Jack's Mom, Jessica has started an online blog about Jack's life. The blog keeps an up to date account of what is happening in Jack's life, medically, emotionally and spiritually.
Each new post will now be updated here.
If you would like to be notified when the blog is updated, please email me @ info@jackmclean.com and I will add you to our mailing list.
Thank you for your support!
Kimarie, Website Administrator
Wednesday, September 24, 2008
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 an 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.
Tuesday, July 8, 2008
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.
Monday, June 9, 2008
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.
Tuesday, April 15, 2008
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.
Tuesday, March 11, 2008
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.
Sunday, March 9, 2008
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 is due to 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 an 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.
Monday, February 18, 2008 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 have 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.
Sunday, February 10, 2008
UpdateJack 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.
Thursday, February 7, 2008
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 an examination and a chest x-ray they said he had a nasty ear infection in both ears. The chronic 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 respiratory doctor who put him on an oral steroid. 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 doesn’t feel well because he is not eating well. He is also having diarrhea. Diarrhea alone can be an issue for Jack. We are just praying the pneumonia gets better and the diarrhea stops.
I had started a blog to update everyone on Jacks last GI appointment. He also has chronic 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.
Tuesday, January 29, 2008
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 an 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 an 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, and never seeming to recover fully from colds... having a cold turn into bronchitis or pneumonia; or 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.
Making Jacks appointments, searching for answers, and daily chores are all a full time job. I thank God he gives me the strength to do all that, work and more.
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.
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 our 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 parent’s 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 we 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 finally seems to recover from the surgery. He missed almost a whole 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 wonder. 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 basis. 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.
Tuesday, December 11, 2007
Jack is still having a hard time. He is not eating and he is drinking minimal amounts. I called the ENT and they wanted to see him. He said he is borderline dehydration and he said that he was on the fence about admitting him for hydration. He is not pleased with his eating, drinking, and urinating. He said he didn't want to have to put a IV unless totally necessary. We decided to watch him the next 24 hours and go from there. I feel confident that I know what to look for. I also think disease wise Jack is better off home. He lost a pound and a half. For Jack that is not good. The doctor wrote me a script for some anti nausea medication and told me to fill it if necessary. He doesn't want me to fill it unless necessary due to some of the side effects. It is hard because Jack is having all the GI issues to know exactly what is the cause of the not wanting to eat. We are suppose to travel this Friday to Rochester for a GI second opinion. We hope Jack is well enough for a trip.
Jack himself doesn't want to go back to the hospital . I have told him unless he starts drinking that is were he will have to go. He is doing a little better the last few hours with the drinking. We are hoping to see him perk up. Day 5 is a hard day after this surgery according to the ENT. Due to Jack disease any surgery or procedure is harder. It can throw him into a down turn. Hopefully this will not last too long and Jack will bounce back. He was having a lot of GI and leg pain before the surgery so this just adds to it. It is just hard to see him in pain. Seeing someone you love, especially someone so little in pain day in and day out in one way or another is tough. It is just amazing how well Jack does. He is such little trooper. He is brave, strong in spirit, and just plain amazing. God is good!
Sunday, December 9th
Please Keep Praying
Please keep praying for Jack. He is having a really rough time. A simple procedure for most kids is seeming very difficult for him. Part of me is not sure debating the doctors and talking them in to him coming home was necessarily good. With Jack we never know what decision we make is the better one. He is sleeping better here, but hydration is becoming a huge issues. He also cant get he anti nausea medication at home. He perked up the eight hours he had it. Then yesterday was not eating or drinking well again. Then last night perked up a little. Then in the middle of the night or should I say early morning started throwing up. He couldn't even keep water down. He will not eat and we might be at the ER tonight if he doesn't improve. He did in the last two hours begin to hold down water. He was trying to nap and coughed and woke up crying. The lack of fluid also seems to be causing extra leg pain. So his legs hurt and his throat really hurts. Due to all of this and the disease he is full of fatigue and very low endurance. He has black circles under his eyes and this is taking a lot out of him.We are also still on the watch for some of the complications that may arise. I think I am possibly starting to see one. We will keep a close eye the next few hours. Some of the complications can arise as late as week three.
Anyways I wanted to update the blog for those of you who are wondering. Also the only thing we can do is ask for prayer. It is are human nature to worry, but we are trying to put it in God's hands. Please pray if you have a minute, and ask the Lord to help Jack get through this.We are hoping we don't end back up in the hospital, but if it is best for him then so be it. Please pray that the Lord gives us strength and wisdom.
Thursday, November 15, 2007
Jack finally had the MRI of the hip and Knee done! We are so pleased it was able to get done. Thank you to everyone that was praying. We don't have the results yet. We will know next Wednesday at his appointment with the orthopedic surgeon.
He did pretty well with the MRI. He was under longer and did have a little hard time coming out of the anaesthesia. He was under longer then he has ever been. From what I have been told about the disease for some reasons these kids can have a hard time coming out of Anesthesia. I got a little concerned for a moment. I new it was taking him longer and when I was trying to wake him up he wasn't coming out of it. So even though I don't think I let on , I was a bit concerned for a moment.
He did have some breathing issues. When I came in to the room he was wheezing and snoring differently then his norm. The anesthesiologist was messing with his neck and trying to get him to breath better. He said to me he needs his tonsils out. The tonsils are obstructing the air way. I said well he is getting the adenoids possible tonsils out in three weeks. The anesthesiologist did come and check on him several times. This I know from previous MRI is not the norm. He said he was concerned with the breathing and the wheeze. The wheeze didn't last to long. That was good. Other then those two issues it went well.
They had said if they don't see much the appointment would be about 45 minutes to an hour. They also said they would inject dye if they saw it necessary. Well he was in the MRI for an hour and a half and they did inject dye so I don't really know what that means. I can only speculate at this point. Jack himself did great. He didn't even cry when he went in the room and the mask was put on his face to go to sleep. We don't lie to him and try to explain things best as possible. He was playing and talking to the doctors. They all were commenting on how sweet he was. They were so surprised by how calm for his age he was. I guess he is getting use to it all. Then again he has always dealt pretty well with it all. He hates to have blood drawn or shots, but other then that he is good. He just amazes me more and more. What a spirit! I know he is my Son so I am partial, but if you get a chance to know him you will know what I mean. God definitely has something special planned for him. He is going to use him!
Tomorrow we have a full hospital day of pre testing and meeting with the surgeon for his upcoming surgery. Jack is such a trooper! Please pray Jack does well. I am sure he will , but it is a lot. He is having some fatigue issues and tremors from the long day today. Please pray it doesn't make for a hard night for the next few nights.
Thanks to all of you that pray for Jack. We truly believe it is why he is doing as well as he is. Every day has its obstacles, but we are thankful he is not worse then he is. We believe strongly in the power of prayer.
Jack has a cold AGAIN! He is snotty and coughing. It has been like this for a couple days. The MRI is next Thursday. All we can do is hope he gets over it by then and doesn't get worse. I think I will feel like screaming if I have to reschedule it again. He is doing a bit better stomach wise. His respiratory doctor upped his stomach medication. He said when he saw him last that his throat still looked burned and with the fact he wasn't getting better he wanted to try it. He is complaining every other day instead of every day. If it is multiple days in a row he is complaining then it seems like we will get a day when he doesn't mention it after a bit. He is still dry heaving and throwing up but it is not everyday. His leg pain is still there but seems a bit better. Not every night or every day. He still wakes up every night with leg pain, stomach complaints,coughing, or something. He has had a few rough days this past few days with the tremors and instability, but he is getting or should I say now has a cold so maybe that is why.
I called the doctor that ordered the immune testing and she is out of town. The women I talked with said if there was anything bad she would have called. I am assuming the labs were fine, or at least not to concerning. The GI stuff still really bothers me, but we have to wait for the appointment. I am just trying to focus on the pretesting for surgery, the MRI, and the surgery for this month. I take it one month of appointments at a time.
I am just starting to realize that there is not much I can do at this point for Jack. He hasn't had a good day in a long time, but he is having better days the last few days. Everyday for him is always going to have signs of the disease and the issues. It is just hard when it is so full of so may of the issues and he is in pain. I am thanking God this week his stomach has let up a bit. We just have to take each day at a time. We have to try to watch Jack carefully and help to prevent as much as possible things that will trigger really bad episodes. Preventing is not the right word. I guess what I am trying to say is there are things that we know now, will make him have pain and be worse so we try to prevent those situations. Everyday has some kind of obstacles. I am just glad this week it is lighter. I am not happy about the cold and this could send us into a really bad week but only time will tell.
Please pray Jacks cold gets better by next Thursday and we can FINALLY have the MRI done. Please pray the pretesting on Friday goes well and he is OK.
We are looking forward to seeing everyone that can come to the benefit on Saturday! Mac and I want to thank everyone who is putting Jack benefit together. It is hard to be in a position to need a benefit. It is hard to realize this is all what it is. I will say that we have seen Gods love and hand in it all and are forever grateful to everyone who is trying to help.
Jack has had a OK couple weeks. He got over his cold, thank you Lord! He is STILL having the stomach issues and complaining of stomach aches. He is still dry heaving and vomiting, but it is less. He is not vomiting every day. He had a real bad night this past Sunday. He like normal woke up with leg pain. This time it was one of his pretty intense ones. He was crying and both legs were cramping. I could feel them when he asked me to rub them. They get so tight you can feel it. He had to go to the bathroom and went right down to the floor and could not walk at all. Monday morning he couldn't walk at all at first. After about 45 minutes he started to walk and do better. He had some tremors, but other then that he seemed much better. He did not have his regular full nap on Sunday. He also had added play. You just never know. In that same situation some days he would be OK. Never fine, but it would just cause unsteady walking and tremors. We got that and much more this time. He had some choking issues yesterday. He went trick or treating, but that was a bit hard. He had to go in the stroller a lot. He was very unsteady and not doing to great before we even left. I don't think anyone but me and his father noticed that, but we did. He couldn't carry his bag after about 10 houses. It was just to heavy for him. He said he was tired a few times also. He was good about it. He knows when he just cant go any more. He let me stroll him right up to doors. He would say trick or treat and I would take the bag and get the candy. It is one holiday we have a hard time with anyway. We might have to stop it all together if it gets too hard. The boys can always just pass out candy. I have some very cute pictures from last night. Jack was Buzz lightyear. I will download the pictures soon and put them on the main blog page. I think everyone will think he was so cute!
He saw the rehab doctor last week. We are trying some new braces. the ones they had made were not correct. They also want to try some knee taping. she said she knows everything is disease related, but she wants to try to help with the function part of things. If we can try to eliminate some of his issues it could help strengthen Jack in some ways. She knows he has to deal with these issues and they will not go away. She is trying to help with the pain. She believes some of these things might help lesson Jacks pain. I listen to all the 13 cooks in the pot. It is very difficult, they all see things different. I just will try anything to help Jack. Since there is no cure or prognosis anything we can do to help make the pain less is top on my list.
We got his appointments scheduled for the GI second opinion and the allergist. The GI appointment is December 14th and the allergist is not till January. Right now we are focusing on all the other appointments coming up. November is a crazy month for us with his appointments.
Please keep Jack in your prayers. Pray he doesn't get sick again. Pray that he is well on the 15th of this month for his MRI. Please pray for the doctors and give them wisdom in treating and dealing with Jack. He also has surgery at the end of the month. Please pray there are no complications. Help us as his parents to make the best decisions. It is so hard with so many doctors involved.
Jacks benefit is being done by family and friends. It is coming up in just 9 days. The fundraising committee is selling tickets, magnets, bracelets, and passing out flyer's this Saturday starting at 2:30 at the super walmart in Camillus. You can get your presale tickets for next Saturday there if you would like. I was told that you can always buy them at the door also.
We just want to thank everyone that is praying for us . We also want to thank everyone that is helping to put this benefit together. We have seen such kindness from so many people. Words can not even express how thankful we are for everyone's help, prayers, and support
Wednesday, October 17, 2007
I took Jack to the doctors the other day. He had a sinus infection and bronchitis. They said it kind of sounded like croup, but with Jack it is hard. They put him on antibiotics and told me to do his steroid puffer and albuterol treatments. He is doing better today. Still snotty, but it is almost a all the time thing with him. If it is not a cold it is his allergies. The cough sounds kind of bad, but he is feeling much better. He slept better the last few nights. He only got up once or twice instead of numerous amounts.
I talked to Jack's specialist here yesterday. I filled him in on all that is going on. As far as the stomach, he talked with the peds GI here. He said he thinks we should go to Rochester for a 2nd opinion since we are seeing little improvement. Depending on what they say we will try some possible treatments for a stomach condition that kids with mitochondrial disease can experience. If still no luck, then possibly Boston. I told him about the new added diagnosis of the hyper mobility syndrome, Ehlers-Danlos 4 . He was surprised that she diagnosed Jack with that. He has never seen a kid with mitochondrial disease have that. He said he knows Jack is extremely flexible, but didn't realize the severity. I told him she took Jacks leg and put it behind his head. I also told him that while we were there she called the specialist in Cleveland and he was not surprised at all with this diagnosis. He said that he must have seen it before with mitochondrial disease then. He told me some of the seriousness of it and things that need to be watched. I then told him about the immune testing they want to do and he said he agrees. I also told him what the rheumotologist said regarding the adenoids. He said he sees her point, but if there is any obstruction of the air way then due to the mitochondrial disease the obstruction should be removed. He said to go get the immune testing done and if they find anything to have the ENT contact her. He said he would still say remove the adenoids and possibly leave the tonsils if there is an immune disease or disorder. He definitely said to go get Jacks eyes looked at again. He had said that before the added diagnosis. He and her have noticed somethings with the eyes. He also said to have her report sent to Jacks cardiologist and call them and tell them of the new added diagnosis. Then see if they want him to come in before his next scheduled check up or to wait. Then he said to also get a referral to a allergist. The allergist he said possibly even before the GI second opinion if possible. He now thinks the stomach, immune and everything else all goes together and fits in the mitochondrial disease puzzle. He said maybe not because of this issues it caused that, but he thinks now after seeing the biopsy, new diagnosis, immune issues, and me telling him all that has been going on with Jack that everything might end up fitting. Jacks sedimentation levels are always high and he is now thinking it could be caused by something going on with the immune system. The stomach I think he is thinking could go along with some type of allergy thing.
So this week coming up I will be taking Jack to an appointment and after to get the blood work for the immune testing. I am waiting to hear back on the referrals. We are keeping the current surgery date and it looks like regardless we will most likely keep it. He said to do what the rhuemotolgist and the specialist in Cleveland said regarding medications and hopefully they will start to help with his pain.
I never realized how hard it would be to make sure he gets all his medications each day. The once a day ones are easy, but the two and three times a day ones get hard. Plus they taste nasty and I cant even stand the smell of one of them. He is such the little trooper. That was about it...I think for the conversation. I do really feel like I am forgetting something important....I guess I will add it in another blog if I did.
I am also filling out forms to get reports and calling doctors. Jacks appointment schedule for November is crazy. It is getting very hard to keep any type of job. This kind of stuff is were sometimes I wish I had help. My husband has two jobs and cant help much with appointments and taking time off. Keeping all this straight and calling in prescriptions, dealing with insurance, doctors, reports, calendars and everyone in the family schedule is becoming a full time job. I do what I can or very late at night. I am not complaining...God has given me the strength to do it. Yet,I would be lying if I said it doesn't get draining or hard. Sometimes I feel overwhelmed. I still have all the regular things of life to deal with and a marriage and another son. I try to balance it all. It is just like sometimes I say is this really real or am I dreaming. Then I realize I am not dreaming and it could always be worse. God gives me the strength to keep going. I just hope and pray I do a good job and make the best choices for both my boys. That is one of my biggest fears is to make a bad choice for my family.
There is just so much I want to do. Be a good parent, friend, family member, wife...and I feel like I don't have the time. I haven't had time with some friends in forever. Hard time fitting in family....time for my husband....I don't want to let anything pass me by. I don't want people to think we have changed or don't care about them. I just hope people understand.
Jacks attitude and my other son is what keep me going. Jack acts is if everything is OK. My other son always has words of encouragement even though he doesn't know something is wrong. They deal with things so well. I guess that is why the scriptures refer to us adults being like children. Jack and Noah are such blessings! We as a family are going to have such a testimony. I think in some ways we already do!
We went on Friday to see a Rheumatologist at the children's hospital in Rochester. It was another frustrating appointment for us. Lots of questions and not to many answers. More tests for Jack also. After listening a little about Jack and reading what she had from his specialist here she did an exam. She said Jack has Hyper mobility syndrome-Ehlers / Danlos 4. We pretty much new he had hyper mobility issues. She just diagnosed it with a name. She said in her opinion a long with the mitochondrial disease causing leg pain, that people with this syndrome can have a lot of leg pain and issues such as we described with Jack. She said they would prescribe medication to help with the pain and all doctors should be aware of this diagnosis when evaluating him. She called his specialist in Cleveland while we were there. The medication he put him on for the muscle and or nerve pain is not what she would normally prescribe but she thinks it will work fine. She also said it is a better choice for Jack now that he is having all these stomach problems. She said once and if they get resolved the stomach issues and the current medication doesn't help then we can try something else for the pain. There are some things that should be monitored with this syndrome. They are also the same things he needs monitored for the mitochondrial disease. They just need to know he has this syndrome also so they can look deeper. She wants him to go back to the eye doctor and have the lens of the eye checked and the cartilage. When he does his follow up with the peds cardiologist she wants his heart valves checked.
Aside from all that she is a rheumatologist who also sees kids with immune issues. She was a little surprised since Jack is always sick that immune system tests have not been done. I told her everyone blows it off to the allergies and asthma. Even more now that he has large adenoids and tonsils. She sees that point, but since birth one of my main complaints has been he is always sick and catches everything. Fevers at times that are unexplained also. Anyway she has ordered immune system function tests. She proceeded to say that we need to get these tests done soon since he is scheduled for the adenoids to come out in November. She said if the tests show he has an immune system disorder that taking the adenoids or tonsils out might not be a good idea. I told her they want them out due to the mitochondria disease and not wanting to put any stress on his heart or other muscles due to the snoring. She said in that case it still might be better to take them out. Either way she said get the test done first and if they find something they will all have to have a meeting of the minds and decide what is the greater risks. Other then that she said he has no rhematology diseases. She really didn't have much to say regarding the periods of not being able to walk at all. They all pretty much say it is muscle or nerve related. Weather it is his muscles are so weak he cant walk because they give out or he is in pain and cant walk...they don't really know for sure.
Today was suppose to be the MRI and AGAIN he cant have it done. He is very sick and has a terrible cough and fever. The fever started Friday night late or should I say Saturday morning. He started last Wednesday with a snotty nose and cough. The cough got horrible on Saturday. I am taking him today to the doctor to see what is going on and if he is contagious. We had to reschedule the MRI for November.
Needless to say we are very frustrated. He is still having the stomach issues and I am waiting to hear back from his specialist here. He called on Friday when we were on are way to Rochester. I have to go over all of this with him and see what he thought of the biopsy. Hopefully I will talk to him by tomorrow.
Frustration is a normal feeling I feel lately. Each doctor looks at everything from his speciality point of view and they have there own opinion on why this or that is going on. Bottom line most of all of this is due to the mitochondrial disease. There is no cure or prognosis and they are trying to help him with pain through medication. Medications are the only thing they can try to help with the mitochondrial disease and all the stuff that goes along with it. The GI issues are not totally fitting so hopefully they will get to the bottom of it and be able to do something. If not then it will probably be due to the disease and we will see what things we can try. It is so hard to have him sick or not feeling well all the time. It is hard as his parents to not be able to fix the problem. Coming to the reality that there is not much we can do at this point is hard. With everything it is a watch game. As things arise deal with them. It is frustrating too because due to his age even the things that arise they want to monitor and not always due anything or try something. It is a wait and See game and I think they don't know what to do sometimes. I have to just realize there is no cure or prognosis and pray the little things that they can do will start to help him have as much of a normal life as possible. I just hope he can have a life with less sickness and pain. Sometimes I say to myself he is only three...why....what if...what will be of his future...he cant do what other children can....I feel bad for him......then I look at him and see how well he deals with it all. He is so happy and doesn't let feeling cruddy keep him down. I have to believe in faith that God is in control and has a purpose for all of this.
Pray Jack gets better and is free from bad illnesses in November. He has the MRI and the surgery scheduled at this time. Pray for wisdom for his specialists regarding everything including the surgery. Pray we get somewhere with the stomach issues and that Jacks pain becomes less.
update
LATEST UPDATE
MRI Update
Jack can not have his MRI done today! He started Saturday night with throwing up and it lasted till last night. He is better today. They want him clear from vomiting for a full 24 hours before they would put him under. He still has a little cold, so they don't really like that either.
It is very frustrating. There are several reasons why we need this MRI done. I don't want to do anything that puts Jack at a higher risk while under anesthesia, but are luck is very frustrating. We cant afford for me and my husband to take days off especially if a appointment is not going to happen. The only good thing is he is contagious until he has stopped vomiting for 24 hours so he wouldn't have been able to go to school today. I would have had to take the day off anyway. I wouldn't want to put anyone else's child at risk.
Are luck with this appointment has just been very off. Since school started it has been one thing after another with Jack being sick. I figured this would happen! It is just hard when we are trying to wrap this appointment up. We need to know more about this left hip being out. We also need to have it done for several more reasons! We are just frustrated! I now need to take another day off for the rescheduled MRI. My husband will probably not be able to and I will have to be on my own when and if this appointment really happens. It was luck that my husband managed to be free to go. Anyways- things happen...especially to us lately. Just are luck. I guess I need to look at it from a more positive prospective. We are lucky the vomiting didn't send Jack to the hospital. A stomach bug for him is very serious. I know if I would have called the specialist he would have sent him in to the hospital to be hydrated. I was waiting to see if things got better or worse. Thank God he stopped vomiting before he crashed. He was having full body tremors. It is very hard to see him like that. I know he could be much worse, and I am thankful he does as well as he does.
Pray Jack starts to feel better. Totally free of this cold and bug. It is enough to deal with his regular problems from day to day. A nasty cold and stomach bug makes it harder. Please pray that Jack is well enough to have the MRI done for his rescheduled appointment in a few weeks.
Update
Jack has had a bad cold since last weekend. It is frustrating because he is on two different antibiotics for the stomach issues. He is on allergy medication also. Still when he got this cold it was pretty nasty. He was not sleeping well and of course it went to his chest. He is doing better the last few days. He is still snotty and having a cough, but doing better.
Jack went to the ENT last Monday. His specialist here had refereed him a while back. It was one area that had not been on the priority list and He thought we should check it out. The appointment was OK. I have mixed feeling to say the least. They want to take Jack's adenoids and possibly his tonsils out. He said it would stop the snoring and possibly help with the recurring colds. There are some issues that can happen to any kid who has this procedure. Jack is at a greater risk for complications due to his disease and low tone. If some of these complications occurred they should be able to fix them , but it would require more surgeries. Also normally this is an in and out the same day procedure. Jack would have to stay in the hospital to be watched for these complications and due to the disease. For Jack it would be a minimum of 36 to 48 hour stay. The ENT is sending the report to both his specialist's and his pediatrician. He is setting us up for a pre operation appointment and we can go from there. I am very unsure at this point what to do. Jack has gone through enough in the last year. It is not just a simple procedure like it would be for a regular kid. There are so many what ifs.
Jack is scheduled for the MRI for this Monday. He is still sick so I called them. Last time we got there and they would not put him under due to the cold and reflux. They were afraid of him aspirating. When I called yesterday they said since we have already put the appointment off and they cant get him back in for about 4 to 5 weeks for me to wait till Sunday. They will have an anesthesiologist call me Sunday and we will go from there. He is getting better so hopefully we can have it done. The procedure it self is not what worries me. It is the fact that this procedure he will be under for possibly two hours. They said if everything looks fine and it goes quickly he would be under 45 minutes to an hour. That is the best case scenario. Jack has done fine with anesthesia during the scope and the surgery in Cleveland. He also had a MRI about two years ago and he was OK. It was a brain MRI though, and they do them quickly. Him being out for a longer period of time increases risks for him. As of today he will be getting it done on Monday. We will be up at the hospital a long time. They have us come an hour early to begin with. Then the procedure set up time, procedure, recovery ect... It is hard because Jack's father works two jobs and I will end up being on my own. It will be a long day!
Please keep Jack in your prayers. Pray he is well enough to have the MRI done. Please pray that him being under longer doesn't cause any issues. We ask that everyone pray all goes well.
Keep us in your prayers regarding making the best decisions for Jack. It is very hard to know what the right decisions are for him. He is doing better right now and seeming to be coming out of this down turn he had been in since April. It is easy when he is doing better for people to under estimate the disease and how serious things can be for Jack. Please pray we as his parents make the best choices for him.
Today was Jack's first day of preschool. I had a meeting last week with his therapist's, school nurse, teacher, and principle. I have been very impressed by there program. We went to open house yesterday. He was a little scared. There was AM and PM parents and kids so it was a lot of people. He warmed up after some of the people cleared out. He seemed OK with it all. This morning when he woke up he was excited. He was ready to go. When we got there he was OK. He went right up to the door to Wait. Once they started to come out he got a bit scared. He ran and said he didn't want to go , but in a Jack joking way if you know him well. Then I picked him up and the head teacher came over to talk with him. He told her he had a water bottle in his bag if he needed it. She then said OK and tried to take him. He said "NO I WANT TO WALK" So I put him down and she held his hand. She introduced him to another boy and held this child hands also. Then they walked in and he didn't look back. When I came to pick him up they said he did well. They said mid way through he started crying for me. They said it was hot so they took him in the therapy room which has AC. He stayed in there and wanted to skip Art class. I asked him if he had fun he said yes. I asked what he did he said "play and cried for you". Then he said "the teachers are mean and I am never ever going there again". I asked why and he said "because". I am not sure what that is about. He said one girl was mean too. I said well you have to go back Monday to play with your other friends and he said "OK". A weird conversation so we will see how the first full week goes.
Keep Jack in your prayers. This is a large change for him. Pray for us also. It is hard with his issues to trust that people know what to look for and do with Jack. Things can pop up quickly. He has little signs that most people (even people close to him) don't know to pick up on. Pray that his therapists are good and his therapies go well. His old PT is going to do some transition visits so that makes me feel a bit better. One good thing is that morning is Jack's best time usually. The hard thing with that is we just don't want them to think he is better then he is and have something happen. He has been in that situation many times and the out come has not been good. I will say that they did good with the over heating today and making sure he got into the AC. I have to say I am pleased at this point. They seem to be listening from the meeting and taking this seriously. We want him to function as normal as possible. We also must not forget how fast he crashes. It is hard, but we pray it all goes well
Friday, August 31, 2007
We would like to thank everyone who was praying for Jack on Thursday. He came through the procedure well. He did take a few to come out of the anaesthesia, but that was more because they let him come out of it slowly. They also used deeper medications then normal due to the fact that Jack must have a breathing tube put in while under anaesthesia. This is due to the asthma and reflex.
They also put in a Ph probe that he had to keep in for 24 hours and have removed today. The doctor spoke with me after the scope and biopsy procedure. The doctor said everything looked good. No abnormalities, ulcers, ect.. and we would see what the ph probe and biopsy indicated and go from there. If everything checks out OK it would all be disease related and he would be referred out to the swallow team and see how they could help.
We went today and had the probe removed. They downloaded and read all the information. The doctor said everything looked normal. Even the times during the night Jack complained of a stomach ache appeared normal. He did dry heave during the probe time and that period appeared normal. The doctor said we should have the results from the biopsy by Tuesday or Wednesday and go from there.
I received a call at 4:30 from the doctors nurse. The biopsy results were in. They did see something. Jack stomach tissue (even though the doctor didn't see it during the scope) is irritated. He has major gastritis and pylori virus. They said he has to go on antibiotics and his other stomach meds increased for two weeks. Then back to his regular dose of stomach meds and they would see him in 8 weeks. They said people can get this virus and they don't know why. They said that usually with the antibiotics you can get rid of it and some people are fine. It can be recurring in others. The nurse also said if he is not improving after the treatment then the doctor would pursue more tests and see if anything else is going on, but he definitely is irritated and has this virus and gastritis. I asked if this could in any way have to due with the stomach muscle being weak and the disease, but she couldn't answer that and the doctor will not be in till Wednesday due to the holiday. She left a note for him to call me and I will get some more answers then.
We are hoping he responds to the treatment and it is not recurring. We just want him to feel better. It is hard to have him waking up 2 or 3 times a night with stomach or leg pain. I hate to see him in pain. It is also hard to see him dry heaving or throwing up. If it is not one area it is another. I just tell myself it could always be worse and he deals very well with it. I guess he is use to it. I just feel bad. As his parents we want to solve his problems and cure his pain. It hurts us that we cant. It hurts us when we cant answer questions about his future. We just have to keep are faith and trust in God. He has a plan for us all. We have to trust in him and not lean on are own understanding. We have to not question, but trust. How hard that can be at times when nothing makes sense. If only we could see the picture through Gods eyes and understand the whole plan he has for each of us.
Jack inspires us. He makes us realize how ridiculous we can be. How precious life is. He makes me remember what is important. Then we get all wraped up in everyday life again. What pulls us away from are priorities and what we know is most important? That is a question I want to answer. God is showing us so much and talking to us through are life lessons everyday. Are we listening? Are we truly understanding this great big picture called life? All I know is jack is going to have a greater understanding earlier. I thank God for Jack's spirit and happiness around me
Monday, August 13, 2007
Monday, August 6, 2007
Home from Cleveland First I want to thank everyone who was praying for us while we were gone. The trip it self went well. We were able to take the boys to the Cleveland Zoo and that was an amazing zoo. We also took them to the science center and that was very enjoyable. Jack had to stay in his stroller a lot and he didn't like that. He did over heat a bit on Sunday and of course had some limping. He was actually the most unsteady and having to be carried a lot on Thursday. Other wise it was nice for us all in that respect.
As for Jacks appointment we have mixed feelings. The nurse did the typical vitals, and the doctor talked with us and used his computer while going over a lot of what has been going on. He made some recommendations and tried to explain things better since the confirmed diagnosis. As for the periods of not walking at all, he said (as he did on the phone) that it is probably nerve related and he has seen this in children similar to Jack. It could also be just muscle related and that his muscles are so weak they latterly give out. Either way he is putting him on medication. There are side effects, but he has used it many times and feels it will be safe. As far as the hip, and low tone issues, and falling he agrees with the Orthopedic surgeon. He said the MRI is the best way to go. As far as the PT part and rehabilitation doctor he said try whatever and see if anything works. He said bracing at night can help with the cramping and muscle pain. Regarding the stomach issues he feels the scope is the best step. He also said to try giving him peanut butter no jelly, before bed. This he said if they find nothing else actually wrong might help. He said if nothing else besides reflux is going on then it has to do with his metabolism due to the disease and the peanut butter might help. He (so did the doctor in Syracuse) said that cornstarch might also help. So we will try these suggestions. Regarding the over heating he suggested a cooling vest. Regarding his eyes he thinks he should go back to the eye doctor. He changed or should I say increased some medication and then added the other. He said regarding the periods of not walking at all if we see no improvement in three months to call him. Other wise come back in 6 months . I need to make sure he gets all the reports of what is going on. He didn't have any even though I have requested he get them. I am starting to request them my self and carry them to appointments. He will call regarding the gene testing they are doing on the muscle. That from April is still not done. We also talked with him regarding genetic counseling and worse case scenarios for our family.
He tried to keep us positive. Some in Syracuse have acted or implied Jack is going to be an orthopedic mess as he gets older. This he said is not necessarily true. Doctors and therapists, the war wages on!
He also said Jack (which I have said before) is considered a milder case because cognitively and developmentally he has not been effected at this time. That is good and he probably in those areas be OK. Muscles and nerves are more his area and yes pretty significant in his case,yet he still is considered a milder case. Fatigue and endurance issues will always be something he deals with.There is no prognosis and each case is different. He tried to be positive and tell us of a few kids like Jack who are older and doing pretty well. One that even plays football. He doesn't have the orthopedic problems like Jack and sounds even milder of a case, but he said Jack as he gets older may get stronger. This child of course cant play like regular kids. He plays 1/4 of a quarter and then skips a quarter before coming in to play. He practises different, and a lot of adapting has been made for him but he plays.
He was trying to help us look at the better then only the worse. It is hard because of this down turn. He also said the down turn could be lasting longer or worse due to the surgery.
We know it could be worse, we just hope and pray it doesn't get worse. Hopefully some of this months testing will help us to help Jack be in less pain. I also hope this new medication helps. We know after talking to him, life will not be like it is for other kids. We already new that, but he brought it home for us. This effects his energy and he will have to make adjustments. He will have to learn to deal with the fatigue and things to do.We just hope orthopedicly he gets better and his tone increases . The doctor said he will be more clumsy and we hope his instability will get better. What is hard as positive as we or he tries to be it doesn't change that there is no cure, no prognosis and know one knows. We have to take each day at a time and deal with each issues if and when it arises. When Jack asks me like he has, "can I play baseball like Noah", what do I say? I just don't know, it doesn't look good. If he does it will not be like everyone else. I have to remember Jack is not like everyone else and deal with that. Jack doesn't understand much, but in the next few years will start to more and more. I pray he deals with it OK. He gets frustrated now and has a hard time. Only God knows. I just want to take the pain away and make his life as normal as positive.
They are making strides with DNA and in the future I pray there is more we can do for Jack. Especially if he gets worse or has other areas effected.
Monday, July 30, 2007
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.
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 refered 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 ton 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!
~ Jessica
Friday, July 20, 2007
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 anesthesia for an extra 45 minutes to an hour. He said kids with mitochondrial disease can have trouble coming out of anesthesia. 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
Monday, June 18, 2007
UPDATE
Monday, June 11, 2007
UPDATE
