007 and pray that 2008 is a great year for everyone. It would seem through are human eyes that 2007 was not the greatest year for Jack and are family. When reflecting through spiritual eyes we can see how it is all part of Gods plan and purpose for are lives and family. God helped us get some answers this past year. He blessed us with some help financially through the successful benefit. He brought Jack through some hard procedures and tests. He gave us as his parents strength, wisdom,and great joy in many ways. God is the author of the story called life. All of are lives are so that we fulfill Gods purpose and make his name known. How exciting to think he is using us. We believe through are trials we will become stronger and have a great testimony. I know some of you have seen us down or us have a hard time with everything. To that I say we are human. Through it all, we get up stronger and the downs are short lived. Jack will be a walking testimony for the Lord, however the Lord chooses to do it. We in 2008 want to make a difference and make mitochondrial disease more known. We welcome any suggestions in doing that.
Jack today is doing better in some ways and having a hard time in others. That is the way the disease is. He is finally seeming to recover from the surgery. He missed almost a hole month of school and therapy. We pray and ask you all to pray also that Jack doesn't have a hard time getting back into the swing of school and therapy.
He has some upcoming testing and due to this has been taken off a lot of medication. We are seeing him having some more eye issues and stability problems.
He went for his GI second opinion and has some more testing coming up for that. They are trying some different medications and we will see. I will fill in at a later time regarding that. I am trying to keep this lite. The appointment was good, yet the end result for help is hard. Jack is also being refereed out for the new diagnosis. His specialist here is trying some new meds because he is experiencing tetany. It is very painful and he is not totally sure why he is experiencing this. This means more appointments, travel for both new doctors and two upcoming tests next week for Jack. They are not taking the GI issues lightly. He had lost some weight. They are not overly concerned about the weight as to why. Just keep Jack in your prayers if possible.
Jack had a nice Christmas. He was so full of excitement and wounder. He is so animated and full of happiness. He has so many questions and his thought process is amazing. He was so excited and funny opening his gifts. He is so thankful and full of love. He out of the blue said thank you later in the night on Christmas. He out of the blue tells all of us he loves us on a daily bases . He is such an amazing little boy. If you have a chance to be around him and experience him it is a blessing.
We want to again thank everyone who keeps Jack and are family in there prayers. The words of encouragement on his website, emails, phone calls, and knowing people are praying really helps us in the rough times. God has blessed us with so many people who care and want to help. We still stress at times about finances, the future for Jack, the lack of answers, the 13 doctors and there different opinions, but when we stop and think peace is what we feel because we know God is in control of everything. We are so very blessed in so many ways. We are confident 2008 will be a good year. Every year is a good year with God in control of your life.
Jack today is doing better in some ways and having a hard time in others. That is the way the disease is. He is finally seeming to recover from the surgery. He missed almost a hole month of school and therapy. We pray and ask you all to pray also that Jack doesn't have a hard time getting back into the swing of school and therapy.
He has some upcoming testing and due to this has been taken off a lot of medication. We are seeing him having some more eye issues and stability problems.
He went for his GI second opinion and has some more testing coming up for that. They are trying some different medications and we will see. I will fill in at a later time regarding that. I am trying to keep this lite. The appointment was good, yet the end result for help is hard. Jack is also being refereed out for the new diagnosis. His specialist here is trying some new meds because he is experiencing tetany. It is very painful and he is not totally sure why he is experiencing this. This means more appointments, travel for both new doctors and two upcoming tests next week for Jack. They are not taking the GI issues lightly. He had lost some weight. They are not overly concerned about the weight as to why. Just keep Jack in your prayers if possible.
Jack had a nice Christmas. He was so full of excitement and wounder. He is so animated and full of happiness. He has so many questions and his thought process is amazing. He was so excited and funny opening his gifts. He is so thankful and full of love. He out of the blue said thank you later in the night on Christmas. He out of the blue tells all of us he loves us on a daily bases . He is such an amazing little boy. If you have a chance to be around him and experience him it is a blessing.
We want to again thank everyone who keeps Jack and are family in there prayers. The words of encouragement on his website, emails, phone calls, and knowing people are praying really helps us in the rough times. God has blessed us with so many people who care and want to help. We still stress at times about finances, the future for Jack, the lack of answers, the 13 doctors and there different opinions, but when we stop and think peace is what we feel because we know God is in control of everything. We are so very blessed in so many ways. We are confident 2008 will be a good year. Every year is a good year with God in control of your life.
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