Update

Jack is having a rough week. His sleeping has been very poor. His naps as well as at night. He always wakes up at night, but it usually just once or twice and for shorter amounts and I can usual deal with him and calm his issues. Usually GI related or pain. Well this week he has been up a very lot. Leg pain mainly and a lot of cramping. He asks me to rub his legs and you can feel the muscles cramping. The only way I can describe it is like a Charley horse and it keeps happening for long periods of time. After he calms it seems he goes to sleep and them is up again. I have let him sleep with me after the third or forth time of waking because I am so tired. He then he tosses and turns and is up and needs this or that. He needs and I mean needs water and craves it . Then the bathroom due to the drinking. If it is not the bathroom for that then it is because he feels sick. Normally his naps are fine and he is so exhausted from school he sleeps well. This week or so he is exhausted, but is waking up during his nap after short amounts of time. He is very full of tremors when he wakes. He normally always has some light tremors when he wakes up and is unsteady. This week or so heavy tremors with a lot of instability. Today I got him to lay back down and he was having tremors while he was sleeping. He was very jerky and pail. His eyes for a while now have been doing some very weird things also. I have to call and get him back into the eye doctor. Another one of the many things on my to do list for him. He has been a little snotty which is normal for him. We just pray he stays well since his surgery is next Thursday.

We saw the orthopedic surgeon last week. She said the MRI looked OK. The xray taken showed the hip is still out, but not any worse so we are just watching it. Regarding his pain and periods of not walking at all and cramping she said to up his one medication. So we are doing that and we will see. She said something that I find impressive. I said to her that one doctor says this the other that regarding the not walking at all and pain and cramping. I said it is frustrating because I feel like they are mainly saying the disease is the cause and there is nothing we can do or something totally different. She said none of us know why this stuff is happening and we can only blame it on the disease or give are opinion none of them really know. That is what we already know but I gave her credit for saying it. They don't know and that is hard. I have been saying that all along. Doctors practise medicine and that is exactly what they do. There are not many good doctors out there. If you are not happy with a doctor find another. When you find a good one that cares, keep them. I thank God in our case with Jack we have found some good ones.

We see his specialist here right before Christmas so hopefully he can help in some way if the increased dose does not help with the pain. He also goes for his GI second opinion this month so hopefully we get somewhere or find a little help. The respiratory doctor had upped his medication due to his throat still being burnt. The insurance doesn't want to pay for the upped dose at all so that has been fun. Pay full price or have Jack go with out. Change the medication there is issues with that. There is never a simple answer. So we will see if we get anywhere in a few weeks with this new doctor.

Jack's spirit is still great. He even when tired acts so good. When he first wakes from a nap he is cranky but with in 10 minutes he is fine. He is all excited about Christmas and is all about the snow. The first snow fall he was overwhelmed with joy and excitement. I think a lot of us need to restore the joy and remember what it is like to be a child. Even though Jack feels bad everyday and has some obstacle he still presses on. Little complaining, little fussing, and enjoying his life and the little things. He is such an inspiration to me.

MRI

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 lye 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.

Thank You / Update

We want to start by saying thank you to all the people who came to the benefit for Jack. We were truly blessed by all the love and support. So many people came and gave of there time and money to help. We are forever grateful.

He did well on Saturday at the benefit. It was pretty over whelming, but he did well. He stayed in his stroller enough that he was not too bad last night. He still woke up three times and had some leg pain, but not as bad as I expected. I must say thank you to his Teacher from school for that. Talk about an amazing women. She stayed for the whole benefit and helped with Jack so much. We were so busy greeting everyone and she made sure Jack sat and had his water and everything else he needs. He complied very well with her.He listened and wanted to sit with her. I think if it would have been us it would have been a struggle. All his teachers from Leap came and his best buddy the principle. That school and program has been such an answer to prayers in our life.

Today, Jack still has a little cold but it seems to be getting better. We are keeping are fingers crossed that he will be well enough for the MRI this Thursday and pretesting Friday. They changed his actually surgery date, but not the pretesting.

Please keep Jack in your prayers. This MRI is a big deal and he will be under the longest he has ever been under. That in itself poses more issues for Jack. Jack has two times of being put under and four other appointments in the next 3 weeks. Please pray he stays as healthy as possible for him and that everything goes well.

Update

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.

UPDATE

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.