Update 3

Ok, we are in the home stretch!  They are done the second foot, and closing.  They said closing would take 1 and 1/2 hours and that was about 1/2 hour ago.  I don't have any more info about this foot but will hopefully be posting the final doctors report soon.  I am so excited that things are going well.  We have seen some truly ill children today and it really makes me relect on how blessed we are.  2 girls were getting back surgery, one for a broken back and the other for a curved spine.  A little boy with a syndrome that caused his hands to be fused together was here to get a feeding tube because he just won't gain weight.  He was totally cute but so small and fragile.  I can not wait to hug my sweet boy and hear him complain that he wants a popsicle! (orange of course)  I forgot to bring the camera (ok, my hands were full with the laptop and his kindle and the blankets and overnight bag and purse and phone) anyway I will try to get some kind of picture as soon as I can. 

One Foot Done!

We just got the phone call from the surgeon.  One foot is done!  I was speaking to the nurse and she couldn't give me tons of details but she says it went well.  They did have to break bones and she said they actually used a saw to cut several bones apart and put them back together but we will get more information from the surgeon after he is done with the next foot.  I guess the right is done and now they are doing the left.  We are very pleased at how fast they are going and are anxious to get him un-intubated as soon as possible but things are going well.  Thanks and keep praying!

Update 1

Ok, they just began cutting.  It took them an hour and a half just to prep him but he is under the knife now.  We were told it would be at least noon before the next update but they are working hard.  Then anestheiologist said he was really sweet and calm and she was really impressed with how he did.  Everywhere Josh goes people really are touched by his spirit.  I wish I could say he got that from us but that is just proof that we lived as spirits before this life cause he just came that way!  Love you all, keep praying.

It Begins

He is in surgery, they took him at 9am.  We will be getting updates but they expect the surgery to take at least 6 hours, if we hit 6 and 1/2 we will match the brain surgery!  The actual surgery will not start till about 10, they are putting him under and then giving him IV's and an epedural so it takes some time to get him prepped for the table.  We laughed and joked all the way to the door where we left him and then I cried when he was gone.  I don't know why but this surgery is hitting me hard.  Maybe because we just don't what the outcome will be, or maybe because I know he will be in a lot of pain after but it was hard to see him roll away.  I will update today as we get news, please be patient, I know everybody is anxious.  Thanks in advance for the prayers we know are being said today, we need that more than anything.  We love you all.

Changes from the Ground Up

Well, we are at it again. After months of tests and enough blood drawn to suck poor Josh dry, we have no answers. Every test comes up negative or normal. Josh is an egnigma wrapped in a riddle. That is hard because it makes further treatment for some of his problems a shot in the dark. We went to a ortho surgeon to see about fixing his feet and getting him on the ground. It did not go well to say the least. First he told us he would not lengthen but actually need to sever the tendons to make a difference. Then as we got more into what it would actually take to correct his feet and found that they would also have to sever the tendons in all of his toes to make them spread out flat again instead of curling inward. He talked about putting a halo brace on both feet and Josh being in a wheelchair during recovery. This turned out to be the good news. Because of the test that showed a problem with the nerves instead of the muscles there is a good chance that Joshua would go back up on his toes in a couple of years anyway. Also, there is a possibility that the surgery could make Joshua worse instead of better. The long and short of it is that this doctor (who is very nice and highly recommended) will not do it. He has recommended that we see someone else. I do not blame him, there is a big risk to him to try this and he doesn't want to hurt Joshua but it really frightens me that this man who has lots of experience won't do it. I am sure you are thinking just leave him alone but as he gains weight and some height (thanks growth hormones) it is getting more painful for him to walk on his toes all the time. If he stubbs a toe he can not walk without pain for a couple of days. Also, it is starting to effect his participation in scouting activities too. They have just informed us that he can't go on any scout activity without Gordon with him because he is so far behind on the walks that they can't keep him with the group. That is a scouting safety thing, I know they are looking out for his safety. He is tripping and stumbling more too. We are going to go to the doctor that this one recommended but I am now very concerned. I see Gordon and I having to make a no win choice for him.
The other big concern for him is that he has still not fully started puberty yet and his bone age says he is running out of time. We see the endrocronologist in April and if something doesn't change they may have to start him on synthetic testosterone to try and get something going. Also not a good thing with lots of risks.
I do not post much now because I am trying to keep up with the kids and making life as normal as possible but I still worry just as much as always and we still need lots of prayers. I don't have the right to ask for anything because we have been blessed with so much but I just wish something could be easy for him. I want him to have something in his life that is normal and happen like it is supposed to. Please don't think we are totally disheartened, he is happy and we are enjoying our blessings. We still have no evidence of further tumor and that is everything! He is so proud (as are we) that he now has the priesthood at church and really works hard to be worthy of that. We still go day by day and do the best we can. I just think that it is important for our family to know what his struggles are so we can all still pray for answers. We love you tons!

Updates

Lots of people ask me what is new and how Josh is doing. I thought a post to keep you up to date would be a good thing. Except I don't quite know what to say. Josh is not doing well. But he is not doing badly either. We have had this summers MRI and it is good but he is getting harder to understand and now the doctors say his tongue is not working right. About 10 days ago he started saying that his tongue feels "twisted" and it makes him afraid to talk sometimes. That means he is declining but we still do not know why. They keep asking him if he has trouble swallowing and told us that if he chokes on liquid it will be very serious. Some days he is easier to understand but for the most part he slurrs alot. When you get the hang of it you can understand him but he is withdrawing into himself so much lately. He seems sad alot and thinks that he is the problem when people don't understand him. Especially when kids ignore him. I am heartbroken to see him so quiet around people. I see some depression and he seems tired more lately too. He is at scout camp this week with Gordon and luckily the boys there mostly know him and he is doing ok. Gordon took him for a drive this afternoon to nap in the airconditioning of the car and Gordon told me he is having fun so I am very grateful. I think the hardest thing about this latest problem is that we have nothing to fight. With the tumor we knew who the enemy was and what to do to help him. Now we don't know anything, there is nothing we can do. We just wait and watch him struggle. It is hard to watch him slip away and not even fight. Anyway, we ARE watching and taking him to all the doctors hoping someone can help. We will keep you posted as we find anything.

Things are getting Complicated

Ok, it is MRI time again. The results are in and it looks good. No new tumor and the spot from last time on his spine really was artifact, it did not appear at all this time. I should be thrilled but we got those results from a Neurologist who was opening new doors. Over the summer Josh has begun to have speech problems. It was suggested that this may have been from a mild stroke so they set up the appointment with Dr. Slopis (yes he is worth waiting 5 months for) Then the oncologist said it was just chemo decline so we kept the appointment to be sure but I thought he would spend 10 minutes with us and then agree with the oncologist so I was not worried. Well this appointment went in a whole new direction.
Joshua has the tip toe walking, now we see speech loss. They feel it is a muscle problem. However the legs are spastic (tight) and the facial muscles are flasid (loose). After this appointment we discovered that there is also a bladder issue that was not noticed that is also a muscle problem. Dr. Slopis thinks this all ties together in some sort of a genetic syndrome but he is not sure what. They are going to get a team together to make a plan on how to diagnose this because the cancer will confuse the problem. Let me stress this is not life threatening but is serious. He feels if we don't know what we are dealing with Josh could have problems later on. An example would be the bladder, if he doesn't empty it right he could have complications later that could be anything from infection to loss of a kidney. Basicly we need to find out what he has and then treat all these problems. So now on top of cancer poor Josh has some genetic problem. Also we thought the tip toe walking was not a big problem but Dr. Slopis says it is. It could cripple him as an adult so we have to know exactly what is causing it so we can fix it. It means that 2011 will have lots of doctors visits and invasive testing and possibly surgery on his legs at least.
I have been making lots of jokes today about this because we can't change it and I do not want to worry Joshua but I can't help thinking that this is not fair. Poor Josh has endured so much and now we are thinking that there is something new. A complication to cancer would have been bad enough but this is a whole new thing he has to deal with and there is nothing I can do to take it from him. He is a good boy and I wish so much he could just have a normal life, play ball like other boys (and like he wants to). Instead we spend so much time with doctors and there is so much he doesn't get to do. There is no point crying over spilt milk but I really was hoping for a quiet year and that is not going to happen. If I could ask you all for a Christmas present I would ask you to pray that they find answers fast and that whatever this is it will not keep Josh from his dreams more than he already is. I would also like to say that even though I am worried and so sad I am not forgetting my blessings. There are many and todays is the good doctor that is on the ball and looking at the big picture not a single detail. If we resolve this is will help Josh's future and that makes it worth it.