Bad Night

Jack had a very bad night. He had the worst tetany episode that he has ever had. Usually when he has a episode it last any were from 20 minutes to an hour in a half. I try not to give him the medication for it unless I absolutely have to due to side effects. I usually rub his legs and try to help him get through it.

Well, last night he woke up at 1am. Last nights episode was bad and he was in a great amount of pain. He was crying and tossing and turning. I tried rubbing his legs, but it didn't provide him much comfort. After about 45 minutes he asked me to get him medication. I got him his medication for when he has one of these episodes. It continued for about another 30 minutes and he fell asleep. I thought it was over and I was wrong. 20 minutes later he woke up crying in pain. He was tossing and turning. He said I just want to sleep but my legs will not let me. I rubbed his legs and tried to get him through it. After about 45 minutes he fell asleep again. Thinking this was it I started to fall asleep. Then after about 15 minutes he woke up in pain again. This time he was even more upset. He said he felt like he was going to get sick. I had to carry him into the bathroom since he couldn't walk at this point. He got sick and preceded to have full body tremors. Then I got him back in bed and he had the tremors and I rubbed his legs. This lasted about another 45 minutes. His father works nights and I called him to let him know about the bad episode. He talked to Jack to try to calm him down. Jack finally fell to sleep. When he woke up later this morning he said his legs didn't hurt. He was very shaky. He has been all day. His balance has been off. He is pail and has dark circles under his eyes. This episode was a long hard one for us both.

It is one thing to have a sick child. It is another to have a child in pain and there is nothing you can do. Usually the medication helps. This time it didn't that much. I couldn't give him anymore medication after the first dose. The feeling of not being able to take his pain away was horrible. I have been there before but this was bad. He is such a trooper when he is in pain. I just new based on how he normally reacts that this was very bad. He is nice and sweet even when in pain. I hope he can carry that with him through his life.

Every time we go through things with Jack it makes me think and learn a lot. It makes me learn a lot about life in general and my son. Jack got up this morning and it was a new day. He wasn't being upset about last night.He wasnt angry because he lost a lot of sleep. He doesn't ask why me? It made me think that as adults sometimes we are ridicules. We cant forgive. We stay angry and bitter. We hurt others. We turn are back on each other. We cant look at ourselves and blame others. We let things fester. We don't always trust in the lord like we should. We don't trust each other. Most people I know, once hurt we cant forgive, understand, or start over.

Jack made me think. He woke up today and yesterday was behind him. No anger, bitterness, sadness, nothing! He was tremoring and weak but his spirit was strong. He loves me regardless of the fact I cant take his pain away. He trusts me even though I fail him. He forgives me even though I cant fix everything. He believes in me when know one else does.

If you are ever blessed enough to spend a good amount of time with Jack you will get to know his spirit. There are some people that Jack just loves and has bonded with. Last night he asked about these people. Why I wondered to myself. Thinking about them brought comfort and strength.Most of these people probably don't even know how much they mean to Jack. When in pain he found comfort in thinking of them.

Jack is definitely in a down turn. There is no cure and no prognosis for this disease. Every day is a struggle for Jack. When I really stop and think of how this child deals with his life it makes me see how ridicules a lot of us adults can be. Life is so short. Forgive, let anger and bitterness go. Change unhealthy relationships. Don't just throw them away. In time you can make them healthy and different. Anything is worth fixing. Jack has shown me that is so many ways. Everything we do in some way or another effects are children. We don't even realize that most of the time. Hold tight and fight for those you care about. When life seems so bad think of all your blessings. Most of all fight for what you believe in or you will fall for anything.

My son is my inspiration. I have changed a lot in the past year. I have changed dramatically in this last month. My children are my main priority. W e all say that as parents but do so many things that don't always impact them in the best ways. Love your children. Listen to what they have to say. Learn from them, pray for them, and hold them tight.

I pray with age Jack can keep this same attitude and fighting spirit that he has. It seems to me that as adults we loose some very important parts of us at times. We let hurts and life's trials get us down. We need to have the victory in Christ Jesus!

Please keep Jack in your prayers. He is my little trooper. He is an inspiration.

Jack is not doing that well at this time. He had a 24 hour stomach bug. This can be very dangerous for Jack. We are suppose to take him right to the hospital for hydration when this occurs. I waited longer then I should have but didn't want to put Jack through that unless totally necessary. Thank God Jack did OK. He is a little week and pail but doing much better.

We went to see Jacks specialist here a few weeks ago. Jack is having some of his issues heighten at this time. Due to his unusual weight gain and constant appetite and craving for water, they are having us test his sugar. They don't think he diabetic necessarily but that his sugar could be off due to his disease. We have been testing him for a few weeks now. He is having high levels here and there. We are to monitor him till his next appointment and they will go from there. Jack is doing well with the multiple daily finger pricks. They messed with his medications and is now on 4 liquids a day, 5 pills, and 2 inhalers and his nebulizer if needed. Jack as always is a trooper and does well taking his medication. He does get sick of it when it interrupts things he is doing. He has to take some of these medications three times a day. Jack has been complaining of leg pain a lot lately and his tremors and fatigue are up.

Jack is very excited about Christmas. He loves snow and gets very happy when he sees it on the ground. He cant wait till there is enough to go play in. He is also very excited to show people his new book. He doesn't get it but got to see one of the love for Jack cookbooks. The cookbook came out very nice . We appreciate Michelle so much for heading this up and putting it together. We are very thankful to those of you who are purchasing them and or trying to sell them. They can be ordered from Jacks website, www.loveforjackmclean.com . You can also contact Michelle peters. You can find her contact information on the website as well.

Thanks to everyone who has been praying for Jack and are family. This has been a very hard year for us. We pray 2009 will be better. We just have to trust in God and keep moving forward.

Update

Jack is doing OK at this time. He seems to be adjusting well to his new school. I am very happy with the team of teachers and therapists.

Jack's Stomach issues seem to be heightening this past week. He has been waking frequently at night. He is getting a cold and it is just starting to go into his chest. He has been complaining more frequently of leg pain at this time. He has had one tetany episode in the last two weeks and one period of not walking at all. It seems to me like he might be heading into a down turn. We hope he is not but that is what it looks like. The fall to winter is seeming to be a harder time for him.

Jack has several doctors appointments coming up in the next few months. He is also being fitted for new braces for added ankle support. He has hated to wear these in the past but we will see. Long term with out them he could have added issues. His ankles buckle in and causes knee issues and the list goes on. He has been wetting the bed a few times a week which is something he hasn't done in over a year. I am thinking this has to do with muscle weakness as things seem to be getting worse at this time for him.

We are moving this up coming weekend. Jack seems to be ok with it, but I know it will be hard. Jack has had a lot of changes since early May that are out of his control. Please keep Jack in your prayers. Jack has a lot of physical issues to deal with on a every day basis and this added stress is not good. Jack seems to be handling everything well. Jacks older brother helps him greatly. Please keep both of the boys in your prayers with this transition.

I also want to thank Michelle for putting together the love for Jack cook book. This is to help with Jack's medical expenses. This is greatly appreciated. Michelle is a wonderful person with a great heart.

I want to say thank you to Kimarie who is in the process of updating and changing Jacks website. It is people who love Jack and do things such as these that makes the days easier.

Jack and are whole family are so very lucky to have such wonderful friends and family. Thanks to everyone who is supporting us in this time of change.

Update

It has been a while since I have updated Jacks blog. It has been a busy time for us all around here.

Jack has had to change schools for the fall. He is adjusting well and I am pleased with the program he is in. They seem to be very on point.

Jack has been having a very hard time the past few weeks. He has had a period of not walking at all two nights ago. He has also been complaining of leg pain the past few weeks. He is very weak and the teachers have noticed the difference. He has been unable to do some things he could normally do. He has been falling frequently and more clumsy. His over heating issues seem to be a bit better at this time. They are still a issue as always. His stomach issues seem better at this time but are still present.

Please keep Jack in your prayers as always. He has a lot of changing going on in his life. He has had some behaviors. He also has been getting frustrated since he has not been feeling well. He knows when this is happening and doesn't want to slow down. I am sure as always we will manage through.

Update

Jack is having a real hard time lately. He has been in the Er once and prompt care two times in the last month. His stomach issues are really up at this time. He is just getting over bronchitis. He hurt his right foot and has been limping for a few weeks. He has been waking up a lot at night throwing up and having tetany. The over heating issues are up due to the time of year.

Despite all of this his spirit is strong and he acts like nothing is bothering him most of the time. He wants to play and be with all his friends.

He has his Cleveland appointment in August and a few other follow up appointments coming up.

Please keep Jack in your prayers and pray he starts feeling better.

Update

It is been a long time since a update. There has been a lot going on for are family these days.

Jack is not doing that great. This is a hard time of year for him. He is dealing with the overheating issues as always. He seems to be having even more issues with it and more sensitive these days. He is learning himself that the heat is too much. We are trying are best to keep him hydrated and out of danger.

His stomach has been acting up for about three weeks now. He is having bouts of diarrhea and a lot of complaining of stomach aches. He has also started the dry heaving and throwing up again. He has been pretty bad the last couple days. There is a stomach bug going around and I am not sure if it is that or his normal issues. If he gets worse I will have to take him to the ER. A full blown stomach bug for him is dangerous.

As far as appointments due to a lot of things I have had to cancel many. I have to reschedule some, so the next few months should be crazy. We are suppose to travel to Cleveland sometime this summer to see the specialist but that has to be changed also. Appointment changes is on my to do list for tomorrow.

Jack had his 4th birthday a few weeks back. He had a lot of fun. He is such an awesome spirit in this world. It was such a joy to watch him at his party. The day took a lot out of him. He had tetany that night and was down and out for a few days. That is how any big event seems to be for him. He presses on and acts happy regardless. He is a very thankful child. I thank God for him everyday. I will post pictures from the party soon.

Update April

It has been a while since I have updated the blog. I have had a sick mom month. I guess it has been my turn.

Jack has been doing pretty well. The medication for the GI issues seems to be helping some. He has been struggling with all the same issues, but they seem a bit better. He is snotty and has a cold this week. It is not traveling quickly to pneumonia like normal. I think this is because Jack at this time is on a very strong antibiotic till the end of May. He had a rough night last night. He had a tetany episode. This is very painful. They did give me new medication to try during these episodes. I used it for the first time. It is hard to tell if it helped much or not at this point.

We are currently dealing with finding a school with a nurse for next year. The leap program Jack is currently in is closing. It is unbelievable that the state is allowing these programs to close. Jack gets all his services at school and it has been a good experience for him. We will have to drive at least 15 minutes one way to get him into a school with a nurse. We are trying hard to figure this all out. Believe it or not we don't have much time and they don't have many openings for the fall.

Please keep Jack in your prayers. We are asking people pray for the current school situation for the fall. We are praying it all works out OK.

Update on trip

We came home from Rochester a little while ago. The trip was fine. The appointment went OK. The genetic doctor there agreed with the specialist here and in Cleveland. She doesn't think he has ehnlos/danlos 4. I guess that is not a mild form. She thinks it is the mito disease mainy. She did say she could clinically say he has # 3 of that disease. That is the milder form . There is no reason even if he has that to make it a diagnosis. The mito disease covers all that diagnosis and more. She did do the genetic testing for the # 4 just to rule it out for 100%.

Jack himself did real well. He has been very shaky and high tremors lately. He is still snotty and having his daily issues. All and all this has been an Ok week. Jack has about a two week break from DR appointments. Hopefully nothing new will pop up. We just take things day by day. We deal with everything as it happens. I am happy the GI issues seem to be calming down a bit. The muscle pain and tetany episodes are there but seem to be less this week.

Update

It has been a while since I have updated the blog. Computer issues among other things. It is never a dull moment around here.

Jack is doing OK. He has been having some very frequent tremors and fatigue is definitely up. His stomach seems to be getting a bit better. The upping of the medications seems to be helping at this point. The allergy testing came back. He has no allergies. They think (allergist, Ent, and pulmonary DR) that jack has sinus disease. This too due to the the mitochondrial disease. Low tone, and all the muscle issues causing this. They are trying some antibiotic treatment, and sinus flushing for now. A CT scan in the summer will be the next step. He has been exposed to so much radiation at this point that we are waiting. His asthma has gotten a bit better since the pneumonia has passed. He is still having the tetany, but it has gone down a bit. Definitely need to get back to the eye doctor. We are still having current issues there. All and all a OK week.

We are going Tuesday to Rochester to see a genetic specialist for some testing. This is regarding the added diagnosis. Some of the DR's are in agreement and some just say it is the mitochondrial disease. We will see from this testing. The Enlos/Danlos diagnosis can be something that needs to be watched closely so we want to be sure he has this.

Praise be to God. Jack has been sleeping a little better. Every day is full of obstacles and frustration but we just give the glory to the Lord.

Trip Report

The trip to Cleveland went well. Thank you to all of you who prayed for our safe travel. The weather on the way there was a little bad. The way back was fine. It was a long day, but both of the boys did well. It is easier to stay over, but this was the cheaper way.


The appointment went well. We basically just update the specialist on all that has gone on the past 6 months with Jack. He does an exam and goes over everything. He ended up giving me a letter that I was already supposed to have. It states about Jacks conditions, precautions and ways procedures should be done. It is signed from the mitochondrial disease specialist. He said that the tonsil and adenoid procedure with jack was not done in a correct manner for Jacks condition. He said that is why Jack did so badly with recovery. He said that was why he got dehydrated, sick and ended up missing so much school. He also said that all these tests Jack has been being put under for he has not been getting proper treatment for his condition. Jack is not supposed to fast. If he has to fast or be put under he needs to be admitted first and fast only while getting IV fluids. He also with the surgery should have never been released so soon. He said it would have been a minimum of 4 days in the hospital for a kid like Jack. He said Jack is being treated like a regular kid and shouldn’t. He also said we have been lucky and it could be very dangerous for Jack. I told him I spoke to the surgeon prior and told him what I new about the disease and was told he would be in the hospital a minimum of 3 days. I also said after the surgery I never saw his ENT surgeon again. The nurse new nothing about Jacks condition and the doctor doing rounds only new a little. He told me in a situation like that use the letter. If I am not being listened to I can call him at anytime. He has his beeper 24/7 and that is what he is there for. He said out of 6 months, calling him 1 time a month is normal. He said some parents call 3 and 4 times a week. He over sees Jacks case and that is what he is there for. He also talked with us about Jack's reoccurring infections. He talked to us about injections. There are pros and cons and we need to think about it. We talked about the GI issues and the tetany. He gave us a script for a pain medication to use at the onset of the tetany. He also took him off of some other medication for nerve pain he had him on. It was not helping so why leave Jack on it. As far as the GI issues he says Jacks medication has not been changed long enough to see an improvement. We will see how it goes and call him. He did an EKG. He ordered some extra blood work. He asked us to check with the specialist here regarding some other tests to make sure they have been done. Jack does something with his hand that concerns him. He wants us to watch him and update him on that in 6 months. Jacks growth looks good. Cognitively and developmentally he is still on track or above. He is concerned that Jack has had pneumonia 5 times and is only 3. We will be watching that. He said he sounded pretty good. The asthma is going to be worse because jack is sick so much. Regarding the chronic sinusitis, he said get the allergy testing finished. He also said to not let anyone do a surgery or procedure with out me and them talking to him. In 6 months hopefully I will know more about the sinus and allergies and can report back to him.


All and all the appointment went well. It is truly a blessing to see probably the best doctor in the US for Jacks disease. He does all the case studies for the UMDF. He gives us hope. He said in 2 years from now there will be more tests available for more answers. He also said some of the procedures Jack has had were not available 5 years ago. He gives us hope for Jack future. He is such a young and smart doctor. God is truly using a young doctor like this. What a blessing he has been to us. We thank God for allowing us to get hooked up with the best of the best. Jacks specialist here is excellent also. He doesn’t specialize in the disease, but has all the cases here and is a great guy. He leads us in all the right directions. He will admit if unsure and point us to the specialist for the disease. Both doctors email regarding Jack and other cases. It is good to know they are connected.


It is frustrating to know I have been right regarding how Jack has been treated. I tell these doctors and nurses and they either don’t listen or say they are going to check with the specialists and don’t. I know now I will be more aggressive then I have. I am sure they will love that. I will pull out the letter and if they still don’t want to listen I will get the specialist on the phone. I have to for Jacks sake. We are lucky he hasn’t been harmed nor had any other hard recoveries. Not many physicians know that much about Jack. They also look at him and assume it is a minor form of the disease. Little do they know his muscles are being impacted greatly and he can crash quickly. I am sick of people assuming and not understanding. I have gone through this with Jack with therapists, and even friends and family. People look at him and at times think he is not that bad. I say come live with him. Be here at night. Spend a full 24 hours with us and you will see. He has Ok days. I haven’t seen a good day in a year or more. Every day is full of obstacles and most of all pain. He has to be watched so more carefully then people realize. Yes, he could be worse, but because he is not mentally handicap he is not that bad? I have to be so careful with him and have been right so many times. He gets very ill quickly and I have to be on point.


Thank God he has had his hand on Jack. God's hand is all over Jack. I believe in faith what the word of God says. I expect the Lord will do what he says. He is the author of Jacks story and is going to use all of this for His purpose and glory.

Update

Jack is a little better. We took him to the doctors on Friday. They said his ears still looked bad but could see a little improvement. His chest didn't sound any better, but was not worse. We have to take him back this week to follow up and go from there. He still is having trouble breathing but seems to be a tiny bit better.

We are just praying the medications work and he can get rid of the pneumonia all together. Depending on how he is doing he does have a appointment on Friday in Cleveland. We will see if he is well enough to take him as the week goes on.

I will update the blog regarding Cleveland, his last GI appointment, and the pneumonia towards the end of the week.

Pray for Jack Please

Jack is not doing so well. Even though he has been on antibiotics for bronchitis he has not gotten better. Yesterday in the early morning we took him back to the doctors. That night he had been up crying complaining of his ear. He also is still coughing and was having trouble breathing. He stopped breathing 2 times. It was only for like 10 to 15 seconds, but it happened.

After a examination and a chest x-ray they said he had a nasty ear infection in both ears. The cronic sinusitis is still there. They also said after getting the report from the radiologist that he has upper lobe pneumonia. They put him on a much stronger antibiotic. They talked with his respritory doctor who put him on an oral steriod. We have to go back in 48 hours. If Jack is still not responding to treatment then we would go to the next step.The next step would be to possibly put him into the hospital.

Please pray Jack responds to this antibiotic. We do not want to have to go to the hospital.

Jack is acting pretty well. His spirit is high. When the pain medication wears off then he complains, but other then that he acts OK. I can tell he doesnt feel well because he is not eating well. He is also having diarrhea. Diarrhea alone can be a issue for Jack. We are just praying the pnemonia gets better and the diarrhea stops.

I had started a blog to update everyone on Jacks last GI appointment. He also has cronic sinusitis. The ENT and allergist are dealing with that. I will update all this at a later time.

Please keep JACK IN YOUR PRAYERS. He is a trooper. I am sure he will be fine. God is in control.

Update

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.

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.

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.